The year has been off to a busy start (what else kind of life is there?), but a good one. Yesterday was Bean's first biopsy of 2011 and although the day was a long and totally frustrating one, the results were well worth it - a ZERO!!! Its only her second zero since she got her transplant and we're very, very happy to have it. But, it came after a long, long day.
Originally, we were scheduled for the first case in the Cath Lab (the picture on this page looks almost exactly like the one at Stanford). But, five days ago they called to say that a baby had been born who was going to need to go in first thing in the morning - at only five days old. So, we got pushed back from 8 a.m. to 11 a.m., which meant we could sleep in a little longer (originally, we would have to be there at 6:30 a.m., but now we had until 9:30 a.m.). We arrived at 9:20 a.m., with Bean having not had a bottle or any food since around 10 p.m. the night before. She doesn't really like juice or water much, so she had a very small amount of water that morning, but we were told to not give her anything after 8 a.m. She was in pretty decent spirits until we got back to the pre-op examination room. She has become more and more agitated each time and now she starts to get upset as soon as we get in the room. She doesn't like being hooked up to the monitors (they will usually put her on a pulse-ox, take her blood pressure, listen to her heart and lungs and take her temp) so she just cries and fusses the whole time. This nurse only made her do the pulse-ox because she was so agitated. She tried to listen to her heart and lungs, but she was pretty much screaming the whole time. We then went to the pre-op waiting room where there is a TV and some toys. She was once again in pretty good spirits...then Nancy from the transplant team came and wanted to listen to her heart, etc. and she once again lost it. But, Nancy has a Mickey Mouse watch that plays "Its a Small World After All" that Bean loves, so that distracted her enough to allow Nancy to listen. She said she sounded good. We once again returned to the waiting room. We sat there for about 30 minutes before someone finally came and got us and took us to the pre-op prep room.
The pre-op prep room has a bunch of gurneys and any pre-op meds are given here and the anesthesia team comes and gets the patients from here to take them to their operating rooms. So, we settled in here, trying to keep Bean's mind off of her "bah" (bottle) that she kept asking for all morning. We watched some TV, we played with her puzzles, we looked at a book...but, she was obviously not the happiest person. We waited a long while...the nurse finally came over and said that she had a call in to Mary (the cath lab manager/nurse) to see what was happening. It was around noon when the nurse came with Bean's Versed (a drug that helps the patient to relax and supposedly allows them to forget what happens in the procedure). She got loopy, she got very unbalanced, she hit her head on the crib gurney bars a couple of times, did some funny stuff...but, we continued to wait and wait (usually verced is given about 10-15 minutes before they come to get her). The versed started to wear off about 45 minutes later and she started to get super agitated. It was really stressful. We found out about 40 minutes into the versed that the first case (the five day old baby) had taken longer than they thought and now they had an emergency case from the Third Floor PICU that needed to be done.
This is, of course, frustrating. After all, you can't very well explain to a 23 month old why they are not being fed, why they are starting to feel overly tired and agitated and why they are going to have to continue to feel that way while being stuck in a crib gurney. But, who do you get angry with? The five day old who needed to have a heart cath? The kid from the PICU who needed some emergency procedure (which, by the way, Bean was three times while in the hospital)? The cath team, who obviously have a lot to deal with...much of it life and death situations? There is no one to be angry with, no one to be mad at. Only non-directed frustration with no chance of yelling at someone making you feel any better. Bean finally fell asleep about an hour and 10 minutes after the Versed. They came and got her about 2:15 or so and since she was sleeping, they didn't give her another dose of versed. She woke up while being wheeled to the cath lab (which is a long trip down a hallway between the Children's Hospital and the main hospital), so I carried her the rest of the way. We then gowned up and I took her in, put her on the table and held her while they put all the wires on her and put the mask on her - which she hates. But, she falls asleep pretty fast after they start the anesthesia...thank goodness! On an interesting side note, they had "flavored" anesthesia, so the stuff coming through the mask smelled and I guess tasted like Caramel. When she started to relax and stop crying, Bean tried to lick the mask! :)
We had not eaten at all that morning, thinking we would be able to grab something around 11 a.m. so both J and I were starving! We went across the street to the California Cafe to eat. We thought it would be 30-45 minutes before we would hear anything. The phone rang about 25 minutes later and I must admit that my heart jumped a bit...why would they be calling so soon? But, the woman who manages the surgery waiting room for the Children's Hospital, Pam, is wonderful and immediately said, "Everything is fine - she's fine, but the doctor wanted me to let you know she was done and all went well. Take your time as she will be asleep for a little while." So, we quickly finished our meals and headed back over and once again, we hurried up and waited. We sat in the waiting room for about 15-20 minutes and then were called back to the recovery room. Bean was still asleep (thankfully), but had woken up and already tried to rip out her IV (the reason I was thankful she was asleep - she REALLY hates to have IVs in). Our nurse was awesome and Bean slept right up until just before the Echo person came. We made her a bottle and she sucked it down while getting the echo done. It was about the calmest echo for her I've seen since she got out of the hospital. She usually wants to grab the person's hands and push the echo wand around and roll away from their exam. But, she was so hungry she just laid there and ate!
Once the echo was done and read, the nurse cleared us for release and took the IV out and disconnected all the tubes. We got Bean dressed and headed out, approximately 8 hours after we arrived. Sigh...but, we were able to get home to Chico by 11 p.m. and Bean slept great last night and has been great today. Her neck (where they went in for the biopsy) looks great - just a little scratch mark where they went in and a slight bruise around it. She went to playgroup today and had a great time! And this afternoon we got the call that her biopsy was a zero. It made our day! Not that there is a big difference between a zero and a 1A, but it was beginning to feel like we were on a road of rejection and we weren't going to be able to get off. So, now I feel like we've at least found an exit and are headed in the right direction.
We have to go in for a clinic visit in six weeks, we have an endocrinologist visit around that same time to get her checked because of some breast tissue growth and her fontanel is still pretty open considering her age. We'll have another biopsy in three months and if that is another zero we get to go four months without a biopsy! Which will be just in time for her annual biopsy. Crazy to think that two years since transplant is that close! It has been a whirlwind of a year and a half. I still feel like I'm just figuring out what I'm doing! And I only sometimes feel like I'm figuring it out!
So, things are a bit less tense now. We have hopefully figured out the right med levels and Bean's body is being more accepting of her heart. I still will not feel completely comfortable until we get another zero, since she has had one a while back, but immediately went back to the 1A status with the next biopsy. And although I know that the zero to 1A distinction is pretty small, it just feels better to have a zero!
Bean and J are taking a road trip together to visit his parents tomorrow. I will be at home, prepping for the new semester, trying to get the house cleaned up and organized for the new semester and doing a little bit of R&R before things really kick in with classes, tournament travel (almost every weekend for the months of February and March), and the Bean. It will be nice to have a few days of time to clean without risk of it being made a mess seconds later, to work without dealing with "bah" requests, dirty diapers and just general necessary Bean entertainment, and being able to leave the house with just a purse! But, I will miss her a ton (and J a little too). I feel like I miss something precious every day I'm not around her. She really is a bright spot in my life and I'm so very thankful to have her and to have her healthy!
I know not everyone's 2011 is looking as good at this point. My thoughts and prayers go out to those families who have children in the hospital currently. Please do the same if you are lucky enough to have kids at home who are healthy! Thanks for reading!