Saturday, March 19, 2005

 

Caden breaks past 10 lbs

Caden is doing great. He was weighed on Thursday by the nutritionist at 10 pounds 7 ounces. That is a gain of 13 ounces in one week. Caden continues to have periods where he can go days without any reflux. He can also have days where he will reflux several times in a 24 hour period. We have not been able to find any predictability in what causes the reflux. He will sometimes reflux 5 minutes before a feeding and other times he will reflux when he is almost finished with a feeding. We still have a nurse monitor him at night since there is absolutely no predictability to his reflux and he still is showing no significant signs of swallowing. There is still a high risk of aspiration or drowning if he refluxes without being able to swallow.

Caden was also switched to a new formula over the past week. He is now completely transitioned to a 50/50 mixture of the new formula (Similac 60/40 PM) and Mom's milk. It entire mixture is still fortified to 24 calories. The new formula was introduced primarily due to the results of some blood and urine tests that the endocrinologist had run to determine Caden's Calcium levels. The new formula has done wonders for Caden's diarrhea. We also have Caden tested for milk allergies this week due to the GA doctor insisting that Caden's diarrhea was probably due to a milk allergy. We knew better, and nipped that in the bud real quick by having Caden tested for the milk allergy. We felt that a little prick on the skin was much better than weeks or months of experimentation with formulas to see what Caden's reaction would be to the milk proteins.

The nutritionist previously mentioned is part of a group of therapists and specialists that visit Caden at home. These services are provided through a program called BabyNet. BabyNet brings services to the home of special needs children from ages birth to three years. The program provides services at no cost to the family. BabyNet bills our insurance and Medicaid first and then they have funds to pay any outstanding balances left over. Caden gets a physical, speech, and occupational therapy along with the nutritionist and early interventionist through this program. These folks all have come to evaluate Caden so that they can work with Sherry and me to come up with a plan for Caden's growth. This plan called an IFSP (not sure exactly what the acronym means) and includes general short and long-term goals for Caden's progress in all the areas covered by the therapists. The nutritionist was very pleased with out progress on Caden's feeding. Sherry had gathered some information (growth charts and mathematical formulas) from a friend who has a child with similar feeding problems. I used this information to build a spreadsheet to calculate the daily volume that we should be feeding Caden to get him up to "normal" weight for his age. The nutritionist gave us results from her calculations that were within 1% of what I had calculated. She was very pleased with our interest and attention to detail in regards to making sure Caden gets the proper amount of food each day. She will come a weigh Caden and make sure we are on track with his feeding volumes on a weekly basis.

I hope this posting is exciting to you as it was for me. Things have really been going good for Caden and the rest of the family. We are a bit unhappy that I will be departing on travel tomorrow for over a week. I will be in New England all the way through Easter weekend. We have verified that Sherry will have a nurse here every night that I am gone. My Mom will be in town to help out through the Easter weekend.

I would like to ask you continue to pray for all of us. Sherry needs to have a peaceful and stress free week. I ask for traveling graces. My Mom had some outpatient procedures yesterday and needs comfort and healing. Our dear friend Robin is having several issues in her family that she needs wisdom to deal with. Our friends who have gave us the feeding calculations are taking their son in to get a g-tube this week. Their little boy is very near to Caden's age and they need peace of mind that they are making the right decision to get this procedure done. We need to continue to thank God for the blessings that we have already received through Caden's healing and for the support from you our family and friends.

Please don't forget what the coming week celebrates.

"For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." John 3:16 KJV

Blessing to you all,
Hank O

Saturday, March 12, 2005

 

Caden's Week

Caden is doing pretty well. He has had a significant amount of reflux over the past couple of days. This is not so different from other times except that Caden went 3 days without any reflux at all! We've never seen the reflux disappear for so long and at a time when we were increasing his food and suctioning him more than ever. When the reflux came back, it came with a vengeance though. We have backed down on his feeding to try and help keep down what he does get. Caden also continues to have diarrhea. We got some results back from the endocrinologist that is resulting in a formula change. His formula has been a 50/50 mixture of Similac Alimentum and mom's milk. The Alimentum contains about 4 times the level of phosphorus that Caden should be getting. His blood and urine tests from last week confirmed Caden having a high phosphorus level which has resulted in some calcium issues (nothing serious now, just would be in the long term). We are in the process of changing his formula to Similac 60/40, a special order formula for infants with hypocalcemia (body not producing enough calcium). Hopefully this formula change will stop his diarrhea and allow for better weight gain too.
The great news is that Caden has been approved for Medicaid this week (since approval is based on his income). This will cover the rest of the hospital bills, doctor and specialist co-pays, and all prescription co-pays either previous or current ones. This is such a blessing and stress reliever because each thing adds up. Other services we will be starting soon are speech therapy and a nutritionist. Speech works on feeding issues and oral stimulation to prevent adversions since he is fed through a G tube. I am most excited to receive help from a nutritionist. She will help us figure out the amount of calories Caden needs to gain weight and how to work on catching him up little by little. Who knew there's a mathematical formula to calculating this?! We are also working on getting a Medicaid Waiver through Department of Disabilities and Special Needs (DDSN). This waiver will extend the Medicaid benefits mentioned earlier to possibly include nursing care. We have about 40 of the 60 visits our insurance provides left. These 60 visits go quickly because we use 5 visits a week and more when Hank travels over a weekend. Please join us in praying that God will provide a quick approval and a short "wait" on the list. Philippians 4:19 says "And my God will meet all your needs according to his glorious riches in Christ Jesus."
Amen.
Hank and Sherry

Monday, March 07, 2005

 

Home Sweet Home

Hello family and friends,
Yes, we are home now. Caden was discharged from MUSC this morning and we arrived home this afternoon. Caden seems so much more relaxed and is back to his smiling self. He was not liking all those leads stuck to him and would in fact pull them off - one in each hand! Riley is of course happy to have everyone home. The first thing he wanted was to "see Caden" and touch his head.
Caden did well being off the oxygen last night and the doctors were ok with his oxygen saturation. Caden is back to being very junky (congested sounding) with a hacking cough. I guess it's better to get all that junk up though. It just requires an incredible amount of suctioning. He has become quite a personality, grabbing and hanging on to the suction hose. The doctors say that he did not have RSV but one of the numerous "respiratory viruses" out there. I praise God for my biggest answered prayer; Caden never had to be intibated. The first couple of days the respirator machine was in the room "waiting" to be used but never was.
Caden did receive a little blood first thing up on 7C though his level was just a little low. The doctors felt that it would improve the labored breathing and his blood oxygen level since oxygen clings to the hemoglobin. Thus, it would make since that he had a lower oxygen saturation before the transfusion. It is not known if Caden needed the blood because of the blood being drawn for tests, the virus, or some other reason. As suspected, Caden did much better after the transfusion. He is also back on an iron supplement.
Caden's feeding amount is back up to where it was before he went into the hospital and he is doing great. I can't recall the last time he refluxed and we are suctioning him more right now (suctioning has in the past triggered reflux)! I think Caden's lowest weight was 9 lb. 8 oz. which is only down 4 ounces from the doctor's office weight that was taken the day he was admitted. I'm thrilled that through all this he didn't lose much weight. We have worked very hard for every ounce Caden puts on! Every nurse and doctor that saw him commented that he has gotten so big. Four pounds makes a big difference!
Tomorrow is a big day. Caden goes to see his pediatrician tomorrow morning to get checked out. In the afternoon, Caden has a hearing test and an appt. with Ear Nose Throat at MUSC. ENT will recheck his vocal cords and will discuss with us some new research and a possible treatment to the swallowing dysphasia. Hank and I are being open minded enough to listen to all options though we are not for radical, invasive, or new treatments that don't have much research and haven't been done on many babies, So we'll see.
Well that's about it. My favorite night nurse will be here soon and that means peaceful sleep for all. Thank you for your prayers. I hope you are learning as much about God as we are through our little boy and these tough events. God is so faithful!
In Christ,
Sherry

 

Comments should be working now

I did not realize that the comment links were not working for everyone. They should be working ok now. Pleas email me if not.

Thanks,
Hank O

 

Caden is still at MUSC but improving

Caden continues to improve. He is still in the Children's Hospital at MUSC in his own room. Caden was taken off oxygen for the first time on Sunday morning. He has been on and off the oxygen since then. He is doing pretty good without the oxygen tonight and should get to go home on Monday if he still looks good to the doctors without oxygen. Caden is back to eating pretty much a normal diet for him via the g-tube. He is tolerating the food fine and is at about 90% of the amount he was eating a week ago. He is still on a 50/50 mix of mom's milk/formula that is fortified to 24 calories.

I am staying with Caden at night and Sherry is here during the day. Sherry's mom is in town to help take care of Riley. My mom and sister left on Sunday afternoon. My mom has been in town since Caden was admitted to the hospital on Wednesday.

There was never a specific diagnosis of what caused Caden's respiratory problems. It has basically be attributed to an unknown virus. There was really nothing the doctors could do but treat the symptoms and help make Caden as comfortable as possible until the virus ran its course.

We thank you for your thoughts and prayers. I hope you enjoy the new pictures for weeks 17 and 18.

Hank O

Friday, March 04, 2005

 

Caden is doing better

Today Caden was moved out of the PCICU to the 7th floor of the Children's Hospital. He is in his own room and Sherry is staying with him tonight. I stayed in the PCICU with him last night. We were just not 100% comfortable with leaving him. He had gone back on compressed (normal) feedings and that raised the potential for reflux. The PCICU doctors had never seen Caden reflux since he was never fed much until after moving out of the PCICU when in the hospital that first time. We were afraid that the staff in the PCICU might not realize what was normal for Caden and decide to start changing things out of fear that the severe reflux was tied to his respiratory problems. Caden's reflux is very difficult to describe and tends to scare the pants off of just about everyone who witnesses it for the first time. Imagine a normal moderate to heavy spit up from a 4 month old baby. Now imagine it all coming out the nose like a running faucet. It is not a pretty sight, but is unfortunately a frequent occurrence with Caden that has nothing to do with his current condition.

We believe that he will likely be released from the hospital before the weekend is over. Caden is breathing much easier and slower on average than he was yesterday. He is still having short spells of heavy and/or fast breathing but those spells are becoming less frequent. Caden is having some pretty fussy spells that are hard to figure out. We think that he is just uncomfortable with the oxygen and monitoring leads. He has six separate monitoring leads plus an IV line and oxygen. Oh yeah, his feeding tube too. This is quite a mess of cables and hoses that he has not seen since New Years day.

Caden did get a blood transfusion today as well. They even had to start a new IV since the one that he originally got on Thursday clogged earlier today. The blood was given primarily to replace all that has been drawn to do lab tests that can give accurate measurements of his current respiratory condition.

Sherry and I are doing pretty good. Many of you are lifting us up in prayer. We have also had a few visitors that have just warmed our hearts. We had a visit yesterday at around 1 PM from two friends who had just come from another floor of the hospital where they had lost a loved one within the previous hour. We knew they were there with their Aunt. I greeted them at the door of the ICU and asked how their Aunt was doing. They told me that she had gone to be with Jesus just about an hour earlier. I wanted to say I was sorry, but quickly realized that this was actually a happy day for their Aunt. This Aunt was over 90 years of age and was ready to go home. She had lived with our friend for about 14 years. They told me that they expected her to go home yesterday, but ended up getting surprised that it was not an Earthly home that she returned to yesterday. I can not express to you how much it warmed my heart to have them stop to visit Caden and us at such a time in their lives. They are good Christian people as was their Aunt. I believe that a close walk with the Lord makes it much easier to accept the passing of a loved one. I know that it made the passing of my grandfather just a few weeks ago seem more like a "see you later" moment than a "good bye". For this reason I can understand why they were so at peace with the loss of their Aunt who had a wonderful and longer life than many of us will be blessed with.

I hope you are inspired by the events that I have shared with you today. God is at work in our lives and he is answering prayers. Your prayers are being answered and are greatly appreciated by us. God bless you.

Hank O

Thursday, March 03, 2005

 

Caden's in the Hospital

Caden was admitted to the PCICU at MUSC this afternoon. Caden is stable but still at risk for going on a respirator. He is in the ICU getting oxygen and IV fluids. He is being monitored closely for respiratory rate, difficulty breathing, and oxygen saturation of the blood. He was looking okay enough when we left about an hour ago that they were going to start slowly feeding him formula via his g-tube later tonight. His lab results have come back negative for RSV and a couple of other things. It is likely that he just has a nasty little virus that will have to clear on its own. Caden is getting precautionary antibiotics until some lab results on some cultures get back.

While he is in this ICU that is special for heart patients, his presence there is primarily due to the fact that there were no beds available anywhere else in the children's hospital. On top of that, he has spent over 25% of his life in that ICU and those folks at least know his name. They do not know him as well as we do and that made it hard to leave him tonight. Sherry and I take comfort that the Lord knows Caden better than anyone on this Earth and that the Lord will protect him. A lot can happen once a child leaves the hospital. He has not been seen for over 80 days by these ICU doctors. Caden has been seen by more than a dozen doctors, specialists, and therapists since he was last in the hospital and we as his parents and the good Lord are the only ones with the connection to each of those professionals. It is hard to hand over care of our little boy to folks who have to sift through a foot of records to get an answer to simple questions regarding his care.

I know my babbling may not make a bunch of sense. The short of the story is that today was a really tough day for Caden, Sherry and me. It probably rank this day right up there in the top three toughest days yet for me concerning Caden's care. That is as clear of a picture as I can give you about today's events without going into the details.

Please continue to pray for Caden and us. Caden has been and will continue to be protected by God's grace. Sherry and I are much more suseptible to the influences of things that can cause our faith to waiver. Please thank God for his protection over Caden and ask for strength, discernment, and patience for Sherry and me. My mom came in on short notice to help with Riley so I can continue to work and Sherry can be with Caden as much as possible during the day. Sherry's mom and dad will come in Sunday to relieve my mom. Thanks in advance for your thoughts and prays.

Hank O.

Wednesday, March 02, 2005

 

Caden needs prayer

We wanted to let you know that Caden needs your prayers. He has some pretty nasty symptoms of something - a persistent hacking cough causing heaving/gagging and massive amounts of snot that he’s pretty good at blowing out his nose on his own. The Dr. heard wheezing today. He was given a breathing treatment and that didn’t clear it up. He gave Caden some antibiotics and steroids to help the breathing treatments be more effective. These medications also help with inflammation. He also has diarrhea that may not be related to this recent illness (the gastrointestinal and endocrinologist are working on that). We spent hours trying to find somewhere to do a RSV culture of the snot but couldn’t get it done (long frustrating story). Caden didn’t see his normal Dr today because he wasn’t in but we have a scheduled “well check” with him tomorrow. We will thus see Caden's regular Dr tomorrow at 10 something and he will re-listen to him and determine if he needs the RSV culture done or a more aggressive path of treatment. The Dr we saw today scared me when he told Hank over the phone that he considered admitting Caden to the hospital tonight for observation. He assures us that it’s not because he thinks that Caden is that sick but because this is a first time for Caden having this wheezing and with all Caden’s been through… The doctor was comforted by the knowledge that we have a LPN in our home tonight looking after Caden in addition to an apnea monitor. The doctor has already called this evening to check on Caden. Yes, we did finally get the insurance to approve in-home nursing care for 8 hours per night.

Oh, Caden got a renal ultrasound and has 2 working kidneys. They do have some calcium deposits on them but the endo. Dr is not too worried. He is investigating the cause and thinks it is from the formula. It’s a complicated explanation.

I think this is everything. Next week is a busy one. An ENT (Ear, Nose, and Throat) appt on Tues. as a follow up to the one he had in the hospital (b/c of vocal cords) and Cardiology on Wed. including an echocardiogram, chest x-ray, and EKG.

He weighed in at 9 pounds 12 ounces on Monday at the endocrinologist.

Sherry and Hank


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