Friday, January 29, 2010
So during my last post I explained Ayden's complications with feeds and coping with enzymes. This past week has given no relief to these issues. The enzymes gave him issues again and again. Attempts to mix enzymes and place them down the NG tube seemed to prove problematic and so the type of enzyme he is being given was changed from a powder to a more of a pellet form of enzyme. In addition to the change in medicine the dosage was changed as well. Instead of having enzymes every 4 hours, he now only has to have them every 8 hours. These changes seem to make him much happier and seems to break up the monotony of it all for him.
In addition to these changes they have been working on getting Ayden fully transitioned onto formula. At the beginning of this week he was at 30% Progestimil and 70% Donor Breastmilk, as of today(Friday) he is now at 100% Progestimil. This was such a fast transition this week and we have been on pins & needles the entire time. So far he seems to be tolerating it but seems to hate the taste of it. Before they figured out the enzymes he was having major difficulties gaining weight but that all seems to be under control.
Meanwhile, this week Aydens broviac began to have issues. It seems as though it grew out of place and began to infiltrate when they would hep lock it. The morning after they realized this they removed it. They had always told me he would need to go down to the OR to get it removed but to my surprise they were able to take it out at bedside and did not even need to put him under any anesthesia. They put a peripheral iv into his scalp(the nurses seem to like this spot for IVs and to draw labs b/c its so squeaky clean & the veins are so easy to see because of his lil bald head) for his fentanol and he was a happy camper. When it concerns feeds, he has went from eating 60% of his bottles to only eating about 30% within the past week and a half...The doctors seem to be clueless as to why he doesnt want to eat. Some are blaming it on his chronic lung disease and some are saying it may be his pvl....who knows, but he has been started on a 7 day countdown (he is on day 2 or 3) and if he doesn't start taking all of his bottles they are going to schedule the surgery for "g-tube" placement. I don't see him improving this much within the next 4-5 days so I am trying to prepare myself for all of this. The good news we did hear about all of this is that his feeding issues are the only things keeping him in the hospital. On Monday the doctors are going to put in for a surgical consult and start making plans for the procedures. We are expecting to get his two hernias repaired and his g tube placed all on the same day. The nurse practitioner told us today that after all that is taken care of all we need to do is order our home health care equipment and he is free to come home!...We are crossing our fingers in hopes of no more setbacks!
So this week has brought some good news and some bad but overall we are excited to be given an action plan that gives us hope that our precious 'lil' man will be coming home soon!
Another happy fact!....Ayden now weighs 6lb 15oz as of tonight!...almost 7lbs!...we never thought it would happen!
...here are some pix of my lil man from my phone...he doesnt like to stay awake or calm if i take the time to use my other cameras so these are some cute ones of him just bein him!...so yeah, he sleeps a lot