Behind bars again...

I have been struggling to make this post for well over a week now. When I made the post about a week ago after the sleep study and some of the early findings I was confused. When you read this you see I am still confused over a week later. I have put off making a post directly related to any of these finding but I am going to attempt to write some of what has been discovered. I am not medical and I do struggle to put everything together with much understanding. So if I make a mistake you can feel free to correct me or just hope that eventually it will all be explained in its entirety.
Our appt. with urology went great! Her urologist is very willing and thinks we have exhausted all other methods of helping Annabel with her neurogenic bladder.
Early we did the prophylactic doses of the antibiotic beginning prior to 1 year. We did that until she continued to have multiple breakthrough UTI infections while on the meds. She was in Grade V reflux (bladder back into the kidney) on both sides so her doctor agreed to perform the surgery. This was a success and at this point is not back in reflux. Her bladder now is neurogenic(lazy) and works almost not at all. Then we moved to the cathing and have been doing this for 1 1/2 yrs. About 1 year ago we introduced an antibiotic solution into her bladder with another cathing procedure after her morning cathing and evening cathing. Annabel showed that she could be potty trained and did very well with this. It was found that Annabel couldn't empty her bladder and was still holding the urine so we still had to cath after each potty episode to remove the leftover urine. But I do believe that it is good for other Trisomy parents to know that it maybe possible that our babies can be successfully potty trained if they don't have other UTI issues. She is back to having the infections close together and some before the dose of antibiotic is done. Annabel runs a high risk of becoming resistant to being on so many antibiotics. This has been a problem about a year ago and our new pedi is very conscious of this. The procedure that we discussed with the urologist yesterday (he had mentioned about 3 years ago) is what I have prayed about and have felt lately that this is what Annabel may need. The urologist thought we were at this point also yesterday. I will talk with her new pediatrician at home and make sure she is in agreement with this.
She will have to be sedated and with the new heart and lung issues she will have to be totally cleared before we can move forward.

As far as the sleep study went, she was found to have severe sleep apnea. She as about 2/3 more obstructive vs. central. Her numbers are very high, anywhere from 45-98 epidsodes an hour. This includes both central and obstructive. It is found she desates into the 60's during much of the night. Last week when she was placed on the CPAP she did so well that after only one night we were allowed to go home. She did perfect for 7 nights with no alarms. Friday morning she woke alarming with high heart rates. This was unusual for Annabel and it continues off and on most of the day Friday. We saw the pedi on call at home and she didn't have any other symptoms. We were told to go home and monitor. The next two nights she continued to desate on the CPAP and at times during the day her heart rate seemed much higher than normal. On Easter Sunday she alarmed most of the day and night, so much that I had to keep turning it low. She was placed on oxygen during the afternoon on Sunday and this helped. We were told to called pulmonary on Monday morning and so we did. He gave us the option of going home one more night or being admitted into Texas Children's that day. We still needed to see the urology and then my twin daughters where playing their regional tennis tournament today in Plano. So we opted at that point to see the urologist then head to Plano and monitor Annabel one more night. We could always come back through Houston after the tournament and drop us off to be admitted. I really struggled with this and what was best for Annabel, while heaping on the guilt that I could not be everywhere to everyone at the same time. Tara strongly encouraged me that she would take the twins to Plano and I should stay here. That way everyone would be taken care of and it was what was best. I dreaded going through the ER to be admitted because of the time it would take and exposure to all the germs for Annabel. As I was still struggling upon being admitted, I was brought back immediately and things moved so quickly. Annabel began having much diarrhea, coughing episodes and running a temperature. God quickly took care of my guilt and I had peace that I knew we should be here. Well we knew she must have a tummy bug then and the xray came back with pneumonia in her left lung. Maybe the explanation for the desats while on CPAP.

All was ok until around 3:45a.m. when she began to have many desats while on the CPAP. They had to call respiratory 3 times for more oxygen to be added with the CPAP. After about 5:15 things settled down and she is still sleeping.

Now concerning her heart. As I have mentioned before we were told at birth she had a VSD and bicuspal aortic valve. They were insignificant, the hole was almost gone and that she could live a long time if not for the trisomy with these heart issues. This was by our pedi cardiologist at home whose care she has been under since birth.
After the Echo here in Houston last Friday, other things are being discussed, with the drs. not directly with me. I have been told some of these following things but not with great understanding. That she has several valve issues(4), a LARGE VSD (told this was almost closed recently), an enlarged heart(significantly), a dilated aorta, mentioned a leaky heart and a few others that I will try to get together after meeting with cardiology. It was also said that if she is not found to be a surgical candidate or if surgery is delayed??? Ok, this is where I am totally confused. For four years, I was under the impression that our heart issues were almost taken care of and insignificant. With our pedi cardiologist at home, I also had a very caring friend go to these early appt. with me and who heard the same thing. My mind cannot help but go back to the fact that did the pedi cardiologist just decide this is all I needed to know. Each time Annabel was admitted at home, we were told first thing her heart was enlarged, cardiologist would come in right away and tell me, I told you her heart is ok, she has lived much longer than expected. The Ms. negative Cathy is struggling with the thought that why is he deciding if her life has been lived long enough. The Ms. positive Cathy is telling myself that I am sure his machines are just outdated and that Houston's are just more progressive.

This post is not a total summary that probably makes much sense. I know now she is sleeping peacefully with good oxygen levels, no fever and a beating heart. She has had four good, happy years and I know that God is taking great care of her.
Please don't judge my medical expertise on this writing. I am one that tends not to question until I really have to make room in my mind and deal with it. So probably the next few post will be just ramblings and phrases that I am being told but not necessarily the final diagnosis or outcome. I do know that we(Annabel) is totally in Gods hands, and that Annabel has a very aggressive caring pediatrician back home who follows closely, and that here in Houston she is getting state of the art care. For this I am totally grateful.