Saturday, March 30, 2013

Hospital Life...Days 4 & 5

First of all, today is National Doctor's Day!  Did you know that?  What better place to spend it than in the care of some of our favorites.  Well, ok, I can think of better places to spend it.  That said, I want to take a moment to thank the following for all they have done for Peyton.  I know I'm going to miss some, but here goes:

Cardiology - Dr. A. Savage
Endocrinology - Dr. R. Paulo
ENT - Dr. D. White
Gastroenterology - Dr. R.B. Pillai / Dr. J.A. Quiros
General Peds Team {in-patient} - Dr. D. Mills, Dr. R. Teufel, Dr. P. McBurney, Dr. S. Mennito, Dr. A. Summer
Genetics {Boston Children's Hospital} - Dr. W-H Tan
Genetics {MUSC}- Dr. G.S. Pai
Neurology - Dr. S. Kinsman
Neurosurgery - Dr. S. Glazier
Orthopedics - Dr. J. Mooney
Pediatrician - Dr. J. Quinn
PICU Team {in-patient} - Dr. F. Tecklenburg, Dr. S. Webb, Dr. J. Cochran
Pulmonary - Dr. C.M. Bowman & Dr. I. Virella-Lowell
Surgery - Dr. C.D. Smith

And these are just some of the outstanding physicians who care for Peyton.  There are countless other doctors who have impacted our lives - from when we lived in Houston and when we went up to Boston.  Then there are the countless residents, fellows, medical students, Anesthesiologists, Radiologists, ER doctors, and other specialists who have been consulted along the way.  The above list, for the most part, are the people we see most frequently.  I mention the hospital doctors because Peyton is in the hospital frequently and when she is in she is often in for a while.  These people are people who recognize us even when we aren't in the hospital and we're just passing in the hall on the way to a regular out-patient appointment.  The in-patient doctors are ones with whom I have had the extremely difficult discussions with about what to do in the event that Peyton suddenly needs medical intervention to stay alive.  These people are important.  You don't forget the ones with whom you have had those conversations!

So...a very heartfelt thank you to all the doctors who have cared for Peyton in the past and present.  Saying "thank you" seems insufficient.  But thank you!


Now, on to the update on Peyton's health.

I was so tired yesterday that I couldn't even think of writing an update.  I tried to sit down to do it, but it wasn't happening.

If we back up to Thursday {Day 3}, you know that Peyton was moved from the regular unit to the PICU step down unit.  I didn't really talk about why.  When Peyton woke up that morning, she was extremely irritable.  She'd been getting oxycodone and morphine for her pain as often as she could get it and, yet, she still seemed to be in a lot of pain.  When the respiratory therapist was in, she noticed how unlike Peyton this behavior was, even for being sick.  Later in the morning, another respiratory therapist was in with her for treatments.  As she was working with her, she grew concerned because Peyton was only taking 6-8 breaths a minute.  Instead of being extremely agitated and irritable, Peyton was pretty much out of it.  Not much activity at all.  She went from one extreme to the other.  We didn't know what was causing either one!  She called the respiratory therapist who had been in earlier.  They called in the nurse.  They eventually called in the doctor.  A lot of assessing went on and, long story short, it was decided that she could be better observed in the PICU step down unit, so she was transferred.  They did consult with the PICU team, who did come down to assess her themselves.  This is a good step to take just in case something were to happen that would send her to the PICU itself.  Through all of this, though, we really didn't know what was causing her to be so sick.

The doctors were quite concerned for her on Thursday.  There was a lot of unknown in terms of why she was behaving the way she was.  Rather than just jump to the thought that there was some neurological issue going on, they decided to see if it was all of the heavy pain medications.  They gave her a drug through her IV called Narcan.  This drug basically reverses the effects of any opioids in the system.  She has had no morphine since then and very little oxycodone.  While the drug was being administered, Peyton grew clammy and cold and then began throwing up a lot.  She did become agitated again and her respiratory rate did increase.  Eventually, though, she became pretty sleepy again.  Throughout the time she had been in the hospital, her heart rate had been pretty high.  Normally when she is asleep, it's between 70s-80s and it was in the 150s while she was sleeping.  While awake it's in the 1-teens to 120s normally, but it was anywhere from the 130s to 160s during this time.

The lab work through Day 3 wasn't showing any infectious process, although it certainly seemed like she had some sort of respiratory virus.  They did find that she had more CO2 in her system than she should, so it was recommended that she go on her bipap, even when awake, to help with her respirations.  This did seem to help a bit and her CO2 levels did come down.  More lab work was done.  Additionally, she was sent for a head CT and a shunt series to check to see if her shunt is working properly, and a fully skeletal survey to see if there were any additional fractures.

During the night of Day 3/4, it was decided that Peyton needed to be given IV antibiotics, so those two were started.  We also got the results of the skeletal survey and it did show a new hand fracture.  Nothing is to be done about that in terms of splinting it.

This is Peyton right before her transfusion.
On the morning of Day 4, Peyton's labs were showing that her iron level was very low.  Additionally, her hemoglobin had been dropping.  On Wednesday it was 8.9.  On Thursday it was 8.1.  On Friday, though, it was 7.2.  It was decided that Peyton definitely needed a blood transfusion.  She had never had one before, so this was another "first".  That was started around 3pm and ran over about 3 hours.  At the end of it, she seemed a little more "pink".  Oh, she certainly didn't look "well", but she looked better!  Aside from this, there was just a lot of "watching and seeing" and continuing with the IV antibiotics.

Today is Day 5.  Peyton looks so much better.  Again, not "well", but vastly improved.  She's agitated today.  Last night her right thigh was swelling above the splint.  It had been getting more swollen throughout the day, but is looking a little improved this morning.  Also, yesterday her left index finger became pretty red and swollen.  They did another hand x-ray and it apparently doesn't show a fracture there, but that's not to say there isn't one.  To look at it, I would guess there is one.  The resident said it could take some time to heal before it shows up better on the x-ray.  There really wouldn't be anything to be done for it anyway.  Peyton's hemoglobin is up to 8.6!  They will, of course, keep an eye on that to make sure it doesn't drop again.  They did find some blood in her stool and a small amount of bacteria growing in her urine sample.  They'll keep an eye on all of that as well.

This is Peyton right after the transfusion.  Just a little more "pink" than before.
Peyton looks quite a lot better this morning.  Again - not "well" but if you'd have seen her on Thursday morning, you'd see a huge improvement now.  Our heartfelt thanks to the anonymous donor who gave blood {type O negative} so that Peyton {also type O negative} could receive this much needed boost to her system.  If you are a donor, thank you.  It's because of people like you that she was able to get this blood.  If you aren't and don't have any health reasons not to donate, then would you consider donating?  You never know when you or someone you love will need blood!  As it turns out, I wouldn't have been a match even if I could have done a direct donation.  Our types don't match.  So that makes me even more grateful to donors today!  Thank you!!

Yesterday was Good Friday.  I wrote a post on my personal blog about the fact that Peyton was receiving blood on that day of all days.  You can read that post HERE.

As for today {Day 5}, we'll just watch and see and make sure nothing gets worse.  She was throwing up a lot yesterday and she has already thrown up a little today.  She may have a little bug.  We will not be home for Easter tomorrow.  This will be the first holiday that Peyton has spent in the hospital.  She did, however, get a nice little Easter basket yesterday from the volunteers.  I think Moira will benefit from the contents more than Peyton, but it was very nice to receive.

I will keep you posted as always.  And, as always, prayers are very much appreciated!  Thank you!

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