It is true, Jill's update has been sitting in my [Kristen's] email inbox since late yesterday night. This is the first I have been able to log into my email and get it posted. Sorry for the delay.
Here it is (words from Jill):
Tuesday started off well for Matthew. We knew it was going to be a restful day for him. And the morning was pretty uneventful. Labwork was all normal; the ultrasounds were normal, the upper GI just showed delayed movement through his bowels, and also that he could not tolerate that amount of food in his tummy at once. The epileptologist reviewed his EEG (they did an overnight one on Sunday) and said that it looked just like the one that had been done in April. Confirmed that some of the movements we saw were not seizures and said for him it looked the same.
The ENT doctor came in and met Matthew. She talked about what her role would be in the procedure tomorrow; and that she thinks his addenoids are part of the problem. She said she would look at them; and if she felt like they were she would remove them.
Then about 1 pm, Matthew started having problems keeping his oxygen saturations up. He started sounding more junky in his lungs. The nurses put him on ozygen. That helped for awhile, but he was breathing SO hard. They did not feel comfortable keeping him on the floor. The epilespy wing is removed from the rest of the hospital; and so anytime respiratory therapy needs to come across from the hospital to a separate building. They felt that due to his increased respiratory distress; it would be best for him to be on a regular medical floor. They did another chest x-ray; which didn't show any worsening, blood gases, which were good; and then moved us over. While I am sad we are not where we know all of the nurses and are comfortable, the upside is that I can have my computer in the room, and my cell phone too. I do feel like I can communicate with the outside world again.
They have ramped Matthew's treatments up to every four hours; and started another nebulizer treatment. They started steriods to give in his g button, and now he is on high flow oxygen. As I sit here writing this; Matthew is working pretty hard to breathe; but is keeping his oxygen levels up.
I am doubting we will doing the procedure as planned tomorrow due to the fact he will need to be seddated for this, and this is not the best plan when you lungs are already compromised. We will see what GI and ENT say in the morning.
On a weird but crazy side note; Matthew's retching has essentially went away. He will still vomit occasionally on secretions, but no vomiting is happening. Praise the LORD! We have exchanged one probem for another :(
Despite everything he is doing right now; Matthew is still giving smiles. When I think about how hard he is working; I knowI would NOT be smiling; I be downright sad and whiny. He is truly a fighter; and we hope that he can continue to be strong and fight yet another thing off. We want to bring him home so badly!