August 21, 2006

There was more talk today about taking Aiden off the vent and ssing if he can hold his own on nasal canula again. This is a good thing but everything at this point scares me. It's good cause they wouldn't attempt it if they truley thought he was going to fail but scary cause if he didn't do well and had to go to CPAP that could just cause more problems since CPAP pushes air into the belly. In that case they would probably just tube him again and put hm on the vent.
They were also waiting for him to be more active and get his energy back and well I think they got what they asked for cause tonight he was fighting that breathing tube with everything he had. He wants it OUT!!!
Good news for the day is his belly distention went down. It went from 29.5 cm to 26 and has been staying between 26.5 and 26. His xrays have been looking better and better and he is still going #2 but there is still blood in it. The doctore told me it will take awhile for it to test negitive, but it's not that bright red blood anymore which is good.
She also mentioned that she isn't sticking to the "no food for 14 days" rule. She is taking it day to day and going to see how things progress. She said that she is feeling this could be just a bout of colitis and not necrotizing entrocolitis (NEC) again. Although similar they are different. Either way it is being treated like NEC and that is fine, I want him to get better and this should do it. If it is just colitis then that is better then NEC and the antibiotics should work like a charm.
On a sour note, Aiden had his eye exam today and has stage 1 ROP zone 2. This is very common in preemies and could correct on it's own and I am hoping it does, but we won't know, only time will tell. ROP is Retinopathy of Prematurity. You can go to www.charles-retina.com/rop-faq.htm It will tell you all about it and the treatment.
He will now have an eye exam every week to watch it and see if it worsens or corrects. i've been told it usually get worse before it gets better and from what the doctor said today, we are hoping that it stays stage 1 and goes to zone 3 for the next eye exam and then just corrects on it's one. but that would be a perfect world once the see ROP and we all know, this world is everything but perfect.
Back to the positive notes, they gave him blood today because his crit was low, and gave him lasix in between the transfusions. The lasix will help him pee off some of the fluuid he is holding on to. And it's working so far as it usually does. He is still puffy but starting to look like my little Aiden again. I spent alot of time with him today half of the day (about 11 hrs) and will again tomorrow. Ijust want to be there if they take him off the vent and make sure he is ok. i know it's the doctors and nurses job to care after him, but being his mom I can't help but want to be by his side and "protect". To be honest I feel really useless. I can;t really do anything but sit there and hold his hand, but it's got to atleast make him feel a little better to know I am there. Or manybe it just makes me feel better.
I know I should probably go to work tomorrow but it's hard. My head tells me to go because its out of my control and my heart tells me to stay with Aiden cause he needs me there. So I'm going to do a happy medium. I'm staying out again tomorrow and then will go back on wed and finish the week out. All i can say is I'm doing my best trying to juggle the hospital visits and work and everyday life. I'm doing my best trying to juggle the rides on the emotional roller coaster. I just hope the rest of the world can understand that and be patient.

Keep praying for my little man to get well and strong and come out of there sooner then we think. Everyday is a new day and a new day is one day closer. Right????

PS the picturs posted are from Friday before he got sick and put back on the vent. I haven't taken any new ones because I can't bare to take anymore with him on the vent.