That is my prayer for sweet Annabel. She had 3 good weeks after the surgery and for this I am so thankful. She did amazing during the surgery and after the surgery during her recovery she did as well as she could. We were home in the expected amount of time. She had some great nights with good oxygen levels. She has had long periods of time without miralax, without being cath'd, and with less spells of apnea. I do believe the bowel helped to give her more space and less pressure everywhere. The bladder surgery worked but only briefly. She is now on two antibiotics and still not doing good. We are having to cath her sometimes, I am just not willing/or believe this is in her best interest any longer. She has experienced the psuedomonas and e-coli thus far. I am so thankful for our Dr. B(pediatrician) here locally. I feel we no longer have a urologist. He continues to question me when I go there about how do I really know she has a urinary infection. I stayed with her first urologist over 3 1/2 yrs. because I wanted consistency with her care. So I was told that this last urologist who did her dilation was wonderful and a people person. He is truly not a people person and he has the most combative personality I have ever seen. I have been questioning his care and concern for Annabel. The bulk of the urologist are there at Texas Children's and it is so hard to just switch again. Then I look like I am just unstable. It is not fun to not have a specialist when this is what is her big issue right now.
With that said Annabel is just not coming back. She has some flickers of energy and her sweet self shining through. But overall Annabel tires very easy and is just basically weak. It is hard to know if it is the infections, the combination of antibiotics making her tummy unwell, too much therapy (fatiguing her muscles), her spells with the apnea rising back to the levels prior to the surgery. She doesn't care to stand and sitting is not going well either. If she does sit unaided she hangs her head back and eyes roll back in her head. Overall so weak.
We had an appointment with our pediatrician on Wednesday, for supposedly a well check. Some how since we switched she has never had a well check up. I was sharing some of this concern about Annabel and her overall well being. She asked how long she was under anesthetic. I told her 3 1/2 hours. She said that for each hour she basically needs 1 month of recovery. So for Annabel she should have 3 months to recovery and get back to where she possibly was prior to the surgery. Let's just say I waited 3 weeks and dove right into therapy. Yes, then when she was in the hospital I brought her stander because she didn't appear sick enough to be in the hospital just laying around. With all this being said, we are going to back off of PT and expecting her to stand for long periods of time. This is so hard for me because I want to see improvement and feel that we are working towards a goal. Sometimes I wonder if I have really ever accepted the fact that Annabel may not walk. I have to really question am I doing this for me or what is best for her. I know I will love her and cherish her if she never sits, walks talks, etc. But I keep saying I want what is best for her. I am going to try for now to just give her rest, pump her up with some much needed calories, do some stretching and not have her on such a rigorous schedule of running appointment to appointment. At the end of her appointment Annabel needed three immunizations. She had had all of these before so no worries right??? NOT! They gave the shots, she was such a big girl and accept for a brief gasp of air each time she was stuck, not one tear was shed. This baby endures so much! Hello, I think I need to learn from her. We left, the drive home was about 6 minutes. I went around to get her out of the car and she was purple around the mouth and gasping for air. When she seemed to get the air she wretched like she was trying to vomit. I began requesting loudly for help from inside the house to get her in. We hooked her up to pulse ox and her oxygen was low and her heart rate was 190-200. She began to turn red. She was clawing at her neck and both arms were jerking and shaking. It was frightening for all of us. She was struggling in ways that I had not seen. So yes, I PANIC, and call 911! They were here in about 3 min. giving her oxygen and assessing her. I am embarrassed to say that I DIDN'T even think of Benadryl. So after about 20 minutes I looks at the EMS worker and said should I have tried Benadryl. She said well you can if you want to. Why I didn't even realize right away this was probably a shot reaction and think of Benadryl, I don't know. Maybe because she has never even had the slightest reaction to any shots. They waited with me while I gave her the Benadryl. Things began to improve and I just explained that I felt we didn't need to go to the hospital. They couldn't advise me but I felt they agree that it was probably a reaction to the shots and that she was more stable now. Oh by the way, I did try to call the pediatrician first and they had closed and didn't refer me to an answering service (probably if they did, I was so crazy, I didn't hear it).
Anyway, I don't want to sound ungrateful. We were able to have a good vacation and enjoy good family times. Thank you to all who read and check in on Annabel. It is truly your prayers that keep us going. Your friendships are a great source of strength and so treasured.