Monday, August 29, 2011

Another Consult

Friday we noticed that Aaron's belly was swelling up again. He was gaining weight but not too much. Saturday came and his belly was still even bigger than the day before and he gained over 100 grams. Not what we want! The plan to wean the flolan remained the same and it is being weaned 1 microgram every 12 hours. He is now down to 8 from 12. His oxygen needs have increased but they do not look to be related to the flolan. Aaron's triglyceride level also skyrocketed over the week. This was supposed to get better with the change to the special formula. I headed to the hospital early yesterday morning to be there for rounds with the new doctor (one we have had in the past, I think we have had them all now).

Rounds finally started after 1:00 p.m. I asked about this formula and that if its supposed to contain a significantly less amount of lipids as opposed to breast milk and regular formula and that the lipids it does contain are broken down already, why are his triglyceride levels going up and is it really beneficial? The answer once again, "we are not sure". They did decide that they would need the GI doctors to now come over for a consult to see if they had any ideas. I also asked if we had hit the point where Aaron needs another tap. The doctor said that was probably what needed to happen and that he would do it right after rounds. Right after rounds turned into a few hours later.

The tap did not go as well as we had hoped. The fluid seemed to have a hard time coming up through the needle into the syringe as it was leaking around it. We had hoped it would bring his oxygen needs down like it did last time. The peritoneal fluid was also different this time. It was a murkier yellow and clearly had blood in it. Instead of being clear it was hazy. I commented on this to the doctor. He asked if the last time Aaron was tapped if he was getting fed. He was not. They ran labs on this new fluid to see what came back. At this point they have run labs on everything they can think of in hopes it will give the GI docs more clues on what is going on with Aaron. The only result that came back last night was that the fluid had really high triglyceride levels in it, over 500. What that means is yet to be determined. The GI docs will be called in today.

Yesterday was a long day. I left from home around 9:00 am and didn't return until after 10:00 p.m. I was able to duck into the sacrament service there on the floor which was nice. When I left last night I was really tired. I met a couple at the elevator on their way down. They were leaving with their brand new baby girl. The mother apologized for taking so long to walk to the elevator. I told her no problem, I knew how she felt. Her husband asked if I had children. I told him I had 5 and was there visiting one. I asked if this sweet baby was their first and he said yes. The mother was clearly wiped out. I touched her arm and told her it would get better and that everything would be ok. I wanted to give her a hug and tell her how fortunate she was for being able to walk out on her own two feet (even at a slow pace) and taking that sweet baby girl with her. I didn't though, that would have been too overwhelming for her. I cried all the way home, wishing desperately that it was me taking our sweet little one home. Yesterday was day 105 and we are not any bit closer to bringing Aaron home than we were over a month ago now. Its frustrating to say the least, yet everyday we are grateful he is still here with us. The tears come when I am most tired and only make me more so. They are a double edge sword sometimes.


Stacey said...

I cry with you Denise...I'm so sorry. Your strength is amazing and I think Aaron can sense that. Hang in there! Prayers are with you.

Peggy Glasmann said...

Oh Denise - my heart and tears are with you too. There are no easy answers. Just know that we all love you and we are so grateful that you have chosen to share this experience. If you were here or I were there I would give you a hug.

Sant Family said...

Ugh. I hope they find answers soon!