Thursday, March 25, 2010

We are back again... to our home away from home PCMC. It's not so bad anymore. They drained her tummy this morning just minutes after being admitted and getting to her room. The nurses were even rushed to get her vitals, height, weight, etc... the usually when being admitted, and get her to x-ray as fast as they could. It would so nice not having to starve her, then wait on typical delays of everyday hospital problems. This time they drained 240 ml from her poor tummy, which has now dropped to 46.5 cm from a 51 cm when measured in liver clinic this morning. I wasn't able to be a match for Harmonee, which has added more stress. But to help, Amy, Harm's transplant coordinator said they have received liver offers specifically for Harmonee. Unfortunately, these offers had to be declined because of problems with the liver. One liver was actually excepted but given to another baby because Harmonee was the "runner up". I know it sounds like bad news, but its easier to look at the brighter side then get overly jealous of the baby who received the liver instead Harmonee. Now I can say that Harmonee is on the top of the transplant list and the wait is going to be much shorter then the 7 months wait I was at first expecting. I am so happy that it is going to be sooner. Dr. Book said she is very sick now and needs one as soon as one becomes available it is Harmonee's. This news came at the right time! The stress was getting to be to much and all to often were the walls closing in with no way out, and tears start runny with out even a second thought of emotions going through my head. I have the optimism that this is going to end soon! No more waiting. No more painful nights. No more admits to drain a tummy that will be just as big in a week. No more waiting next to the phone with crushed hopes when its not the hospital calling. It will soon all be better! Although lets hope that it isn't for a few more days! Harmonee was also admitted because of a little fever she has been running. They did tests to see what it was today, we found out that it was a respiratory infection. If a liver did come in at the moment, she wouldn't be able to receive it due to her fever.
Harmonee now has an at home PT as well who has been working with her. She is getting better at balancing her tummy on top of her little legs and letting the rest of the strength in her back help her to sit up. She is learning to reach out for stuff in front of her and using her little fingers. Her PT, Anna, said that she was on schedule for her age, except because of not being able to do tummy time, we have to do a few different exercises to keep her on that schedule. Mentally she is caught up... plus some! Since it is really the only thing she has been allowed to work on because her physical attire doesn't allow much, mentally she has gotten very strong and getting stronger!

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