March 9th, 2011. Day -2

playing with her new toys from the hospital

Charlotte had a pretty rough night.  She spiked a fever again in the middle of the night so this morning we were able to get her on scheduled tylenol to help her out through the day.  She had her good and bad moments in the day  Some times she would be pretty happy and want to play, then the fever would kick in and she might get a little more clingy.  She had maybe a bite of banana to eat today and a little water and a couple sips of milk.  But she is still on constant fluids that we aren’t expecting her to be thirsty too much.

Her diaper changes have still been constant, and all of that wiping really takes a toll on her little diaper area.  It is getting very sore and she knows it.  She now cries when we have to change her because she knows that it is going to be an unpleasant experience.  We haven’t been able to get her a nice sit down bath because she has been hooked up to IV constantly the last two days.  We hope tomorrow might give us some tubie free time for just a little bit.

she still had some good times with Mommy today

So today was a day of many new firsts and lasts.  Throughout this whole procedure Amy and I have been looking for little milestones we can achieve along the journey to make us feel like this is really progressing.  This was her last scheduled admission, her last dose of busulfan a few days ago, etc…So now we are hoping and praying that today is the last dose of chemo she will have to receive in her lifetime.  Today also is the finish of her every 2 hour diaper changes and no more cotton balls in her diaper-which CJ just didn’t approve of.  Unfortunately, today was also the first time in the last 6 months of immunocompromising treatment, including 4 rounds of aggressive chemotherapy and two trips to the ER, that she actually grew something on her blood cultures that were taken yesterday when she spiked a fever.  That is really, really hard for us to believe.  But sure enough, at 18 hours, one of her PICC line cultures tested positive for the strep bacteria.  It was only present in one line which makes us hopeful that maybe only her line is infected (not her blood), or maybe the test blood itself was externally contaminated.  This also meant that today would be the first time she would have to have her port accessed in almost a month.  They need to do this to pull a culture to see if somehow her closed off port was the source of the infection!  So Charlotte didn’t have a very good evening for a little girl already beaten down by a day of high temperatures and flu-like symptons (how the nurses describe the ATG side effects).  She was held down by Amy while her port was accessed to

tubies, tubies and more tubies

draw blood.  They also moved her ATG IV line to her port now so they could start antibiotics through her PICC lumens.  Today was also the first time she had maxed out her IV brain so our nurse brought us another one to attach to her cart.  It will be populated more as the weeks progress, but it is already tough to manage and keep lines straight and untangled…

It is now 9:30pm and she has been resting uneasily in Mommy’s arms for a while.  She gets pretty miserable after the ATG is started and tylenol only does so much to take her yuckies away.  They are pulling blood cultures from her PICC lumens now.  I hope they come out clean and that might prove a false positive from yesterday.  Tomorrow she gets a dose of anti-rejection medicine-cyclosporin, and her last dose (finally) of the plain old nasty ATG (antithymocyte globulin) starts at noon.  Everyone still tells us that the week or two after the transplant is the worst she is going to feel because her numbers will be down, so we hope she will recover to have a few more good days before that time hits.

Let’s all pray for clean culture test results.  Tomorrow is the day the bone marrow donor, wherever she is, goes in to give our little girl the gift of life.  So please, let’s also give thanks for the bravery of this woman and pray for the success of the extraction and its safe arrival here.