I hope everyone had a wonderful Labor Day weekend. It was beautiful in Pittsburgh and we were busy, busy, busy!!! Ashley had fun showing her cousins around the city and generally just enjoyed having someone to play with. Today we got a visit from Ashley''s Sunday School teacher from home who has started college at Duquesne a couple of weeks ago. Also my Aunt Shelley and Uncle George stopped in on their way back from Warren, PA (near Erie). So it was nice to see some familiar faces.
Ashley and I also had a chance to visit with two other families. The one family is currently leaving in Pittsburgh while their daughter waits for a bowel transplant. They are here from New Zealand and have four children ages 16 to 3. (Just when you think we had it bad). Matisse is six years old and they have been living here since January when Matisse was evaluated for her transplant. Matisse and Ashley managed to sneak in a couple of games of Go Fish and catch up on the latest High School Musical gossip.
This evening Ashley and I headed out to meet one of her new classmates. I had met his parents last week at Ashley''s school''s open house and they called to invite us over for a cookout. Ashley had a wonderful time playing with their son Jack and she will feel better having a familiar face at school. It was so nice to sit back and relax a little and comforting to know that we have made yet another friend in Pittsburgh.
On to Ally who has also had a busy weekend. Ally is still having some sedation issues. Which means she is spending a lot of time being agitated. She has longer periods of being awake but is generally withdrawn and unhappy, which of course is difficult for us to watch. On the positive side she seems to be more restful when she is sleeping. Her vent settings have been up and down with very little progress since last Monday. I have noticed that the breaths she is taking on her own seem stronger than what they were last week. However, when she is asleep she hardly takes any breaths on her own and lets the ventilator do most of the work. It is difficult to find a balance where she is sedated enough that she is comfortable but not sedated too much that she can not take breaths on her own. One of the many things I have learned since Ally was born is that an ICU stay is all about finding the right balance.
The newest thing we are having trouble balancing is Ally''s Prograf levels (rejection med). Since Ally is being treated for rejection the docs like to keep her Prograf levels high. Needless to say Saturday morning they were through the roof. Her Sat p.m. dose was held and yesterday morning she had a nice level. Her meds were restarted but this mornings level was the lowest it has been since she was transplanted. A low level makes it even more difficult to fight the rejection, so we are still trying to find her right dosing schedule.
Ally had a scope done this morning and rapid biopsies were taken. Tonight I spoke with Dr. Sindhi and he said out of the three biopsies two looked unchanged since last week and the third looked slightly improved. He thought we should continue on the OKT3 rejection med and definitley work on getting her Prograf levels back up. He wants Ally scoped again on Wednesday.
Ally has still been having bleeding from her bowel. The docs were not overly alarmed by this and actually were surprised that it had not begun sooner with this latest round of rejection. She did have some more significant bleeding last night so she required yet another blood transfusion ( a reminder to everyone to donate blood if you can!)
Well that about sums up the weekend, I guess this is why I shouldn''t take a break from updating because then the updates get too long! This week will be busy too (aren''t they all). My Mom and my girlfriend Katie are coming to visit tomorrow so that will be nice. Ashley has a visitation day at school tomorrow for just an hour and then has her first day on Thursday. If you ask Ashley about her school all she ever says is that the only days she has off are Saturday and Sunday (which is exactly why I picked that school!). Anyhow I can''t tell if she is excited by this or dissappointed so I guess I''ll find out soon enough.
Before I forget I want to thank Lynne and all of her colleagues at Burns, White, & Hickton for participating in a dress down day in honor of Ally. The money raised will go to Ally''s recovery fund and of course will be a huge help to us while we are living in Pittsburgh. If I had the time I could spend the rest of my life writing thank you notes to all the people that have helped us over the past three and a half years and I still would not be able to complete the task. Thank you to everyone who has supported us in any way, we are forever grateful.