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.

Bones

If I could narrow down the list of things that are very difficult on this journey, I would have to say that the worst feeling in the world {as a parent} is watching your child suffer - whether through illness or pain.  Nothing compares to the horrible feeling of watching your child suffer, screaming in pain and watching her in agony while being completely and totally incapable of verbalizing through words.  Nothing.  I honestly am not sure who has cried more - me or her.

right leg - note swelling and bruising of knee and leg

We came in to the hospital through the ER on Sunday, unsure of the cause of the swelling in her right leg and left arm.  Fortunately, one of the residents that night have the presence of mind to order an x-ray on her leg, as that revealed the startling news I shared yesterday - that Peyton had a seriously fractured tibia.  They ultimately ordered a skeletal survey rather than just an xray of her arm.  Her foot xray revealed what could be a metatarsal fracture.  However, it wasn't clear - it could actually just be some sort of defect or deformity.  Whatever the case, it is there.

The skeletal survey was done yesterday afternoon.  It is essentially a series of xrays examining every segment of the body from head to toe.  If the fractured tibia wasn't startling enough, this survey also revealed a fracture of her left distal radius.  Left wrist.  Ok, I know she was experiencing pain of her right leg, which I thought was coming from the chronic hip pain.  While that may be part of it, it was certainly because of the tibia fracture.  But I can tell you for certain that I do not recall her ever {how many ways can I stress "never ever ever" without sounding like a Taylor Swift song??} having any pain in her arm or wrist.  Ever.

The Orthopedist came to see Peyton right before her skeletal survey.  Very shortly after she was back in her room, another was back in the room with someone whose title I forget but I'll call him the "master plasterer". He's the splinting and casting guy.  Peyton's left arm and right leg have been splinted now.  They will stay this way for three weeks.  We can't get them wet.  She can't be bathed.  Only if we see her fingers or toes turning color can we rip everything off for circulation and rewrap.  I don't think I'd like to be going there!  Basically, there is cotton wrapped around, followed by a piece of something dipped in plaster which is affixed to the appropriate spots {bottom of foot up to back of leg just above knee, and back of arm to the fingers} to stabilize everything.  Then it's all wrapped in cotton again and then the outer wrapping.  In a few weeks, we will see Ortho again and they will assess, but probably will cast her leg and arm at that time.  If that's the case, I'll have to figure out how we can do a virtual cast signing for her!

Seriously...how comfortable does that look??  {insert sarcasm here}  Poor baby.  I feel horrible for her.

The Orthopedist came back to see us after this was done.  In a nutshell, her bones are really bad.  She hasn't been tested for bone density yet, but her bones {via xray} look really bad.  Really thin.  The doctor assured me that what happened is not unusual.  She's got multiple special needs.  She's on seizure meds.  She's tube fed.  She has this severe copper deficiency.  She doesn't stand or walk or do things that would promote bone development.  She has many many strikes against her when it comes to bone development.  This is not unusual or even unexpected.  In addition to these fractures, she also has two vertebral compression fractures at T2 and L7.  He said that we needn't feel guilty about any of this.  It just happened.  He said therapy could have done it.  Putting her pants or shirt on or taking them off could have done it.  Whacking her hand on her crib rail could have done it.  However and whenever it happened, it didn't take much effort.  That said, he indicated that this would not be the last time this happens.  And when it does, he said please don't feel guilty - it's not our fault.

All medical evidence seems to be indicating that it's related to her lack of bone development.  However, she came in as a child with multiple unexplained fractures.  If all of the above hasn't caused enough stress.  Yeah.  I'm not going there right now.

On top of all of this, her g tube clogged last night.  She has s g-j tube mickey button.  It's all in one.  The feeds go into the j port and they go into her intestines.  Meds go into the g port on the side and those go into her stomach.  The g is clogged, so she couldn't get her meds.  The doctors gave clearance for them to give them through the j port, but meds don't absorb as well when not in the stomach, so pain is a bigger issue this morning.  It's not fixed yet.  They are getting with Interventional Radiology.  I hope it doesn't have to be changed out.  She just had it changed it on Friday!  They are supposed to be good for 10-12 weeks.  Clearly we're not that far out yet!

Waiting on that to happen today.  Endocrinology is supposed to come see her as well regarding the bone issue.  They'll likely do a bone density test.

I will report back later, but in the meantime, would appreciate your prayers for Peyton's pain.  I am curious/concerned about how well her healing will go since nothing else seems to be done normally.  I am also worried about future injuries and missing them or just the pain that they will put her in.  This is obviously a very new and challenging situation we are being thrust into.  Pray for all of us!

Thanks!!

Home Again

Peyton was able to come home from the hospital yesterday {Friday}.  There wasn't really a whole lot more that could be done at that point other than to make sure that she got her g-j tube changed out.  This is something that has to be done every 10 weeks.  She was due to have it changed next week, but we were able to have this done before leaving the hospital.  It was just easier to do it while we were already there.  She was discharged from the unit and then we went to radiology to have her tube changed. From there, we went home.

She's home, armed with a new pain medication {Naproxen} in addition to an increase in her Neurontin doses and her usual Oxycodone dose.  I'm not sure why her pain is so much worse these past few days, but it is intense and she needs to get that under control.  I can't imagine the pain.

Peyton has done well at home so far.  I've managed to get her on bipap tonight.  She really needs to be using it.  It's sometimes difficult to get her to tolerate the mask, but it really is for the best that she wear it.  She's getting oxygen in addition to the bipap.  I think she has finally settled for the night, but it was a little bit of a rocky start.  Hopefully she will sleep through the night.

Her feeding schedule has changed a bit.  The nutritionist in the hospital recommended an increase in the volume of Pediasure she gets each day.  We were on a good 24 hour schedule, but since she came home, the time one feed ends and the next begins is a little later than I'd like.  You hang a bag and it runs for 24 hours.  We had been changing it around 8 or 9am but now it's late in the evening, so I'm debating staying up late versus setting an alarm to get myself up to change the feed.  

I am fairly exhausted right now.  I could barely move off the couch today.  Unfortunately, people needed clothes, so I eventually had to do some laundry.  I don't know that there is a way for you to fully appreciate the level of emotional and physical exhaustion I am feeling right now.  I've you are or have ever been a caregiver for a sick family member, you probably have an idea.  We have our home nursing, so that is good.

Hopefully Peyton's pain gets under control soon so that she can at least be comfortable again.  I don't anticipate her need for oxygen while she's awake to change at this point.  I think that this is a new "normal' for her.  I would like to see that change, but only time will tell.  Today was a decent day, though.  All things being what they are - it was a decent day.  

Happy New Year!

As 2012 draws to a close, I wanted to give you a little update on how Peyton is doing.

The past few weeks have been very difficult for her.  She has been suffering increasingly intense levels of pain with her hip dysplasia.  Her left hip, I can only imagine, is unbearably painful at times.  She is on Neurontin three times a day and Oxycodone for breakthrough pain.  Even with having the dosage of the Neurontin increased within the past week or two, she is still in incredible pain.  Sitting in her wheelchair can be quite painful for her.  When she is laying down, she draws her left leg up towards her body and then across and over to the right.  It's dislocated when it's in that position, yet it seems like that is her position of choice.  There must be some degree of comfort in that position.  However, it makes diaper and clothing changes very difficult.  She has been in her "Rhino brace" {note: if you click on that link, it's the "cruiser" that she is in} far more frequently, including while she is sleeping.  It isn't going to fix her hip dysplasia.  It is meant for hopefully providing some level of comfort for her.  

It is absolutely heartbreaking to see your child in so much pain when you know that you are doing everything you can, but it's not enough.  If only she could tell me what she was going through.  Having a non-verbal child is incredibly challenging as it is, but when the child is sick or in pain, it's worse because they can't tell you exactly what is wrong or what helps or hurts.  I just want to fix this and make her pain go away!

On top of this, for the past few days, Peyton has been having difficulty maintaining her oxygen levels.  She is on a monitor constantly, so we are always aware of what percentage her oxygen level is at.  It should be over 94% but has been in the low 90s and even dipping into the 80s.  To help with that, she has spent the last three or four days on oxygen via nasal canula.  Even at that, she's still having issues.  We have had to bump up the amount of oxygen she gets from about 1.5 liters to 3 liters or so, just to get her where she should be.  We aren't sure why this is happening.  She doesn't appear to be getting sick.

As we wrap up the year, we find ourselves dealing with all of Peyton's ongoing issues as well as increased levels of concern where her pain and oxygenation are concerned.  2012 has been a very difficult year for Peyton.  It feels like the bad has outweighed the good this year, even though I try to maintain a positive outlook as much as I can.  This year has brought some new {and serious} concerns that we will take with us into the coming year.  

If you wouldn't mind offering up some prayers for Peyton, we would greatly appreciate it!

As you know, this blog is under construction, so I am adding posts from CaringBridge here and there - sometimes multiple posts in a day.  Please bear with me if you are receiving email notifications of new posts.  Chances are it is old stuff being added, but I'd hate for you to miss something new, like this post!

I hope you had a wonderful Christmas.  Best wishes to all of you for a Happy New Year!

Not Much News

Just a quick update on Peyton.  She is still in the hospital.  She is still doing alright.  While she is in, she is having a 24 hour urine test which is something that the geneticist here wanted done for some genetics testing.  It's not related to why she came into the hospital, but this is clearly not something we could do at home, so I thought I would ask about getting that taken care of as long as we are here.  That alone will keep us here til late this afternoon.  However, I'm not sure if she'll go home today or not.

Peyton has been pretty sleepy since she's been in but she's also been pretty irritable during the times when she's awake.  She really isn't ever like this - not even in the hospital.  Now, with the hip pain she's displayed extreme irritability, but she's getting her meds for that.  I believe that this is something different.

We still don't know if what happened was a respiratory or neurological problem.  I could see it being either.

There really isn't a whole lot of information.  Sorry!  We're still here - just hanging out in the hospital, unable to be working on our move until we leave!  Crazy.

Boston - Day 1

We made it safe and sound to Boston!  We took the trip over 2 days.  We spent the evening on Saturday with my friend Kelly in Virginia.  We got off to a little later start on Sunday (but that's ok!!).  Our Garmin has 2009 maps and is clearly now needing updated.  It took us a couple ways that clearly were not the quickest option so we probably lost a little time that way.  We had a LOT of heavy traffic both days, but only rain on Saturday (it was pretty bad in some places in North Carolina).  We drove through Washington, DC (which we could have avoided, but was fun to see anyway).  When we approached NY City, we decided to hop off and head into Manhattan for a "quick" tour.  It was fun, again, but lost time there.  Then the Garmin took us another way that was clearly not the fastest so we lost a little more time.  That way also had us come upon a very bad motorcycle wreck so we lost more time.  Not sure what happened but FDNY and NYPD were on the scene.  Other motorcyclists were off their bikes on the side and were crying and (I didn't see) the person was in the ambulance but was not being attended too.  Could not have been a good outcome and it was quite sad.  Once we got past that, we dealt with more heavy traffic along the way.  $52 in tolls later (thank you NJ and NY!!) we were into Connecticut.  We decided against the fastest route which would eventually have us on yet another toll road and just kept on going up I 95 towards Boston, where the Garmin dumped us into regular city traffic well before it was probably warranted.  Anyway, we made it in around 10:40pm.  Safe and sound but tired!

Today was Day 1 at Children's Hospital Boston. We saw two orthopedic specialists.  The first dealt with lower extremities, the second her upper extremities.

The second doctor (upper extremities) really didn't have much to offer.  Basically any surgical option would not be advisable for her because of her overall health but he clearly stated that any surgery to fix those shoulders would be counter productive.  He was not optimistic that it would fix anything and he said the failure rate, especially for someone like Peyton is very high.  In a nutshell, he stated that he tries to weigh hurt vs harm.  He did think that she probably experiences some pain as her shoulders pop in and out.  Sometimes not as we've seen, but when it gets stuck out of socket and we have a little more difficulty, it probably causes some issues with the muscle and then she winds up in more pain.  Pain management is the key but he said nothing that is happening with her shoulders is going to cause "harm" to her.  Keep on doing whatever we're doing therapy-wise.  He said we're not going to harm her.  He also said that there is no bracing that would help.  So, that wasn't the most exciting visit but he was very nice and gave honest opinions without being condescending!  If this was the ONLY appointment we were here for, I'd be a little unhappy but as it is part of a group of specialists she's seeing, it was good for him to weigh in.

The first doctor was lower extremities.  She had some concern about the possibility of pain issues arising in her neck - the spine being pinched somewhere.  Peyton had a series of neck x-rays done and they did not show anything, so that is good.  On examination, she did note some scoliosis.  I also mentioned in one of the doctor notes from MUSC they noted (on a chest xray) some compression at T8 (I think it was T8).  She said given her overall condition, these things are not surprising.  She didn't say anything about what to do about those - I think it is what it is unfortunately.  As far as her hip pain, she felt that it was clearly related to the hip popping in and out.  But she said there may be some neurological component there as well.  She talked extensively about what our long-term plan is for Peyton - what her plan of care is (i.e. DNR, life expectancy, etc).  Basically, what are we looking for for her - a surgical solution or comfort?  Of course I told her we want to do what helps her but if that is pain management and comfort, then that is fine.  She was really nice - not overly personable - but nice enough and definitely explained things thoroughly.  She described the surgical procedure that would be recommended - basically if you do one hip, you have to do both - the thigh bone is shortened and then re-angled into the hip socket, reshaping the pelvis, etc.  She said it is a high blood loss surgery and is a pretty major deal.  She wants all the specialists we are seeing to weigh in but she feels (as do we) that the effects of the surgery itself might be worse than what she's dealing with now.  Pain level now vs. post-surgery/recovery.  Will it work and for how long?  What benefit is there really for her long term?  I think based on the fact that there are other surgeries she theoretically could have (i.e. re-do her nissen fundoplication which is not working properly now, and the potential for mitral valve repair/replacement - cardiology said she would likely not survive that surgery if it became necessary...it's not TODAY...but could be one day)...those surgeries aren't going to be done, so it would likely be that this surgery would not even be an option for her because of her overall health.  All that said, she said she could DEFINITELY benefit from a Rhino brace.  (See google images here.  Peyton had one of these as an infant.)  She said when she's drawing up that leg (which she frequently does), she's putting it out of joint and it's staying there.  She said that the brace plus the oxycodone we're currently doing should be sufficient to help keep her comfortable....if comfort is what we are trying to achieve for her right now.  As to her stander, we can use it, but more in a sitting position.  Standing in it will clearly depend on her level of pain.  I think she is good with all therapies resuming but she did not offer any specific things that could be done.

So at the end of the day, do we have any real answers and an amazing solution to a big problem?  No.  This being the day with the two appointments that were the main reason for us being here, was it worth the trip considering all I just said??  Yes.  The doctor in Charleston didn't even offer the Rhino brace.  He doesn't think there's a problem.  He didn't describe the surgery at all.  It was good to hear everything she said even if there's no definitive solution to the problem.  I am glad we came.

Tomorrow Peyton will see the Pulmonary doctor.  This is good especially with her still dealing with the ongoing aspiration pneumonia.  She's still dealing with the IV meds for over a little over a week yet.  She isn't any better or worse at the moment.  We don't have any issues with the Pulmonary clinic in Charleston, but since we're here, we just wanted to see what they'd have to say about her overall respiratory health - just to see if there is anything they would add or change or recommend or test for, etc.

Ron and Moira walked down to Fenway Park this afternoon for a little look see.  Peyton and I stayed behind and napped.  I'm not sure what all we will do while we're here.  It is difficult getting out with Peyton considering all we have to bring every time we head out the door.  But I hope to get out and see some sites.

Please continue praying for Peyton's health to improve.  As I said, she's no better even while continuing on these two IV antibiotics.  But she's no worse, so I guess that's good.

OH...and as for Children's Hospital Boston, it's an amazing place.  It's huge.  Ron said when you walk in, it's like a train station.  There's just so many people everywhere.  I'll have to get some pictures.  While in the waiting room, I was really impressed with the volunteers helping kids to feel at home.  There are tables with coloring pages and crayons/markers laid out in every waiting room we saw.  They had clown comedians in the waiting room at one point.  They just did a really great job of making people feel at ease.  Kudos to CHB!

Another Trip to the ER

We've been doing pretty well for a bit but Peyton wound up at the ER no Saturday.  She's been having some respiratory issues.  It's been a while, right?  She was also having issues with her g-j tube as well as a lot of pain that no one seems capable of dealing with.  I wrote a blog post on my blog about how thing went down in the ER.  You can read it here:

http://fontenblog.blogspot.com/2012/07/how-i-spent-my-saturday.html

Enjoy your holiday weekend!

Time For Another Opinion

I have been under considerable stress over the past few weeks.  It began with one of our nurses leaving.  She did maybe up to 16ish hours a week.  We were able to get a replacement in for her, but before the dust had settled, the nurse that does the bulk of the hours (up to 40 a week) decided that we were not consistent enough with our schedule, so was moving on to a new patient that the agency was bringing in.  Despite the fact that our schedule was made to suit her and still cover our needs, it wasn't good enough, so she is pretty well out of the picture now.  That said, now we have to get a nurse to fill in most of our hours.  A nurse who is an LPN oriented this week (Peyton's supposed to have an RN, but this nurse is allegedly approved for complex cases).  I'm not 100% sold on her, but got the impression we should give her a try - perhaps there are no other nurses available at the moment.  Still, I'd prefer to have an RN, particularly if she's going to do most of our hours!  The first nurse who left is actually able to pick up a few hours again, so that's great.  One of our former nurses is also coming back to do a few shifts a week, so that's good too.  All this is good, but this means 4 nurses in and out of here, which isn't ideal, but what can you do.  

I was so excited about getting the one nurse back who had left a few weeks ago, even if it's just for a shift a week.  Also, the nurse who came on board after that one left - I'm really excited about having her here as well.  Both of them go to our church!  Both are really awesome ladies.

Nursing drama aside, today I took Peyton to the orthopedist.  She's had a lot more pain lately.  I know things are hurting her and I know she is getting worse from an orthopedic perspective, but I don't know what to do.  From the moment the doctor entered the room til the moment he left, he was nothing but useless.  Condescending even.  He can't do anything and made no bones about it.  He suggested it's all a neurological issue and we need to get her in to see her neurologist and maybe they can prescribe something to keep her from moving so much.  Huh????  Drugs aside, he didn't even offer to have his office call neuro to see if we could get in sooner than what we're currently scheduled for.  We are having to give her motrin/tylenol every day - sometimes multiple times a day - for pain.  This did not use to be the case.  He wouldn't even offer a prescription for something different for pain.  Nothing.  I was furious and I was in tears by the time he left the room.

By the time we got home, I had already texted Ron to update him and we decided we need to move forward on something we discussed about a month ago.  We have decided it is time to get a second opinion.  Unfortunately this means traveling, which is really not something that we would even consider under any other circumstances right now.  We decided a while back to scope out the best children's hospital within reasonable distance and go there.  As it happens, Boston Children's Hospital is ranked #1 in the country.  You can read about that here:

http://health.usnews.com/best-hospitals/childrens-hospital-boston-6140270

They are ranked #3 in orthopedics.  Since we're talking about traveling that far, we decided we ought to get second opinions on other issues as well.  I had done some research last month and picked up the phone and called.  I first called the orthopedic clinic.  Peyton now has two appointments on August 13th.  The first is with an orthopedic doctor who specializes in growth.  The second is with one who specializes in upper extremities.  A lot of what we are dealing with is very lax muscles and joints that are bending the wrong way, hip dysplasia, low muscle tone, etc.  I cannot wait to have them take a look at her and see what they can recommend.

We also now have an appointment with the pulmonary clinic on August 14th.  Since respiratory issues are her main issue (outside of simply having whatever conditions she has), we want to have a second opinion - just to see if someone has any ideas.  I don't know if they will or not, but you never know.  By the way, Boston Children's pulmonary clinic is ranked #4 in the country.

Since the orthopedist was just trying to pawn us off on the neurologist, and since her neurological issues are a great source of the mystery that is Peyton, we also have an appointment with a neurologist at Boston Children's.  That department is ranked #1 in the country in case you were wondering.

I would love for genetics to see her too, but we'll leave it at that for now.  We actually are in the process of possibly seeing another genetics clinic here locally - I just haven't firmed anything up on that yet.

We'll start with these three specialties.  I have spoken with another mom whose daughter is a complex case - they take her to a few different children's hospitals for other opinions.  This mom has very high praise for Boston Children's Hospital.  Honestly, every single person I have spoken with at BCH has been nothing but kind and personable and helpful.  I had one woman tell me how impressed she was with me.  So far, I'm extremely impressed with what I've heard from this other mom and what I've experienced via phone (and I've only dealt with support staff so far!).

It's going to be a tough trip!  We haven't traveled with Peyton in almost 2 years since my mom passed away.  It's so difficult to even comprehend what traveling with her would be like right now.  I will say this - just because we are making this trip, it does not open up the possibility of a regular family vacation anytime soon.  If it weren't for the medical "necessity" of this trip, we wouldn't be going anywhere with her.

So, I'm going to ask for prayers for this trip that everything comes together for us to be able to make this trip (there are a lot of pieces of the puzzle which need to come together).  And then prayers for Peyton's health that it remains perfectly stable for the duration of this trip.

I'll be keeping you updated.  Peyton does see the neurologist here before August, but it's not for another 5 weeks.  We'll see what he says about everything.