This is Brad writing to give an update on Noah and Nichole. Please continue to pray for Nichole and Noah as they have spent a lot of time in the hospital over the past while and Kailyn, Joshua, and I would love to have them home soon.

Noah is doing very well with his temporary femoral line and even ventures down to the hospital play room on a regular basis. Both he and Nichole are a great testimony to those at the hospital and we are thankful for those opportunities.

Kailyn and Joshua are learning a lot about hospital life and learning valuable lessons in patience and appreciating everyday the value of health and life. It is sometimes too easy to see the not so great side of being in the hospital for hundreds of days like Nichole has been. We shouldn't forget the miracle that Noah is, and the fact that we were told that he would never even live. Not only is he living, but loving life. God is good and knows what he is doing.

I also want to remind everyone what an awesome wife and mother Nichole is. She has spent over 225 days in the hospital with Noah over the past year. Although some people consider this routine and "normal" already, each day is as hard as the first and each night on the chair is as uncomfortable as they all are. I love Nichole and everything she does to be there for Noah and for the record...she never complains about the circumstances around it. I appreciate her very much!

There is a possibility of Noah being discharged next week if all goes well, so please pray that this can happen.

Brad

Trusting in the One

Noah had a new line put in on Friday, but unfortunately it was not the permanent one I had hoped that it would be. As there were no monitored beds available, the anesthesiologist was unwilling to give Noah any sedation. And so our surgeon decided that it would be best to put in another temporary femoral line until Noah has been treated for a while with antibiotics and we make sure he is completely infection free. So, under only local anesthetic, another femoral line was put in. Thankfully, the surgeon allowed me to stay in the OR with Noah the whole time, but it was a very rough time for both of us.

With his new line in place, Noah has been doing well, other than a cold that he's fighting at the moment. We pray that this line will last until we can get a new one placed. If it doesn't, we will be back to square one again. Talk of discharge is in the works. We are hoping to be able to get Noah home and come back into hospital after a few weeks of antibiotics to have his permanent central line put in. But because of the risks of a femoral line, we may be unable to be discharged into the home IV program. This would mean that Noah would be stuck in hospital until his new line could be put in. So lots of details to work out yet and the plan seems to change daily.

We are tired, discouraged and so ready to be home as a family. And our hearts have been very heavy this week for my sister and brother-in-law (Jamie & Erik) and Erik's family. Erik's brother Nathan died tragically last weekend. A grim reminder of how precious life is and how quickly and unexpectantly it can end. Nathan touched our lives and we take comfort in knowing that he was ready to meet his Maker. We can't help but ask "why" as we weep for those left behind to mourn his absence. In the fitting words of Nathan & Rosanna from a comment they left on our blog a few weeks ago "Trusting in the One who holds all our tomorrows." Our thoughts and prayers go out to you. Oh, how we wish we could be there with you!!

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.