Three in One

Yesterday morning started out bright and early for Jared and I. We left the house at 6:00 AM so that we could be at the hospital by 6:45. Jared was having his G-tube replaced and the old one had to be snagged so to endoscopy we went. Because he was going to be under general anesthesia, several other doctors wanted to do a few tests while he was out. The eye doctor did an ERG test, which looked normal, and the audiologist wanted to do a repeat ABR to verify the results from the test last week. Those results were the same in the left ear, but showed a little better in the right ear, but we are going to proceed with bilateral hearing aids. He also needed to be cathed for a urinary sample (since he refuses to give us a sample the regular way). All of this took several hours to complete but we did it!

I was so grateful that all of the doctors were willing to work together to get all of these things done at once! And I was amazed that we were able to actually coordinate everything in just a matter of a couple of days. We were able to get a lot of information yesterday that should be helpful for the geneticist next week. Jared was even cooperative enough after wards to get his CT scan of his ear done too! Amazing! It was a long but successful morning!

Since Jared was recovering so well we had time to stop upstairs in the ICS unit to say "hi" to a couple of the nurses that took care of Jared following his transplant. It was so nice to see Erika and Dave. Jared was so well taken care of there and it always nice to be able to see them again. We have been so blessed by the care that Jared has received by so many!

Things are looking really interesting as we get more information about our Jared. We are noticing that his left side in more symptomatic. His left ear has alot more hearing loss. When the eye test was done, the doctor said that everything tested in the normal range, however, the left eye was not as clear as the right (whatever that means). It was his left kidney that was completely missing and his left foot was more severely clubbed. Interesting! We'll see what the geneticist has to say about all of this!

Unfortunately we got more disappointing news this week. We have still been struggling with Jared's white count, specifically his ANC. 6 weeks ago his ANC was low again so we did another series of GCSF shots. Normally he has really responded well to these shots, however when we retested one week later his counts were actually worse then they were before the shots! So, we repeated the shots again but at twice the strength. His labs this weeks showed no change! Arghhhh! The nephrologists have no idea what is going on so we are seeing the hematologist again next week. Hopefully he will have some ideas for us. So, we are as usual, trying to keep Jared isolated as much as possible.

It has been quite the week! I am exhausted and Jared is tired of all things medical, but he is amazing and seems to just put up with it all. The timing of all of these new developments have been perfect though. I scheduled the appointment with genetics eight months ago and was frustrated that we had to wait so long to get in, but now, we have so much more information than we did even one month ago! Things have seemed to fall into place at the perfect time and hopefully with this new information we will be able to put all of these pieces together next week!