Saturday Update

Sorry for the delay but it has been quite busy and I got sick so by the time I got home last night and got Ethan settled down, I crashed. I also lost my voice so thank you for all our friends and family who have called and offered support - it really means a lot to us. Please forgive us if we don't get a chance to call back but at least for today, I'm are not planning on answering many calls or returning calls so I can rest my voice (unless you're our mom or one of the docs:).

Hmm where to start. His first night of tube feeding went smoothly - they started him off slow. His second night wasn't as smooth and he threw up everything - including some undigested food about 1:30 am. Consequently he also lost weight, although just a bit. He still had undigested lunch from eating at 4, which wasn't great, but we're just going to have to keep with it and see if there is a pattern. If the same thing happens tonight, we will have to back off and try to change up the Pediasure and/or change some of his meds.

They also doubled his antibiotics he's been on since Monday because he is still not close to 100 percent. Even though that's not the main reason he's here - he was nearly admitted last Sunday because of his breathing and wheezing so we really need to address it.

They are analyzing a stool sample to see if he is really taking in the nutrients and fat from his food or if it just goes right through him. We really think that will be the key to guiding us where we look next.

Otherwise he is having fun. Ethan has helped him turn this room into a playroom and they are having a blast with watching a ton of movies.

We are putting a hold on the CT scan because of whatever is going on in his lungs right now. If they sedate him for the CT scan and he's having issues with his lungs right now, he could have to be intubated and on oxygen and we would be here at least another week. They think the tests they have in right now may tell them what's going on or at least point them to the right area.

The nurses are extremely skilled and obvious veterans on this floor and the docs we are working with are superb, so we are in a good place. His basic blood work came back relatively normal except for some areas that indicate he is sick right now, but when isn't he:)?

Most of what they are looking at makes him more susceptible to infections and viruses, but we already suspected that. It just makes the washing hands, hand sanitizers, flu shots and immunizations that much more important.

He has ripped his NG tube many times and since he is only doing night feedings, we are waiting to reinsert them until night time so we don't have to worry about it.

Jim and I are going to learn how to insert his NG tube tonight so please pray for us. It's not supposed to be difficult, but neither of us set out to become medical professionals so we are a little apprehensive of doing it. It's also not fun doing stuff to your own kids when they are screaming and pleading for you not to. They are ordering us the equipment we need at home and we are hoping this is just a short-term deal.

We are so grateful to be getting answers, but still it is a bit overwhelming. We definitely have moved to another level of care. The benefit is they all really take your concerns and opinions very seriously as a parent (not always in general peds). The hard thing is being part of the chronically sick kids, but at least we have what we need here.

Not much else happening this weekend. Thanks for continuing to pray. That is what we truly need more than anything and what helps us to walk this journey and have the strength our boys need for us to have.

PS: I am working on adding a subscription link where you can enter your email and get notices each time we update the blog ... just an FYI for those who are interested.