I saw Ava today as soon as we got into town. Thankfully my mom came with me. I might as well give an update by systems:
Respiratory:Ava is off oxygen for the most part. She is put back on here and there for short periods of time when she is struggling a bit. Some nurses still suctiion her mouth when she coughs up a lot of mucus, but I think she can handle these secretions on her own, but her non-primary nurses (especially at night) are too scared to watch her try.
Gastrointestinal: Her first "feeding" did not go well. The therapist does not even feel comfortable giving her a swallow study. She has a weak suck. It takes her many tries to get a swallow down. The therapist believes that she may aspirate a bit when eating and she just plain..doesn't want to...according to the therapist-I haven't seen it. This means she developed some oral aversion, which is rotten and will be a LONG road. So now the therapist just works on sucking practice by putting drops of breast milk on the end of a pacifier. For this reason we are looking at having a G-tube surgically placed into the stomach which would replace the function of the NG tube which feeds her through her nose. They already looked at her structures in anticipation of this surgery. She has a small stomach and twisted intestines-neither of which are causing problems apparently. Surgery has just been waiting for me to get back for a consult. Currently she is getting 2 parts breastmilk to 1 part high calorie formula. She is also supplemented with liquid protein. This is all because she is struggling to gain weight -a common problem in VACTERL kids.
Genitourinary system: A VCUG was done today to see if urine "refluxes" back up in to the kidneys. I do not know results of this yet. ALSO it appears a fistula may have created itself in the intestines, because stool has been coming out of the common channel/vaginal opening now. She has a mucus plug that is supposed to prevent this to help prevent urinary tract infections..because the urethra is in the same channel. I don't think anything new will be done about this for a long time. She will just be on amoxacillin antibiotics for the next 1-2 years until it is repaired to prevent urinary tract infections.
Cardiac system: This is the system giving us fits right now. It appears heart surgery has been moved up to 4-6 months of age instead of 9-12 months of age, unless she has a legitimate "tet" spell, then surgery will be scheduled right away. The tet spell is an indicaton of blood shunting the wrong way in a heart and the baby will be fussy, the oxygen will drop, and the heart sounds will change...all within seconds so the nurse has to be fast with the stethoscope to check the heart when the oxygen starts dropping. Ava has been really sweaty which is a cardiac problem. She had another echocardiogram today which was checking the pressures in the heart and apparently they were better than last week. She has had 2 episodes in the last 12 days where her heart rate dropped low and she turned "white as a sheet" the nurses said. But, her oxygen did not drop, so no one labels these as "tet" spells. I've asked every NP this week the outlook in this system, because they keep saying "we're going to keep an eye on it" well duh! sorry-but that is a pathetic political answer. I ask "are we just going to sit here and watch her grow until cardiology decides to do surgery SOMETIME in the next 4 months?" So, no, she can't go home...but they have no idea what the plan is for her while she is there. I will be pressing for information this week.
She is about 8 pounds 5 ounces last I heard which is keeping her in the 3rd percentile or so.
I know this is about the crummy-est picture yet, but I was in a hurry 'cause the boys were starving. You can see how sweaty she is. The nurses tape her pacifier to a burp cloth so it stays near her better. She's not allowed to have stuffed animals, but she seems to like this burp cloth. She's looking at the pictures of her family members taped at her bedside in this photo.
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