Monday, August 22, 2011

A good day...much accomplished...

Today was a good day. We had to go to the hospital to have her line repaired. They were able to do a very quick repair because their was no damage any where else and there was no clot. It was very quick. She was suppose to have her DSMA scan tomorrow back in Houston. They were so willing to work us in today. Everything was right on time and we left Houston by 1:30. I am very thankful for safe travel and that all went so well.

Sunday, August 21, 2011

Meet the teacher day...

Even though we already know our Teacher Ms. Ann and the aides Ms. Lisa and Ms. Alice. I love our school and our bright classroom so much and so does Ms. Annabel. It will be so good to get back to a routine and Annabel thrives off of all the stimulation that take place during her school day. Tomorrow is the first day of school. Friday (when the picture was taken) was meet the teacher day. As soon as we walked into the room you could tell Annabel knew right where she was and who was there to greet her with their happy faces and voices.

I was wondering if any readers have central lines. Annabel has a double lumen central line and the small line with we give her TPN just ruptured tonight. This week we noticed a bubble in the small line. We had an appointment on Tuesday morning to see if they could just repair it without changing the entire central line. Obviously this was a weak area in the line as tonight when I was hooking up and knew to only gently flush, there was saline coming out onto her belly. Of course, it is always the weekend or nighttime for us. A two hour drive and probably waiting in ER all night. I called Texas Children and the GI doctor returned my call right away. We temporarily agreed to just clamp the small lumen and give her TPN in the large lumen. He just called and said Vascular Access Team still had not returned his call. So the plan is to call in the morning and see what they want us to do. We already have to be there Tuesday for a DMSA scan and I sure don't want to drive over two days in a row. Of course, if need be I will! So if any of you have experience with your line breaking and know of anything else we should do please let me know.

Also, there is a sweet little boy, I have never had the privilege of meeting, who passed away yesterday. Her was 6 years old with Trisomy 18. My heart breaks for his family and can't imagine the pain. He began loosing blood and they weren't sure why, then I heard something about appendix thing he had passed. Another little might mouse named Caleb, 29 months old is very sick. He went in to have his adenoids removed so he could breathe better when he slept. He came out of surgery ok, but then had a heart attack within 3 hours. They desperately need prayers. His left side of his heart isn't working. It is early to know what may happen but praying for little signs of improvement.