Update 4/27/11 9:00am
It has been fairly uneventful the past couple of days. Nadia is the boss and is directing the speed of her recovery and health improvements. We are waiting, watching, and praying.
The rectal biopsy is still on hold until her platelets increase and white blood cells decrease to normal levels. Hirschsprungs is still a possibility but not so pressing that they want to risk bleeding or infection to get the answer. (Last platelets level was 20,000 while the normal range is 145,000 to 400,000)
Nadia is on a blood draw holiday today. This is the first day since April 5 that she has not had some drawn and tested.
We are pressing on with bottle feeding the expressed breast milk. We increase the amount a little every day and she is up to 30 ml/cc every three hours. Today she will go up to 35. This is still not enough milk to sustain her s she is still getting her nutrition through her TPN through her PICC line. It is enough fat that she has been taken off her lipids. We are definitely moving in the right direction!
Nadia had her first bowel movement in a very long time yesterday and followed it with five more throughout the day. This is great news and something we celebrated with many doctors and staff at Vanderbilt. It means that her stomach is handling the feeding and processing it which means that we can continue.
Yesterday, the nurses changed the dressing on her PICC line and encountered some problems. The new stat lock that holds it in place was faulty and Nadia was impatient with the amount of time she was being pinned down while they called for a replacement. The same woman who inserted the PICC was called up to consult if the placement of the line had been compromised by Nadia’s struggle. She reviewed the latest X-ray that was taken and realized that Nadia was a lot bigger at that time (she was still really swollen) and that at the time of the x-ray, her belly had been pushing up greatly on her chest. Now that her belly is normally sized and not pressing on her chest, her heart is lowered a bit and the PICC line was sitting on the very top of the where it should be. Through another sterile procedure, they worked the line a bit deeper into her heart to the ideal location.
Audiology was just in to conduct another hearing test. Unfortunately, she failed the test in both ears again. At this point a longer and more conclusive test will be scheduled. This test has the ability to bypass any fluid in the ear to make sure that the “hearing loss” is valid. It lasts about two hours and will test the level of loss Nadia has. It can determine that exact frequencies she can and cannot hear. We know that Nadia can hear some because she responds to noises, so this next test will set us up for whatever is next. She will probably have an ENT (ear, nose, and throat) doctor to visit on a regular basis. If she does have to be taken on by ENT, she will have hearing screens at every office visit. If they do not deem that she needs an ENT doctor, then she will have another diagnostic hearing test at six months to assess the damage brought on by the heavy antibiotics she has been given off and on since birth. Only time will tell and hearing loss is a bridge we will cross if we have to. Again, I request your prayers that Nadia failed this test due to fluid buildup in her ears and does not actually have hearing loss; I ask you to pray that if it is God’s will that she does suffer loss, that he give James and I the guidance we need to teach her and encourage her to her greatest potential.