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 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...Day 7

Earlier today I posted a Day 6 & 7 update which included information on yesterday and the early part of today.  Today has been a busy {and not great} day, so I thought I would go ahead and write a post just in case tomorrow gets to hectic to post anything early on in the day.

I shared with you that Peyton's right leg has been swelling above the splint:

After the doctors rounded this morning, someone came by to do an ultrasound on the top exposed portion of her leg to see if they could see signs of a blood clot.  I haven't heard anything, so my assumption is that they did not.

Because Peyton is retaining so much fluid, the attending felt it would probably be a good idea to get an echocardiogram done to ensure that there is not excessive fluid building up around the heart.

On Sunday Peyton had a renal ultrasound to make sure that her kidneys were ok.  They were slightly enlarged but did not show signs that urine was backing up back into them.

She did receive the albumin infusion today.  I am not sure what, if any, effect it has had on her at this point.  If anyone has any ideas on why this infusion is in the old-timey glass IV bottle, please let me know.  We're all curious!

The swelling in the picture at the top is mild compared to how it became as the day wore on.  It became increasingly puffy.  The swelling migrated towards the groin area as well as around the back.  In addition, the redness was moving up towards her hip in one area.  It was warm to the touch also.  The nurse, at my suggestion, marked the redness with a pen so we could see if it was spreading.

Peyton was just so incredibly uncomfortable today, so they decided to move her from the crib into a regular bed.  It's well padded, so there's no risk of her falling out.  It's bigger so there's more room for all the extra pillows and blankets that are being used to prop her in different positions in the efforts to redistribute the fluid that is pooling.  It's also a lot more comfortable for her.

That said, it was pretty obvious that Peyton's room was too small to accommodate a regular sized bed, so the nurses put together a plan to relocate her to a larger room.  A patient was discharged, the room cleaned, and Peyton was moved in to her new space this afternoon.  I must say that next time we wind up in this unit I'm going to have to put in a special request for this "suite"!!

What you see in the above picture is probably only about half of the room!!  This room is huge.  Honestly, it has no additional amenities than the previous room except that it has more space to spread out.  It's got the same couch.  I think it's a bit of a storage spot for additional chairs, so we have 3 guest chairs in here instead of the usual 1.  And I've only just noticed that there are no creepy sea creatures on the walls of this room!!  That's ok.  It's a corner room and two walls are pretty much solid windows so it's got the best view.  Much more comfortable in this room!!

There are probably multiple reasons why this swelling could be happening, but we have to be very careful with Peyton so that we are making sure that we do the right thing for her.  As of right now, I still don't have a final answer as to why this is happening.  One of the times a doctor was called in, they decided to call for Ortho to come and look at it.  The feeling is not that the swelling is related specifically to the fracture.  However, if the splint would need to be removed, then we need Ortho involved.  The same doctor who put the splint on was the one who came up to see her.  He did not feel that the swelling was bone-related.  He did, however, cut a section of the top of the splint about two inches down to create a split to allow for more "breathing room" for the swelling.  If I were to have taken a picture a little while ago, you'd probably say that the swelling has gone down significantly.  I would have to say that the split in the splint probably just allowed for the swelling to shift and redistribute to other areas.

Peyton did not have a good day.  She just had a rough day.  She was pretty sleepy but also very irritable when she was awake.  She's not comfortable in terms of just dealing with that swelling.  She's not herself.  She's gone downhill and we don't know what's at the root of it.  I'm sure everyone here would love to have answers, but they just aren't coming.  It seems like there were some little improvements, but then there are other things that are worse.  I don't know.  This is just so difficult.

Hospital Life...Days 6 & 7

It took almost 7 years, but Peyton spent her first holiday in the hospital yesterday - Easter.  Obviously we truly rejoice at the significance of this day.  That said, it really stinks to spend a holiday in the hospital.  I couldn't be at church so I tried to join in our church service online.  There were multiple times, but people kept coming in and out, or she was in the middle of respiratory treatments, or I just couldn't get on the site at all.  I didn't get to church in any way yesterday, so that brought me down.  Then there was the missing of a nice Easter lunch with friends who had invited us.  Then there was the missing of people in general.  Ron's dad and his wife were arriving in town yesterday and they did come up for a short time later.  Moira didn't seem overly thrilled to be here.  It wasn't a long visit.  Then there was the fact that Peyton just had a really rough day yesterday - very irritable, cranky, in a lot of pain.  I kept thinking of how much pain one can possibly bear watching their child go through and relating that to the Easter weekend - God allowing His son to suffer.  Anyway, I won't go down that road.  I think I have cried enough for one 24 hour period.

Peyton seems to be improving from a respiratory standpoint, which is great.  Also neurologically - she's not "out of it" like she was the other day.  But there are still issues going on that need to be figured out.  One such issue is some swelling and redness that started a couple days ago.  It's in the area above where the splint on her leg stops.

You can see how it's red and puffy.  Overnight last night, the swelling began migrating into the groin area.  The redness extends there as well as towards the back side of her leg going in the other direction.  The edema isn't pitting and there aren't any hard areas.  Her circulation to her foot is good.  The splint isn't too tight.

One thing we've discovered is her albumin is very low.  This might have something to do with why she is pooling fluids.  They are having to be extremely careful because her fluids are higher than they should be, but they can't just give her a diuretic to make it go away.  They have to be very cautious about fluid intake and output.  She does require an albumin infusion.  That will happen today.  They will also do an ultrasound on her leg.

In terms of seeing if there is another fracture, they are very hesitant about doing any additional x-rays...anywhere.  Peyton has had so much radiation between x-rays, CT's, etc. in the past month or two.  They don't want to expose her to any more than absolutely necessary.

Right now, the plan is to do a lot of watching of this swelling, all her labs, etc.  I think they wanted to try to get her home the early part of this week, but I'm doubtful about that happening.  The nurse today thought it might be a good idea to get Peyton into a regular bed rather than a crib, so they are actually working on that right now.  She's got her bed, she's in it, and the nurse and tech are working on getting pads set up on the side rails.  She looked so huge in the crib.  Now she looks so tiny in this huge bed!  I'll post a picture of that next time.

We truly appreciate all the prayers.  As I overheard one of the residents or students saying on rounds out in the hall the other day, Peyton is a "challenging" case.  As you know, when we do go home, it doesn't get less challenging.  It gets more challenging.  They Peyton we knew last week is gone.  This is another decline in her overall condition.