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!

Genetics, Neuro and Seizures, Oh My!

Where to start??  Lots going on.

I have been waiting on a call or email from Peyton's Neurologist (Dr. K) here at MUSC.  The Geneticist  (Dr. T) in Boston had contacted him regarding the results from the lumbar puncture that was done in February.  He had some questions that he wanted input from a neurologist on, so he emailed the doctor here and then Dr. K was to contact me.  Well, I hadn't heard anything, so I made contacted with both doctors.  Dr. T was wanting Dr. K to talk to me so asked that I give him a few more days and if I didn't hear back, let him know.  I didn't, so I did.  Still nothing.  Meanwhile, I don't know what the results were myself!

On Sunday night, Dr. T called me.  Without going into great detail {him with me}, he said that some of her neurotransmitters were low and he wanted Dr. K's input on starting her on some sort of neurotransmitter supplementation.  Who knew there was such a thing??  I still don't know what the end result of that will be.  However, as we talked, it was decided that we really need to bring Peyton back up to Boston Children's Hospital.  There are several specialists that he would like for her to see as well as some tests done {probably including the skin biopsy which, by the sounds of it, should have already been done...but hasn't been}.  She will need to see Dr. T.  He would also like her to see Dr. M, who is the Neurologist Peyton saw when we were in Boston last August.  Additionally, he would like her to see one of two doctors who are experts in both genetics and endocrinology with an interest in skeletal malformations.  He felt like they might be able to offer more insight in terms of treatment.  He also said, ideally, he would like for her to have a hearing test and for her to see an Ophthalmologist who has a special interest in genetics of eye disorders.  That's a lot of specialists!

Here's the thing.  He wants to see her in about a month and a half {if that}.  Definitely before June.  Likely the week of May 6th.  He is having their secretary work on scheduling, so we should know something in the next few days.

Then there's the logistics of it all.  HOW??  Given Peyton's current condition it's going to be a lot harder for her to travel.  Can she travel by car??  Should she travel by air??  How does that get paid for if it's a medical flight??  Is it a charitable cause??  Can we line up her Medicaid here to cover all out-of-state travel costs??  There is a lot of leg work to be done in a very short amount of time.  If she takes a medical flight, chances are only one escort can go.  Well, I cannot handle this trip without Ron being with me.  Yes, I can certainly handle Peyton, but if I expect to eat, or if laundry needs to be done in that week, well, I've got no help!  I'm not saying I need Ron there to be my errand boy!!  Obviously if he is with me, then the burden of caring for Peyton is shared between two people!  If I fly with Peyton, then he's got to drive up, but then he's got to leave before us and then how do I get her and all her stuff to the airport - cause there's going to be a ton of stuff to bring.  Remember last August when we went to Boston and there was so much stuff to bring for her that we couldn't even take our own vehicle??  Yeah, that.  On the other hand, if we drive, then it's obviously a longer and harder trip for Peyton, but at least we're all together.  But she requires oxygen all the time, so when do we do about that?  If we bring oxygen tanks as we've done in the past, we'd need so many because of the rate she's at that there wouldn't even be enough room in our car for all of the tanks, much less everything else we'd have to bring!  I did inquire into a portable oxygen concentrator for traveling.  I need the specific dates of travel ASAP as they only have 3 of these units.  This would replace the need for all those tanks as well as our own larger oxygen concentrator which we'd have to bring for use in the hotels.  She'd need oxygen when out at appointments as well, so we could use it for that too.  Trust me when I say that planning this trip to Boston is more of a logistical nightmare than the last time.  She wasn't on oxygen all the time last time.

So, the Boston trip looks like it will happen - some how, some way.  Please say some prayers that we get everything worked out in the best possible way for Peyton.  Please pray that everything comes together for us to manage this trip.  The Lord knows all our needs for this to happen.

Peyton saw the Endocrinologist {Dr. P} yesterday.  This was the first visit to him since she was hospitalized with the fractures in February.  He would like for her to start on a drug therapy, which would be a monthly IV infusion done in the hospital.  It would be three days in a row once a month.  When he mentioned the drug, Pamidronate, I got a very weird feeling about it as it is one of the drugs my mother received via IV infusion during her cancer treatment.  It took me a moment, but I remembered it was not the chemo drug {and why would they one to Peyton anyway??} but, rather, a drug to help promote bone density.  I wish my mom was here to ask her all about that.  Interesting that Peyton may wind up on the same drug.  We aren't scheduled to start that yet, as the Endocrinologist spoke with Dr. T in Boston yesterday afternoon and there may be some tests and possible other treatment options to try before the Pamidronate.  Dr. P definitely wants for everyone involved to be on the same page before starting anything.  He said it isn't urgent that we get her started on this so if it waits until after our Boston trip, that is ok.

Then we got to today.  Between October 7 - November 5, 2009, Peyton had several "grand mal" type seizures, the first one being over 45 minutes in length {911 was called and she went via ambulance to the hospital}.  Since that time, she has been on seizure meds.  She is currently at the maximum dose of what she is on.  It was recently increased to the current level after we talked to the Neurologist {Dr. K} about her having "focal" seizures.  That is, brief periods where she simply stares off and is unable to focus.  She zones out for 10-30 seconds and then comes back like nothing happened.  Those happen so frequently that we almost don't even notice them.

This morning Ron and I ran a couple errands before I dropped him off at work.  When I got home, Peyton was very irritable.  The nurse described what had happened prior to the irritability.  She said that it seemed like seizure activity, but it was all in her right leg and foot.  When she described what she saw, it hit me that I have seen this exact same thing at least twice in the past 24 hours or so.  She called and was able to speak directly with Dr. K {neuro}.  She described what happened and he agreed that it was likely seizure activity.  She is already on the max dose of seizure meds, so she can't take more.  And he cannot give her another med to take along with this one because it could suppress her respiratory system.  That I know of, this has only happened 3 times in the past 24 hours or so, but it may have happened before that.  But it has only just started happening, so we don't know if this is a temporary thing that will pass quickly or if it's a sign of bigger things to come.  Of course I have emailed Dr. T in Boston to give him this important update to her condition.  I'm sad for her that this is happening.  I have this image in my head of something like what you'd see on a construction site - a sign saying "3 years 4.5 months accident free" {or in this case, seizure free}, erasing the numbers and resetting to 0 days.

So, that is where we are at right now.  I think that's enough.  Don't you??  In case you couldn't guess, we could use prayers in a lot of areas!  We thank you and appreciate your support!