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.

No News Is Good News

Yes, this time no new blogs lately is good news. Everything is pretty much status quo around here. Home TPN is going very well and Noah is turning into a little porker! We've developed a pretty good routine around here. It's busy, but I have been able to go back to work a day or two a week when Brad can stay at home and Noah doesn't have appointments. I'm still always on edge as to when Noah will spike his next fever and we will end up back in hospital. As I look at our week, I find myself planning what we will have to do if Noah goes back in. And so, plans around here are always very tentative and we take things one day at a time. But for now, we are enjoying the breather from this nasty winter season and as we go into summer, we pray that it will last for a while.
Noah is loving the outdoors and is content to sit for hours in his stroller. He has also discovered that the grass is very much like hair and he loves to grab huge handfuls of it and pull it out. We also bought Noah a bumbo chair that we fell in love with at the hospital. It's the perfect size for him and he spends much of his time sitting in it.