Wednesday, March 28, 2012
She has still been pretty grumpy today and the weather is not helping. Its very windy and cold (better than the pouring rain we had yesterday when we got home) and she really loves to be outside. We played for a while outside while I gave Bella (our dog) a much needed bath after her trip through the mud puddles out in the backyard earlier today, but it got too cold and windy after a while. She napped for an hour or so this morning and has been napping this afternoon for a couple of hours. I think the hospital wears her out (just like the rest of us...hospitals are not good places for restful sleep!) and makes her grumpy. But overall, she seems to be doing okay today. No fevers. Her eczema is looking better. And she even seems to be snoring a little less today than she has been the last couple of days. Now, I hope that the elongated nap today does not lead to a late night tonight, but we shall see.
Thanks to everyone out there for their kind words and thoughts and support! I am excited to get some health things out of the way this month (the biopsy was a biggy, the tonsillectomy even bigger!) and I'm so thankful that we were able to escape from the hospital yesterday. I know there are many families out there who do this repeatedly and have much longer stays, so we really are extremely thankful.
Tuesday, March 27, 2012
Well, our luck with biopsies lately has not been good. Last biopsy (November of last year) Bean was running a 103 degree fever by the time we arrived at my parent's house about an hour and a half away from Lucille Packard. She ended up having pneumonia and we spent four days in the hospital, including Thanksgiving.
This time, we didn't even make it out of the hospital. Bean was scheduled for biopsy at 11:30 a.m., meaning we arrive at 10 a.m. for pre-op. Typically, I try to make sure she is the first case of the day, as every additional case means the possibility of running behind schedule. But, because we found out she was going to have to have a tonsillectomy/adenoidectomy mid-April, I wanted to get the biopsy out of the way ASAP and they had an opening on March 26 for mid-day, so I took it. But, as I expected, they were running behind, so they didn't actually get her into the biopsy until about 1 p.m. We got report on her about 2:30 p.m. that she was doing fine and would be in recovery getting her echo and we would be called back to see her. It seemed to be an unusually long period of time before they called us back, but when we arrived, she was just finishing the echo and was NOT in a good mood. Because her recent sleep study showed extremely bad apnea ("worst case I've seen" says the ENT...when Bean does something wrong health-wise, she really does it well...), the anesthesia is becoming a bigger concern, so they had to give her some additional breathing support and that required another form of anesthesia that makes them a little more cranky upon waking. She finally wore herself out and calmed down to have some Popsicle and apple juice.
When Nancy (transplant team NP) came to tell us about the echo, she started out with "Well, the good news is..." and I immediately knew something was wrong. Usually they just say "everything looks good." So, she told us all the function looked good, no effusion, but during the biopsy there was some damage done to a "hinge" that controls the tricuspid valve (which they go through with the cath) and now the "hinge" is not closing that valve 100% properly. So, there is now some "leakage" in her valve. At present, it did not show any functional changes in the flow, so it seems to not be anything serious, but it is obviously not something they want to happen. And although the echo looked good, Bean's heart rate was seriously elevated and staying put at about 40 beats per minute above her norm (technical term = tachycardic). So, the concerned looks came out, an EKG was ordered and Nancy told us she would show the head of the transplant team the EKG and talk to him about the situation. At that point, I think both Jason and I were pretty much figuring out we would be staying. The EKG had "significantly changed" from prior EKGs of hers, which is a concern I guess (in all honesty, for a mom of a heart transplant recipient, I really don't know a whole lot about the heart and all its parts and functions - but, I think I'm being convinced that I should learn it). So, she was admitted for an overnight observation. Sigh...
Her heart rate slowed down just about the time she got to the floor (hospital room), but it was still a little bit high. And on doing vitals when she was admitted, her temperature was a little high. So, I was afraid something else was going on other than the high heart rate, but Tylenol did the trick on her temp and she was okay overnight. They reran an EKG when we got to the floor and did another one this morning and all three show the same difference. She now has some kind of wave change (again, this is something that I am not that familiar with, but will have to ask more questions about at the next clinic appointment) and that could mean an injury (the one to the valve maybe?) or "bruising" - but, I don't know for sure. They did not seem that concerned about it, but we do have a follow-up in two weeks with the clinic, so it could be something that will require monitoring for a while. I'm not totally sure. I do know her heart rate went down, her temp has been fine, and they released her today about Noon. We are back home and although she has been in a really bad mood tonight (mostly due to her hand that they put the IV in being bruised and it seems to really be hurting her...oh, and she has developed a wicked case of eczema...yes, another health problem...on the palms of her hands, of all places, and they are itching like crazy), but other than that, she seems to be doing fine.
So, things with this biopsy did not go so well. But, hopefully over the course of the next few weeks, she will be able to breathe better at night (oh, her apnea score was 43, which I guess is something like 20 incidents higher than the highest that most of the people working with her, including the ENT, has seen) with the tonsillectomy/adenoidectomy (she was just coughing due to that problem as I typed this). We can figure out what exactly is going on with this valve/EKG/heart rate issue we had yesterday (I need to write down a list of questions to take to clinic with me this next time). And we can get her prograf levels right. I have to take her in for a blood test tomorrow (great way to wake up the morning after being released from the hospital, eh?) because the biopsy ran so late that the trough level was probably not accurate, but it was pretty low for her. So, hopefully tomorrow will show it where it should be.
All this, and we didn't even get a zero on the biopsy result! :( I had really thought we were going to have a few in row, but we are quickly back to the 1A. Oh well, they keep telling us its really the same as a zero (than why not call it a zero?), so I guess we should be happy.
Other than that, these past two months have been the weeks of ear infection (a side effect of enlarged tonsils and adenoids), 10 days of antibiotics, a few days off and then another ear infection. And she finished her last bout of antibiotics about six days ago, and I'm pretty sure she has another ear infection (her eyes seem to get goopy when she has them). So, we will surely be in the pediatrician's office in the next few days as well. Sigh...I could really use a couple of weeks without doctors, blood draws, biopsies, etc. But, it certainly isn't going to happen for us anytime this month! Right now, we're looking at blood draw tomorrow, follow-up clinic on April 11 and tonsillectomy/adenoidectomy on April 17. And I'm sure there will be some pedes visits mixed in. In addition, I really need to get her into a dentist soon. She will now need to take antibiotics (because of the valve situation) before having any dental work done, so that is an added layer to the mix. I, personally, detest the dentist. So, this has not been something I have been very good about doing. And with her medication and still drinking Pediasure so many times a day, its something I really need to make happen and soon. Her first visit was without trial - no cavities, no issues. But, its been longer than it should be since that one, so I'm afraid of bad news. I could really do without bad news. And she could really do without having dental work...but, I should get her in sooner rather than later as putting it off only makes it worse in the end (something I've learned from personal experience).
So, that, in a nutshell, was my last couple of days! I hope all of you out there had better.
Thursday, March 15, 2012
When she got out of the hospital, Bean did fantastic. It was as if she was breathing through another person's nose and/or mouth! She didn't snore. She didn't gasp for air while sleeping. It was amazingly peaceful sleep. But, as time went by, she was back to her snoring self. Soon, it was as bad as before and she had a runny nose and started to cough. We had to cancel a sleep study because of the illness. She was diagnosed with Strep Throat, although she wasn't tested for it because it just seemed extraneous - the pediatrician put her on antibiotics. She was on those for 10 days, got better, then about four days later, she started to complain about her ear and she was back to a runny nose. So, we went in and she had an ear infection and some upper respiratory stuff going on. So, back on antibiotics we went (a different one this time). She was on that one for 10 days and seemed to be doing better again, although still a little stuffed up. We were off antibiotics for a few days, the stuffiness continued and a slight cough and then she woke up from a nap with goop in her eye. The next morning her eye was pretty much crusted shut. Back to the pediatrician we went. This time, she had one ear "full of puss" and signs of a possible sinus infection. The eye thing was probably from her ears and sinuses being so full they didn't have anywhere else to drain but out her eye. Ick...so, on to the third antibiotic. That was last week and things just didn't seem to be improving greatly over the weekend. She would feel good and then crash. She would cry at night (I assume from her ear) at random times, over and over. So, we went back to the pediatrician this week and found that she had infections in both ears - the right one looked like "it had not been treated at all". So, we changed back to the original antibiotic she was on for the ear infection and started her on allergy medicine to see if maybe this is all related to allergies. Sigh...
Tonight, we have our sleep study. Even though she isn't 100% healthy at this point, I don't want to put it off any longer and I feel like her sleeping/snoring/apnea stuff is pretty representative right now of what it has been other than that couple of weeks after she got out of the hospital in November. So, we'll be going to Mountain View tonight for that. Wish me luck!
The impetus for writing this update came in the form of a post about RxArt - a non-profit that "promotes healing through exposure to fine art" and has done some amazing projects at different hospitals around the nation. As someone who has and will continue to spend a lot of time in a hospital setting (even if just for visits), I so appreciate the art that is made available in these settings. Lucille Packard has some great pieces in their collection and I'm always excited to see anything new that comes along. Recently, they changed out the art in the pre-op waiting room and made it all sea creature paintings. This was an obvious boost to Bean's spirits when we went! Anyways - I encourage you to check out the link and explore all the different projects and if so inclined, donate some money to the cause! The picture at the beginning of this post is from their latest CT Scanner project at a Children's Hospital in Illinois. We have not been through a CT Scan experience, but I hear they can be pretty scary. So, these happy monkeys could really make a difference for some kid!
RxArt | Promotes healing through exposure to original fine art
I am hoping that I will be able to be more regular about updates on here...wish me luck at getting...and keeping a grip. For at least a little while! Hope everyone out there in the land of the internets is doing well!