Saturday, June 30, 2007

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!

Friday, June 22, 2007


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!!

Tuesday, June 19, 2007

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!