Biopsies 2, Bean 0

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.