"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV)


November 12th, 2012

Caden reading in MUSC Peds Cardiology waiting roomCaden came off oxygen during the day on Sunday 11/11/12. That was exactly one week after being discharged from his 8-day hospital stay at MUSC. Now that he is well we have to turn our attention to his back. Caden has VEPTR rods (adjustable Titanium rods) implanted in his back to treat scoliosis. These rod have to be adjusted or lengthened every 6-9 months as Caden grows.

Today was the pre-op appointment for the VEPTR rod adjustment. The anesthesiologist who reviewed Caden’s record in preparation for the surgery raised concerns about whether he was ready for anesthesia given the fact that he was recovering from a recent pneumonia. Sherry received a call from them a few days ago because they were wanting to postpone surgery based on what they were reading in Caden’s chart. The said they would like for him to be cleared by cardiology before surgery as well. Sherry and I both felt like they should at least see Caden before making a decision to postpone. They agreed and I took Caden in today to see them as well as the orthopedics surgeon. The orthopedics surgeon was blown away by how good Caden was doing today. He said that he expected to see a very sick looking child given what Caden has recently been through and given the fact that the xray of Caden’s back showed that his left lung had not cleared up yet. I think the surgeon’s words were, “That is not the kid I expected to find in this room based on his xray.” Caden on his knees playing with a toy and was VERY animated and enjoying himself when the surgeon came in. It is typical for xrays to lag behind clinical observations by several weeks when recovering from pneumonia so this was not that big of a surprise to us.

So the surgeon sent us to anesthesiologist for a pre-op visit. This is standard operating procedure and we have done it a few dozen times over the years for both inpatient and outpatient surgeries. This time as usual we had an anesthesiologist that we had never seen before who was only familiar with Caden based on his chart. Unfortunately the chart’s most recent entries were from his hospital stay cause by pneumonia. It was very evident to me that there were some strong opinions filtering through from the Infectious Disease clinic who was consulted during his recent stay. The anesthesiologist basically got a point where he wanted to consult cardiology before signing off on this surgery. I asked him to do that on the spot as Sherry recommended that they do several days ago. The anesthesiologist agreed and called Caden’s cardiologist on the spot. Before the call I recommended that he ask for an echo-cardiogram today if they could swing it and that would give them the objective data to decide how to proceed. Caden’s cardiologist agreed and we proceeded up to the 6th floor of the Children’s Hospital to the cardiology clinic. Caden was due a six-month cardiology check-up anyway so this visit fulfilled that appointment as well. In the end the cardiologist said Caden was in as good of health as the last time he saw him and said from a heart perspective that there was nothing preventing the back surgery from going forward. The cardiologist called the anesthesiologist and they all agreed that Caden could get his VEPTR rod adjustment on Wednesday.

So the back surgery is a go for this Wednesday November 14, 2012. We expect Caden to only be in for 1-2 nights.

Prayer:

  • Praise God for Caden’s recovery from the pneumonia
  • Pray for protection over his health as we lead up to this surgery
  • Pray for an uneventful surgery and hospital recovery
  • Pray for protection over the emotions and attitudes of Riley, Josiah, and Levi
  • Pray for Sherry and I as we navigate the next week or so
Picture: Caden is pictured above reading and playing with a fidget while he waits for his echo cardiogram at the MUSC Children’s Hospital Pediatric Cardiology Clinic.

 

November 4th, 2012

Caden will be discharged on Sunday as long as he continues to be fever free…and we don’t have problems getting prescriptions filled. None of the cultures taken on Thursday have grown anything and Caden is approaching 72 hours without a fever. I mentioned in my last post that there was a hurdle with the doctors in trying to determine which antibiotic to use. Their determination of antibiotics choice was dependent on the cultures actually growing something that they could test antibiotics against.

We also learned today that there was a miscommunication between the general pediatrics group and the infectious disease (ID) folks. The ID doctor thought there was need to wait until Monday to regroup with the doctor that has been caring for Caden since last Saturday. The ID doc thought the general peds doc that had followed Caden since he was admitted would be back on Monday. Sherry and I tried to tell him that this doctor was not coming back on Monday, but he did not take our word for it. As a result he was insisting on keeping Caden until Monday based on what he thought the general peds doc had said. Once I pushed the new general peds doctor to give us a solid reason for waiting until Monday, she called the ID doc and learned of is misunderstanding about the general peds rotation. The ID doc was then informed by the new general peds doctor that she was on for the next week and would not be relieved on Monday by the general peds doctor who’s rotation ended Friday.

All that said, there is still an issue that could keep Caden inpatient until Monday and that is the availability of oral (g-tube) antibiotics on a Sunday. We had problems week before last finding a pharmacy to fill the last oral antibiotic for Caden and we have already been told that Caden will go home on three separate antibiotics to continue coverage similar to what he has been receiving via IV. The MUSC Rutledge Tower pharmacy is not open on Sunday so we may have to wait until Monday to get all the home meds filed that we need.

We are thankful that the doctors sorted out their communication issues. I just wish they could get this figured out without me as the parent forcing the conversation. While we love MUSC for things like Cardiology, Cardio-Thoracic Surgery, and ENT, we do realize they are weak in other areas, especially coordination of care across multiple clinics for medically complex patients like Caden. This incident highlighted that weakness once again and reinforces the need for parents to know the details of their child’s conditions and care. Parents should also ask questions to seek understanding when things just don’t seem right.

Please continue to keep Caden in your prayers. Caden is currently scheduled to be back in the hospital for a back surgery in a week and a half (November 14th). We hope he is well enough to get this one behind him sooner than later. This surgery will be a VEPTR rod adjustment related to the scoliosis.

Thank you for checking on Caden and praying for him and our family.

November 2nd, 2012

Caden is improving but not out of the woods yet. Caden has been fever free for about 36 hours with the exception of a few low-grade fevers. His need for a oxygen has decreased and he has actually been off oxygen for a few hours everyday for the past three days.

Tonight is night 7 in the hospital. We hope to get discharged on Sunday or Monday at the latest. The big hurdle is for the doctors to determine which antibiotic Caden is responding to. He is currently on two different IV antibiotics and one of the two does not have an oral equivalent. If the doctors determine that this IV only antibiotic needs to continue then we have two options. Caden can stay inpatient for the full two week course or take Caden home with an IV port, maybe a PIC line. The details behind this are very complicated as the general pediatrician team has called in the infectious desease team to assist. The two teams approach the use of antibiotics differently so until they come to a consensus on how to treat Caden we not know the full game plan. I plan to press the issue tomorrow morning once we pass the 48 hour mark without a fever.  Caden has been on a total of 5 different IV antibiotics during this hospitalization.

Today is Caden’s 8th Birthday. I have posted a special Happy Birthday Caden post with pictures.

November 1st, 2012

The high fevers returned yesterday peaking out at 105.4F. Already this morning we have seen a 104 fever. On top of that Caden’s IV came out yesterday morning and he had to be poked in the other arm to get a new IV and it was not an easy stick for him.

In my last update I mentioned that the doctors were questioning the validity of Caden’s middle of the night fever because it was not recorded by the nurse. Even if it had been the thermometer they use is not accurate on Caden. MUSC uses an axially (under the arm) thermometer “although it’s not the most accurate way to take a temperature” according to the Mayo Clinic. To settle the insanity of their way not matching our way (digital laser thermometer in the ear) we have resorted to having them take Caden’s temperature with a rectal thermometer when he spikes a very high fever. The readings are within  one to three tenths of a degree of our digital ear thermometer. Unfortunately this is not a comfortable way to take a temp on an eight year old kid. Why after almost six days they can’t just agree that our method is easier on Caden and more accurate I do not know.

With all of that the doctors have changed Caden’s antibiotics again…to something different rather than going back to what Caden was showing progress on. This is very frustrating and I wonder if it is not a pride thing where the attending is afraid to admit a wrong decision. I’ll stop before I step over the line with my opinions. It is very difficult to not be trusted even thought we have been caring for Caden 24 hours per day for eight years. I know they don’t usually get parents who are as active in their child’s care, and one doctor even told me that in confidence yesterday. They have to deal with the full range of parents. As example one kid’s mom is in jail and the dad has not been to see him yet. The kid is just a little older than Caden and has no one here for him when the doctors go around. I wish I could just take kids like this under my wings and maybe we will some day. Anyway, enough of my ranting for today.

Caden is most certainly going to spend his 8th birthday in the hospital. Please keep him and us in your prayers. He is miserable and we are very frustrated.

 

October 31st, 2012

Caden was hospitalized with pneumonia a few days ago. He has been inpatient at MUSC for four days now. He has shown signs of improvement, but there have been some ups and downs in the past two days. The up side is that we have not seen a fever reach 105 in almost three days since starting the IV antibiotics. In general Caden woke up acting like he felt better today and even said so a few times. He even came off oxygen for a couple of hours today. Then Caden ended the afternoon having a 103.7 degree fever.

The doctors did change antibiotics earlier today. The more we thought about it the less sense it made. This morning I asked if the cultures ever showed signs of responding to any antibiotics they tested against it. They said no. I asked if they tested this new antibiotic, basically an IV form of amoxicillin, and they said no. They said this type pneumonia “always” responds to Amoxicillin. I’m okay with that if it is “always” true except for the fact that we seemed to have made ground with the antibiotics we were already on. I plan to dig a little deeper in trying to understand their logic tomorrow morning when they make rounds.

An odd response by the doctors today was that they questioned whether Caden actually had a fever last night at 2am. I can assure you that he did. The nurse never came and verified the fever and as a result did not record it on Caden’s chart. She only recorded that she gave him Tylenol. It appears that if it is not in writing then it did not happen. The over night fever got to 102.5 and it took a couple of hours to get Caden back to sleep after that one. Then today Caden had a 103.7 by our thermometer while Sherry was here and was recored by the nurse at 103.  Maybe they will believe it this time. Their tone and actions seem to be questioning our desire to stay in the hospital…like maybe we are making up fevers or something. They have ordered the nurses and techs to take a temp with their thermometer to verify the fever. This is the same thermometer that measured a 1.8F degree difference right in front of Sherry, the nurse and me this evening. No one will listen when we tell them that Caden does not regulate his temperature very well and you need to look at him and take temps in a few different places when you think he has a fever. It’s like they think we like being here and are trying to find ways to stay. They have obviously not been paying attention, because we stayed home for two days with Caden having a fever of 104-105 around the clock hoping for the Rocephin injections to work. Caden even had 105 fever pop up while at the pediatrician’s office on Friday and he was so wiped out by it that they nurse had to get a wheelchair to help me get Caden to the car. The pediatrician was ready to sign off on admitting him then, but we convinced her to give the Rocephin one more day. The doctors only know what they see and this morning they saw Caden sitting up and feeling good and missed him crashing and falling asleep for two hours during the 103.7 fever later in the day.

I did not mention this in previous posts, but we are dealing with the same attending doctor that created all the drama back in February of 2011. He is the one who was suggested on 2011 that Caden be admitted to the ICU and then 12 hours later recommended discharge. I guess I was hoping he would operate with a little more common sense and trust in our judgement this time, but it looks like that may not be the case after all.

Our desire is to get Caden well enough that he does not end up back in here within a few days or a week due to a relapse. Being out of the hospital for his birthday on Friday would be a bonus, but is not a primary concern. We have spent plenty of family birthdays and holidays in the hospital before so it is not the end of the world if we have to do it again. We also hope he will be well enough to get back surgery in on the 14th.

October 29th, 2012

Caden at Camp Bob Cooper - SEFC 2012Admitting Caden to the MUSC Children’s Hospital was a good move. Even though we have a difficult time getting rest while hospitalized there are some things that we just can’t do at home. Most importantly Caden has been getting some IV antibiotics that are not available for kids in oral or g-tube delivery methods. He has also had some tests run to confirm what we are dealing with. The title I used “Double Whammy” is referencing the two things Caden is battling as mentioned in yesterday’s update. One is a virus that was confirmed via a culture and the other is pneumonia (most likely bacterial) which was confirmed via chest xray after they heard crackles in his left lung. He is also battling an ear infection in his left ear.

As for the sleeping arrangement, Caden did not get to sleep until after 2am last night. If he is not sleeping I am not sleeping so we both were exhausted today. This was mostly caused by his ear pain and frequent alarms on his IV pump. The IV was alarming several times per hour due to a “patient side occlusion” which means there is a possible obstruction. It can be because of a kinked line or the IV tip can be up against a valve in the vien. The nurse then has to check the IV to make sure it is still properly placed and is not leaking. His nurse last night was a wee bit OCD in this area so she pretty much had him in tears every time the IV alarmed due to here poking and moving the IV around to check for placement and leaks. I didn’t know viens even had valves until Caden came along. Oh the things I have learned about the human body and medical technology in the past eight years. If you are interested in reading about the beginning of our medical journey with Caden you can read my post titled Fathering a Borken Heart on DaddyLife.net.

Caden’s Current Condition

The fever’s have not completely disappeared. We did go more than 12 hours fever free and then Caden popped a 104.4 this evening around dinner time. That is one of the first things we expect to see go away to show signs that he is on the road to recovery. The doctors want to see him fever free and then spend another 24 hours or so in the hospital for observation and then we will likely get to discharge. Caden’s left lung is still sounding “pretty coarse” as they doctor calls it. Caden is under the care of a doctor who has treated him for pneumonia before in 2011. If you track Caden closely you will remember that we spent 30 plus nights inpatient here at MUSC last year and most of those stays were due to illness. Several nights were due to recovery from back surgeries, but those three surgeries lasted an average of two nights each. So Caden spent over three weeks in the hospital mostly due to pneumonia in 2011 and also battled another three episodes at home.

Prayer 

Our friends the Youngs asked us years ago what specifically they could pray for so I like to share that here so you dont have to guess.

Praises

  • Caden’s fever free 12 hours today
  • Surprise visit from Nana and Dallas to lift Caden’s spirits
  • Grandpa’s help with Caden’s brothers
  • My employer who is understanding and supportive
  • Prayer warriors all around the world who lift up Caden and our family

Requests

  • Complete healing and restoration of Caden’s body
  • Protection over all our boys’ emotional and physical health
  • Rest and sweet sleep for Caden, mommy, and daddy

Thank you for your continued prayer and thanks for checking on Caden. I hope you enjoyed the photo of Caden taken in earlier this month at Camp Bob Cooper during the Southeast Family Camp.

October 27th, 2012

Caden on oxygenCaden has been hospitalized for pneumonia and has tested positive for a really nasty virus. They think the pneumonia is bacterial given they way it has presented itself. Caden has been hospital and illness free for over six months. The one night he spent in the hospital this year was for recovery from back surgery. We strategically planned his next back surgery for two weeks after his birthday. He was scheduled to go to a pre-op appointment this coming Tuesday and then celebrate his 8th birthday on Friday 11/2. It appears that one or more bugs has decided to alter our plans. We still plan on getting Caden in for a back surgery on Wednesday November 14th, but will likely have to reschedule the pre-op appointment.

Caden started down this path of illness back on Tuesday. He popped a fever and required some oxygen during the day (normally he only gets oxygen at night). By Thursday the fevers had got worse, meaning they were peaking at about 104. By Friday his fevers were consistently breaking the 105 mark. The pediatrician said if Caden was worse or not improving by Saturday then it was time to get admitted to get some heavier duty medications in him that can only be delivered by IV. That is where we are at today. Caden’s fever hit 104 plus at noon and we were in route to the hospital shortly thereafter. Since be admitted they have confirmed a virus by doing a sputum (goober) culture. The also did anther chest xray (had one on Tuesday as well) and the latest xray shows that pneumonia has cropped up in the left lung.

Caden is in pretty good spirits. He has his skunk at his side and has enjoyed a couple of Curious George videos since arriving at the hospital this afternoon. Sherry brought Riley and Josiah to visit Caden this evening and they delivered some goodies for me. On a down side, the positive results on the virus keeps Caden on contact precautions. That means they mark is as being more likely to be contagious and will not let him go to the Atrium (MUSC’s way cool play room for patients and siblings).

One really cool thing that happened is that the hospital is allowing me to order a tray for meals. I asked if they were charging us for dietary services. And they are charging us even though we bring all of Caden’s feeding supplies from home. The hospital does not carry his brand of tube feeding formula. It seemed to only make since that we should be able to order a tray if they were charging us for dietary services even though they are not actually providing anything. They agreed and we get to save some cash, a bunch actually because the cafeteria is EXPENSIVE. And yes, I actually like hospital food as long as I get to order what I want. MUSC’s new patient menu is really nice and let’s you custom order every meal so I don’t expect to go hungry.

Please keep Caden in your prayers along with the rest of our family. We expect to be in the hospital with Caden into early next week. Riley actually broke out in tears when he heard on Friday that Caden might have to be hospitalized if he did not improve. These events are non-trivial in terms of impact on our entire family. We do not take these issues lightly and and pray that our family learns how precious and fragile life is and we also hope to grows closer together. We are very thankful that Sherry’s dad is able to help with the other boys at home while Sherry and I take turns with Caden at the hospital. Levi especially still needs his nap and does not do well visiting at the hospital for very long.

The picture above was taken fo Caden this afternoon on the way to the MUSC Emergency Room. Thanks for checking in on our little family and praying for our Caden!

September 19th, 2012

Daddy and CadenPhoto By: Refuge Studios

As the old saying goes, it is true with Caden. Thank God that the only significant thing to bring to your attention is that he has been remarkably healthy for about six months now. There have been the occasional pop-up fevers and one instance of pneumonia over the summer that caused a few long nights of suctioning, but nothing worth raising a stink over. We are hopeful that this is all a sign of Caden’s immune system maturing to a point to be able to fight off some of these short term bugs that previously manifested into long hospitalizations.

Caden does have an orthopedic surgery coming up in November after his 8th birthday. This will be an adjustment to the VEPTR rods in the back that were placed to treat scoliosis. We prayerful that we can get through this next surgery with only a single night in the hospital like we did with the last back surgery in April.

There has been some fun a travel in recent weeks for the Osborne family. You can check out the Daddy Life Blog for our latest adventures. I explain describe some of the challenges of traveling with a special kid like Caden.

April 11th, 2012

BEFORE scoliosis Surgery AFTER VEPTER rods placed

Caden is going in for an adjustment to the VEPTR rods in his back to treat scoliosis. Caden originally had rods placed in his back in September 2010. The pictures above are the before and after fromt he original surgery in 2010. The rods on the right have been in Caden’s back since 2010. The rods will have to be adjusted about every 6-9 months until Caden is a teen when his torso stops growing. At that point the rods will be removed and his back will be fuzed to keep the back from returning to the curved condition that existed in the fall of 2010. The photos above are the before and after photos as a result of the first surgery.

Caden has been experiencing some increased pain in his back in the past month or so. The orthopedic surgeon says that is an indication that it is definitely time for the rods to be adjusted.  The last adjustment as done in September 2011.

We expect Caden to go to a step down unit (space permitting) or an ICU for the first night. Then he will move to a regular room and likely discharge sometime during the weekend.

Your prayers for Caden’s rapid recovery would be greatly appreciated.

Don’t miss the story of Caden finding the Golden Easter Egg at the recent GFI Alumni Easter Egg Hunt.