Long Day

Dani is so strong and such a trooper. The day started at 4:30 this morning. I got up to give her apple juice because she could have clear liquids up till 5:00am. We all got ready and Grandma Boni came over to stay with the Boys until she could drop them off at 7:00 at YCare. We were suppose to be at the hospital at 7:00 but ran a few minutes late. When we were registering they called down looking for Dani ...oops.

We got into the Patient Treatment Center. We are there to have Dani put under and get an MRI and Bone Marrow Aspiriation and Biopsy. They tell us how concerned they are because they are dealing with a Hurler's baby and they are fully aware of the narrow airways and complications that can arise. This is both a positive and a negative. We are VERY happy that they are aware of her being a special case but of course hate to hear the list of things that could go wrong. And of course they have to point out that it is Friday the 13th.

Both Grandmas and Aunt Jackie make it in time to give her a kiss. I get to go with her and hold her until they put her to sleep. This is the first time I had the chance to do that and it was hard to watch her get groggy and sleepy. Jason and I leave to wait in the waiting room until they call. She was gone for a hour and a half before they come to tell us all went ok. They actually did not have to incubate her and just let her sleep peacifully and breathing on her own. We go back to see her and it was of course wierd to see her sleeping on her back hooked up to machines with the oxygen around her nose but she looked good.

She woke up about a half hour later and did it smiling ... groggy but smiling. Did I mention she is awesome? We then stay down there a half hour or so to see if she will keep liquids down and wake up a bit more before heading up to HEMOC. There we are greeted by Cheryl (Dani's nurse) .. she was impatient for some smiles from Dani. The ball gets rolling quickly on her ERT and just as we settle down and try to get her back asleep Dr. Hyashi comes over with Amy (Dani's coordinator). We all listen to Dr. Hyashi going step by step through the transplant process. Right in the middle of it he asked Amy if she told us the recent update on the donor.

Come to find out they got a call late yesterday ... (ummm my last day of work, should I mention?) that the donor's physical picked up something wierd on his/her heart and they have ordered an EKG/ECHO to make sure everything is all right. OKAY .... My heart hit the ground. Everything I was going to ask went right out of my head. Talk about a low blow. I knew everything relied on the donor but we had gotten an all clear on Tuesday so I thought everything was taken care of. So we go through the rest of the material and they tell us all the different medications she will be given and complications that could arise. We sign consent forms and everyone ask some questions. They big thing right now is making sure Dani DOES NOT get a virus. Since we are gettin into the big virus season we have to be extra careful. They will test her twice to make sure she does not have one but if we start the process and she has one it will be critical. They have no way to fight a virus.

Ok ... so after the doctor leaves and we are by ourselves I need to get away and think for a bit so Mom, Jackie, and I go for some food. When I get back Jason and his mom got down for a bite and Dani (who the nurse said would be very very tired after the procedure this morning) still has not slept. So I walk her a little bit and she starts to drop off and I just lay her down and a gentleman comes to give her an ECHO/EKG ... lovely. lol. So we go off to a private room and try to get in a comfortable position to get this done as quickly as possible. For those of you that do not know Dani personally, she hates laying on her back. She always has. We believe it has to do with her eyes but are not sure about that. She actually did really well until they wanted to stick the wand in her neck ... ummm no. So the gentleman called back up and an hour maybe an hour and a half later we were done and so was her ERT. We left the hospital around 3:00 pm.

The bright part of the day was on the way home when Amy called and said she got word that the donor passed the ECHO/EKG and the dates were still on... Thank God

My To Do List does not seem to get smaller but we are doing pretty well. All three of us took naps when we got home and are now getting ready to watch the Cardinals beat those Mets ... hehehe.

The goal in this whole process is to obviously get Dani well but in easier definitions is to get to day +100 (Transplant Day being Day 0) and see that the donor cells are taking over at that time. Dani has an eye doctor appointment Monday and we are meeting with a Pediatric Pyschologist after that. I will let you know how it goes.