Don't really know where to start! Prior to Annabel's oxygen issues as of late, her most pressing issue besides Trisomy 18 had been her bladder/kidney issues. Our appt. today was wonderful. I don't always leave these appt. feeling this way with this one doctor. I truly believe he is a wonderful surgeon and did provide that for Annabel even though he didn't agree with it due to her Trisomy 18 diagnosis. We began the day with her renal ultrasound, then proceeded a little later for her VCUG. They have to cath her prior to this test to make sure there is no infections as they don't want to send infection into her kidneys. As you would know it showed white blood cells and they had to call the doctor to get approval to proceed. Since she always shows an abundance of white blood cells the doctor told them to proceed. We could see from the screen that there is no reflux. This is a huge Praise that we are so grateful for since this is what she was so sick with in her first few years. We then went to see Dr. R (urologist) and he was very quick to see us and he was more open than any prior visits. He talked an explained to us what is going on. Even though this didn't explain oxygen issues, and the fact that the cardiologist last week didn't communicate with me on much needed issue, it was so what I needed to have this doctor talk with me. He said she should not have this reflux again, that when the surgery is successful it usually last. Also that she should not need any more scheduled VCUG's. She will need renal ultrasound on a regular basis. They did show minimal growth of her kidney, minimal is better than no growth, right? Also, it show no Wilms tumors, YIPPEE! The fact that she has been on six antibiotic in the past 5 weeks or so was what he addressed next. He said the urine is going for a culture and depending on what bug is present she may need to be hospitalized for IV antibiotics. I am hoping this could be done here in our hospital if needed. I really think since the culture came back last week and she has had a Rocephin shot and still on Supprax that this will not be needed. So this was a very positive trip. Also, just a brief note on the potty issue, the doctors says we can let her potty but we much cath her right after and still do the antibiotic wash in the bladder. So we will probably resume this very soon.
Tara, my oldest daughter rode with me. Since she has graduated from college and taken on a job she has limited time to help care for Annabel. I believe Annabel is so confused by her lack of visiting. So today was her day off and she was so wonderful to ride with us and so it was such a good, happy day for Annabel. She only had one episode on the way into Houston and one upon leaving. Then tonight right before bed one other, but I think she was exhausted.
My plan is for her to attend school tomorrow pending a favorable night. When you talk about her teachers by name and name the children she becomes very vocal and starts clapping her hands. She is truly a social butterfly and thrive on all the attention. I am 150% the care she gets there is excellent and since I live 5 min. from the school they call at the first signs of anything happening.
I did call pediatrician again today for a referral to a pulmonary dr. but still no reply. I actually called morning and right before they closed. I also scheduled her an appt. with her ENT to have her tonsils checked. Doesn't hurt to rule anything out. Overall I think her oxygen needs are way better. There is still concern for the desats during the night and the excessive snoring.
Again, God has provided a great break from stress and worries. Not that they aren't there but he gave the grace that I so needed today. I know it is from all that are praying for our sweet one. Thank you doesn't say enough!
