Longer longest day ever.

So today started at 8 am (leaving the house) and we got home at 6:23. Long day to say the least and a bit more traumatic than yesterday. I hate when she's under anesthesia. Well we went to the clinic and got her port access and blood drawn for her CBC. It takes about a half hour for that to come back. We got her numbers...all the same except the platelettes were up to 54 since we had a transfusion yesterday (just a reminder 140-340 is normal so we are still no where near good). There was a big debate whether or not to give her red blood cells since her numbers were still really low. The final decision being YES. So after the bone marrow we were to report back for another transfusion.

We finally went over to the OR for the bone marrow. The only good part was that the let me stay till she fell asleep so I didn't have to hand her over while she was ballistic. But the used the drug that we thought she was allergic too and that was so hard for me. We told them all our concerns and they said that it didn't sound like a normal allergic response to that med (all i could think was there hasn't been much "normal" about her medically so why should this be normal?). Anyway they really thought it would be fine but as a mom signing that paper was so hard. What if I was allowing them to give her medicication that would harm her? Well we then waited outside the OR for what seemed like forever. Maybe because there were no chairs or anything to distract it was worse. I don't know. At one point the anesthesilogist came out and gave a big thumbs up and said she'll be ready in about 15-20 min, everything was fine...just wait for the doc to come out and get us. WELL...about 30 min later still no news. So I went in and asked what was going on. They said "oh its fine" and she would be out soon. Another 20-25 min and I'm starting to freak out. Finally our doc (who did the bone marrow) came out and said that everything was fine but was not waking up quickly. She was still completely out. He talked for a bit then left and one of the clinic nurses stayed with us for a while. They she checked AGAIN and Livi still wasn't awake. She told us to wait 10 min (stop watches please) and ask again. At about 9 min 40 seconds they finally came out. I went in and got to hold her. She was so incredibly groggy and limp. It was not fun to see her like that. She was upset and wasn't able to hold up her head or open her eyes...but confused and wanted to hold up her own head and was mad that I was holding it for her. She tried to drink a bottle and it was just too hard. (By this time it is 1 and she hasnt' eaten since 6am). After a little longer we walk her over to the clinic to start the blood transfusion. She fusses and cries the whole way because she doesn't want me to hold her head up but she's still to out of it to hold it up herself. I hate all of this by the way.

We finally got to the clinic and someone was in the quiet (single) room and the decided that since she wasn't fully out of the anesthesia that she would have to be in the infusion room (not what I was wanting and pretty discouraging). Thankfully there were only 2 other kids scheduled to be in there. Meanwhile we're waiting for the blood and Livi is crying cause she's....she doesn't even know what she is at this point (tired, hungry, hurt, scared...all of the above). We try everything to make her stop crying...until someone askes if she wants ice cream and instant stop. So Dad does a mad dash up to the cafe on the second floor but they are out so he goes to the the cafeteria all the way on the other side of the building. Ice cream was never recieved so warmly in all the ages as it was today! The nurses, my parents, Cynthia and I were all overjoyed to see my Dad come down the hall with that bowl of ice cream. She finished that and we moved over to the infusion room. We had a small corner of the room as our own. The grandma's went to have lunch (by now its about 2:45) and Dad and I played entertainers. The air conditioning wasn't working right and it was sweltering in the room and Livi was sweating like crazy. She kept going to itch her port and then just as the grandma's returned to the room she pulled her access out. Instant frenzy...Livi is screaming, there is blood all over her chest and everyones trying figure out what to do. The nurse comes in and we wipe her chest off and realize that its from the IV not her bleeding. Then we have to get re-accessed which is not fun cause she isn't numbed at all so it hurts. But she did really well considering. We finally get everything rehooked and she is settle enough for Dad and I to go have lunch. The rest of the infusion was as uneventful as a 3 and 1/2 hour confinement with a 1 yr old can be. We finally left around 5:40.

The doctor decided today to take her off of the Hydroxyurea. Not what I was expecting and not even something I thought was an option. But he wants to see if she has toxicity from the medication or from the disease (meaning all her other blood cells being so low). So we are not going to take any medication until August 10th and see what happens. I just feel so out of control and so helpless. I want to do something productive to help and now we are stopping the only medicine that was supposed to work. I know I need to trust God and that he's not suprised by this but I am human and I am suprised by this and not at all prepared for this turn of events.

Pray that her numbers don't shoot back up! I'm not even sure what to say to pray for. Pray for healing. Just pray

Thanks to...
...Jeanne Zelenak for the sweet card and gift
...Mr and Mrs Ogoreuc for the pig and book. She's been carrying the pig all over the place.