Hospital Life...Day 29

Today is Day 29.  I wrote yesterday's update late and just posted it right before midnight, so if you missed reading that, you can read it HERE.

Today has been yet another challenging day - and it's not over yet!  I thought I would get a quick update out while I'm thinking about it.  The list of items of things going on with Peyton is pretty extensive right now.

Last night, Peyton had a fever.  She was started on a second antibiotic yesterday but the night resident changed it to something else to cover for a possible hospital-acquired pneumonia.  Her chest x-ray didn't really show anything definitive in terms of a pneumonia, but that's not unusual for her - and it doesn't mean it's not a pneumonia.

I probably hadn't even mentioned this, but Peyton was transitioned down on the TPN nutrition and back up on her tube feeds.  She has been back on the tube feeds solely since Sunday.  They ran all the labs to check her nutritional status.  Her potassium should be at 3.5.  It was 2.1.  She had to be given an IV bolus of potassium over 2 hours this morning.  They re-checked that value and it came back as 2.2, so she is currently in the middle of a 4 hour IV bolus of potassium.

I haven't mentioned her hemoglobin lately because it has been holding steady for the past week, I think, in the mid-10s.  Over the weekend it dropped into the 9s and then into the 8s.  They've been monitoring it much more frequently.  This morning it was lower at 8.4.  It was rechecked this afternoon and it is now 7.5, only hours after being checked this morning.  It will be rechecked, but that's "blood transfusion low", so what they will do is recheck again in a little while and go from there.  It is possible Peyton will require another transfusion.

A lot of labs have gone in a poor direction since transitioning back on to tube feeds.  The reason for the transition is because of her pancreatic enzyme insufficiency which was recently discovered.  In order to receive her doses of the enzyme, she needed to be back up on her tube feeds at her goal rate {the rate she came in on from home}.  This enzyme insufficiency is a possible reason for her malabsorption and, therefore, malnutrition.  By giving her the enzyme, she should theoretically be absorbing the nutrients she was not absorbing prior to having to start her on TPN.  With the enzyme, she should theoretically have been able to transition her successfully back on to tube feeds since she would theoretically now be able to absorb everything once again.  This does not seem to be the case.

Pain management is still an issue.  They were going to revise the plan to taper her off the morphine and on to something else to help with some of the side effects of morphine.  One of the side effects is urinary retention.  She had to have a catheter put in every 4-6 hours after yesterday afternoon just so they could drain her bladder.  They decided to go ahead and put a foley in today.  The pain management plan is remaining where it was for now.

Peyton's leg still does not look good.  It is the strangest thing.  The redness gets slightly better and slightly worse.  There is a large bruise that appeared but then 30 minutes later it wasn't really there.  One of the residents is concerned that the reason for the drop in her hemoglobin might be due to a bleed happening in her leg.  An ultrasound has been ordered so they can get yet another look.

The gallium scan that was supposed to happen today {part 3 of the 3 step process} is now happening tomorrow.  Nuclear medicine decided that the gallium injected yesterday really needs to sit in her for 48 hours for it to concentrate in any "hot zones" so they can get the best possible images.  Since there is about an 80% chance of getting definitive answer from the scan in general, I am all for waiting until they feel like they can get the best images.

Right now, we are waiting on ultrasound, additional blood work to be done to check hemoglobin and potassium, and then we'll go from there.  I am sure there's more going on with Peyton than "just" this, so if I think of it, I'll catch you up in the next post.

As always, your prayers are appreciated!

Hospital Life...Day 15

Today is Day 15.

Peyton had a rough night.  As I was sleeping, the nurses were watching Peyton's vitals and noticed her oxygen kept dipping down.  It got down into the 60-70% range at one point.  They came and checked on her and I wound up waking up.  As I was waking, there were about 4 other people in the room - a couple nurses, a respiratory therapist and the resident on call.  They wound up having to increase her oxygen flow quite a bit.  The RT had to put a suction catheter down Peyton's nose to try to get anything out that might be blocking her airway.  It seems as if it was a very large mucus plug that was preventing her from getting enough oxygen.  Once that was cleared and my own heart began to beat again, her oxygen percentage came back to where it should be.  It was a bit of a scary moment to be sure.  Needless to say, I did not go back to sleep for a while afterwards even though her numbers were fine.

We had our family conference today.  Ron was able to come from work to attend as well.  There were a total of seven in the meeting, including ourselves.  The big issue that we know is that Peyton's body is not absorbing things properly.  She's losing protein, but we're not entirely sure where.  We know she has a copper deficiency.  We learned that over the summer after seeing the Geneticist in Boston.  Since she came into the hospital this time, we have discovered that she had no recordable levels of iron.  This wasn't the case a couple months ago.  Her albumin low.  So is her potassium.  And now zinc.  Fluid is spilling out into her tissue and it seems that no matter what is tried in an attempt to get the fluid off, nothing is truly working.

One idea is that there could be something wrong with her digestive system that is causing her to not absorb these things.  Her tube feds were switched already to a more broken down version of what she's been getting for quite some time.  It hasn't helped.  The doctors are finding themselves chasing all these things which are not being absorbed.  She has had two blood transfusions and an albumin infusion.  Peyton has required multiple boluses of iron by IV as well as potassium by IV.  Some of these treatments are not really a good thing to have to keep on doing.

Her current form of nutrition, as you may have guessed from everything I've stated above as well as what I've been posting during this stay, is not something that is sustainable.  Essentially, she is malnourished even though she is technically getting all of her nutrition.  If it's not being absorbed, what is it doing?  The thought now is that we ought to consider a new {to her} form of nutrition called TPN.  TPN is a form of nutrition that is given through an IV line.  Since she has a port, it can go through there.  The idea is that all of the correct nutrition would be formulated for her and be administered over most of the day.  It contains sugar, carbs, protein, fats, electrolytes and trace elements.  The theory is that it will be absorbed in her system this way.  There would be no feeds going through her digestive system at all.  It would give her gut a rest and, if there is anything wrong in that area, perhaps give it time to heal.  If we get to a good point with that, then perhaps at some point they could do a scope and biopsy to see if they can figure out exactly what is going on in her gut.  Right now, this is not an option.

As this is really the only viable option we have, this new TPN nutrition is what we will try starting tomorrow {Wednesday, Day 16}.  I don't understand it well enough at all, so I don't understand how it is that fluid is spilling out into her tissues right now but TPN is supposed to stay in the system and not spill out.  I am not a doctor.  I have learned many things these past almost seven years, but this is not something I can claim to even remotely understand.  The thought is that we could, in the next several days, get to a point where we can get her home and she would have this nutrition continue at home because she has a port.  The gap between where we are now and where she needs to be to even consider going home is so enormous that I cannot fathom how that will happen, especially considering that I don't understand how putting this into her veins will stay in and be absorbed any better than the things that have been put in and did not stay in!  Any medical professionals who wish to weigh in...click on the email me button over there on the right sidebar.  Maybe it's all theoretical.  I don't know.  I know the options are not plentiful at this point.  I also feel like there is more going on than just  a digestive system issue.

Prior to the family conference, her Geneticist here at MUSC came into Peyton's room to do a skin biopsy.  The Geneticist in Boston had that on his list of things that he needed from us.  As long as she is here, they decided to get that taken care of.  She did very well through the procedure, as did I.  It was just done right here in her room.  I held her arm during the procedure.  I promised if I had to fall, it would be forward onto the bed.  I did just fine, thank you very much!

When I returned to Peyton's room after the family conference, she was having an ultrasound on her leg {the one in the splint}.  The swelling in her leg is down to her foot.  The doctor wanted to be sure Peyton doesn't have a DVT.  I haven't heard the results of the ultrasound yet.

Shortly after that was finished, a friend of mine visited.  She was so kind as to bring coffee and a couple gifts for the girls.  While she was there, another friend came up.  We all three know each other from worship choir at church.  It was so nice to see them.  I also had breakfast brought to me by another friend.  People have been so kind to us.  I really truly appreciate everyone's thoughtfulness.

If anyone is reading this who has been on Peyton's medical team in the past two weeks, you know Peyton's got a thing for animals.  It started with a pink hippo and then we added the quilt with the animals on it as well as the frog.  Her bed is fast resembling Noah's ark with the addition of a little bear, Peter Rabbit, a penguin, giraffe, and Nemo!

Hospital Life...Day 13 & 14

Today marks two weeks in the hospital.  For the record, this is not her record.  17 days is her previous record.  Wasn't planning on breaking it, but I'm fairly confident we will.

Yesterday {Day 13}, Peyton continued to have icy cold arms and hands.  She would be sweating but be freezing cold in areas - not all over her body.  Her temperature would be taken and it would be 99.5 to 100.3.  Very strange.  Her hemoglobin dropped to about 6.6 - 7.1 {it was checked and re-checked}, so she definitely required a blood transfusion.  So, once again, my thanks to the anonymous donor who provided this for Peyton.  Thank you!

The blood transfusion takes a few hours.  At some point while that was going on, her nurse noticed Peyton's nails were getting pretty long, so she left and came back with a nail file and nail polish.  Peyton had her first manicure!  So cute!!  Thank you, Kelly! 

For a couple of hours after her blood transfusion, Peyton seemed to perk up a bit.  She certainly wasn't "well" by any stretch of the imagination, but compared to how she's looked and behaved lately, it was a huge improvement.  I even got some smiles out of her.  I had to take a picture and share.

That sure was a sight for sore eyes!  I will say that this "up" period probably lasted only 2-3 hours, but I'll take what I can get.  Ron and Moira came by when she was towards the end of that period, so I was glad for Moira to see her looking more like that than like how she was before the transfusion.  I know Moira is having a difficult time with things.  She's starting to ask more worrisome questions about her sister.  I'm hoping she can talk to the guidance counselor at school.  She knows she can talk to us, but she may feel more comfortable with the guidance counselor.  As heartbreaking as it is to watch Peyton going through what she's going through, it is equally heartbreaking when I stop to consider what Moira must be thinking and feeling.  She's only 9.  I can't imagine.  She has dealt with so much as Peyton's sibling already and she's going to have to deal with so much more at such a young age.  I hate that for her.

After having a down day, I had a nice treat.  It was wonderful.  I have had a few other similar treats in the past couple weeks.  SO appreciated!!

As for today, her hemoglobin, iron and potassium are all looking better.  They still need to keep a close eye on those. The diuretics they are using to help take fluid off can have the effect of lowering her potassium, so they've had to give her quite a bit.  For now, she's ok with the regular potassium through her tube as opposed to the IV infusions she had gotten.  As for the iron and hemoglobin, waiting is key - will she start producing things properly on her own to sustain these increased numbers?  That is the question.  I would love to be optimistic here, but since she already had a transfusion a little over a week ago and then required a second one yesterday, I'm not sure.

We just aren't sure what the "big picture" is with Peyton.  She's got a lot of people trying to figure her out, that's for sure.  The doctor who was on service last week has been arranging a "family conference" meeting.  Really it's just to get together with the major players in Peyton's care right now to discuss what's going on.  I'm not sure exactly when that will be, but it will be good to sit down with everyone.

Though Peyton's labs were showing some improvement today, she doesn't look as well as those hours after her transfusion.  She's still puffy.  Her face, upper chest, and arms are a bit on the red side.  Not sure what that's all about.   Well be keeping an eye on that.

If I haven't said it recently {or enough}, please know how thankful we are for your love, prayers, and support, whether you are friends, family, anyone involved in any capacity here at the hospital, or someone who happened upon Peyton's story and is keeping her in your prayers.  Thank you!

Hospital Life...Day 10

We are technically starting Day 11 as I type this, as it is just after midnight.  However, this is to update you on Day 10 {Thursday}.

When I woke up Thursday morning, I noticed that Peyton didn't look as "good" as she did Wednesday.  I wouldn't have said she looked great then either, but to me there was a definite change.  Her eyes seemed more sunken.  She just didn't look as great.  I also noticed that her heart rate seemed to be a bit higher than it had been Wednesday.

When the team rounds in the morning, the first thing that happens is that I am asked my opinion of what I think is going on with Peyton so far that day.  I gave my impressions as I always do.  I commented on the heart rate, how she looked, what I noticed about her swelling, and so on.  At rounds, the bloodwork that had already come back showed that her hemoglobin was once again pretty low and she was going to need another blood transfusion.  However, labs later in the day showed higher values so they decided to put that on hold.  They don't want to transfuse unless absolutely necessary.

Peyton required an IV dose of iron today.  This is the second of {I believe} three doses.  The IV iron is a mass quantity of iron for severe anemia.  I was told today that Peyton essentially has no recordable values of iron in her system - that's how bad it is.  They are hoping that these IV infusions will help.

It was decided that the team would get a couple other specialties to weigh in on Peyton's case.  First, Gastroenterology.  They can help to see if there is something going on that would be causing Peyton to be losing protein or have some sort of bleeding issue in the GI tract.

The second specialty was HemOnc.  That's Hematology / Oncology if you haven't heard the term before.  Hematologists are blood specialists.  They came in and took a history of Peyton and asked a lot of questions.  I was able to point out the random strange bruising that happens with her.  She has several examples of it right now.  I was assured that they are in absolutely no rush to get Peyton out the door.  There is something going on with her that is very frustrating and near impossible to figure out.  It's hard to treat something when you don't know what you're dealing with.  They don't understand why the things that are being tried aren't working as well as hoped.  The one doctor was just so sweet and definitely reassuring that they are doing everything they can.

So, what does this mean?

More tests.  More labs were drawn.  They will probably draw more later today.  HemOnc actually thought that her thyroid looked a little "full", so they'll probably test that as well.  But lots of other tests will be done as well.

For now, they are making Peyton as comfortable as they can.  She seems to be having her pain managed alright.  She definitely is more comfortable in the big bed.  As we're now 30 minutes into Day 11, I'm going to wrap up this Day 10 post so that I can get some sleep.  I'll update later on with Day 11 information.

Thanks so much for your prayers and support.

Hospital Life...Day 9

Earlier, I wrote an update that covered both Day 8 and Day 9 of this hospitalization.  Now that Day 9 is wrapping up, I'll write a quick update to catch you up.

As far as the swelling goes, it seems to be in multiple places - her leg being the original place.  Her face is puffy.  Her sides, arms, and under arms are puffy.  Clearly the fluid is not being transported through her system properly, but the things they are doing to try to get fluid off of her do not seem to be working as well as hoped.  Her weight has increased since being in here and it's all this fluid retention.  In addition to her normal Lasix, she was given another drug to help in this area.  I don't know that we've seen any additional wet diapers as a result.

Peyton's hemoglobin was down just a little again.  She's getting closer and closer to requiring another blood transfusion.  Her albumin levels are also down, so she may also need another albumin infusion.  What she does need is iron infusions by IV.  She had one dose yesterday.  It's given in three doses, but the doses are two days apart.  The next dose should be Thursday and then the third on Saturday.  I'm told that 48 hours after the final dose, her levels will have to be checked again.  That brings us to Monday next week.  As far as the hemoglobin and albumin levels, those are routinely checked and we may have a better idea in the morning what they want to do in terms of transfusions.

The doctor does not believe the swelling and redness in her leg to be anything like cellulitis, so that's good.  It's likely just as I described - the fluid is spilling out into the soft tissue resulting in this swelling.

Peyton did have an episode of vomiting this morning, so that prompted the nurse to first give her Zofran to help with any nausea, but then to pull back on her g-tube with a syringe to see how much more of what came up was left in her stomach.  We had visitors at the time that was happening.  I know other people probably aren't used to seeing most everything that Peyton has to deal with, so my apologies.  It appeared that there was dark blood coming up, so she needed to see how much could be pulled out through the tube.  It was about 10 mL.  She thought it would be more, so that was good.  It was sent off to be cultured, but I haven't heard anything about that.

Mostly right now, we are watching and waiting to see what she's going to do next.  I'd say Day 9 was a "better" day, but I use that term cautiously.  There are things that are looking better, but enough that isn't that it still has us pretty concerned.

Today was a day where things played out in such a way that I just received more peace about things.  There is so much to give thanks for right now.  I wrote about that over on my personal blog HERE.  We are commanded to give thanks in all circumstances {1 Thessalonians 5:18}.  Not some circumstances.  Not the circumstances we decided on.  ALL circumstances.  That means the tough times.  The times when you sit in a hospital room for going on ten days watching your child get sicker and be in so much pain you can't bear it anymore.  The times when you speak with the doctors who are trying their best to figure things out but no matter what they do, things aren't improving fast enough.  Those times.

One part of my day was exceptionally meaningful, but I also hold it very close to me as something very personal.  It blessed my day beyond measure.  Those involved know and I am still feeling so blessed by them.  A "thank you" seems so insufficient.

The other part of the day was being able to sit down in relative calm to watch our church's First Wednesday service online.  Matt Redman was leading worship and it was amazing.  His wife spoke as well and her message was so powerful.  I truly feel like all day {not just First Wednesday}, God has placed music, words, and people in my path specifically for me to hear today.  First Wednesday was no exception to that.  Part of it is what I'll leave you with for now.

He will cover you with his feathers.  He will shelter you with his wings.  His faithful promises are your armor and protection.  {Psalm 91:4}

Hospital Life...Day 8 & 9

I did not get a chance to update yesterday {Day 8}, so as we move into Day 9 I thought I would start the day with a quick update before things get busy again.

Yesterday morning, I would say that the swelling in Peyton's leg was no better.  In fact, throughout the day, we noticed that she was becoming puffy in other places - her face, arms, sides, etc.  This is something called third spacing.  Essentially, the proteins that are supposed to transport fluids through the vascular system are lacking and the fluid is spilling out into areas where it shouldn't be, like the soft tissue.

When the doctors rounded, we discussed her anemia.  They did wind up giving her an IV infusion of iron yesterday.  They did not give her another albumin infusion as they wanted to wait until today to see what her numbers look like before doing another.  In addition, her hemoglobin is dropping again.  On Saturday {after the Friday blood transfusion} her hemoglobin had gone from 7.2 {needing transfusion} to 9.  I'm not sure what it was on Sunday, but on Monday it was 8.6 and yesterday it was 8.2.  So she's right on the border of needing another transfusion.  Today's numbers will determine what happens there.

They do not understand why she is losing protein.  She isn't losing protein in the ways you'd normally expect to see.  The team has actually been having discussions with the Geneticist in Boston - just trying to put their heads together to see if there are any ideas or theories on the whole current picture that is Peyton.

Yesterday was filled with a lot of very rough moments.  Her pain level is still up there.  It seems like it's being managed ok, but then she'll have moments where she's really irritable.

As I sit here looking at Peyton this morning, she is definitely more alert.  She was extremely junky sounding yesterday morning, throughout the day and particularly last night.  The Respiratory Therapist said yesterday that she was not exchanging air very well on the left side.  She's just working a little harder than normal to breathe.  Her heart rate looks better this morning for sure.  She's still very puffy. I'm anxious for the doctors to start coming around so I can hear what their thoughts are today.  They've been getting daily weights on her and today's seemed quite a bit lower than yesterday.  Before you get too excited that fluid must be coming off, I think they need to re-check her weight.  The bed has a built in scale.  They zeroed it out yesterday with all the extra blankets, pillows, etc. on it.  When they took her weight this morning, they took everything extra off the bed.  Of course her weight will be significantly lower!

That's all I know for now.  I just wanted to get an update out there about yesterday since I didn't get a chance to last night.

Today is Day 9.  I'll update again later on.  In the meantime, please just continue to pray for her.  And for her weary parents.  This time around has been exceptionally hard on both of us.  We have always known that Peyton's life would be far shorter than we want it to be.  However, despite all she has been through in the past, we have never felt more like we were reaching the end than we have this past week.  All that said, she has been known to rally in the past and we could be sitting at home next week thinking how ridiculous it was to feel that way.  I do want to stress that nothing has been stated that anything is imminent, but as a parent sitting here watching her suffering this week, you have to wonder how much more a body can take.  So our stress level has been higher and so have our emotions.  I just pray for her healing, no matter which form that takes.  I just pray that God's will is done.

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!