Tues. 11-02-04 18:30 -
Caden Gabriel Osborne was born this morning at 9:17AM. He weighed 5 lbs 14
oz at birth. Caden is doing fine. He had some assistance with breathing for a
while today, but he's off the breathing machine now. Initial results from tests
that have been run on Caden have given us no surprises. He is still looking at
open-heart surgery in a few days to a week. Wednesday 11-24-04 9:00
PM - Update: "All of these new things going on today wore Caden out." WOW,
is that quote from last night ever an understatement. Today was not a good day
for our little boy. Caden was put back on the breathing machine today and also
got some big lines put back into his thigh. Yes, this means we can no longer
hold him until these lines are removed. He got another blood transfusion and an
IV line in his head as well. Caden never really recovered from the exhaustion
that he experienced with the swallowing practice and other activities of
yesterday. His nurse yesterday was also making him cough up his goobers more on
his own. Most nurses have been a little quicker to suction him out for fear that
he might stop breathing. I believe that I have stopped breathing a few times
waiting on him to clear his throat. These activities seemed like pretty good
progress for Caden at that time. I guess we did not realize that this was
basically depleting Caden's energy reserve. I mentioned last night around
midnight that Caden was pretty exhausted. I did not realize how worn out he
really was until today.
Sherry is doing great and
recovering well. She is supposed to be able to hold Caden for the first time
this evening. More pictures to follow. HO
Thurs. 11-04-04 18:30 -
Well, It has been an eventful two days to say the least. I won't bore you
with the nasty details. The bottom line is that Caden is doing great on the NICU
grading scale. He has passed all test so far related to the 22q11.2 deletion.
For those of you who are not aware, there was a test two weeks ago that
displayed a possible chromosome abnormality. God is showing these doctors up
here who is really in charge. Caden is passing one test after another with
flying colors and the doctors here at MUSC are starting to doubt whether they
can actually classify Caden as having full blown Di George syndrome. At this
point, he is not showing any other markers than the heart defect which we have
known about since July.
Sherry is doing pretty good. She is up and
walking around several times per day and eating normal meals now. She expects to
be discharged from the hospital tomorrow or Saturday.
ME?...I am
standing with faith that God will see us through. Sherry continues to remind me,
"This too shall pass." I don't know where it originated, but Anne Marie Ezzo has
said it a couple of times in our parenting videos.
Thurs. 11-04-04
20:30 - Sherry and I just got back from the NICU. We have been told that
Caden is being relocated to the PCICU tonight. This is the ICU that focuses on
pediatric heart patients. They have been at 100% capacity since Caden was born
and now one of their eight beds is open. This will mean that Caden is one step
closer to his surgery. We have been told that Caden could get his surgery as
early as tomorrow morning. We are not going to count on that just yet because it
is Thursday evening and I would have expected to have signed a consent form by
now if the surgery was actually going to happen tomorrow. We will just have to
wait and see. Stay tuned for more information. I will try to keep this site a
little more current.
Fri. 11-05-04 01:50 - At this moment Sherry
is resting and I have just returned from the PCICU. Caden has settled into his
new area without incident. We were told earlier this evening that the surgery
will not happen until early next week. We should have more definite scheduling
information from the pediatric cardiologist later today.
I forgot to
mention how great of a time Riley and I had today. We played in the MUSC
Children's Hospital Atrium. It is a really cool place for the patients and
family of those here at the Children's Hospital. Riley is not allowed to see his
baby brother but he can visit Mom. He and I played and then had lunch while
Sherry and her Mom visited with Caden today.
Fri. 11-05-04 08:00 -
Update note from Sherry: Caden had an apnea spell while I held him Tues.
night so he was put back on the breathing machine. The medicine which keeps his
heart working till surgery has a side effect of apnea (stopping his breathing).
This side effect will go away right after surgery when the medicine is stopped.
They will keep him on the breathing machine till after the surgery. Caden had a
blood transfusion Wed. night due to low hemoglobin levels. He does not have a
high enough oxygen level in his blood due to effects associated with his heart
defect plus the longer he's here the more blood that gets drawn for tests. His
body just can't reproduce the blood as fast as they draw it out. Other
transfusions are possible in the future.
He has 3 separate IV's and a line in
his belly button each for a different purpose. They are running out of places to
stick! Caden is a trooper. He shows a lot of facial expressions like his brother
and can already lift one eyebrow like his daddy. He often responds by opening
his eyes when he hears our voice.
Oh, almost forgot. We finally know how
long he is...19inches!
Thank you all for your continuous prayers.
Back to Hank: We are on our way over to PCICU to see Caden now. We will
get back to you with more information later.
Fri. 11-05-04 11:00 -
Update We just had the most awesome visit with Caden. He seems so
peaceful and comfortable in his new home at the PCICU. Sherry got him to open
his eyes as you will see form the pictures. I will warn you that
the pictures are of Caden show him in his full ICU getup. Get the tissues ready
before viewing the pictures if you are a softy like me. Caden had a good night and
is doing good today. You will also see from the pictures that Sherry is looking
good too. I will probably get to break her out of this place later today so that
she can sleep in her own bed tonight. We will keep you posted.
Prayer
Requests: We thank you for your prayers. We ask that you all continue to
pray for Caden. Pray that God will heal his heart without surgeons needing to
touch him. Pray for God to guide the hands of all those who do touch Caden in
the next few days and weeks. Thank God for the protection and comfort that he
has given Caden. Pray that God will keep Sherry, me, and our family strong and
faithful. Pray that God will heal Sherry and give her physical comfort to be
able to travel back and forth to see Caden. Thank God for the blessings that he
has delivered to us through gifts, services, and words of encouragement from so
many different people.
Sat. 11-06-04 9:30 PM - Update: We
met with the heart surgeon this afternoon about Caden. They have scheduled Caden
for surgery on Monday morning at 7:30 AM. We will be at the hospital a little
before 6:00 AM on Monday so we can see Caden before the surgery. We learned from
the surgeon that Caden has a fairly unique anatomy relative to his heart and
arteries. There have been echocardiograms and CT scans run on Caden in the past
two days that provided information to the surgeons detailing Caden's anatomy.
The results of these tests have told the surgeons that the surgery will be a
little more complex than initially anticipated. The details are fairly technical
and I won't try to explain. It would take pictures and some terms that I cannot
even pronounce half of the time.
I have just made sure Sherry was tucked
in for the night and I am on my way to visit Caden before I turn in for the
night. Sherry is her own bed for the second night in a row. She was discharged
yesterday evening. She is doing okay, but she is very sore from the C-section.
Tue. 11-09-04 12:30 PM - EMAIL sent earlier today: I wanted to
take a quick moment to let everyone know how things are going. Caden is in
critical but stable condition. The doctors tell us that the first 48 hours after
this type of surgery is typically a roller coaster ride while the heart adapts
to its new configuration. Caden still has his chest open to relieve pressure and
allow for fluid to be drained off. He is not in pain. They have him in a
medically induced coma.
Sherry, I, and Darla (Sherry's Mom) came home in
the middle of the night to try to rest. My sister (Becke), my Mom (Priscilla),
and Sherry's Dad (Joe) stayed at the hospital last night. Sherry, I, and her mom
are headed back to the hospital in a few minutes.
I thank each and every
one of you for your kind messages, thoughts, and especially your prayers. I want
to give a special thanks to Adrian, Andrea, Darla, and Robin for stepping in and
taking care of Riley and our home. One if them should be around the house if you
do call there. Sherry and I will at the hospital if we are not resting. Sherry's
Mom and Dad as well as my sister and my Mom are taking turns at the hospital
with us.
A big thanks goes out to Rich and Julie Young, Eric and Karen
Olyejar, David and Jeanette Bulick, Kane and Leslie Wright, and Pastor Sherry
and the prayer warriors of Seacoast Church. You are all a wonderful moral and
spiritual support that is vital to us right now.
We will get more
information out as we are able to.
KEEP PRAYING!
All our love,
Hank, Sherry, Riley and Caden
Tues. 11-09-04 10:30 PM - I just
got off the phone with Caden's nurse. I am back home to get Sherry in bed. She
has become completely exhausted over the past 36 hours. Sherry is doing well
enough physically to be off of her pain medicine now for about 24 hours. Joe and
Darla are staying near to Caden when Sherry and I take a break. I will be going
back down for a little while tonight to check in on Caden.
Caden
continues to make slow improvements. This is a very good sign at this point. He
does still have an open chest with several drain lines as well as several ports
to monitor pressures in specific places around his heart. He will probably stay
this way for a couple more days until the fluid stops accumulating and the
swelling starts to go down. The doctors have been slowly reducing the medicine
that helps his heart to beat. They expect this progress to continue, but it will
not be a fast process. He may be able to get completely off of one of the
medicines by tomorrow.
A little history on the events of
yesterday. They took Caden off to surgery at about 6:15AM. Caden went
through the surgery with no major complications relative to open heart surgeries
of this type. He was out of surgery shortly after lunch time. Later in the
afternoon the doctors decided that Caden's blood pressure was dropping enough
over a period of time to make them want to take a look with an echocardiogram.
They found fluid building up around his heart and was not draining off via the
system that was already in place. The doctors opened the incisions on his chest
to relieve pressure from the heart and allow for them to remove the excess
fluid. The blood pressure did not react as they had expected and they started
more medicine to help the heart work harder to get the pressure back up. They
did another echo later and found that there was still fluid building up. They
investigated and found some non-blood fluids behind the heart. A drain line was
placed in a way to allow that fluid to be removed and the heart started picking
up steam. That was late last night (approx. midnight I think). Caden has been
improving ever so slightly since then.
Please understand that we are
getting your messages and have just not had a chance to return all of the calls.
It is all Sherry can do right now to balance out taking care of Riley's need to
see his Mommy and being there for Caden. She wants you all to know that she
appreciates each and every one of you and will take calls and return them as
time permits. Robin took calls for over three straight hours last night. There
was a two hour stretch when she never heard the phone actually ring because a
new call would come in over call waiting before she could get off another call.
Robin, her daughter Andrea, and my nephew Kurt have been awesome the past two
days taking care of Riley and your calls. Kurt was especially helpful when he
realized he was talking to a telemarketer yesterday evening. Kurt asked the
telemarketer, "Are you a telemarketer?" Their reply prompted him to say, "I
thought you were somebody important." He was referring to our friends and
family. That includes every person who has taken the time to visit this web site
and read this story.
Thanks again. Don't forget to look at the new
pictures. All of our love, Hank, Sherry, Riley, and Caden.
Wed.
11-10-04 11:30 PM - Update: We have a praise report tonight. Caden has
continued to improve little by little. The doctors and surgeons have scheduled
Caden to have his chest sown back up tomorrow. Sherry and I visited Caden this
evening after putting Riley to bed. Caden continues to improve ever so slowly.
Since last night he has been completely removed from the epinephrine and his
blood pressure remains steady. An echocardiogram was done today that showed
improvement in Caden's heart functionality from yesterday. The doctors are
planning to close up Caden's chest sometime tomorrow as long as Caden maintains
his current condition. He will still have drain lines in his chest to remove
fluid from around his heart. He will still be on the ventilator and several IVs.
He is being kept fairly sedated, but he does open his eyes quite often when he
hears Sherry or me.
One of Caden's little neighbors in the PCICU is not
having as good of a day. This little girl's condition reinforces how much we
have to be thankful for tonight. Her family is in so much pain. I reached out to
her father tonight and told him that I had just got done praying for his little
girl. Sherry and I held each other's hand while each of us took one of Caden's
hands and we prayed. We thanked God for his answered prayers. We prayed for this
little girl just lifted her and her family up to God. We asked God for continued
improvements in Caden's condition. Please continue to pray Caden and his little
neighbor. Also look around you and find something that you have to be thankful
for tonight in addition to God answering our prayers for Caden. I am thankful
for the support that I am getting from each and every one of you. You do not
realize how many friends you have until you get into a situation like ours. Our
family, pastors, close friends, small group members, my coworkers and managers,
neighbors, other families who are going through this, and other people that we
have never even met have been so warm and comforting.
THANK YOU AGAIN
!!!
Hank O
Fri. 11-12-04 12:30 AM - Update: We have
another praise report tonight. Caden had his chest closed today. We have just
called his nurse one more time before we go to bed. She reports that he
continues to do good as he has done all afternoon and into the evening. The
doctors completed the procedure to close Caden's chest this afternoon. Caden
still has two drain lines and several sensors running from his chest. These will
remain in for a while. He is still on the breathing machine and is fairly
sedated.
Caden's little neighbor had a much better day today. We talked
to her parents again. We plan to have dinner with them one evening during the
shift change while none of us can visit our children.
Fri. 11-12-04
8:00 PM - Update: Things continue to get better with Caden. He was allowed
to breath on his own for about 30 minutes today during a test. The doctors
basically turn the breathing machine on standby and let Caden do all the work.
They will continue this test about every six hours to exercise his breathing
skills. After a day or two of these exercises they will determine if he is ready
to be removed from the breathing machine. We expect the nurse to give Caden his
first meal to pass through his digestive track tonight. They will feed him via a
feeding tube and then check to make sure his stomach processes it ok. He will
not be fed by mouth until the breathing tube is out. He is still fairly groggy
due to pain medicine. They will continue to reduce the pain medicine as the days
go on to allow for him to be more alert. Caden had the lines removed from his
belly button today as well. He still has many IV lines, a couple of drains, and
several sensors. Those will go away slowly one-by-one as he gets better.
Caden's little neighbor had another good day as well.
The
prayers have been continuous for Caden, his PCICU friends, and our family. God
deserves all the credit for the information written above. The doctors, nurses,
therapist, and technicians are just his tools. We have been truly blessed these
past few weeks and I see nothing but promise in the future.
We have been
called and emailed by several people who have offered to do anything from
watching Riley, to running errands, cleaning, or fixing meals. Tonight our
friend Robin made an awesome spaghetti dinner. Robin has taken over for Sherry's
Mom as the primary care giver for Riley until next weekend. Robin will be doing
her best to keep Riley on his routine to allow for me to go back to work on
Monday and allow for Sherry to spend time at the hospital as needed without us
having to worry about coordinating Riley's care. Tomorrow our friends David,
Jeanette, and Hannah are fixing us dinner. Jamie and Amanda brought a basket of
goodies to the hospital today that was put together by the Mom's Club of Goose
Creek. These are awesome gestures and we appreciate each and every one. We have
not been able to return all phone calls and take folks up on every offer, but
that does not mean that we do not need the help. I will be the first to tell you
that we could not go though this without each of you. We have given Robin pretty
much run of the house and she will most definitely need some relief at times.
Please talk to Robin if you want to help out next week. She has agreed to take
the burden of scheduling anything since we are on the road so much. We do plan
to try and have dinner at home every night with Riley and put him to bed. Other
than that the rest is up in the air as Caden's progress will require more and
more of our attention as he comes off of the medication and moves to his own
room. Sherry will become much more involved in his care as the days and weeks
move forward. He will not get the benefit of having the one-to-one
nurse-to-patient ratio when they move him from PCICU. Yes, Caden has more care
than you can shake a stick at and every single person has been awesome.
Thanks Again!!!
GOD Bless you,
Hank O
Sat. 11-13-04
11:30 PM - Update: It was another great day for Caden. He got one of his
chest drain tubes removed and he was taken off his Morphine and Versed drips. He
was also taken off of his Lasix drip. He will still get these medications as
needed but he no longer requires them constantly. Caden continues to pass his
breathing exercises with very few problems. The doctors are considering removing
him from the breathing machine on Sunday. This will happen as long as he becomes
more alert as the narcotics wear off. Stay tuned for new pictures as soon as he
comes off the breathing machine. ;-) Oh yeah, they started feeding him breast
milk today via a feeding tube running directly to his stomach. He was taking
12ml/hr into his stomach when we left at about 11PM tonight. He has been getting
fed through his normal digestive track for over eight hours now. Yeah!!! Caden
will get a chance to demonstrate his swallowing abilities once the breathing
machine is removed.
Mon. 11-15-04 06:30 AM - Update: I went to
see Caden this morning before returning to work for the first time. Caden had a
great night and a pretty good weekend. He was not removed from the breathing
machine this weekend as we had hoped. The doctors felt that Caden needed a
little more time to gain strength before being removed. I saw his doctor this
morning and he told me that Caden was looking good today.
Hank O
Mon. 11-15-04 9:30 PM - Update: It has been another great day for
Caden. He was removed from the breathing at about noon today. He also had one of
the lines removed from his chest. He was not fed for a while today due to being
removed from the respirator. He did get IV fluids during this time. He started
to get milk again at 8PM tonight via the feeding tube running to his stomach by
way of his nose. He is resting good thanks to some medicine.
Please keep
Caden in your prayers. He is still considered to be in critical but stable
condition until he is released from the PCICU. We do not have a firm estimate on
when he will move to 7C. (7C is a Unit for Pediatric Heart Patients at the MUSC
Children's Hospital) This unit is the step between the PCICU and going home. The
doctors believe that Caden could be transferred to 7C by the end of this week or
early next week as long as he continues at his current rate of improvement. The
average time spent in 7C is approximately 2 weeks. This will be completely
determined by Caden's ability to eat like a "normal" newborn.
Blessings
to you all.
Hank O
Tues. 11-16-04 11:30 PM - Update:
Today was not the best day Caden has seen. The doctors had to place a new
drain tube into Caden's chest between his ribs. This drain will allow some
non-blood fluid to be drained from an area called the Thoracic duct behind the
heart and lungs. This duct is were a bunch of little vein like tissue gathers
liquid that is mostly fat cells and delivers the liquid into the blood stream.
Caden has a leak of this duct or the tissue that comes together to form the
duct. This is not uncommon for his type of surgery. The duct is very fragile
tissue and can easily be torn or nicked during Aorta repair. Most patients heal
fine with a drain and by eating things with a lower fat content. That said,
Caden has been put on a formula that contains very little fat. This should
minimize the amount of liquid collected and promote faster healing. This is a
game of wait and see. This drain placement is nowhere near as serious as the
ones that were put in place last week when his chest had to be reopened. The up
side of this drain is that it relieved the pressure being put on Caden's lungs
that was causing him to not be able to take very deep breaths.
The
doctors did remove the other central line running directly to Caden's heart. All
of the work today has made Caden more comfortable. He had a very fussy morning.
The doctors and nurses believe that his fussiness was most likely from the
pressure buildup caused by the collection of the fluid.
Caden started
practicing his sucking skills with a pacifier today. This is a new skill for him
even though he is two weeks old today. He has never had to suck because he has
had a ventilator tube in his mouth from the day he was born until yesterday. He
is still getting fed though a tube at this point. He will get a swallow test
before they attempt to feed him by mouth. They will do this test with a barium
substance in front of an Xray machine. This is of particular interest with Caden
since there can be some GI track problems associated with Di George Syndrome.
Thankfully there have been no other symptoms associated with Di George other
than the congenital heart defect.
Please keep Caden and the rest of our
family in your prayers. These days are expected in the recovery process of an
open heart surgery, but they are still not easy days for any of us.
Wed. 11-17-04 11:45 PM - Update: Caden had a much better day
today. I just got home form the hospital and he was resting fine when I left
him. There were no big developments today to report. Caden rested a bunch after
having a pretty active morning. Unfortunately we missed his awake time because
he was asleep by the time Sherry arrived at the hospital and was allowed back to
see him. We can visit him pretty much 24/7 except during the two shift changes
at 7AM and 7PM. There are plenty of exceptions to this rule and many of those
came up today. They ask that only staff be in the PCICU when any patient returns
from surgery or when any patient is getting some procedure done at the bedside.
They also ask for everyone to clear out when a new patient is admitted.
I have been asked by several people to describe DiGeorge Syndrome. The
bottom line is that DiGeorge is one name given to an abnormal 22nd chromosome.
It is also referred to as a 22q11.2 deletion or VCFS (Velo-Cardio-Facial
Syndrome). This means that the 11.2 band of the Q (long) arm of the 22nd
chromosome is missing. The visible symptoms of this chromosome abnormality vary
GREATLY. There is a laundry list (186 on VCFS.ORG) of possible complications
associated with 22q11.2 deletions. Most people only show signs of just a handful
of these symptoms. Caden has only shown the heart defect and a slight calcium
deficiency at this point. The doctors are hesitant to tie the calcium deficiency
to DiGeorge at this point because it is a fairly common symptom with
non-DiGeorge babies with heart defects.
The best resources I have found
on the web concerning DiGeorge and 22q11.2 deletions are at the Children's
Hospital of Philadelphia (CHOP.edu) and VCFSEF.ORG. Use the following links to
visit their web sites for more information:
Children's
Hospital of Philadelphia
Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation, Inc
Sherry and I are constantly asked how we stay so positive through all of
this and I look forward to each person who asks. It is our faith and trust in
Jesus Christ and I am proud to share that answer. We are not in control of this
situation, God is in control. We don't even know what tomorrow will bring to us,
but we know that we will be able to handle it with his help. We have had moments
where we have needed to get our heads straightened back out because we let fear
and doubt consume us both. Fortunately we have a strong group of Christian
friends who look after us and quickly answer the call at any hour for us to lean
on them for prayer, comfort, support, understanding, and direction.
Thursday. 11-18-04 10:45 PM - Update: Caden is doing good today
but he could be better. He had to get a blood transfusion this morning. I
believe that this is mainly caused by the amount of blood that is drawn from
Caden for lab tests. His little body just cannot reproduce the blood as fast as
they need to pull it out to monitor his health. He also was put back on oxygen.
He was not put back on the respirator, but rather given that little tube to
trickle oxygen into his nose. The doctors also sent some blood and other fluids
in for culture tests today to see if Caden might be getting an infection of some
kind. They would not speculate on where the infection might be hiding. Caden has
been breathing a little faster over the past 24 hours in addition to running a
low grade fever last night.
Sherry got some really good time with Caden
earlier today just before lunch when he woke up and opened his eyes wide for a
while. Caden was resting good tonight when I left him.
Friday
11-19-04 Midnight - Update: Caden had a good day. Caden was rolled into a
new bed space in the PCICU late this afternoon. There are four bed spaces that
have a bunch of room around the beds. Caden was occupying one of those large
spaces until today. Another child in the unit got really sick today and required
a bed space that would accommodate a large group of doctors and equipment. Caden
was the one chosen to move. It is kind of funny that he got moved today because
the nurses were joking about him being in bed space #1 for so long. Caden is
actually back in the space #8 where he was prior to his surgery. We like to
think that he was chosen to move because he doing good and will not need any
large spaces for lots of doctors ever again.
Caden was scheduled to get
some of his IV type lines changed out today. He has a couple of lines in his
upper thigh that have been in since his surgery. They run up to his heart and
provide very accurate real time blood pressure. One allows for larger volumes of
medicine to be given. One of them is starting to leak a little and they are
going to replace it with what is called a PICC line. A PICC line goes in the arm
usually. The special thing about a PICC line is that it runs almost all the way
up the vein to the heart. This line also allows him to receive larger doses of
some medicines that would not do so well going in a normal IV. The nurses
attempted to deliver the line to his right arm, but had problem getting it in.
Another nurse will try another location tomorrow. The most significant advantage
for getting the PICC line is that we will get to hold him for the first time in
two weeks. YEAH!!! The line in his thigh prevents us from being able to hold him
and it will come put as soon as they get a PICC line in. The down side to a PICC
line is that it will not allow for blood to be drawn off. They will have to
prick his little foot for blood samples in the future.
There are some
new pictures un the week 3 section of this site. Enjoy.
Monday
11-22-04 8:00 AM - Update: Caden had a pretty good weekend. He is still in
the PCICU. Today marks day 15 in PCICU after surgery. Caden continues to improve
ever so slowly. He did get lines removed this weekend that allowed us to hold
him. We took lots of pictures.
The doctors did find signs of an
infection this weekend. The infection is related to those lines in the thigh.
The lines are normally removed after so many days and Caden's were well over due
to be removed. He is such a little guy that they had a hard time getting
replacement lines in him. The PICC line that they were trying to get in was
never put in. They tried twice with two different nurses on both of his arms.
They finally decided that the lines in Caden's thigh needed to come out even if
they had to deliver medicine via other means. They decided that a peripheral IV
line (normal IV) would be fine for most medicines and they were planning on
getting blood from his heal even if he had a PICC line. The other medicines line
calcium can be given orally through the feeding tube. Caden also got his
catheter removed yesterday. You will see from the pictures that Caden also got
his oxygen removed and he is breathing room air with no assistance.
Caden did give a little scare late yesterday evening. He tends to have
quite a bit of secretions that are often kind of gummy. These gummy secretions
can cause Caden to cough and get a little choked. He was given a medicine via
mouth that we believe aggravated his secretion problems and caused him to get
even more choked than normal. Caden normally gets a few pats on the back from
the nurse and then he coughs enough for her to use the goober grabber (suction
tube kind of like the dentist uses). This worked for clearing him up after the
choking spell. You have to remember that Caden has not had to swallow yet. His
is three weeks old and he has never had to swallow. He should get his barium
swallow test sometime in the next week. He recovered from this fine and was
given a chest X-ray to make sure he did not get any in his lungs. Sherry and I
wonder some days why he has not moved to his own room on 7C and yesterday Caden
reminded us himself that he requires a little more attention right now.
Caden does continue to improve. We do not realize how much a blessing
his improvements are until we look around us. The PCICU is located on the 4th
floor of the main Medical University Hospital. This floor contains almost every
type of ICU you can imagine. PCICU is the only children's ICU that I am aware of
on this floor. The other ICUs take in patients from the worst illnesses, car
accidents, stabbings, gun shots, and industrial accidents in the Low Country and
beyond. We have sat next to families for weeks now where they are waiting to see
what will become of their loved ones who have been involved in things that we
are reading about on the front page of the newspaper. Most of these folks have
positive outcomes due to God's grace and the skills of the MUSC staff. We also
sit next to other parents who have children in the PCICU. There are as many as
eight families with kids in PCICU at any given time. Some kids have come and
gone with great success. Others wait next to us for that much anticipated ever
so slight improvement. Caden's little roommate from last week continues to
improve, but she is also still in the PCICU. Some have not be so fortunate as
Caden and his little friend. I have not heard of anyone experiencing a loss and
I hope I do not. One family that came in this past week has watched their child
slip away almost as steadily as we have seen Caden improve. It is so difficult.
Sherry and I don't know what to say. I have offered to do anything I can to
comfort them. I pray for them everyday and I have offered to pray with them.
This family's situation reminds us how fortunate we are. Some days it makes us
almost feel ashamed of getting so happy about Caden's little improvements.
I would like to ask for one other prayer request this week. Many of you
already know, but for those who do not, Caden's Great Grandfather is ill. He is
in the NHC nursing home in Clinton, SC. I was able to visit him the week before
Caden was born. His name is Haskell Williamson "PaPa". He was diagnosed with
terminal cancer over a year ago. PaPa's doctors called the family in the week
before Caden was born. I went and PaPa did as we would expect him to do, bounced
back. He has had a couple of days out of the past few weeks where he has been
out of his bed in a wheelchair being the PaPa we all know and love. He has not
been doing as good the past few days. PaPa is my Mom's father. My Mom (Priscilla
Hayes) has been looking after him for a few years now since my Grandmother
passed away. PaPa is a great guy and means more to me than most people can even
imagine. I am proud to be his Grandson. Please pray for his comfort and healing
as God would see fit. Everyone's day must come. I just ask that God gives PaPa
comfort until his day comes. Papa has seen Caden's pictures and says, "there's
nothing wrong with that boy! Why don't they let him go home?"
There are
lots of new pictures (20) on the week 3 section of this site. Enjoy.
Blessings to you all.
Tuesday 11-23-04 Midnight - Update:
Today was a big day for Caden. He made some great progress, but at the same
time he exhausted himself.
Today Caden was started on just a few drinks
of clear liquids (Pedialyte) from a bottle. This was given to him to make sure
he could actually swallow and to exercise that reflex a little bit. This is
pretty hard work for a such a little guy like Caden. Caden was also fed a little
differently today. He has been getting about 17 ml/hr of formula via the feeding
tube that runs directly to his stomach via his nose. He is still getting all of
his feedings this way, but today they compressed three hours worth of feeding
into two hours and then did not feed him for one hour. So they gave him 25.5
ml/hr for two hours and the nothing for one hour. This still adds up to the same
total amount of formula in a day but they are trying to condition his digestive
system to be more like that of a "normal" baby where they eat for a while and
then wait a while before eating again. I expect from what the nurses are telling
us that they will get to 51 ml/hr for one hour with nothing for a two hour
stretch here soon.
All of these new things going on today wore Caden
out. I left him about an hour ago and he was exhausted. He was so worn out that
the doctor actually put him back on a little bit of oxygen and cancelled his
Pedialyte sessions for the remainder of the night. I think they are going to
give Caden a little break.
I have actually heard a few doctors and
nurses say they are afraid of Caden. I have questioned these comments and they
tell me that it just means they are taking things extra slow because he is such
a little guy. Caden has not shown quite the spunk that some of the doctors like
to see before pressing on to the next level. There are an equal number of
doctors who like to challenge little guys like Caden. There seems to be a
healthy mix of both schools of thought and Caden seems to be getting just the
right amount of progress.
There are six new pictures on the week 4
section of this site. Please let me know if you have any problems viewing any of
the pictures on week 4. I am trying a new way of displaying the pictures
tonight. Enjoy.
Blessings to you all.
Hank O
PS: Caden's
little friend from last week continues to improve as well. Her parents had good
reports of small improvements with her today as well. The other family that I
mentioned yesterday that came in recently are gone. There are no signs of their
child and the nurses would not tell us even if we asked. Please just ask God to
give this family comfort. I know that things were not looking good when I talked
to them last and it ran chills up my back to see that room empty last night.
Sherry realized that a different child was moved into that room today and she
asked me if I knew what happened. I told her that I know that he was not doing
good. I know he was no longer in the PCICU as of today and that I have not seen
the parent for over 12 hours. Sherry's eyes filled with tears and chill bumps
became visible all over her arms at the thought of what those parents might be
going through. There was nothing that either of us could say.
I hope
this story gives you a little bit of a clue as to how emotional this situation
actually is for Sherry and me. The amount of emotion and stress generated by
this situation is more than I can begin to describe. I have an awesome God, the
greatest wife a man could ever dream of, a great family and group of friends
that just keep surprising us. Everything that has been done by family, friends,
co-works, and neighbors has helped us keep our focus on taking care of each
other and our boys. I cannot express my thanks enough for the support that we
are getting. We appreciate every note, call, email, visit, and prayer more than
you could ever imagine.
The doctors have been concerned that the amount
of formula they are giving Caden should be causing him to gain strength and
weight but this is just not happening. There are two primary causes. Either the
feedings are passing right through with no real breakdown in the digestive track
or Caden is burning the calories some other way. They doctors sent off a stool
sample and found that Caden is digesting the fats and sugars from the formula
just fine. They are still waiting on results concerning the protein breakdown.
The doctors realized that the most energy intensive thing he does otherwise is
to breath. The doctors believe that putting Caden back on the breathing machine
will take away Caden's need to burn calories from breathing since the machine
can do all the work for him. This should allow Caden to sit back and beef up a
little now from the calories conserved by not having to work so hard to breath.
This is not the only reason for the breathing machine, but it would almost
justify it from the way the doctors talk. The main reason Caden was put back on
the breathing machine is because he was just not getting the job done on his
own. The doctors saw a trend in Caden's breathing today that signaled an
emergent need for the breathing machine in the middle of the night if they did
not go ahead and put him on the machine now. Caden was also running about 102
degree fever this afternoon. All these things added up to a possible bad seen
coming if they did not do something now. This did not come as a complete suprise
to Sherry and me but we did expect to see it a little sooner after they removed
Caden from the breathing machine if it was going to happen.
There was
OEM good news today. Caden received an echocardiogram today. This is not a
special Thanksgiving message. This in an ultrasound type of thing they do on his
chest to watch the heart do its thing on a monitor. Caden's heart is working
good. The doctors said that all of the repair work from the surgery is intact
and the heart is working as good as they hoped. Caden also got his daily chest
x-ray and it showed no signs of fluid buildup problems with his heart or lungs.
We expect Caden to remain in the PCICU for at least another week given
today's events and conversations with the doctors. As a matter of fact, we were
led to believe that Caden will probably be on the respirator for up to a week
before they think about taking him off. The doctors really want Caden to show
signs of gaining strength and weight before looking at any more big changes. One
doctor did step out on a limb and tell us that we could probably safely expect
to have Caden home by Christmas. Please keep in mind that we originally were
expecting to be nearing home by Thanksgiving. We had no idea that Caden would
still be in the PCICU 17 days after surgery. The average is about five to seven
days stay for a child in the PCICU after surgery. The kids then spend an average
of about one to two weeks on 7C.
Please continue to pray for healing.
Specifically Caden needs to gain weight and strength. Caden still is fighting an
infection in his blood and needs healing there as well. Sherry and I need your
prayers too. We are both so tired. We need strength. We also need a date. We
plan to go on a date this week no matter what else we get done. We have family
in town to watch Riley and to sit with Caden. We also have a gift card to one
our favorite restaurants.
Blessings to you all. Have a happy
Thanksgiving.
Hank O
Turkeyday 11-25-04 Midnight - Update:
Today was another tough day for Caden. It is midnight and I have just got
off the phone with the PCICU. They are trying to get new lines (IV type) in
Caden. He still requires a high dose of some medications at times that just
don't go into regular IV lines very well. The big arterial line that was put in
his thigh area last night went bad today. They had to pull it out. They were
going to look for another shot at putting in a PICC line and/or an arterial line
tonight. Caden's breathing machine settings were turned down today which means
that he did not need the machine to work very hard for him so they can run it on
lower settings. He also had some changes to his feeding again. This time they
went down on the calorie concentration of the formula and up on the volume. The
trade-off is that ultimately he is getting a few more calories per day total
since they went up on the volume by about 25% and down on the calorie
concentration by about 20%. They did this to get more fluid flow though him at
the same per day nutritional value.
The tough thing about the feeding
and respirator changes is that they do not add up to what the doctors told us
yesterday. The doctor on today was one that we have never seen before and I
believe he was covering just about every critical care pediatric unit in MUSC
today single-handed. We ended up having a conference call with him at about 9:00
PM tonight to make sure he was on the same page with Caden's doctors from
yesterday. We wanted to ensure that changes being made today were considering
the long-term goals for Caden to gain strength. We are a little skeptical of the
whole team approach to critical patient care at times. It is hard to comprehend
how all these folks can always be on the same page when they say that they have
meetings a coupe of times a week to discuss patients. The fact is that many
things can change in 12 hours that can completely negate any discussions a group
had 24 or 48 hours ago. Some of the doctors try to get us to be a little less
observant of their activities. The problem is that all of the doctors do not
give us a warm feeling that they're communicating with each other all of the
time. Caden is a fragile little guy and he does not need anyone going off on a
wild goose chase because of a specific problem without being fully informed of
all of Caden's issues and goals that might be affected by their changes.
I apologize if I sound like I am venting, but I am doing just that. It
is very frustrating for Sherry and me. It was so frustrating for me that I did
not even participate in Thanksgiving dinner today. I was in such a foul mood
after visiting the hospital and talking to the doctors that Sherry and I agreed
that I should just keep to myself for a while. I probably would have just got
something stuck in my esophagus anyway. My esophagus problem seems to be
aggravated when I am very stressed or upset. I am getting my problem corrected
next week during an out-patient visit to MUSC on December 1st.
We have
been in this situation for almost a month now. Caden is very near to the
condition he was the day after surgery almost two weeks ago. Our lives are also
getting more complicated at home because Riley shows more signs of being
affected by this every day. Our assistance with in-home care for Riley is
becoming more difficult to maintain. We have tried to maintain Riley's
environment and routine as much as possible by having someone stay here at our
house with him. While our family and friends have done wonders for us, they too
have lives with families and homes to care for. On top of all this, I am
completely out of vacation time and now have to start borrowing time off or
start "trying" to work. I cannot afford to take leave under FMLA since I would
have to be off without pay. All these things among others are what I am thinking
about tonight.
I was told by my sister that I should have received
emails from some folks at her church. Unfortunately, I have not received any of
those messages. The reason is because I have not posted an email address for you
to contact Sherry and me directly. The other email address
(caden-info-subscribe@hoei.com) listed is only to join the email subscriptions
for when I notify folks that this site has changed. You can send email directly
to us at: osbornefamily@hoei.com
Please resend any messages that were previously sent that you think may not have
been delivered.
I truly hope your Thanksgiving was a good one. Please
keep us in your prayers.
Hank O
Friday 11-26-04 10:15 PM -
Update: Today was a much better day for Caden. Caden looked much better
today from our point of view. His color is good and he actually looks a little
more filled out in the face. He did finally get his last drain line removed
today. This is the one that was put in a while back to drain that fatty liquid
from behind his heart and lungs. The line has shown almost no flow for several
days. This is really good since he has also been off of the Octreotide for a
couple of days. This was the medicine that was administered to reduce the
production of the fatty type liquids.
Other than removing the drain line
it was largely an uneventful day after the doctor got done poking Caden with IV
lines in the middle of the night. I finally went to bed sometime around 2:00 AM
last night. I was keeping close contact with the PCICU. The doctor and nurses
had been working on Caden for at least four hours trying to get a PICC line,
arterial line, and new IV lines in him. They finally got a couple of peripheral
IV lines in. One in his left foot and one in his left hand. This was after
shaving part of his head and trying many other places that were unsuccessful.
Caden was sedated for this time and did not have to experience any pain. He
looks a little like a punk rocker today, but it seems to suite him well.
As for Sherry and I, well we did go on that date today. We had a
wonderful dinner and we went to a movie. It was our first real date in about six
weeks.
Many of you have sent messages of support and understanding.
Others have expressed support in other ways such as praying for us, praying with
us, caring for Riley, fixing our family meals, mowing our lawn, providing us
with gift cards, and just hugging our necks. There have been a few of you who
have shared advise from being in a very similar situation. All of you have been
so awesome and we will never be able to thank you enough. Sherry and I have been
through pretty extraordinary events in our lives. For me, this situation tops
them all. For those of you who know me well, you know that this is a huge
statement.
I really do have my head screwed back on straight today
despite the events of yesterday and starting my day off today a little rough. My
morning today was clouded with miscommunication and folks just not seeming to
take the time to try understand what Sherry and I were saying. We have moments
of what seems to be complete crazy responses to questions after you stop and
think about it. I believe it is because we are so buried in our thought and
concern associated with each other and our boys. Yesterday was filled with fear
and doubt concerning Caden's care. I find myself getting caught up in doubt and
fear over and over again. I am reminded by a Bible verse that these feelings are
not from God. I learned the verse as a memory exercise so many years ago at
Calvary Baptist Church in Clinton, SC. The verse is 2 Timothy 1:7 "For God hath
not given us the spirit of fear, but of power, and of love, and of a sound
mind." That verse helped me though many tough times since I was a small child
when I had times almost as scary as I have had in recent weeks.
Thank
you for your concern and love for our family. May God Bless You and Yours!!!
Hank O
Sunday 11-28-04 10:30 PM - Update: Today was a
pretty good day. Caden was weighed and measured. He weighed in at an even six
pounds. He is now twenty inches long. For those of you who have not been keeping
up, those are GREAT numbers. Caden did have to get a blood transfusion today.
The transfusion did cause the IV in his left hand to blow out. It is a little
swollen and bruised. Basically it matches his other hand. He looks like he has
been beating up on the nurses. The IV in his left foot stopped working today so
now they are down to having only one IV and it is in his right foot. I don't
believe I have mentioned before that they tend to give him some sodium
bicarbonate in his IV once a day it seems. This drug helps maintain the PH level
of the blood. Some babies get a little acidic and Caden does at times. This drug
helps bring his blood back to a more neutral PH level. They started today giving
him a little different solution that will accomplish the same thing, but it will
be delivered via Caden's feeding tube. They are looking to get away from using
IV lines as much as possible since they have such a hard time getting IV lines
in him. The new process will have a slower reaction time to change Caden's PH
level, but the doctors are confident that it will get the job done. They have a
certain degree of predictability with his PH level now since they have had so
long to get to know him in the PCICU. Tomorrow marks three weeks since Caden's
surgery. Caden will be one month old this week.
Caden's little friend
that I mention every so often is the only child in the PCICU who has been there
longer than Caden. I talked to her parents at length last night and it looks
like she may get to transfer to her own room in a few days. Praise the Lord. I
was kidding with her parents a little last night. I told them that Caden is
following their daughter's every move so they had better get moving. She was
born three days before Caden. She had her surgery three days before Caden. Who
knows, maybe Caden will go up to 7C three days after her. That would be great
wouldn't it?
Anyway, I saved the best news for last. Sherry got to hold
Caden again today. She was lit up like a Christmas tree when the nurse told her
to slide that rocker over near to the bed. We had just helped give Caden a bath
and he was wide awake. He fell asleep in her arms. It was so beautiful watching
her with Caden. WOW! I am blessed with such a wonderful wife and two awesome
boys. I thank God for these blessings everyday.
Thank you again for your
concern and love for our family. May God Bless You and Yours!!!
Hank O
PS: I added four new pictures to the Week 4
PICs. Enjoy.
Tuesday
11-30-04 01:30 AM - Update: Today was another pretty good day.
Caden was started on the CPAP trials. This is where they give him 30
minute test runs with the breathing machine in standby mode. He did
great on the first two trials at 4 PM and 10 PM. The doctors are
considering taking Caden off the breathing machine tomorrow or
Wednesday. We learned today that Caden's infection seems to have
cleared up. His ten day cycle of IV antibiotics will be completed
tomorrow. Caden did get a new IV in his right hand today due to the
one in his right foot going bad. Since the doctors have found other
ways to deliver his other medicines through the feeding tube, they
should not require the IV line after tomorrow. That is just about
all of the news for today.
Thank you again for your concern
and love for our family. May God Bless You and Yours!!!
Hank
O
Tuesday 11-30-04 11:30 PM - Update: Today was another good day for Caden. The doctors decided to leave Caden on the breathing machine for another day or two. Caden was ready to come off the machine today as they anticipated, but the doctors want to give him a couple more days while they sort out the answers to another question. Caden has had very loose stools for several days. There are a number of possible reasons why and the doctors want to get this problem figured out and heading in the right direction before removing him from the respirator. Caden is stable otherwise. The doctors are still a little scared of him and are keeping him in the PCICU for a little longer. The cardiologist are very happy with Caden's heart functionality and are just trying to get all the other little issues sorted out. One doctor joked today about Caden being in a cardiovascular intensive care unit and he is having no signs of trouble with his heart. They called in the Pediatric GI (gastrointestinal) folks today to assist with treating Caden's current problems. I won't go into all that they are looking at right now, but I will say that Sherry and I are comfortable with their approach.
Speaking of GI folks, I will be visiting the adult GI clinic myself tomorrow. This is a planned outpatient procedure for me that I have to get done every two or three years. Please keep Sherry and me in your prayers tomorrow in particular. I need your prayers for obvious reasons. Sherry will be dealing with two of her three boys being in the hospital at the same time tomorrow. Caden needs your prayers for healing of his digestive system. Riley needs your prayers for peace and understanding of all that is going on around him as Sherry and I come and go to the hospital. We all will pray for blessings to be returned to all those who are doing so much to make our lives less complicated during these very emotional and exhausting days.
PS: I am including a few links to help you better understand the surgery that Caden had performed on him a few weeks ago. I am also including the links about the 22q11.2 deletion. The first link is the best. Caden had a Interrupted Aortic Arch (IAA) Type B with a large ventricular septal defect (VSD). There is a link just above the picture of the heart on the Children's Hospital of Cincinnati page that explains the surgical procedure that was performed. Caden had a couple of other unique anatomy issues that altered these procedures, but this is the best description that I have seen yet.
Description of Caden's heart defect from Cincinnati Children's Hospital Medical Center
A description with graphics of Caden's heart defect from the Children's Hospital of Wisconsin
Children's
Hospital of Philadelphia (CHoP) information on 22q11.2 deletions
Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation, Inc
Thursday 12-02-04 09:30 AM - Update: Caden has been doing okay since my last posting. Caden is still on the breathing machine and the doctors have sent off a ton of tests. They are mainly just wanting to monitor him to see if he gets better as a result of the antibiotics wearing off. If the digestive problems have not been caused by the strong antibiotics used last week to treat his blood infection then they will start taking action based on the test results that they are waiting on.
Everything went fine for me yesterday. I was pretty wiped out when I got home. Sherry was amused by how much I keep forgetting things due to the medication I was on yesterday. Sherry made it through the day surprisingly well given the circumstances. I think it helped that the nurses let her hold Caden yesterday. I will try to leave a new update tonight.
Thank you again for your concern
and love for our family. May God Bless You and Yours!!!
Hank O
Friday 12-03-04 05:30 AM - Update: Caden has been doing good for the past 24 hours. Caden has done great on his CPAP trials which exercise and test his breathing while the machine is in standby mode. We expect to hear the doctors talk about removing the breathing machine in the next day or two. Caden's diarrhea continues to go away. Caden's daily lab results (blood tests) have come back good two days in a row. They are so good that the doctors have not needed to make adjustments the PH of his blood in two days.
I know it is a weird hour to get an update. I ended up staying with Caden last night. He was doing okay but the nurses seemed to have a harder time getting Caden settled. I just did not feel comfortable leaving Caden with folks that might not be able to settle him. Too much excitement right now could tire him out very easily. I stayed through the night and Sherry relieved me at 5:00 AM this morning. Caden is becoming much more aware of his surroundings and he is reacting to Sherry and me when it comes to comforting him. He did great all night long. I got to hold him for about an hour and a half yesterday. Sherry got to hold him again too.
Please know that your prayers are being answered. Caden is acting much more like a one month old every day. Yes, he turned one month yesterday. We can not thank you enough for your continued prayer and support. Caden is a great success story for what God will do if you just ask and you get a front row seat.
Thank you again for your concern
and love for our family. May God Bless You and Yours!!!
Hank O
If you are in the Charleston area you may be able to hear our story on the radio. A local FM station Coast 92.5 is running a "Coast-A-Thon" to raise money for the MUSC Children's Hospital. We were asked if we would like to tell our story over the radio. The Coast-A-Thon runs through tomorrow. Our story has not been aired yet, but it may happen tomorrow.
Friday 12-03-04 NOON - Update: I just got up and called the hospital. Caden is off the breathing machine. YEAH!!! Sherry was holding him so I did not get a chance to talk to her. I will update you more later. HO
Friday 12-03-04 8:30 PM - Update: I just got a call from the hospital. Caden has had his last IV line removed. At this time he has absolutely no IV lines. YEAH!!! They did not replace the line with a new one because Caden no longer requires IV medication. The doctors want to monitor him for a couple of days to make sure he maintains his strength before moving to the next step which will be feeding changes. Now that Caden has no IV lines and no breathing machine, we can hold him even more often. Up until now we have only been able to cradle Caden in our arms when holding him. I can not wait to hold him on my shoulder with his head against mine. Caden does still have wires running to his chest (I call them jumper cables). These are used to hook a pacing machine to him in the event it is ever needed. This is standard equipment for heart babies and does not affect how we hold him. We are suppose to be able to hold him on our shoulder for the first time tonight. Caden will remain in the PCICU until the doctors get a little more confident with Caden's strength. Caden did weigh in today at 6 lbs 2 oz. Now that the nurse shift change is over and I have tucked Riley into bed, I am off to hold my baby boy Caden for a while.
Sunday 12-05-04 09:30 AM - Update:
Caden is doing great. He continues to have good blood test results. He is looking and acting more like a one month old little boy every day. He will probably be left alone by the doctors until tomorrow. We are now allowed to walk in and pick up Caden without a nurse assisting us. That seems like such a little thing but it is a big deal to us. Caden only has a feeding tube running into his nose. The other things attached to him are sensors attached using tape and his blood pressure cuff.
I have posted some new pictures that were taken yesterday. Enjoy.
Thank you again for your concern
and love for our family. May God Bless You and Yours!!!
Hank O
Sunday 12-05-04 Midnight - Update: Caden is still doing great. Sherry
and I spent a good bit of time with Caden this afternoon and I went
back down after dinner this evening. We both got to hold him for
what added up to be hours between the two of us. Caden fell asleep
on my shoulder today just like Riley used to. It was so cool.
Now, I don't want to get anyone too excited but, the surgeon
hinted today that Caden just "MAYBE" will get a ticket out of the
PCICU by the end of this week if he continues to keep his strength.
He did say this with a lot of emphasis on the word "MAYBE". This is
the same doctor who has been the one painting the less than bright
sun shiny pictures throughout the whole process so I see this as a
big positive sign. We are trying our best to maintain composure, but
we are very excited and hope that you are too. Remember that Caden
will have to spend some time in a normal hospital room in the MUSC
Children's Hospital before he is ever released to come home. If he
does make it out of the PCICU this week, then there is a pretty good
chance that my Christmas wish will come true. My wish is to have
Caden home by Christmas.
If you have ever doubted whether
God answers prayers, then you have got to meet Caden. He is
capturing the hearts of so many people. He is already lighting up
the room when he opens his eyes. I can't wait to see what God has in
store for this little boy and me for that matter. This past several
weeks of my life have definitely changed how I look at things.
Monday 12-06-04 Midnight - Update: Caden had another great day. This may have been one of his best days yet. He is now being given some medicine to help dry up his secretions. He continues to cough and gather stuff from his lungs in the back of his throat. This causes him to gag a little at times. This is really his only problem right now. He is still getting formula through his feeding tube. He continues to sustain his strength without IV lines.
Sherry and I are doing pretty good. We are tired, but our spirits are high. Caden and Riley are both doing great. Riley talks about Caden regularly now. I believe Riley's visits to see Caden have been very helpful for him to understand what is going on. Riley has been able to visit with Caden every weekend since Caden was born.
I added two more pictures to the "Week 5 PICs" page. Sherry took them earlier this evening. You can see for yourself how good Caden looks.
We are so grateful for your love and support. Keep praying for my Christmas wish to get Caden home.
Tuesday 12-07-04 7:45 PM - Update: Caden had a good day today. I only say that it was a "good" day because he did have to get an IV line so that he could receive a blood transfusion. I want to share some really exciting news before I get into the details of the blood transfusion. Caden may get to transfer out of the PCICU as early as tomorrow. One doctor said that Caden is looking so good that many of Caden's doctors are comfortable with moving Caden to a regular room on 7C. The doctors will reevaluate Caden tomorrow to determine if they are going to transfer him. I will keep you posted.
Caden's blood test results would have justified a transfusion a few days ago, but Caden did not have an IV line to deliver the blood into his body. His little body has not picked up the task of making red blood cells fast enough yet. Babies have a normal tendency to be anemic at about Caden's age. Some of the red blood cells they get from Mommy start to die before the baby's system is ready to generate new ones. This natural tendency for all babies plus the fact that Caden had a major open-heart surgery and he looses blood to these tests is what caused the need for this transfusion. His red blood cell count has been creeping down very slowing for several days just like that of a normal five-week old. The doctors hoped that the red blood cell count decline would stop before reaching a level that would justify them putting in an IV just to deliver the blood. So that is how and why Caden got an IV line today and a blood transfusion.
Wednesday 12-08-04 Midnight - Update: The two new pictures at the top of this page tell today's story. The first new one is a picture of me pushing Caden down the hall. The nurse is steering. That last one is a picture of Caden in his new room on 7C. Caden was transferred this afternoon. It took him a while to settle down from the ride across the hospital, but once he did settle down he got very comfortable.
I will be spending my nights with Caden for now. Sherry and I will switch off later to see how that works out. She is already up several times in the night to pump. She needs what sleep she can get with that task. We will have to see how the hospital sleeping arrangements are before she commits to very much time down here at night. I will stay and work from Caden's room in the evenings and early mornings. Sherry will come down and spend the day with Caden after getting up and spending a little time with Riley. I will go home and catch up on any missed sleep from the night before and visit with Riley. We both still plan to be home in the evenings for dinner with Riley and to see him off to bed. I know it sounds busy but at least we have a plan.
Caden's room has a private bath with shower, roll-away bed, couch, and chair. We also have access to a refrigerator, ice machine, microwave, and coffee pot. The Ronald McDonald Room, this is different from the House, has a full kitchen and place to sit down with family and eat. It has just opened and is only operational during certain hours due to low volunteer staffing right now. There is a big room down the hall from us called the Atrium. It is a huge play area for patients' siblings and non-contagious patients. They have just about everything a kid could every ask for to play with in there. Riley has already used it a couple of times when visiting Caden in the past. Now it is just down the hall on the same floor of the same building we are in.
Well the nurse has just finished 12:00 vital signs and I am off to bed. I hope this news fills your day with happiness and joy.
Friday 12-10-04 10:30 PM - Update: Caden is doing good. While Caden is doing good at the moment, we have gone through a rough couple of days since leaving the PCICU. Caden now has an upper respiratory infection. This causes even more secretions than normal. He is already on an antibiotic to treat the infection and that should clear up in a reasonable amount of time. The past two days have also involved some tests. Yesterday we took Caden to see the ear, nose, and throat (ENT) doctor. They ran a scope in to look at Caden's vocal cords. They took some pictures and found that Caden has a little bit of damage or it may be a defect on one vocal cord. This causes him to have a little weak of a cry and it also causes him to have a harder time sealing the airway when swallowing. Today we took Caden down to get a modified barium swallow (MBS) test. This is a test were they give him some thick fluid from a bottle while he sits in front of an Xray machine that records a digital video of the fluid going down. Caden was not able to swallow properly. I believe that the term Disphagia is used to describe his condition. The muscles that are suppose to relax and allow stuff to travel down into the esophagus are not doing their job in sync with the swallowing process. The fluid, food, secretions, and saliva is never allowed to leave the throat and enter the esophagus. This causes Caden to collect these things in his throat and get gagged and he can even aspirate if the fluid is not suctioned out. All of this is linked in one way or the other to DiGeorge Syndrome. Caden does get a trickle of fluid down, but it is more by accident than on purpose right now. Those muscles do relax once in a while, but not when they need to with the swallowing process.
The next logical question that you must have as we did, "how is this swallowing condition treated?" There really is no cut and dry answer and their official answer for now is that a lot of research is being done on how to treat this on an infant. First we will have to wait up to three weeks in the hospital to get another MBS done. Another MBS will tell us if his swallowing abilities are improving. This may happen in less than three weeks, but there is some question as to how long to wait. Once the test is complete we will take one of two paths. We will begin to feed Caden by mouth if he shows that he can swallow. The other path is to get a feeding tube installed in his abdomen. This would actually be a little port on the outside of his tummy that we would have to hook a pump or syringe to in order to deliver food into Caden's stomach. The last child to come through here with the same problem went home with the feeding tube. These tubes are usually required for several months or longer.
I have not left the hospital for more than three hours total in the past two days due to a concern for Caden's care. I don't mean to make it sound like the folks down here are not doing their job. They are doing an awesome job. There are kids lined up to get in here and unfortunately there are not enough nurses lined up to get in here. Caden requires a good bit of attention from someone with a suction tube to remove the secretions an other fluids from his throat so that he does not as a worse case scenario aspirate on them. The more usual outcome is that he will cough or sneeze them out onto his face, bed, or clothes. Then he is in just a yucky situation that takes a ton of his energy to get into in the first place. The energy is drained with all the struggling he does to get up a strong enough cough or sneeze to get the stuff out. In the PCICU, he was getting some pretty personalized attention. Hear on 7C he does not have a nurse sitting within a few feet of his bed at all times so they can not see when Caden is struggling with these secretions. Until today, no one really knew whether Caden was creating an obscene amount of secretions or if he was just not swallowing any of the normal secretions due to swallowing problems. The answer is sort of a combination. He does have an infection that is beginning to break up that adds to the normal secretions that collect and can not be swallowed due to his condition. Now, why have I spent so much time here? Well, I have had the overnight shift to sit with Caden to ensure that he does not use all of his reserve energy to get this stuff out on his own. Sherry came down yesterday and today in the morning to relieve me. We agreed on both days that I might need to hear the results on the tests since they are pretty big issues concerning how we will care for Caden in the near future.
There have been some changes in Caden's care today. First we were relocated to a room closer to the nurse's station. I am not sure exactly why, but it might be because when I did came back last night after being gone for three hours, I found Caden with a big gob of stuff on his face. I was so upset by the scene that I took a quick picture of him before cleaning him up. I had the digital camera in the bag that was on my shoulder. I told the 7C nurse practitioner (NP) today what happened last night and that I was so upset that took a picture if she did not believe me. I also told her that Sherry and I were planning on being here 24/7 for fear of finding those situations or worse again. Since that conversation and the swallow study we have moved to a room across from the nurses' station and an order has been written to get Caden suctioned by a respiratory therapist, NP, or doctor as needed. The need is determined by us or his nurse. This only needs to be done a couple of times per 12-hour shift at the most right now. Sherry and I still do less intrusive suction passes ourselves when he coughs it up far enough to see. The secretions should slow down once the infection is gone. Then they will give him some medicine to help minimize the normal secretions. The only reason they are not using it now is that the medicine has a tendency to thicken the infectious secretions which are harder to clear out.
Riley visited once yesterday and twice today. He got to play in the atrium and visit with Caden. We all had dinner here tonight. Sherry and I are both staying tonight so that she can get a feel for the night shift. I am staying more to be with her than anything. Things are a little different at night since there are not doctors buzzing around and there tend to be less nurses on the unit. I believe they get as bad as a five-to-one patient to nurse ratio at times due to staffing.
I know that I write a bunch of information. This accomplishes several things. It helps get the facts out as we know them to those of you who care so much about us. It also provides a journal of sorts that Caden can use in his future testimony of what God brought him through as a child. The last thing that Sherry sees is that it has been somewhat therapeutic for me. I believe she is right. Writing these notes for you have given me a chance to sort out my feelings and present the information in a way that can give everyone a good idea of where their prayer needs to be focused. I have not always been as strong of a believer in God as I have become in recent months. I can not imagine going through all that we have been through in the past several weeks without God. I write a version of what we see and experience that includes a little cream and sugar. We have really joyous days as well as days when we struggle so hard with so many things. I want you to know that we are being blessed by help from so many people. Some things can be helped and there are a ton of wonderful people doing an incredible job of helping, but other things can only be helped through prayer and faith in God. I wish I could tell you all that is on my heart tonight, but I can not. I sit here with tears in my eyes as I try to sort out all of the things that I have had to deal with lately. An old friend told me the other day in an email that sometimes you just need to have a good cry in these types of situations. I think he was right. Today was a day when a cry seemed to help.
Hank O
Saturday 12-11-04 11:30 PM - Update: The day is ending up as a peaceful night here in Caden's room. Caden has been getting compressed feedings today. These compressed feedings are designed to condition Caden's digestive track for eating more like a normal baby. Most of the time he has actually been getting a continuous feeding through the feeding tube into his intestines just past his stomach. This area of the digestive track can not take high volumes so they actually move the tube back into the stomach before doing these compressed feedings. Caden did not tolerate this very well today. He ended up refluxing some once they got down near a one hour feeding time for a three hour volume of formula. They don't know exactly why he had a problem. There was a choice to go to IV fluids or back to a continuous feeding until the doctors can talk it out tomorrow. The doctors went with the continuous feeding again due to Caden's previous problems keeping IV lines in place. Sherry and I agreed with this decision. Caden has been sleeping so good since this change and has needed significantly less suctioning as a result of this change as well. The day has ended pretty good.
We really are doing okay. I went home for a while today a got a nap. I came back this evening with Riley after he and I had dinner together. He is such a cool kid and makes me proud to be a father. We came to the hospital so that Sherry could take him home and put him to bed. He also got a chance to see Caden. He seemed to enjoy our evening out.
I have posted some new pictures. I hope you enjoy them as much as we do. God bless you!
Hank O
Monday 12-13-04 9:00 PM - Update: Today was a great day for Caden. Caden had his jumper cables (pacing leads) removed. His heart surgeon stopped by Sunday and told me that he felt like Caden no longer needed the leads. They went forward today with removing the leads. The rest of the weekend brought us some other news that was not exciting. We have found out that we will not get Caden home by Christmas. Caden is continuing to experience problems with reflux and swallowing. The doctors are going to do the follow up swallow test next week. The results of this test will determine whether Caden will need the feeding tube (G-Tube) put into his belly. The doctors have not been optimistic to say the least due to their experience with these swallowing conditions. Caden's acid reflux problems have led to an initial recommendation that Caden get what is called a Nissen Fundoplication (Wrap). This is a surgical procedure used to treat excessive acid reflux problems. The surgeon would take part of the upper stomach and "wrap" it around the lower esophagus to help keep the excess reflux from leaving the stomach and entering the esophagus. There is at least one test that will be run before they make a final recommendation on this surgery. This test will be done next week after one of Caden's medications has cleared fro his system. Caden's doctors are fairly confident that he will need this "wrap" surgery. The doctors expect the surgery to scheduled for the week after Christmas. Caden would come back to his room in 7C after the surgery. The focus would then return to compressed feedings to be delivered via the G-Tube that would be installed during the "wrap" surgery. Caden would then spend as much time in the hospital as required to get him to tolerate the feedings and then he would be discharged.
Sherry and I continue to do better. I believe the bulk of our problems last week were caused by our unrealistic expectations for what would happen when Caden got to 7C. We expected this unit to be like a breezeway on the way out the door of the hospital. While 7C can be that way for many children, Caden is moving at a different pace than most kids. There are times when I sit here at night with Caden that I actually feel a sense of gratitude towards this little boy for the patience that I am learning due to all of these experiences.
Sherry and I had a date Sunday evening. We got to go to a Christmas celebration with some friends from our parenting ministry. It was a great time. It was just what we needed. We are slowly trying to move towards picking up as much normal everyday activities as we can tolerate. We continue to get blessed through meals and gift cards from friends and family. I want to thank everyone again for their prayers and assistance. God bless you all for taking the time to visit Caden's page.
Hank O
Monday 12-14-04 11:30 PM - Update: Caden had a good day overall. Caden did great last night. His day was a little tougher. Caden tends to have more need for suction of his secretions during the day. Caden received an echocardiogram today as a follow up to having the pacing leads removed yesterday. Everything looked fine with his heart.
Tonight I want to share with you a little bit of information on how far reaching Caden's story has been to lives across the country and the world. Many of you know that Sherry is adopted. Sherry's dad had two children from a previous marriage. His daughter Nina is the sister that Sherry gained by becoming a member of this family. Nina shared Caden's story with her own mother Chris. I have never met Chris by the way. That is part of what makes this story even more special to me. I have received numerous emails from Chris telling me how people from her church who do not have Internet access ask her how Caden is doing. She shared Caden's story with people in her own church and friends all over the world via a web site that offers a fan forum for the "Oak Ridge Boys". I have seen a few dozen of the responses from people all over the world who have taken time to leave messages of support and encouragement for us. a couple of members of the "Oak Ridge Boys" even responded. I received an email from a lady today that really struck home with me. I won't use her name because I want to share a couple of details about her story. Her email reminded me what prayer can do as she shared how God answered prayers for her to be healed three years ago from a terminal diagnosis as a result of a very rare brain tumor. The doctors basically told her to plan her funeral. Her condition disappeared unexpectedly due to prayer. It was a miracle. This caused me to reflect on what prayer has already done for Caden. I believe that Caden's heart was not necessarily healed as a result of a miracle. I believe that Caden's heart was healed simply because our prayers were answered. My understanding of a miracle is that it is an unexpected or unexplained event that comes from God. Caden's heart condition disappearing before the surgery would have been more of a miracle in my understanding of the term miracle. I expected Caden's heart to be healed by the hands of the surgeons. The doctors and surgeons are not miracle workers but rather they are very smart people who have been blessed with skills and knowledge to be able to repair and treat such fragile organs.
The above story is a great lead in to a special message from Sherry tonight. Sherry and I are struggling with the initial recommendations of the doctors that Caden may need this surgical procedure called a Nissen Fundoplication (Wrap) that I talked about last night. Sherry has received information that the procedure could affect Caden's quality of life for years if not for a lifetime. The procedure can actually leave a person unable to relieve pressure from the stomach at all (burp, etc.) without the G-Tube. Sherry said tonight, "my prayer is that the reflux and swallowing issues will be healed." Sherry spoke with a friend today that said she was praying for clear signals be given if this procedure is not necessary. We need discernment as a minimum in this situation and we ask that you join us in asking God to give us clear signals for what is to be done. The absolute clearest signal would be a miracle (unexplained) cure of the problems with Caden's reflux and swallowing before his tests next week. Sherry asked that I request that you join us in praying for healing of Caden's swallowing and reflux problems. I trust that God will either deliver a miracle or God will provide us with a clear signal as to whether or not these conditions will be healed with an invasive surgical procedure.
Thank you for your prayer and support.
Hank O
Thursday 12-16-04 11:30 PM - Update: Caden is having a pretty good week. There have been no big changes in his care or condition this week. The tests are still scheduled for early next week that will help determine the doctors' recommendations for treatment of Caden's digestive problems. Caden did have his IV removed today. This is the same IV that was used to deliver his last blood transfusion about 10 days ago. The IV line has not been used for anything else since then.
The big news of the week is about me. I got extremely sick this week and found myself downstairs in the emergency room. I became severely dehydrated. I was given a liter of IV fluids and some medicine to help my nausea. I have been burning the candle at both ends for a while and it finally caught up with me. I do plan to make more time for rest in the future.
I continue to be amazed by the emails that I get. My family is truly blessed to have so many people taking the time to pass on Caden's story and requesting that they pray for us. I received several forwarded emails today from Anne Marie Ezzo. She sent out a prayer request message to key families in the Growing Families International organization all over the world. The responses that I saw came from Russia and South Africa assuring us that they are praying for us constantly.
The amount of love that is being poured out on our family is absolutely unbelievable. God has been so good to us. Sherry and I are so thankful to be surrounded by such caring people who lift us up to the Lord. I thank God everytime I pray for the support that we get through pray and encouagement.
Thanks again for taking time to follow Caden's progress. God bless you!
Hank O
Thursday 12-23-04 02:45 AM - Update: Caden has been on a roller coaster ride since late last week. The past few days have been really hard on the little guy. He got an IV early Tuesday morning due to his fever spiking up with a very irregular heart beat. The doctors thought he might have aspirated on some of his formula during a PH probe test Monday. They had to pull his feeding tube back into his stomach for this test and this caused him to reflux several times. Sherry was here during the night so that I could get some rest and she got so scared by the fever and heart rate that she called me to come to the hospital in the middle of the night. I had not slept much due to being sick again and this made for a long day for all of us. Caden did not sleep for an eight hour stretch Tuesday morning while getting the IV and his feeding tube moved in and out. Caden has lost a little weight due to his food being turned off on several occasions for one reason or another. He is currently at 6 lbs and 7 oz. He was up to 6 lbs and 11 oz at one point over the weekend. The IV that he got Tuesday morning blew out this (Wednesday) evening and his arm swelled up like a balloon as a result. We convinced the doctors not to replace the IV tonight so Caden could get a break. he has been so hard to get IVs started that we did not want them fishing for an IV if it was not absolutely necessary right now. They can deliver his antibiotics via other methods for now.
Caden has been through several tests in the past few days. The short of the story is that the results were not what we had hoped to see on the recent tests. Caden is still having trouble swallowing. He is also having trouble tolerating food in his stomach. Right now we are in a wait and see mode. The doctors from all the different areas of concern are conferring and then they will make a recommendation on the next move.
Caden's stomach is rather small and does not appear to empty very well. This was determined during a test called a small bowel follow through completed Tuesday. They put barium in Caden's stomach using a feeding tube and then a series of x-rays were taken to see how long it took the barium to pass through his small intestines. The initial emptying of the stomach was rather slow. That explains to us why Caden starts refluxing an hour or two after he gets his feeding tube moved back into his stomach. He best tolerates his feedings when they are being sent directly into his intestines. The ideal place for him to receive food would be in his stomach, but his stomach is not processing food correctly and it backs up and starts refluxing once the stomach receives more than it can handle.
Today, or I guess yesterday (Wednesday), Caden went for a new test in the nuclear medicine department. They used his feeding tube to put a measured amount of formula mixed with some radioactive liquid directly into his stomach. They then put him in front of a special x-ray machine for over an hour to watch his stomach empty. This is supposed to be a more accurate test of how his stomach empties. The joke around here is that nuclear medicine is also called unclear medicine. The results on their computer screen looked like something you would see when looking through a telescope at distance cluster of stars.
The bottom line is that Caden will remain in the hospital until after the Christmas holiday weekend when a decision will be made on how to feed Caden on a longer term basis. The feeding tube that Caden currently has reaches his intestines by way of his nose and throat. This is not a solution that we can go home with. He will get some kind of feeding tube surgically inserted into his stomach next week. He is likely to get what is called a J-tube for now. This would be just like a G-tube that is a port on his tummy, but it would actually run into his small intestines. This would require that Caden get fed on a more continuos system (pump) since the small intestines does not have the ability to expand and hold stored food like the stomach. The final recommendation has not been made on this J-tube, but it is currently the most likely solution for the short term that will allow Caden to leave the hospital.
I apologize for not getting information out sooner. I have been trying to get rest as often as I can. I have also tried to put as much awake time towards my job while here at the hospital. This has left little time for web site updates along with meeting with doctors and caring for Caden. My employers have been 100% supportive of our situation. They have given me work to do that will allow me to work remotely. I have to sit in on the occasional conference call and that can be done by cell phone from anywhere. I use my laptop to dial up to the Internet from Caden's room. I do expect to go back on the road in February at this point. My job normally has me traveling between 30% and 40% of the time. That will be the case again once I get back in the normal grove of things. I can not thank my bosses Don and Eddie enough for being so supportive. They both have had their share of life experiences that make them sensitive the need for me to be with my family through this tough time. My peers at work each sacrifice a little to pull my share of work on travel and other normal tasks since I am not there in person and they too have been overwhelmingly supportive.
One other thing that my co-works share with many other friends and family members is that they all are in line to smack me around if I do not take better care of myself. I ended up getting sick again this week. I did not get bad enough this time to need IV fluids, but I got close. Sherry has had as bad or even worse of a week due to the task of drying up her milk. This has been a very painful process and she has stayed home a couple of days due to the discomfort of trying to travel to the hospital. She is on the down hill side of the process now it seems. She is still having some discomfort and could use some prayer herself. Sherry's Mom and Dad have also been through a tough spell of cold/ flu like symptoms in the past week as well. This has made their travels to get here from Atlanta even more challenging. Joe got to sick that he had to miss some work this past week. That is unheard of if you know Joe. Sherry said that this was the first time she has ever know him to get sick like this. We have been lucky enough to have Darla back with us this week, but she has not been without sickness during her visit. Sherry took care of Riley today to give Darla a chance to rest today for a while. Robin stayed the entire week last week and was absolutely amazing as always. She even got up in the middle of the night last week to come help me when I got sick and had to go to the emergency room to get IV fluids due to dehydration. My Mom came in for the weekend to visit and help with the boys. She will be back to stay next week to help with Riley and Caden.
The scene in Caden's room is starting to read like "The Night Before Christmas". A small three foot tree has been decorated with lights. The stockings are hung from the bulletin board with care with hopes that Saint Nick with find us all here. We plan to got to a Christmas Eve service at church with Riley while Grandma and Grandpa sit with Caden. We plan to celebrate Christmas morning right here in Caden's room. Sherry brought Riley up here today and he hung the first two ornaments on the tree (Elmo and Cookie Monster). I have included a picture of a very cheesy smile that Sherry captured from Riley and me during the process of hanging these decorations.
We continue to be bless through meals from friends with the Goose Creek Mom's club and members of our church. We have received financial assistance from family and friends to help us be able to have a little bit of Christmas. It is not like we are poor, but we do barely squeak by since Sherry does not bring in an income due to her full time job as a stay at home Mom. We normally can only stay out of the red on our budget when I get some overtime with my travel. I have not traveled since a trip to Puerto Rico in September. The meals, gift cards, and cash that family and friends have provided have come as answered prayers at the most perfect times to meet our needs. It has been such good timing that it has given me chills to receive these gifts at times simply due to the timing. We have opened some cards within the hour after I have prayed for God to provide us with a solution. It has been so reassuring to get prayers answered like this. Why does God not answer other prayers for healing? Well, that is not for me to know. God does provide in his own time. We have to keep in mind that the healing that Caden receives has been and will be on God's schedule and not ours.
I feel that I can not say thank you enough. I thank God for each one of you. We are blessed by the love and caring that each one of you delivers to our family. Our days are made brighter by every message that we get from family, friends, and strangers alike. Thank you and God bless you. We wish you and your family a very Merry Christmas!!!
Hank O
PS: Caden's little friend that I have wrote about several times in the past has been discharged from the hospital today. She left this afternoon with her Mom and Dad as Caden and I went to see the nuclear medicine folks. Chalk that up to answered prayers as well. That little girl was VERY sick at one point.
Monday 12-27-04 01:15 AM - Update: It was a pretty good weekend here in Caden's room. We celebrated Christmas day here in Caden's room. Grandpa stayed with Caden on Christmas Eve. Sherry, Riley, and I came down after we got up, read the Christmas story, and had breakfast.
Caden is looking as good as ever today. Caden tipped the scales at a new high of 6 lb 12.5 oz on Christmas Day. Caden has seen some changes to his feedings over the past 24 hours. These changes are to gather data to assist the doctors and us in determining what surgery choice will be best for Caden. He will likely get some type of surgery on or about Wednesday of this week. I will keep you posted as things progress.
Please keep us in you prayers this week. Ask God for us to have clear signals for making the right choices concerning Caden's surgery and care.
We really did have a wonderful Christmas. I hope you did too.
Hank O
Tuesday 12-28-04 01:30 AM - Update: Caden had another good day today. We met with doctors, surgeons, and nurses to discuss the next step for Caden. It has been recommended by almost everyone that the best solution for Caden will be the G-tube only. There is not enough evidence from recent tests and observations to justify any of the more intrusive procedures previously discussed. Caden has been tolerating formula in his stomach well enough over the past few days to make us and all the doctors believe that Caden will be fine getting formula directly into his stomach via the G-tube.
The G-tube will start as a little hose coming from Caden's belly. It can later (in a month or two) be converted to a lower profile cap type port on his belly if he still needs the G-tube on a longer term basis. Caden will continue to be tested for swallowing functionality as an outpatient. Caden will be able to loose the G-tube as soon as he is able to swallow and maintain/ gain weight when taking food by mouth. Caden is still not even swallowing his secretions at this point. There is no way to know how long it will be before he begins to swallow.
The best news out of all this is that we are likely to see Caden discharged from he hospital within as few as three days after this procedure. Yes, we could feasibly be home before the calendar page turns on us again. Caden is scheduled to get the G-tube today. He is the second case for the pediatric surgeons and will probably be taking to surgery before noon. The procedure takes about 15 minutes to complete plus the time for preparation and recovery from the anesthesia. This should all take about two hours. Caden will get a local anesthesia and be on a respirator machine for a short time. He is required to be on IV fluids for 24 hours after the surgery and then they will start to use the G-tube to feed him. Caden already got his IV this evening in preparation for the morning events. His formula was stopped at 01:00 AM and IV fluids were started. Sherry and I both are staying here tonight since we do not know exactly what time Caden will be taken to surgery.
We are nervous about taking care of Caden without the safety net of all the heart and breathing monitors, but we are excited that he will likely be home within the next few days. We will receive in-home nursing assistance for a short time depending on what my insurance will cover. We are also going to receive in-home equipment like a feeding pump and a suction machine.
Please pray for our little boy today. Please ask God for Caden to get through this procedure without complications. We believe that Caden is getting what he needs and no more. I will try to make another update to this web site later this afternoon to let everyone know how Caden is doing.
Hank O
Wednesday 12-29-04 07:00 AM - Update: Prayers have been answered again. Caden did have his surgery yesterday. He went in at about 10 AM and was done by Noon. Caden recovered fine immediately after the surgery. Later in the day he started having a problem. He would stop breathing for a little bit and set off his apnea alarm. He would recover from the spells just fine on his own but the spells were happening a little too often as far as Sherry and I were concerned. The cardiologist on duty agreed and did some blood tests and x-rays. As a result, Caden got a blood transfusion early this morning. Nothing other than his red blood cell count was alarming about in his blood tests and x-rays. He is not having as many apnea spells now and they are not lasting as long.
Caden has been back in his own room since noon yesterday. The doctors briefly talked about transferring Caden back to the PCICU last night if he did not start to improve from these apnea spells. I told the doctor that I wanted them to hold their horses. Caden has been slow to respond to just about everything that has been done to him since birth. The doctors agreed and it paid off. Caden is doing much better this morning and remains in his room. As a matter of fact, the cardiologists made rounds a few minutes ago and they are still thinking that Caden is likely to go home at the end of the week.
Please continue to pray for Caden. Caden is still experiencing some discomfort. He is receiving medication for the pain. I have included a few new pictures to show how good Caden looks without the feeding tube in his nose.
Hank O
Thursday 12-30-04 02:00 AM - Update: Caden is still doing good. He continues to have short spells of apnea, but he recovers from the spells on his own. He is having a little trouble tolerating formula in his new G-tube. The doctors are increasing Caden's rate of feeding slowly to help his adjust to the new method of feeding. Caden seems to be adjusting to the slow changes.
We are still looking at a possible Friday departure from the hospital. The doctors will reevaluate Caden's condition mid-day on Friday to determine if they are ready to discharge Caden.
Today Caden got to meet his great grandmother. He was visited by his Aunt Becke, his great grandmother (Edna Osborne), his great uncle (Bo Osborne), and his great aunt (Sue Cannon). Riley and my Mom are a little sick today. Riley was running a 102 fever earlier today.
Thanks for checking on Caden and our family.
Hank O
Friday 12-31-04 10:00 AM - Update: Caden is doing good today. Caden is not doing good enough to go home today. The good news is that Caden will likely get to go home over the weekend. The early estimates for Caden to go home today were based on how most children respond to getting a G-tube. The estimates for Caden to be ready to go home by today did not factor in his tendency to take a little longer than normal to recover from anesthesia and surgery. Caden is still experiencing apnea spells. The doctors are considering sending an apnea monitor home with us for a month or so.
Happy New Year!!!
Hank O
Saturday 01-01-05 11:00 PM - Update: I believe the new pictures above tell the story pretty well. Yes, Caden is sleeping in his own room at home tonight for the first time. We arrived home at approximately 6:00 PM New Years Day. Caden is doing really good. He seems comfortable and happy at home.
Riley has been sick for the past several days. Even so his first words to Caden were, "sit down, play train please." I would say that Riley is really excited that Caden is home. It is really tough right now because we need to keep Riley out of Caden's face since Riley is still coughing a bunch. Riley wants to be right up next to Caden and we have to minimize contact until Riley gets well. My Mom is enjoying seeing her two youngest grandchildren home together even though she is still fighting a nasty cold. She will head home Sunday and we will begin our first week as a family of four.
Caden was sent home with a feeding pump, suction machine, and apnea monitor. Believe it or not this stuff was all delivered and we got trained on it today. I started the day off by asking the doctors and nurses what they were doing with Caden that we could not do at home. Their answer from Caden's nurse was, "ah ha, the big question." Obviously our confidence played a big part in determining when Caden got discharged. Sherry and I discussed it last night and we felt that we were ready to ask that question. As you can see it paid off. Don't get me wrong. We are scared silly. I have to just keep remembering my favorite verse 2 Timothy 1:7 - "For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind."
Your prayer will help too get through as it has already so many times. We are very thankful for the blessing that we have received today in getting Caden home. We are thankful that Sherry is finally getting some comfort from drying up her milk. We are thankful for the friends and family who do things for us. Sherry and I ask that God give us strength and confidence to deal with Caden's needs as well as Riley's and each other's.
We hope that your New Year starts of a little happier as a result of this great news. May God bless you and your family as much as he has blessed ours this day.
Hank O
Friday 01-07-05 05:00 AM - Update: Caden is doing great at home. It has been almost a week now since Caden came home. He is eating good through his G-tube and gaining weight. He went to his pediatrician this week and weighed in at 7lb 2oz at 22 inches long. Caden also had follow up visits with his cardiologist and general surgeon. All the doctors and nurses that saw Caden this week said that he looked great. We already have in-home nursing care started where a nurse stops by at least once per week and are on call 24/7 if we need assistance. We expect to have occupational and physical therapy started within the next week.
The biggest news of the week is that Caden has been cleared to take breast milk through his feeding tube. The doctors want us to fortify it with a little bit of powdered formula to make sure it has all the nutrients that Caden needs. We are going to make the switch from his current formula to breast milk over the weekend. We will be visiting the cardiologist again in a couple of weeks to verify that Caden's thoracic duct area has not sprung any leaks as a result of the switch from the special formula that he is on now. You can read the 11-16-04 notes on the history page to get the reason for the special formula if you are not aware of why Caden was put on it in the first place. Caden is eating on a modified compressed schedule right now. He gets fed continuous between 8pm and 8am. He gets compressed feedings during the day. He is sleeping through the night for the most part, but does require his secretions to be suctioned out a few times during the night. He has only set his apnea monitor off about a half dozen times total since we brought him home. He is still recovering fine on his own from the apnea spells.
We are slowly getting more comfortable with Caden. We are getting a little more sleep each night. The first few nights we were both sitting straight up in the bed at the least little sound that was out of the ordinary. Caden is sleeping in his own room and the sounds that he makes are much different sounding over the baby monitor. Caden is responding more every day to our voices and touch. He loves to be held.
Riley is so excited to have Caden home. He wants to hold Caden so bad. We are having to keep them separated right now due to Riley having a pretty nasty cold earlier in the week. Riley saw the doctor on Monday and the medicine that the doctor gave him is clearing him up pretty fast. We hope Riley will be well enough to hold and hung Caden by the end of the weekend.
Sherry and I are doing pretty good. We are making this week a family bonding week. We do not have anyone else staying with us. Thank God the Mom's Club is providing meals for us this week. We are a little disorganized at this point and trying to get a grip on having our house and or family back together for the first time in 2 1/2 months. Up until Sunday, we have had someone staying with us to help with Riley since October 16th. We have been coming and going so much that we have not had a chance to declutter or clean the areas under the clutter. Sherry is working on getting the house back in order. I am working from home as well as showing my face more at work this week and next week. I plan to be back to a normal work schedule within the next two weeks.
Our New Year is starting of just about as good as we could have ever imagined. We are truly blessed to have our family under one roof. Thanks again for all of the prayers and support.
Hank O
Sunday 01-09-05 11:00 PM - Update: Caden is doing good at home. Caden is having fun at home as you can see from the picture above. Riley finally got to hold Caden today for the first time since we brought Caden home. Riley had been sick and was not able to get near Caden for almost a week. I posted a few pictures on the week 10 section with and Caden together.
We all went out on Saturday evening to church. We all enjoyed getting out of the house and it gave us a chance to see that we can actually get back to some normal activities of our day to day life.
Hank O
Thursday 01-20-05 11:45 PM - Update: Caden continues to do well at home. He is gaining weight. YEAH!!! He last weighed in at 7lbs 7ozs on 1-12-05. That was a 6oz gain in one week. Caden is now getting mostly Mom's milk. We initially started him on Mom's milk at 100% strength back on 1-8-04. Caden was really fussy the next day and continued to be fussy until we went back to a formula. We talked to Caden's pediatrician. She told us that we should have eased him off of the formula instead of going cold turkey. I guess we got too excited about freeing up freezer space. We have since worked Caden up to about 75% Mom's milk and 25% formula. We should get him up to 100% Mom's milk by the end of this coming weekend. Well, it will be fortified with a teaspoon of powdered formula per 3oz of Mom's milk. He seems to be tolerating the slow transition just fine.
We have continued to "try" to move towards normal everyday life. I am now getting up and going to work like a normal human. Sherry is trying her best to get through the days alone with these guys. Riley is wonderful on most days and other days he shows stereotypical 27 month old colors. These are the days when Sherry is greatly relieved to see me come through the door. Caden is still fairly high maintenance. Caden is still not swallowing anything as far as we can tell. This means that he gets gagged on his own secretions after a while if he is not suctioned out. This does not sound like too big of a deal, but you just don't realize how much you swallow without thinking about the process. Anyway, this makes for a pretty busy day of just making sure Caden's airway is kept clear of liquids from secretions and reflux. Even though he does not swallow, he does still reflux or spit up as most folks call it. The short of the story is that Sherry is having a tough time on some days. It is hard to explain the complexity of it. I stayed home on Saturday with Caden while Sherry, Grandma, and Grandpa went to the park with Riley to play in the snow. Yes...We had snow in Charleston, SC this past weekend. Well, it was man-made for an annual winter festival that is put on for kids to experience snow in a town that almost never sees enough snow in a year to make a snowball out of. This was not Riley's first experience with snow since he a Sherry went to Colorado with me last April. Anyway, my experience alone with Caden all day gave me appreciation for how much different Caden's needs are compared to Riley's at that same age a little over two years ago.
We continue to pray for Caden to get the ability to swallow just a little bit. This small task will bring so much peace to our home. Caden will be able to rest without becoming uncomfortable due to the gagging and the suction required to clear him up. No one should have to endure what he has to go through. I wish I knew what to do for him. There is very little research on dysphasia in infants. Most kids grow out of the problem before data can be gathered on their condition and how to treat it. I hope and pray that the same holds true for Caden. Please join us in praying for Caden to get is complete swallow reflexes. Your prayers are answered. I have shared only a few of the stories of answered prayers and miracles that we have witnessed first hand in recent months.
I hope you don't take the previous paragraph to be too gloomy. Caden is doing better today than he has even done. There are a lot of times when you would not have a clue that this little boy had been through open heart surgery or had any of these digestive problems. He has a way of captivating your attention and making you forget about anything but the joy that he spreads through his smile and gestures. He is a wonderful little boy. A pastor at church asked me on Sunday where I got this little boy and where he could get one. I told him that God gave me Caden and all he had to do was pray and ask God to give him one. ;-)
I will try to get an update out a little more often. I have been asked to continue the updates and pictures. I have posted a few pictures. I hope you enjoy them.
Hank O
Monday 01-24-05 05:45 AM - Update: Caden continues to do well. He continues to gain weight. He weighed 7 lbs 14 oz on Friday when the home nurse came by to see him. That is up another 7 onces in just over a week. Caden does continue to have severe reflux episodes that we have talked to his pediatrician about. The pediatrician does not think the reflux is due to what Caden is being fed, but rather how much and how fast. We have eased off of the daytime rate and volume that Caden is getting and it seems to be helping a little. The pediatrician also adjusted Caden's stomach medicines last week to see if that will help things too. Caden was still on the same dose that was being given when he was 6 lbs. Now that he is almost 30% heavier the pediatrician felt that he needed to have an adjustment. We are comfortable with the pediatrician's approach. We have stabilized Caden's food at a 50/50 ratio of Mom's milk to formula. We don't plan on changing the mixture again until we get the rate and volume where it needs to be for his weight and age.
Riley and I took our first trip out of town since October this weekend. We went to see Papa on Sunday. Papa is Riley and Caden's Great grandfather. Papa is in a nursing home in Clinton, SC about 160 miles away. We had not seen him since before Caden was born. For those who do not know, Papa's doctors called the family in just a few weeks before Caden was born. They thought he would not make it through that weekend back in October. Riley and I visited with him, my mom, my sister and my nephew for the afternoon yesterday. The visit was long over due. We miss Papa a bunch. Papa was not having the best weekend, but he was still doing good enough to get out of his room in a rolling chair for a while yesterday.
Sherry stayed home with Caden. Caden seems to be more prone to have reflux when in motion. We tried taking Caden to church Saturday night to see if he might be up for the Sunday trip to see Papa. Caden had a pretty nasty reflux spell while at church and that raised enough c
The history of his first few months.