Rough Start...Good Ending

I am not even sure where to begin just know this will be a LONG post.

Let's go back to Thursday of last week. We went to our pediatrician's office Thursday to get a CBC instead of the Tampa clinic. Well her CBC showed her HGB at 9.4 (was 8.6 Tues) and her platelets were 51 (this is after a week)! Also her ANC was 600 (anything under 500 classifies her as Severe Aplastic Anemia and 2 weeks ago it was at a 30). I tried my hardest not to get too excited since this was a different machine then we typically use and I was just happy this meant we could get out of Tampa for the weekend and go to Vero. I couldn't however not think that this meant Addison was producing some blood since no matter what machine she had a CBC on, it could not be that significant of a difference. Well Monday when we got to clinic before going to the hospital they ran a CBC and her HGB was 9.1 and her platelets were 31 (still really good for being 10 days since transfusion) and her ANC was 490. so this confirmed that machine at our pediatrician's office was not too far off. Our Dr said it was interesting that her red blood had jumped up and usually you only see a steady decline with AA until the next transfusion. I am optimistic!

We got to the hospital around noon and checked in, ate lunch, then went up stairs to our room to get the ball rolling on the platelet transfusion (plump her up for surgery.) We also asked the nurse if we needed to do a blood type cross exam to get a red blood band for Addy that she HAS to have to go in the OR. She told us they didn't need it. So we got the IV and then platelets took about 3 hours to transfuse.

The nurses change shift around 7:30-8:00 so while we were waiting Addison went on a date with Maverick (the little boy we met last time who is 2 weeks younger than Addy and simply adorable). They were each in their red wagons and Monique and I pulled them around the halls. We parked them by the big window to watch the planes land and take off. Well Addison decided she wanted out of her wagon so she could twirl for Maverick and make funny faces. Then she said "Poop Poop!" while smiling this huge cheesy smile and all of sudden she let one rip! SO loud and stinky! It was gross but hilarious! Then she snuck behind my chair and actually pooped. What a great impression for her first date. The date ended because she smelled so bad I had to change her! Guess I don't have a little lady on my hands after all! So funny....

When the night time nurse came on Addison's vitals were good so I told them we were not allowing the hospital rule of "vitals must be taken every 4 hours". Addison gets platelets every week and then goes home to sleep and I do not check her vitals every 4 hours. Ugh! So she did tell me Addison would need to be hooked up to fluids at midnight to be hydrated for surgery. OK, that was fair enough. We gave the OK. Well at 4am the nurse with the phlebotomist came in to draw blood. Guess what for?! The blood cross! Oh we were pissed (sorry not ladylike)! Charles let them have it too. Don't you think if we didn't want vitals done at 8, 12 and 4am we sure as heck don't want a darn needle stuck in Addison's arm? Only common sense one would think. Well Charles insisted they find a way to draw from the IV (which never works once fluids have been pumped through it) because we were not allowing them to stick her again. By the grace of God it worked and they got what they needed out of the IV. It was still a very rude awakening for all 3 of us and Addison refused to go back to sleep until about 6:45am and she slept until 8:30. I think I slept a total of maybe 3 hours the whole night.

So we all got up at 8:30 and got ready to go down to pre-op. The O.R. was suppose to be scheduled for 9am. We were in pre-op until 10:30 before the anesthesiologist came in to do his thing. For the last BM Biopsy the departure of Addison from my arms to the nurse was extremely traumatic (OK more for me than anyone else). She screamed "Mama" the whole way down the corridor with the nurse. I cry just thinking about it. So the Dr offered a little cocktail much like Valium to give to Addison before we transitioned to the nurses to calm her down. Well he gave her something. I was holding her while they administered and almost instantaneously she started acting a bit woozy. Then out of no where she looked at Clare and I, her eyes got huge and she had no idea who we were and she was scared to death. She began screaming bloody murder and her face changed colors. I honestly cannot even describe her reaction. She acted as if she was losing her life or she thought demons were coming after her. My mom and I started screaming and crying for help and my sister went out into the hallway yelling for help. I can promise you this was the scariest moment of my life. The Dr stood there while this happened not reacting at all, like he was shocked out of his pants that this happened. I had given Addison to Charles since she looked at me like I had 10 heads and he was able to calm her down and then she entered a state of euphoria. I of course was already a wreck and reliving the look in her face over and over and over. It will haunt me, it was terrible.

The nurses sent Charles and I to a consult room to wait on the surgeon that was inserting the port. It was a long 45 minutes to wait. Charles got bored and saw this thing down near the ground in the wall. He decided to touch it. Soon after two security guards rushed in...he hit the alarm! You would have thought a 5 year old was in the room....nope! Just Charles acting like he is 5 and me sitting there sobbing! What a great pair! Finally the surgeon came in and said the port placement went smoothly and we were just waiting on the biopsy and aspiration to be completed.

So it happened. It actually happened. Addison got a port. This is still so crazy to us all. After Addy recovered from the procedures we fed her lunch. It had been about 19 hours since she had eaten. She chugged a Gatorade and a juice box to show the nurse she was ready for solids! Then she ate a huge lunch! We don't call her chunkalicious for nothing! Our hematologist came in and said that the preliminary workup of the aspiration looked clean (no abnormal shapes or sizes) and no leukemia blasts. It also said there was moderate cells (last time it said very rare when looking for blood cells). So this is a good thing...maybe! dr. said lets wait for actual biopsy results which will tell us % of cell production. Last time it was around 15% cell production....we are praying for higher which could mean she is fixing herself. The Dr. was surprised by Addison holding platelets longer each week then previous weeks, her HGB has increased and they looked at her retic counts (retic are the new red blood cells..she has been at 0 or .5 consistently) and it was 2.3%. This is high which is good! And her platelets this morning were 298,000!!! Highest they have ever been after transfusion and she only 6 units! Might mean her body is trying to replenish them. Will know more when biopsy is back.

We are finally home now. It was a LONG 24 hours and we are all exhausted. Addison seems to be in good spirits and she ate a great dinner. She was sound asleep by 7:15 so I am hoping for a good night sleep as well.