It has been a very long day though, we are both wiped out! It all started at 4:00 this morning when Abby's blood pressure was 140/102 and she had a massive headache. They decided to to take her blood pressure every half hour instead of every 4 hours, so our time for sleeping was done. At one point her blood pressure was 152/105!! So, for now, we are blaming it on the steroids and treating it with an increase in her blood pressure medication. One thing we still haven't figured out is why her pulse was so low all day yesterday and last night. It was down in the low 70 all through the night, which is just weird for Abby. Today, it's been back in the 120's, back to her normal. Who knows??? Now I remember why they like to call Abby "The Conundrum!" After spending time with the residents this morning, they sent in the psychiatric team to help Abby cope with having to have another hospital stay. Honestly, I think she's handling things really well. But, being back in here can really wear on some kids and bring back some tough memories, so they want to offer this service while we are here. It was really hard to take a guy too seriously that was dressed like the funky monkey, but I do think it was good for Abby to talk to someone.
Abby's next visit was with the GI team. She's had an upset stomach and zero appetite for a few weeks now, and it sounded a little like her eosinophilic colitis could be flaring up again. The GI team is great, they spent lots of time with Abby trying to determine what's going on and what needs to be done. They also are still trying to figure out what's causing her back pain, that never really went away. They've got a few ideas, it's just hard to determine which one is the right one. They're starting with a cleanse, which she's been doing tonight. The poor thing, while every other kid is out chomping down candy, Abby has to drink fourteen 8-ounce boxes of Gatorade with a scoop of Miralax in each one. One Gatorade every 15 minutes and she's been doing it since 6:00, it's now 8:45, she's getting close to being done but she feels awful. Her stomach is all bloated and she's spending the majority of the time in the bathroom, she's not very happy. But, the amazing thing about Abby is that she hasn't even complained once, not once, all day long. She just does what she's supposed to do with a smile on her face. The nurses really do fight over who gets to take care of her each shift! The GI team also wants to look into some of her medications to see if this is maybe the cause of her stomach issues, and they also want to check for Celiac Disease and a dairy allergy. They want to start with the least invasive measures first, which is exactly what I want to do too! They'll be stopping by again tomorrow to talk to us about what our next step is.
After the GI team we got to talk to the transplant team and Dr. Everitt. So far, Abby's labs that have come back have come back negative. Some of her results are still pending. Her blood counts are still low, but are slowly beginning to rise. She's still not responding to the steroids like Dr. E would like her to, so she's staying with the megadose for 5 more days, then hopefully starting to taper. Abby isn't thrilled with this, in fact, it makes her really sad. She really doesn't want her big cheeks. The transplant doctors are looking into a few other things that could be going on as well. The 3 big things they check for with transplant kids are rejection, which we know she's in, infection, which her white blood counts show could be possible, and cancer because her immune system is so low. Last May, when she was also having problems, they had talked about a possible auto-immune disorder and they're going to be running some more tests for that tomorrow as well. Today, for the first time ever, I got discouraged with the transplant team. I just told Dr. E that I felt like I didn't know what was going on and that I felt like they weren't being completely straight with me. I don't like not having a plan, and that's how I've felt here the last couple of days. After we had a good chat and I let her know exactly how I felt, I decided that maybe she's discouraged as well. Abby is just such a unique case, she's extremely hard to diagnose and I think that's frustrating for the doctors too. I do know that there's something going on, whether it's just a virus that she's having a hard time kicking because of her immune-suppresants and the steroids she's on for her rejection, or something more serious, there's something. It might be that we stay here and she's monitored for a few days and then sent home without any answers, but that's okay because we've already found some things that needed to be treated. One good thing that came out of the discussion I had with Dr. E. is that Abby has to have another biopsy next week to make sure the rejection is gone, and we were able to schedule it next Friday, the same day that Brock will be playing football at Rice Eccles for the state semi-final football game (if they win on Friday anyway, which they will!) So, at least I won't have to make an extra trip back up here. Abby can have her biopsy and I can watch Brock play both on the same day. I also won't have to waste another sick day at school because they excuse all teachers that have kids playing in state playoff games so that they are able to watch their kids play. That was good news. I'm not thrilled about doing another biopsy, but I know that it needs to be done.
For now, Abby is feeling about the same. I don't think she any better, but not any worse either, than the day we go here. Which I guess was only yesterday, it just seems longer. Brittany and Brock are home alone and Brock has had the stomach flu all week and has been home from school throwing up. I wish I was there to take care of him, but then again, I don't "do" throw up very well, so maybe it's a good thing we're here. Hopefully, he'll be better by the big game on Friday. Britt texted me today and said that she threw up today too, so maybe it's a good thing that Abby is up here away from whatever it is they have. I feel like a crappy mom because I'm not there to help them, but what can you do? I also feel bad about missing school again and leaving my team to cover for me. I'm sure they're sick of it, I know I would be. I know I need to be here with Abby, but I also have responsibilities to Britt and Brock and at school and when I can't do everything, it makes me feel inadequate. It's hard for me not to be able to be everywhere that I need to be. There were a lot of fun things going on around here today for Halloween, but Abby just wasn't up for it, she just didn't feel good, so we just hung out, mostly visiting with doctors and nurses. It was really great this morning when Dr. Kaza came by to see Abby. We always like to talk to him, he is amazing and he will always be a hero in our eyes. He has a little soft spot for Abby and always has.
Despite all of the crap that Abby is going through, she's doing a good job keeping her spirits up and being positive and happy. I need to try to learn from her because I spent most of my day being discouraged and frustrated. I just want to know what's going on, to fix it, and to go home. Hopefully, tomorrow will be the day we get answers or we decide to forget it, and they just send us home to get over it on her own. Thanks for all of your thoughts, prayers, messages, good vibes, phone calls, etc. They sustain us.
|Abby during her cleanse, she couldn't get warm!!! It was all of that cold Gatorade I guess.|
|Abby when she found out about the 8 ounces of Gatorade with Miralax every 15 minutes for 3 hours!!!|
|The IV team, don't they look great??|