Hospital Life...Day 25

Today is Day 25.  If you missed yesterday's update, you can read it HERE.

There is not much more heartbreaking than watching your child suffer in unbearable pain.  That was what most of today was like.

Let me back up though.

I was woken up by the doctor somewhere around 4:30 this morning.  That nearly did me in.  However, it wasn't what I was thinking it was going to be.  Apparently Peyton, by that point, had not wet a diaper in 12+ hours.  The nurse had already been watching this and they did a bladder scan and discovered she was retaining quite a bit of urine {I think the doctor said about a half liter}.  It's not good to retain, so they decided they were going to do a one-time in and out cath to empty her bladder.  The doctor was letting me know what was going on.  They gathered up their supplies and were just about to start opening packages up when they opened up her diaper to discover that she just peed.  Way to go, Peyton!  She did not have to be cathed, which was wonderful news.  That would not have been pleasant for her at all.

The resident came around just before 8am.  Once again, Peyton's leg looks no better.  She was sleeping, but she started to have this strange movement with her respirations.  We watched that.  He paged the other resident, who came in pretty shortly thereafter.  Meanwhile, Peyton did stir a bit, and when she did she did not appear to be comfortable at all.  When the other resident came in, Peyton was not making that strange movement.  It only lasted a short time anyway, but she hadn't repeated it.  She listened to Peyton and, while she sounded clear, she noted her breaths seemed long/slow.

The team rounded sometime just before noon.  I was, again, invited out to the hall with everyone.  It was quite a large group.  They went over everything system by system as they always do.  It's always interesting to hear what they have to say.  That took quite a while to go through everything.  Once that was done, they came in to the room.  Peyton was awake but having some discomfort which quickly escalated into the worst pain I have ever seen her in {or anyone for that matter - myself included}.  It went on and on.  She was absolutely inconsolable.  One of the big topics of discussion is pain management.  I was glad everyone was in the room to see what she goes through, although this was, by far, worse and longer lasting than anything I'd yet seen.

I was by Peyton's side for the most part but then I had to step back and I just cried.  I hate crying in front of one doctor, but it was everyone.  I just want to fix Peyton.  I want to make it all better for her.  And if I can't, I want to take her place.  And I can't do that either and I just feel so helpless.  It's worse because she cannot communicate in any way at all to let us know where she hurts or to let us know what makes it better...or worse. 

Peyton's physical therapist from the outside world came to visit and she walked in to all of this and I felt so bad that's what she walked in to, but it was so good to have someone in the room who wasn't there in a medical capacity just to stand with me through it.  We glanced at the clock at some point shortly after everyone had cleared out of the room and it was 12:45pm, so between being out in the hall and being in the room, these people were with Peyton the better part of an hour! 

Peyton's continuous Morphine dose has been adjusted upwards.  There are also orders written for "rescue doses" which are doses to be administered if needed for breakthrough pain.  She can get up to 3 in an 8 hour period I believe.  I would say that it was not until about 4pm that her pain was "controlled" to where she was actually sleeping soundly and not having intermittent periods of pain.  While our visitor was here, Peyton did rest some, but she'd stir a little here and there.

So how's the leg you might be wondering??  When the team came in on rounds, her leg was worse.  It was more red.  It appeared more swollen.  An ultrasound was ordered to see if they might be able to see any signs of an abscess.  They did not.  That doesn't mean she doesn't have an infection.  The bone scan will now be happening on Tuesday.

I had another sit-down today with one of the people on Peyton's team to address my concerns.  I am too overwhelmed, tired, emotional, etc. to get into that.  Today was really rough.  I think we have all been pushed far beyond our capacity.  That said, we are still trying to figure this leg thing out but mostly we are trying to keep Peyton comfortable.

If you are reading this and you are a part of Peyton's team {particularly if you happened to be present in the room this morning}, thank you for all of the concern you are showing for Peyton and for us as a family.  I know what it feels like to watch things unfold as her mother.  I know you are doctors and nurses and you don't have the personal investment in Peyton that we do.  But you're not machines either.  I don't know how you manage to remain professional {calm, collected, etc.} in situations like these.  I can't imagine it's easy for you to see a child in so much pain either.  I just want to thank you again for everything you are doing for her.

Praying for a peaceful night for Peyton.

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 14

Today is Day 14.

I wrote about the start of Day 14 here but wanted to share how the rest of the day went.  Ortho came by to remove the full splint that was on Peyton's leg.  The swelling in her thigh was getting worse.  It was more red and "tight" feeling.  While the splint itself was apparently not too tight, it was felt like it would be more comfortable for Peyton so long as she had something to stabilize her knee.  We had previously ordered a knee immobilizer to use after her first leg fracture.  That was delivered to the hospital, but the Ortho docs didn't think it was long enough to give her the support she requires.  They left and one went in search of something else.  He returned and set about fitting it for her.  It's a little on the long side, but it does provide the support she needs.  The advantage to this rather cumbersome knee immobilizer is that it can be opened so the doctors can check on the status of the swelling and it can be loosened if need be.

Since this was put on, it has been opened a few times so various people could see.  When the other splint first came off, I immediately noticed that Peyton's knee was enormous.  The has tiny little legs and so that just made it seem all the more huge.  I asked if that was just swelling from the fracture.  The Ortho doc said he thought so but to certainly keep an eye on it.  Later in the day, it was opened a few more times for examination by various people.  Each time, the knee looked less swollen, but only because her lower leg was swelling up larger and larger.  The thigh is not quite as swollen, although it's still swollen and still pretty red.  All of that swelling is moving down her leg into her foot.  I do not know if the volume of fluid in her leg is necessarily greater.  It could just be migrating towards her foot now that it has room to move without the other splint in the way.

I am always very grateful for visitors.  Today a friend came by with coffee.  Always appreciated!!  Another friend came with her two children.  They brought food, snacks, a picture the kids had drawn, and a couple little toys for Peyton.  So sweet!

Throughout the day, today, Peyton's skin has had a flushed appearance.  It's varied a little, but it's mainly part of her face, under her chin, her upper chest, and arms.  We aren't exactly sure what that is all about.  She also continues to be puffy looking all over.  After the good couple of hours she had after the blood transfusion yesterday, she wound up coming back down to a not so happy version of herself.  It's hard to say if she's just irritated or experiencing more pain.  I would expect she'd have some pain with having that splint removed.  

Peyton is quite the mystery.  Whatever is going on with her is truly baffling {in my completely non-medical opinion}.  It seems like everything happened all at once, but when you go after one thing, another thing pops up that poses another problem.  It's definitely difficult to watch your child go through so much and to see her so ill.  But I have no doubt that everyone is doing their best to figure this thing out.  I have no doubt that they are going above and beyond to try to help her.  I am grateful.

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 12 & 13

It seems like yesterday was a busier day than I thought it would be when I wrote the Day 12 update.  I thought I would take a moment now while it's quiet to write a quick post on how the rest of the day went.

Peyton's leg began to swell above the splint again.  It hadn't gotten completely better by any means, but it was a little improved.  However, it was actually quite swollen, going further down towards the splint.  It was warm to the touch, tight feeling, and red.  I called the nurse in to come and look at it.  The splint definitely seemed like it was too tight around that area.  Her toes still looked good, so we weren't worried about lack of circulation down her leg.  Of course, because the splint is involved, Ortho needed to be paged.  This was mid to late afternoon yesterday.  They weren't really responding so peds came and looked at it and they got back on Ortho to get them to come over.  The issue was not that we thought it was a problem that could be addressed by Ortho - it was that she has a problem with her leg and the splint may need to either come off or be re-done a little more loosely.  At some point around 4pm or so, we were told the Ortho doctor on call was down in the ER with a trauma and would be up in about 30 minutes.

LONG story short, he came by sometime after 10pm.  Maybe closer to 11pm or later.  He'd been paged multiple times.  No one up here was happy.  When he did come in {and I will spare you the actual conversation}, we were definitely made to feel like our little swollen leg wasn't as much of a priority as the slew of traumas that were apparently coming in to the ER.  I will tell you that our nurse last night was not impressed in the slightest.  Nor was I.

As a sidebar, here is my word of advice to anyone in medical school, in the medical profession, or anyone who is seeking to be in the medical profession.  You need to check your ego at the door.  No patient is more important than another.  I'm not speaking clinically - I agree that there is a triage system in place for a reason.  However, when you come up to a patient room, you need to be aware that that body lying there in a bed hooked up to all kinds of stuff...that is a person.  And those bodies in the room watching over that person...there's a good chance that that is their family.  And if you take a moment to look at the patient's chart for half a second, you might find out that the person and family in that room might just be dealing with something that is potentially life-threatening.  So, what you consider to be an inconvenience or interruption to some, perhaps, more "exciting" medical drama down in the ER, might just be something that is of extreme importance to the people waiting upstairs for hours for you just to hopefully give some relief to that child.

All that said, a little while later, that doctor was back and one of the issues we wanted resolved was taken care of.  I am not thrilled with that whole experience, but I am not going to allow it to define this hospital stay.  It doesn't.  It was just a bump in the road of this whole experience.  Peyton has received excellent care this whole time.  While we did have a not so nice experience, I want to place more emphasis on a) what can be learned from this as I shared above, and b) that there are people in the medical profession who are willing to go to bat for you when something like this happens.  Peyton's nurse was right there when it happened and I can assure you that when she left the room, people in the right places knew what happened.  I had more than one apology for the experience from people who weren't even there.  I want to focus on the good of the situation and how things can be made better if there is just a better understanding of people's situations.

With regard to the swelling, prior to Ortho coming in, the peds attending came back in the evening to check on Peyton.  They are being very cautious about how much testing is done - whether it's in the form of x-rays or lab work.  If there isn't something obvious or they aren't sure what they will do with the results, there's a good chance that they will hold off.  They are being very cautious about how much they are putting Peyton through.  After much discussion, it was decided to put her back on an IV antibiotic to cover any type of infection that might be happening.  They also decided to get a urine sample and some blood.  I haven't heard back on those things specifically.  It did appear that Peyton might have been dehydrated so they gave her a bolus of fluids as well.  It seems strange to think she's dehydrated when she's retaining all this fluid.  It's just that the fluid she's retaining is not in the right places.

This morning, Peyton looks much the same as she did last night.  The bolus seems to have helped a bit.  She has been having a lot of diarrhea lately so that's probably why she's been dehydrated.  The addition of the IV antibiotic won't help in that area.  Her hemoglobin is very low again this morning.  I want to say it was around 8.6 or so yesterday {maybe a little higher}, but this morning it was 6.7 and then 7.1 when they rechecked. Recall that it was 7.2 when they did the blood transfusion a little over a week ago.  The team hasn't rounded yet, but I am going to assume that another transfusion is likely.  She may also need albumin.  Peyton has also gotten a couple infusions of potassium because that is also low now.  They want that number to be around 3.5 and hers was in the 2s {maybe lower but I can't remember how low it got}.  Today it's 3, so they may do another one.  Lots to look forward to.

I mentioned that Peyton's attending had rotated off and the new one came on for the weekend.  When he came back in last night, we wound up having a bigger talk about the whole picture.  I know that the doctors have this optimism but as the mom, just sitting her watching Peyton, I would love to be that optimistic {and I'm not sure on a scale of 1 to 10 just where their optimism lies}, but I honestly don't see how we can get to where she needs to be to even consider going home.  If that is the road, it's a very long one.  When we sat down to talk, he felt that maybe my "mom radar" was going off about things as my responses to his questions earlier in the day were maybe not ones he expected - perhaps lacking in the optimism would be the best way to describe that.  Anyway, you know, I hate crying in front of people here.  I don't know why.  I cry on my own no problem.  It was a good talk.  I am sure I needed that.  I know we're all on the same page as far as how much we do for Peyton, but it was good to let my thoughts known as well so they know where my mind is at.

After finishing that thought, the residents were by and discussed the Ortho issues and the issues with her potassium, hemoglobin, albumin, etc.  So, we will see what happens today and I will update later.

Hospital Life...Day 12

Weekends are a little quieter here.  There aren't so many people around, it seems.  The residents came by and then the team {a smaller version of the team that rounds during the week}.  I was sad.  The doctor who has been with Peyton from Day 1 went off service.  A new doctor is on for the weekend and then another new one will be on after the weekend.  Truly, there's no "bad" doctor on the list of doctors whose service she could be on, of all the ones we've ever seen.  But if I had to choose my top 3, these three would make up that list.  It's funny, because I had just had this discussion with Ron.  I knew that this was coming.  I shouldn't fear change so much. 

Since we're in it for the long haul, I had Ron bring a couple comforts of home for Peyton - not just me.  She's had her pink hippo since we went to the ER 12 days ago, but I had him bring her frog and her blanket from her crib at home.  We've got an animal theme going.  the purple elephant is new.  MUSC has a volunteer program called Happy Wheels.  Donations of books and toys are given and each Thursday, volunteers come around with a cart.  Each shelf of the cart has toys or books {one week it's toys, the next it's books} grouped by age range.  Peyton has been the recipient of several Happy Wheels items over the past few years.  The elephant was from this past Thursday. The frog is actually from one of her stays this past February.  What a great program to have.  If you would like to find out more and especially if you would like to contribute in some way, you can read more HERE.  As for the hippo that everyone seems to love so much, I received that myself as a "blogger perk".  Over on my personal blog, I was contacted by a company called Hullabalu and asked to do a review of one of their toys in exchange for the toy of my choice.  I gladly accepted the offer.  You can read about that over HERE.  It's too bad Dr. M went off service because Peyton's about to add another animal to the collection later today as I asked Ron to bring another specific item from home.  He was always commenting on her little friends.

As for how Peyton is doing, it is honestly so hard to say.  I had a talk with the doctor yesterday outside of the whole team being present and there is still the hope that we will get her back home.  Some of her lab numbers look a little improved {hemoglobin, albumin} but she just doesn't look good.  I took this picture yesterday.  She doesn't look well here and she doesn't look as "well" today as she does in this picture.

One concern that I have right now {since yesterday} is that her arms and hands have been icy cold.  Absolutely freezing.  Sometimes it's her entire arm through her hand.  Sometimes it includes part of her side and part of her chest.  Sometimes it's one arm/hand and not the other.  Sometimes it's patchy spots of coldness on both sides.  Along with it, she's so clammy to the touch.  She is sweating a lot.  If you run your hand through her hair, her scalp is wet and her hair is soaking wet in places.  Her temperatures have been up a little - in the upper 99s to 100.3ish.  For her, that's high.  Fever yet freezing cold to the touch.

I don't understand what is causing this to happen.  Is it something in her brain not firing right?  I'm not sure.  The doctor this morning said that it's possible that with the diuretics being given to take fluid away, there's a shift in her system that is causing the hemoglobin numbers to be falsely higher than they really are.  I can't explain it right - but it made sense when he explained it.  Her hemoglobin has been trending upward the last couple of days - enough to where they called off a possible blood transfusion on Friday.  It's possible her anemia is causing this issue with her body feeling so cold.  It could also be some sort of infection, although I think that's a small possibility right now, but certainly something to watch for.  They are obviously going to keep a close eye on everything.  The doctor said that it is possible she may need a transfusion and so not to be surprised if that does become necessary again.

Peyton completed a total 3 infusions of iron by IV yesterday, after being given once every couple of days.  The plan is to repeat an iron study on Monday to see where things stand.  Peyton's potassium is also really low.  I believe they had added some potassium to her list of meds {via g-tube} but it is quite a bit lower now, so they are currently giving her an IV infusion of potassium.  That will run over a total of about 3.5 hours.

Gastroenterology has weighed in.  They ordered some stool studies to be done.  She doesn't have c diff, so that's good.  Some of the studies are going to take some time to come back, but they are essentially looking to see what fats and proteins are being excreted in her stool.  They currently don't know where she is losing her protein.

I just want to thank the people who have been so good to us.  Neighbors who have helped out with Moira - you have no idea how grateful we are that you've been able to step in and help with her.  Friends, please remember Moira when you're praying for us because I know this is hard on her even if she doesn't say a whole lot.  I don't know how much she is aware of how sick her sister is.  We haven't had a "big" talk with her because we don't want to cause more harm than good, especially if it's done prematurely.  But she has to be aware on some level, so please pray for her.  Friends who have come to visit, brought food or snacks - thank you!!  Your company is so appreciated.  So is everything else.  But just to have company is huge.  When we're up here alone, it can start to feel pretty isolating, even if I do have the internet to bring the world a little closer to me.  Family.  Wow.  We were expecting Ron's dad and his wife to visit long before Peyton was hospitalized.  I am so grateful they still came even when the found out half the family wouldn't be home and that they got a chance to come visit with us up here.  We also had the unexpected surprise of having my cousin and his wife come to visit.  He just happens to be Peyton's godfather and they are vacationing in the Myrtle Beach area, which is maybe a couple hours north of here.  We're so grateful they came to visit!  

And then there's the medical side of things.  This is Day 12 and, honestly, until a little blip with the nursing this morning, I haven't had a single issue or complaint about anyone or anything.  Even with the issue this morning, everything is resolved and we're back to things being exactly as they were.  From doctors to nurses to respiratory therapists to nurse's aides to everyone else who has been involved somehow in caring for Peyton, please know that all you do is so very appreciated.  I know without a doubt that Peyton is a mystery.  A challenge.  I know that what's been going on has probably been frustrating.  As Peyton's mom, I watch and I wish I could fix things.  I don't know how it feels to be the professionally trained person who is supposed to be able to fix things only to keep coming upon more and more obstacles.

So, that's kind of where we stand for right now.  I'll be keeping you posted....

Hospital Life...Day 11

Today is Day 11.  Friday.

This morning when I woke up, I immediately could hear Peyton's junky sounding breathing.  I looked at the monitor and her heart rate was up in the 150s/160s.  She was a little fussy as well.  As soon as a nurse came in, I asked if she could get something for pain in case that is what this was about.  Her temperature was also up.  37.7 C {99.86 F}.  It seems that people generally want to see her hit 100.4 F before they get concerned, although she normally runs around high 96s to 97.4, so 99.9 is high for her.  She was also very sweaty.  A while later, she was clammy to the touch and her arms and hands were freezing.  I'm not sure what that was all about.  As I type this now, she's 100.2 so I think they've called the doctor.  Her right hand is like a block of ice right now.  Earlier it was her arm and her hand.

Peyton's hemoglobin and albumin levels have come up a bit, so she doesn't need any transfusions for now, so long as she keeps trending in that direction.  Her white count is up a little, so they'll keep an eye on that.  She received an iron IV infusion this morning {her third so far}.  Hopefully she will start maintaining appropriate levels on her own.

I asked this morning if it would be possible to speak to Peyton's doctor without the whole entourage.  I honestly don't mind when a team of 10 or so students/residents/doctors come in.  I had questions that I wanted to be able to ask and discuss without an audience.  So once they came around, he stayed behind and we talked about all the concerns I have for Peyton.

My biggest concern this past week hasn't been when Peyton will come home.  It has been if she will come home.  I've said before that this visit has brought us the closest to feeling like that is a definite possibility.  I think that's a legitimate concern.  I am reassured that the doctor is still optimistic that we can get Peyton home.  I think there's a lot to sort through before that happens.  I feel more encouraged by some of the labs that have come back, although to look at Peyton, I still see a very sick little girl.  If I posted a series of 11 pictures, one for each day of her hospital stay, you would probably notice differences, but I think you would agree she still looks pretty horrible.  When I sit here listening to her breathe, there are times when I wonder how she can breathe sounding as bad as that.

Peyton is unique.  She's hard to read.  She's challenging.  She can change in an instant.  The little positive changes that are happening are good.  No, they are great.  I'm very thankful she did not require that second blood transfusion, although if it does become necessary, I will be equally thankful for her to be able to receive it.  I believe we are still a long way off from heading out the door with her and a lot has to happen between now and then.  I also think a lot could happen between now and then.  My head understands the information I am getting.  I do hope and pray for the best outcome and that she will be able to make it home.

In my heart, though, I know her time with us is meant to be short.  I know that it's all in God's hands.  Regardless of what is done for her here, it's in His hands and His timing.  I wish I could visualize on a timeline where we are at.  But we can't.  She's so complex.  Peyton tends to do things Peyton's way and we just follow her lead.  I asked specifically about where we were at in terms of needing to call everyone in.  Right now, at this moment, his answer was that if people wanted to come see her and have a nice visit in Charleston while they're at it, then they should.  But we're not at the point where if people want to see her, they'd better get here today.  Of course, all of that is subject to change.

I guess I will use the phrase that my Ob/Gyn in Houston used over and over with regards to my pregnancy after a massive pulmonary embolism in 2004 and then treating my general health again after an even more massive P.E. in 2006 {2 weeks after Peyton was born} - I am cautiously optimistic.  Although I'd probably say I'm being far more "cautious" than "optimistic" right now.  If you wonder where Peyton gets her ability to overcome some medical odds, you might take a look at my own medical history.  Well, that and the power of prayer and God at work in our lives!

As the day progresses, we are just watching and waiting and praying.  I'm waiting on someone to come and see Peyton since she's developed this higher temperature.  In the meantime, I'll continue to be listening to some powerful worship music.  I realized when I checked my iTunes that I'd listened to Strong to Rescue, a song from the Seacoast Worship album by the same name, 190 times 207 times {just checked again!}.  However, right now, I'm listening to Kari Jobe sing her little heart out.  This is such a powerful song.  I am listening, praying and leaning on this now.

Please know how much our family appreciates all of the prayers and support of all the people this blog reaches.  I know it's reaching more people than we even know.  If you feel led to share Peyton's story so that she can be covered in even more prayer, by all means please do so.  I also know it's possible that some of her medical team may come across this blog and we can't even begin to express our gratitude for everything you are doing for Peyton.  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.

A Little Better?

I *think* that there is a possibility that today is a better day!  I think.

Peyton did well overnight.  She woke up a little earlier than she has been the past several days and she started fussing with her bipap mask on.  I realized that if she's fussing now with the mask, she must be starting to feel better.  She's been having to wear it pretty much 24 hours a day for the past several days and hasn't fussed one bit.  You can bet that means that she doesn't feel well.  She fussed a little more while she was being cleaned up and having her bedding changed.  Again, I take all that as a good sign.

We are hoping that today they will take her off another antibiotic, which will, at this point, leave her on only one of the original four antibiotics.  It's been 7 days or so of antibiotics, and since they haven't found anything, they've been peeling them away a little at a time to see how she does.

She had an EEG the other day and an MRI yesterday.  As expected, all of that was normal.

The one thing that's come up that is a little concerning is that she is getting more anemic.  She is usually a little anemic and she takes iron supplements twice a day.  However, her numbers here lately have been dropping a bit.  They are going to give her til the morning when they check her blood again.  If she drops to a certain number, then she will wind up having to have a blood transfusion.  She's never had one before, so that's a little concerning.  And, no, I cannot donate for her.  There's a whole process that would take days to get through.  But I will say that this is a great opportunity to learn the importance of donating blood.  It would be a great thing to consider!  Next time you hear about a blood drive, would you consider taking the opportunity to give blood?   I know I will!

That's about all there is for now.  I will keep you updated.