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 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 2

Just in case you don't follow me on facebook, twitter, get automatic email updates from this blog, or just otherwise haven't heard in some way, Peyton is back in the hospital.  I wrote a brief post on this blog yesterday, but it was sent from my phone.  I don't know how many actually saw it.  I had actually written a post earlier on Tuesday which was an update on various things including Peyton's visit to the Endocrinologist, the possibility of traveling back up to Boston, and the apparent seizure activity she had Tuesday morning.  I thought I was done updating for the day.   I thought that was enough info.  Apparently not.

So...

After that seizure activity, Peyton was extremely irritable.  I mean - to the extreme.  Inconsolable.  It was heartbreaking.  Her home nurse and I couldn't figure out what was going on.  Peyton was so upset and agitated.  This continued throughout the day.  She was crying/screaming so much she eventually wore herself out and finally fell asleep.  The second she woke up, she was back to screaming.  We didn't know if it was something to do with the seizure activity, if her leg was hurting her {it seemed to be bothering her in some way, but was it because of what happened with the tremors...we didn't know}, or if it was something else.  It definitely seemed to hurt if you tried to move her right leg, but we had no idea why or where exactly the pain was located.  At about 2:00 we decided we needed to take he to the ER.  No more trying to figure things out from home.

We got to the ER.  We usually never have much of a wait in the waiting room.  Of course, because it's difficult for Peyton to be in her wheelchair for very long since all the fractures last month, it was almost an hour wait.  When we got back into a room, we waited forever to see anyone.  Not even a nurse came in for ages.  At least we had this creepy crab to look at on the wall the whole time {every room in the children's hospital has a "sea" theme}.  At least it wasn't the creepy seahorse.

When we finally saw someone, we went through the whole long story of what was going on, but how we really didn't know what was wrong.  It is so incredibly difficult when your child cannot communicate in any way what is wrong or where it hurts.  We just knew she wasn't "right".  Even her oxygenation was poor.  She didn't look "herself".  There were a number of things that were just "off".  While we weren't thinking in terms of her having a fracture, we did make sure that they knew that her right leg definitely seemed to be bothering her.  I thought her leg looked a little puffy just above the knee, but I couldn't say for sure - it's been a little puffy since the big splint came off a couple weeks back.  I asked the nurse about that bruise on her knee.  We weren't sure about it.  She had a similar bruise with the tibia fracture she had last month {sorry the picture is fuzzy}.  And do you see the way she's holding her foot??  She's been doing that for the past couple weeks or so since she got the big splint removed.  Can you say painful??  Go ahead and try - flex your right foot up towards your leg, then turn your foot out to the right, now roll down on the inside of your ankle and you're just about there.  It has been fairly permanently in that position and we've already had her PT and the orthotist look at it and have a special foot splint made {we haven't gotten it yet - she will have that and a soft knee immobilizer soon}.

In the process of trying to figure out what's going on, a chest x-ray was ordered as well as x-rays of her leg from hip to toe.  Chest x-ray because she was sounding junkier and was requiring more oxygen than normal.  A while later we got partial results of the leg x-ray.  The doctor said that the radiologist thought it looked like a possible fracture, but that it may have been there on the last x-ray.  I'm pretty sure it would have been hard to overlook that given how extensive Peyton's case was reviewed back in February!  Unless they were referring to the x-ray when she went to the Orthopedist for follow-up when she had the splint removed.  Regardless, the radiologist wanted to defer to someone higher up the chain.  We waited a while longer.  Sure enough, Peyton has a brand new fracture.  This time it is a distal femur fracture.  This means that the break is straight across the femur, right above the knee.  Remember when she had the tibia fracture, it was straight across below the knee.  It's the same leg.  When the Orthopedist saw her last month when she was in the hospital, after describing the poor condition of her bones, he said they typically see these fractures either right above or right below the knee.  Well, now Peyton has the full set.  

So, it was back into a big splint like she was in before.  This time, however, since we had shown the Orthopedist the condition her foot was in, he had to get it straightened out before splinting her.  Inside the splint, just as before, there is a strip of plaster that runs down the back of her leg, behind the knee, and down under her foot, right to the toes.  Unlike last time, there is also a strip of plaster that goes under her foot and up the sides of her ankle.  It goes up just a little ways - not all the way up to the knee.  This will give that ankle a bit more stability in the splint.  Here are a few pictures showing the process.  Her leg/foot is wrapped in this soft cotton.  There's a whole process behind how it's done, especially at the front of the ankle.  It's neat to watch them doing it.  It's done so fast!  The plaster is applied and more cotton put on.  Then it's wrapped in a bandage.  This splint goes up a little higher on the thigh than the other one did because the break is above the knee.

There was pretty much nothing about this process that Peyton enjoyed.  First of all, she'd had her leg drawn up to her body all day and moving it in the slightest caused her a lot of pain, so this was excruciating.  In fact, during the process, I saw her face get pale.  Well, you can imagine.  I've never broken anything, but in my head I was trying to imagine what it must feel like, and how much of a shock to the system what she was going through must be.  I'm sure she must have been experiencing a bit of shock.  The picture below was taken in the ER after the splint was done.  She doesn't look happy at all.

We were given the option of going home or staying to get her pain under control.  We were told how that would go and we opted to do that.  By the time we got to this morning, what I thought was going to happen and what did happen were not the same.  She would have had more pain meds given at home.  I spoke with Ortho this morning and that was all fixed pretty quickly.

Peyton's heart rate was really high this morning when I woke up - in the 150s/160s.  Her blood pressure was also high and she had a 99.1 temp.  For her, that's high since she normally runs in the mid 96s to 97s.  She wasn't herself.  By mid-morning she was sounding really junky.  I actually had them call Respiratory Therapy back in between treatments because she sounded so bad.  She also seemed to be working harder to breathe.  This is all typical for one of her respiratory illnesses.  The RT agreed this was not typical Peyton.  Peyton was supposed to go home today, but there was no way I was going to bring her home the way she was.  I asked about having her seen by the gen peds team just to see what was going on.

By this afternoon, Peyton was transferred from the Ortho service to Gen Peds.  She has a virus.  She had something even before we got to the hospital.  We knew that, but didn't think she was really sick.  But it came on pretty quickly this morning.  She's also dehydrated.  She is going to be kept here til they get everything under control.  The high heart rate could be from pain {surely it is!}, from illness, from dehydration, etc.  They are running some labs to see if they can figure out what's going on.  We'll be here longer than planned, but we need to get her back to her base line before we can go home.

I contacted Endocrinology {the doctor we saw on Monday}.  He wanted to be contacted if Peyton should develop another fracture.  I didn't think it would be so soon!  Her pamidronate infusions will have to wait 6-8 weeks from now {they weren't scheduled to start immediately anyway, so that's ok}. He contacted the Geneticist in Boston today to discuss this with him.

I contacted Dr. T in Boston {Genetics} myself and he contacted me this afternoon.  He's speaking with people up there as well and mentioned his discussions with Dr. R in Endocrinology here.  The game plan is still to get her up to Boston either the week of April 29 {mine and Ron's anniversary!} or May 6.  Not sure yet.  He is going to have further discussions with people up there on how best to transport her given her high risk for fractures and her oxygen requirement.  Lots of good stuff to look forward to!

I wasn't planning on having a huge update post like this, but here we are.  Back in the hospital...again.  And, again, we so appreciate your prayers and support.  Thank you!

A Scary, Eventful Day

Yes, it has been quite the eventful day - and not in a good way.  I will start by saying that we still have no answers as to what is going on.

This morning it was just more of what I described yesterday.  Within a couple hours, she was having problems holding her oxygen level and needed oxygen.  It was still a little low and her heart rate was also high.  No fever to start the day.  Within a few hours, she began developing weird bruises just out of nowhere.  All the while, she was extremely lethargic.

I called for the nurse.  It wasn't her own who came in, but that nurse got Peyton's nurse.  She called the doctor.  The doctor came and he left and came back.  Then they did a MET call (think emergency response type of call minus crash carts and other scary things).  Soon we had 15-20 nurses, doctors, respiratory therapists descend onto her room and at any point in time there were 4-6 people immediately at her bedside.  Respiratory began doing treatments.  They had an ambu-bag ready.  She wasn't ventilating well.  Her coloring was poor.  Her respiratory status was vastly different from where it was not long before.

It wasn't scary in the "she stopped breathing" sense that we had a few weeks back.  But it was pretty darned scary having that many people come in all at once and take over the room.  I was standing towards the back and there was a nurse in the room who had just come in to talk with me (she handles pain management and palliative stuff). She just happened to be in the room when it all happened, so she was an incredible support during everything.  One doctor came in and asked questions that I couldn't even answer because I was too emotional.  She answered for me.  

Long story short, after a debate between sending her to the PICU vs the PICU step down unit, the PICU won out and we were sent there.  It's an open unit with curtains between beds.  It's loud.  Lots of activity.  Lots of beeping equipment.  Alarms going off.  Just busy.  Chairs but nowhere to sleep in here.  No food or drinks allowed.

Prior to the events I described, she had been sent for a stat shunt series.  She has a shunt because of hydrocephalus.  There was some concern over everything being shunt related.  The series is basically a set of regular xrays to look at the shunt and it's tubing that goes into her abdomen.  It was shortly after returning to the room that everything happened.

A stat head CT was also ordered.  She had that a while after being brought up to the PICU.  It was well-timed as Ron and Moira had arrived and he had food for me.  I wasn't allowed to go for the CT so I sat with them and waited.  Everything looked ok on all that imaging, but they ordered for her shunt to be tapped.  I guess you could say it' like a spinal tap but they tap into her shunt in her head.  They are able to check flow and pressure when they do this, so all that looked good.  They took samples of fluid.  So far the numbers are all looking good with nothing pointing towards a bacterial meningitis.  

That said...we still don't have a clue what's going on.  Everything keeps coming back negative.

Please keep Peyton in your prayers.  Today was pretty scary.

Still In the Hospital

We got up to a room around 1:15 or so this morning.  It wasn't until about 3:30 that the activity in and out of the room died down enough to get some rest.  I woke up somewhere between 6:30 and 7:00.  Can't say those few hours were very restful, but I am grateful for a little bit of sleep.

Peyton's feeds were resumed sometime during the night, which is good because they'd been stopped around 6:30pm yesterday.  She is receiving the IV antibiotics through the regular old fashioned IV line that, thankfully, is STILL working.  She has a horrible history with having IV's placed and staying good!

She was to have a port study done today in interventional radiology.  It was done around 1:00pm or so today.  We were taken to the heart and vascular center - not just peds radiology where I had assumed we'd be going.  We've been to this place once before when she had a bronchoscopy a while back.  It is like the arctic down there!!  The "suites" are like an OR but they have all the radiology equipment in them.  I suppose they do some procedures down there that require it to be more of an OR type setting.  I snagged a pic of the room on my cell phone after the study was over.  I actually wasn't allowed to stay, so  was escorted to the waiting area and waited a brief time.  Long enough to flip through a May 2012 issue of People magazine and discover just how haggard some of the big time movie stars have gotten to look lately.  And Robin Gibb was still alive, per this issue (he actually did pass away 5/20/12, obviously after the issue ran).

Anyway...

They came and got me when it was over.  Basically, they access the port with a needle (like what we'd use normally for accessing the port) and ran a dye through it.  First of all, they use "live" xray to guide them so they are 100% sure of where the needle is going - making sure everything is properly positioned.  Then they run the dye to see where it goes.  Everything went well and they were able to leave her accessed with the needle.  Now, she still has a lot of puffiness from the whole issue of the meds not going into the port, but rather under her skin.  That will eventually clear up as the body absorbs everything.  When we got back up to her room, the nurse started up her IV (regular IV, not the port), but her next dose of the antibiotics will be run through the port.

Peyton's surgeon just came to see us.  He checked her out and felt around the port to feel how it felt.  Does that make sense??  To see how well-in-place it was, I guess.  He explained to me that the port itself....

wait...let me back up.

Go here: http://en.wikipedia.org/wiki/Port_(medical)

Look at the top picture on the right.  The round metal thing is the "port".  THAT is what is permanently placed in Peyton's chest.  It is connected to a catheter that runs through one of the veins or arteries (not sure which) that goes to the heart.  Now the piece that you see poking down towards the round port is the needle.  Imagine fatty tissue/skin between the port and the top of the needle.  With a port, as you see, the needle is inserted straight down at a 90 degree angle to the plastic top of the needle, whereas a regular old IV line is just one straight piece.  See the difference??  The needle goes into a thick rubbery type stopper piece.  Once the needle's in place, it's firm.  It shouldn't fall out.  It's in place.  It would take a pretty good movement or bump to knock it out.  OH, and the back side of the port is metal.  The needle cannot go through it on the back end

Ok, got it??  Port lesson complete.  If you have any questions, I can try to answer!!

Ok, so the surgeon was explaining to me that the port itself is sutured in place with non-absorbable sutures - it's sutured to the muscle.  But sometimes it can come loose or be brought up somehow.  He also said that in children (she would have been 3 when she got the port) he had been using a smaller low-profile port.  He's going to look up her records to see if that's what was used, but by feeling around, he thought it probably was.  With growth (she's now 6), it may be that the smaller low-profile option isn't the best option for her now.  He said that about half the time when they bring people in to interventional radiology with this problem, it winds up as our situation did.  The other half, there is something wrong that requires surgical intervention.   He basically gave no guarantee that this wouldn't happen again (and I totally get that!) but he thought for now we'll leave things the way they are but she will probably have to be "upsized" to the non-low profile port.

So, for now, we are still at the hospital. I am sure they want to get her meds running through the port and make sure that everything is running smoothly with no additional problems.  Otherwise, she's had some REALLY thick secretions today causing her to gag and throw up a couple times.  The respiratory therapist was concerned about the secretions because the suction machine actually couldn't keep up with it!

It's after 4:30 now.  Nothing has been mentioned about leaving, so I'm confident we're in for another night.  Besides, the respiratory therapist was asking the schedule for her to go on bi-pap and they brought in a pulse ox monitor.

Ok...scratch that...the nurse just game in.  The doctor wrote discharge orders, so we'll be going home tonight!

Still at MUSC

The fun continues at the hospital.  Peyton's doing alright.  No fevers, which is good.  However, she continues to sound really junky.  This morning she had tons of really thick dark yellow secretions that she was coughing up.  Coughing up is a good thing though.  The respiratory therapist was in shortly after that and she sounded much better after all her treatments.

The doctor was in this morning and it seems like they are talking about this being pulmonary edema.  They are going to cut back on her IV fluids and free water.  Hopefully they won't have to give her any special meds for the edema.  She is still on a couple different IV antibiotics as they are treating as if there is a pneumonia.

So far we are doing ok in our tiny little space here.  Keep up the prayers that Peyton improves soon!  Thanks.

Hospital Update

Good morning! Last night Peyton still wasn't eating, so she had a feeding tube inserted in order to get some calories into her. She started getting treatments from the respiratory tech. as well as her breathing treatments. Sarah said that Peyton had been awake a little bit more, but mostly just wanted to sleep.

I just spoke very briefly with Sarah. Dr. Haney was in to see Peyton and thought that she sounded a bit better today. She cut back on her IV a bit and is making up the difference with her tube feedings. They are going to watch her all day again. There is a slight possibility that she may be able to go home tonight. It will all depend on how responsive she is today and what Dr. Haney thinks when she does rounds after office hours. We have to have her in tip top shape for her 1st birthday on the 15th!

Miss Moira has gone off to spend the weekend in Austin with Mimi and Aunt Jayne. I know she will have a great time there and will keep the ladies hopping!

Thanks again for all the prayers, journal entries and phone calls! Your support and concern is really appreciated.

Anne ~ Granny

Another Hospital Update

Peyton still isn't eating this afternoon. She has a lot of congestion so the resp. therapist will be coming to suction her out. Her throat is quite irritated. It is possible that she also has conjunctivitis - an ophthalmologist will be checking her out later. Dr. Haney wants to keep her for another night since she isn't eating. They are going to give her another chance to eat later on. If she doesn't take her nourishment then she will have to have a feeding tube inserted again. She just can't afford to be losing any weight.

That is all the news for now. Sarah sounded pretty tired, but they are all hanging in there.

Anne ~ Granny