Still Here

It has been a while since I've updated since we are still in the hospital. Noah has had a difficult week. He began spiking fevers again a few days after his temporary line went in. Blood cultures showed a new line infection. Again he wasn't responding to antibiotics. He also began guarding the leg that his femoral line was in and crying in pain when we tried to move it. So again it was decided that this line had to be pulled. Anesthesia put in a peripheral IV (twice, as Noah decided to pull the first one out himself) and tonight he will go back to the O.R. for a new tunneled central line. We take the risk that this line will again become infected, but Noah needs IV access so we do not have much choice. He is still having low grade fevers, but hopefully this will now improve.

We also did a PH study on Noah last Monday to see if he is still refluxing. We do not have the results yet, but it was a miserable experience and Noah wasn't tolerating his feeds well at all. So we have once again taken him off his feeds. Noah's comfort and quality of life is most important. Once we get in a new central line, we will restart full TPN likely on a long term basis, or as long as his liver will tolerate it. The good news is that through all this his blood sugars have stabilized.

Please continue to pray that we will be able to put a plan in place to get Noah home. We need some sun!!

Another Tough Weekend

It's been over 2 weeks now and Noah is still in hospital. Last weekend, he seemed to be improving on the TPN. He finished his week of antibiotics for his line infection on Monday. Then on Wednesday evening Noah began spiking fevers again. New blood cultures were drawn from his central line again and he was restarted on the antibiotics. Turns out he was septic AGAIN!His cultures came back growing both Staph and Strep this time. He continued to spike higher and higher all week and his hemoglobin and platelets continued to drop. On Friday evening he was given a blood transfusion, and on Saturday he really began to deteriorate. So unfortunately, he ended up going the to OR on Saturday afternoon to have that nasty line removed. Within an hour of coming out of surgery, he was improving dramatically! It was tough to lose this line after only having it for such a short amount of time, but it was definately the right decision. The surgeon put in a temporary femoral line. So once Noah is over this infection, he will have to go back to the OR for yet another surgery to have a new permanent line put in. Unfortunately, Noah needs his line to live, so although the risks are high, it is still his best chance. A silver lining in all of this, is that his blood sugars seemed to have settled and Noah hasn't had any lows for a week now.

Noah also had an echocardiogram done today to check for clots in his heart. He has another small clot there, so that line would have had to be removed anyways. We do not know yet how long he will need to be treated with IV antibiotics and blood thinners. He also had a gallium scan done to search for any other hidden sources of infection and we are waiting for results. So we do not know yet how long this hospital stay will extend. We are tired and frustrated and desperately hoping for a break from all this. Thank the Lord for those "Noah smiles" that pull us through each day.

Back in Club Med

Well, we had a wonderful 9 days at home, but on Monday morning, we awoke to get ready for Joshua's 5th birthday party that afternoon. But when I went to unhook Noah's TPN, I noticed that he was breathing pretty hard and he wasn't looking good. Sure enough, he had a fever too. So I frantically raced around to bake some cupcakes for Joshua yet, and make sure Brad knew what he had to do for Joshua's party. Kailyn & Joshua were quite upset that Noah and I had to go, but Noah's breathing was continuing to get worse. So it was with a heavy heart and great disappointment that I took him back to the ER. He was immediately taken into the resus room and given a ventolin and then a vapo mask. This seemed to settle his breathing somewhat. All the big gun antibiotics were started, as they always are with Noah.
Turns out the little guy has grown another new bug in one of his lumens in his central line. He is growing Staphepi in his blue lumen, which has always been our sluggish one. Likely a clot formed in the line and gathered some bugs. Right now we are running antibiotics through that lumen, in hopes that we can clear the line infection up and not have to pull the line. Our ID doctor hasn't decided yet how long we will have to do IV antibiotics for yet.
But unfortunately, we have also come across a new problem. When Noah came into the ER, his blood sugar was very low, which was part of the reason why he looked so bad. It came up after they gave him a good sugar boost into his line. But all week, he continued to drop his sugars despite being continuously tube fed with lots of sugar in his feed. So he was diagnosed with ketotic hypoglycemia. In ketotic hypoglycemia, the body doesn't have enough stored carbohydrates to correct the low blood sugar because its stores are easily depleted. As a result, the body converts fats into usable carbohydrates to meet energy needs. A byproduct of this process is ketones. When ketones build up in the blood, they can lead to serious problems, such as coma. Unfortunately, we haven't been able to find the reason as to why his body is doing this, but it is likely that his gut is just not able to process the sugar, just as he has trouble processing fat. Just when we think we have things figured out with Noah, another piece is thrown into the puzzle. I don't think this is a completely new problem though. When his sugar gets low, he gets sweaty, irritable, tired and pale. We've all seen him do this lots in the past, and we've always said "that's just Noah". So this may have been happening for a while, but he was able to bring his sugar up on his own until now.
So yesterday we started full TPN (both basics and lipids) that runs 24hrs a day, and stopped the tube feeding altogether. His sugars have been fine since starting TPN. Right now this is our short term solution, but this coming week, we will need to figure out a more long term plan so that we can get Noah home again. It is so very hard to be stuck in hospital when the weather is so beautiful outside and there are so many other things we'd rather be doing. Our short time home was just a tease and as Kailyn commented on Monday morning "I hate this!!". And so all we can do is continue to wait and trust that yet again, in this valley, God is here.

Fred Penner

Thought I'd post some bright spots from our last hospital stay, including meeting Fred Penner and hearing him perform. He even let Noah play (or rather, take over) his guitar. Music therapy was always a highlight of Noah's day.

Noah spent alot of time looking hanging on the edge of the bars of his "prison". He got really good at pulling himself right up on his own. Great for the abdominal muscles!

~HOME!!~

After a 6 week stay, Noah is finally home again and doing very well. He finished his 6 weeks of antibiotics for his bone infection this afternoon. He had actually been discharged last tuesday and we were going to finish his antibiotics at home. However, Noah had other plans, and decided to pick that day to come down hard with a combination of a bronchial virus, a small pneumonia and asthma. He had some very rough days and nights where he ended up in respiratory distress a few times and almost got moved to PICU, but he responded fairly well to the ventolin masks. On Friday he was needing masks every 30 minutes to an hour, but over the weekend he slowly improved and his smiles have returned. So we were finally able to get out of hospital today before Noah caught anything else.
Because of our family history of asthma, it is likely that Noah does have asthma as well, so we now give Noah flovent through an aerochamber twice a day at home. He also needs anoxyparin (a blood thinner) twice a day for another 2 months to completely clear up his blood clot. Unfortunately this has to be given by injections, which is no fun for any of us!
Noah was also having alot of trouble handling his TPN lipids in hospital. His triglycerides have been quite high, meaning his body is having a hard time metabolizing the fat. We are now only running the lipids five nights a week and 1/4 of the amount we were giving Noah before. Hopefully this will be enough to see some weight gain. He was also started on a new medication called carnitine. Carnitine is a natural substance that our bodies produce. It is important to the transport of fat into the mitochondria where it is turned into energy. The hope is that this will help his body metabolize fat better and help him GROW! Noah lost some weight through all his battles this spring. He was almost 12lbs, and is now hovering around 11lbs. Hopefully we will be able to make up some ground now that we are home and he is well again.
Once again, God has seen us through another difficult journey and we praise Him for the joy and laughter that Noah brings to our lives. Thank you to all who have supported our family again in so many ways these past few weeks as we have been in survival mode. We can't thank you all enough. And thank you again to the wonderful staff on CH5. You know we love you all like family!!

Week #6 of this round.

It has probably been so long since an update was given about Noah that some may not even check here any longer. But for those who do, here it goes. Noah and Nichole are still in the hospital. It is officially half way through week #6 of this last stay. Noah had recovered quite well from his central line surgery and was slated to be released last Tuesday when he came down with what they believe to be a virus. This gave Noah major difficulty with his breathing and even got the attention of the rapid response team in the hospital.....twice. This also triggered an asthmatic state and also led to a small pneumonia in one lung. This triad of respiratory issues has kept him in but not down. As we all know, Noah continues to fight his way through. Although it is sometimes frustrating that Nichole and Noah can not be at home with the rest of us, we also know that Noah is exactly where he needs to be and doing exactly what he should be doing right now. God is working through his life in ways that wouldn't happen without these situations. Praise God!

Hanging in There

Noah and Nichole are still in the hospital, but we are all hanging in there. Noah recovered remarkably well from his infection and also the clotting. He had a central line put back in on Tuesday May 29th and things are going well. He and Nichole unfortunately will be spending more time in the hospital until his fluid and feeding issues are resolved. Although the "Novelty" of being in the hospital has worn off, it is still as difficult as always. Continue to pray for all of us as we patiently wait for Noah and Nichole to return home.

Brad

Hospital Update

Noah is doing much, much better. He was a very sick little guy over the weekend. His hemoglobin and platelet count were down in his boots. He needed a couple of platelet and blood transfusions to get things back under control. His platelet count is now out of the danger zone and his hemoglobin is better than it's ever been! Turns out his blood was growing a gram negative bug called klebsiallis, rather than the pseudomonous we all thought it would be. Sadly, he had to have his port removed and went to the OR on Monday night. He also had a temporary femoral line put in.
The antibiotics are doing their magic and Noah is no longer spiking fevers. He was even able to get out on a pass today for a few hours. The plan for this week is to ultrasound Noah on Wednesday or Thursday to see if the clot is gone. If it is, then he will go back to the OR to have a new permanent tunneled central line put back in. Hopefully after he is recovered from that, we should be able to finish out the rest of his 6 weeks of IV antibiotics at home. Thank you all for your continued prayers and support.

Surgery Tonight

Noah is having his surgery tonight to remove his internal port. It was found to be the host of a significant blood clot and had to be removed as soon as possible. Noah also had a bone scan today and it is suspected that he has a serious infection in his left tibia as well.

What this means in a treatment perspective as far as we know tonight is removal of his port, insertion of a femoral line for IV access, and subcutaneous injections of anti-coagulants for at least three months to go along with his 6 week regiment of IV antibiotics.

Please pray for health and recovery and that we can do many of these treatments at home in the near future along with his other treatments.

Going In...

I was looking forward to this weekend, as Noah's palate surgery that was originally going to be yesterday was cancelled. But it seems that Noah has other plans and so we are off to the ER this morning. For over 24hrs now, Noah has been spiking fevers up to 40.5C off and on. Yesterday afternoon he seemed fine, but this morning he has a fever again and is looking very pale and dry. So once again, I have packed our bags, expecting to be admitted.