Hospital Life...Days 4 & 5

First of all, today is National Doctor's Day!  Did you know that?  What better place to spend it than in the care of some of our favorites.  Well, ok, I can think of better places to spend it.  That said, I want to take a moment to thank the following for all they have done for Peyton.  I know I'm going to miss some, but here goes:

Cardiology - Dr. A. Savage
Endocrinology - Dr. R. Paulo
ENT - Dr. D. White
Gastroenterology - Dr. R.B. Pillai / Dr. J.A. Quiros
General Peds Team {in-patient} - Dr. D. Mills, Dr. R. Teufel, Dr. P. McBurney, Dr. S. Mennito, Dr. A. Summer
Genetics {Boston Children's Hospital} - Dr. W-H Tan
Genetics {MUSC}- Dr. G.S. Pai
Neurology - Dr. S. Kinsman
Neurosurgery - Dr. S. Glazier
Orthopedics - Dr. J. Mooney
Pediatrician - Dr. J. Quinn
PICU Team {in-patient} - Dr. F. Tecklenburg, Dr. S. Webb, Dr. J. Cochran
Pulmonary - Dr. C.M. Bowman & Dr. I. Virella-Lowell
Surgery - Dr. C.D. Smith

And these are just some of the outstanding physicians who care for Peyton.  There are countless other doctors who have impacted our lives - from when we lived in Houston and when we went up to Boston.  Then there are the countless residents, fellows, medical students, Anesthesiologists, Radiologists, ER doctors, and other specialists who have been consulted along the way.  The above list, for the most part, are the people we see most frequently.  I mention the hospital doctors because Peyton is in the hospital frequently and when she is in she is often in for a while.  These people are people who recognize us even when we aren't in the hospital and we're just passing in the hall on the way to a regular out-patient appointment.  The in-patient doctors are ones with whom I have had the extremely difficult discussions with about what to do in the event that Peyton suddenly needs medical intervention to stay alive.  These people are important.  You don't forget the ones with whom you have had those conversations!

So...a very heartfelt thank you to all the doctors who have cared for Peyton in the past and present.  Saying "thank you" seems insufficient.  But thank you!

~~~~~

Now, on to the update on Peyton's health.

I was so tired yesterday that I couldn't even think of writing an update.  I tried to sit down to do it, but it wasn't happening.

If we back up to Thursday {Day 3}, you know that Peyton was moved from the regular unit to the PICU step down unit.  I didn't really talk about why.  When Peyton woke up that morning, she was extremely irritable.  She'd been getting oxycodone and morphine for her pain as often as she could get it and, yet, she still seemed to be in a lot of pain.  When the respiratory therapist was in, she noticed how unlike Peyton this behavior was, even for being sick.  Later in the morning, another respiratory therapist was in with her for treatments.  As she was working with her, she grew concerned because Peyton was only taking 6-8 breaths a minute.  Instead of being extremely agitated and irritable, Peyton was pretty much out of it.  Not much activity at all.  She went from one extreme to the other.  We didn't know what was causing either one!  She called the respiratory therapist who had been in earlier.  They called in the nurse.  They eventually called in the doctor.  A lot of assessing went on and, long story short, it was decided that she could be better observed in the PICU step down unit, so she was transferred.  They did consult with the PICU team, who did come down to assess her themselves.  This is a good step to take just in case something were to happen that would send her to the PICU itself.  Through all of this, though, we really didn't know what was causing her to be so sick.

The doctors were quite concerned for her on Thursday.  There was a lot of unknown in terms of why she was behaving the way she was.  Rather than just jump to the thought that there was some neurological issue going on, they decided to see if it was all of the heavy pain medications.  They gave her a drug through her IV called Narcan.  This drug basically reverses the effects of any opioids in the system.  She has had no morphine since then and very little oxycodone.  While the drug was being administered, Peyton grew clammy and cold and then began throwing up a lot.  She did become agitated again and her respiratory rate did increase.  Eventually, though, she became pretty sleepy again.  Throughout the time she had been in the hospital, her heart rate had been pretty high.  Normally when she is asleep, it's between 70s-80s and it was in the 150s while she was sleeping.  While awake it's in the 1-teens to 120s normally, but it was anywhere from the 130s to 160s during this time.

The lab work through Day 3 wasn't showing any infectious process, although it certainly seemed like she had some sort of respiratory virus.  They did find that she had more CO2 in her system than she should, so it was recommended that she go on her bipap, even when awake, to help with her respirations.  This did seem to help a bit and her CO2 levels did come down.  More lab work was done.  Additionally, she was sent for a head CT and a shunt series to check to see if her shunt is working properly, and a fully skeletal survey to see if there were any additional fractures.

During the night of Day 3/4, it was decided that Peyton needed to be given IV antibiotics, so those two were started.  We also got the results of the skeletal survey and it did show a new hand fracture.  Nothing is to be done about that in terms of splinting it.

This is Peyton right before her transfusion.

On the morning of Day 4, Peyton's labs were showing that her iron level was very low.  Additionally, her hemoglobin had been dropping.  On Wednesday it was 8.9.  On Thursday it was 8.1.  On Friday, though, it was 7.2.  It was decided that Peyton definitely needed a blood transfusion.  She had never had one before, so this was another "first".  That was started around 3pm and ran over about 3 hours.  At the end of it, she seemed a little more "pink".  Oh, she certainly didn't look "well", but she looked better!  Aside from this, there was just a lot of "watching and seeing" and continuing with the IV antibiotics.

Today is Day 5.  Peyton looks so much better.  Again, not "well", but vastly improved.  She's agitated today.  Last night her right thigh was swelling above the splint.  It had been getting more swollen throughout the day, but is looking a little improved this morning.  Also, yesterday her left index finger became pretty red and swollen.  They did another hand x-ray and it apparently doesn't show a fracture there, but that's not to say there isn't one.  To look at it, I would guess there is one.  The resident said it could take some time to heal before it shows up better on the x-ray.  There really wouldn't be anything to be done for it anyway.  Peyton's hemoglobin is up to 8.6!  They will, of course, keep an eye on that to make sure it doesn't drop again.  They did find some blood in her stool and a small amount of bacteria growing in her urine sample.  They'll keep an eye on all of that as well.

This is Peyton right after the transfusion.  Just a little more "pink" than before.

Peyton looks quite a lot better this morning.  Again - not "well" but if you'd have seen her on Thursday morning, you'd see a huge improvement now.  Our heartfelt thanks to the anonymous donor who gave blood {type O negative} so that Peyton {also type O negative} could receive this much needed boost to her system.  If you are a donor, thank you.  It's because of people like you that she was able to get this blood.  If you aren't and don't have any health reasons not to donate, then would you consider donating?  You never know when you or someone you love will need blood!  As it turns out, I wouldn't have been a match even if I could have done a direct donation.  Our types don't match.  So that makes me even more grateful to donors today!  Thank you!!

Yesterday was Good Friday.  I wrote a post on my personal blog about the fact that Peyton was receiving blood on that day of all days.  You can read that post HERE.

As for today {Day 5}, we'll just watch and see and make sure nothing gets worse.  She was throwing up a lot yesterday and she has already thrown up a little today.  She may have a little bug.  We will not be home for Easter tomorrow.  This will be the first holiday that Peyton has spent in the hospital.  She did, however, get a nice little Easter basket yesterday from the volunteers.  I think Moira will benefit from the contents more than Peyton, but it was very nice to receive.

I will keep you posted as always.  And, as always, prayers are very much appreciated!  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!

Another New Normal

Yesterday was a long day of playing "hurry up and wait".  We were anticipating being able to bring Peyton home yesterday, but we had a couple things to get out of the way first.

First, it was Valentine's Day.  Peyton has never spent a "holiday" in the hospital.  Of all her admissions, I'm pretty sure this was the first, although it's been close before.  Ok, so it's not a major holiday, but it's a recognized "event" if you want to call it that.  The tech came in to her room at some point during the day and handed me this:

It was also decorated and signed on the other side as well.  Signatures include the tech who delivered the card, various nurses, her Respiratory Therapist, and even the cleaning staff!  Later in the day, Peyton got a big red heart balloon.

Before leaving, two physical therapists from MUSC led a little education session for myself and members of Peyton's home nursing team {one of her home nurses, the business manager, the nurse manager, and one of the other nurse supervisors}.  Everyone wanted to be present for this so that we could all be on the same page as far as how we need to handle Peyton now.  She needs to be handled in a fairly specific way now, considering the multiple current fractures and the brittle bone condition.  They looked at how to handle her for diaper changes, moving her, and transferring her from crib to wheelchair and to her car seat, which Ron had brought up the previous night.  That went very well.  Any concerns or questions were handled, so that was reassuring for me as we prepared to bring Peyton home.  It worked out well {read further down about how Peyton got home}, because the nurse who would be working once Peyton got home was in attendance and she offered to bring Peyton's wheelchair, car seat, and a couple of our bags home with her so she could bring them later when she would come to our house to work.

There was a question of some outstanding labs that were being requested.  These were specifically for the purpose of Genetics in Boston.  Several things are being coordinated between them and our Neurologist here at MUSC.  Dr. K has been wonderful.  I really do like him.  I have a great deal of respect for him.  He has been extremely helpful in coordinating efforts with Dr. T in Boston.  There are lots of hurdles and challenges, especially considering the nature of these tests, being that they are really for research and not part of a treatment protocol.  So, many thanks to him for leading this effort here locally for us.  That said, there are tests which are needing to be done.  When the doctors rounded yesterday, we found out that we're just going to work on getting those taken care of when we see Dr. K in clinic next time.

Then came the discharge process.  There are issues with Peyton's wheelchair as it is right now.  It needs modifications made to it so that it is safer for her.  That said, until that happens, we can't use it safely.  That will happen on Monday, but until then, we can't use it.  The nurse case manager made arrangements for Peyton to get medical transport home.  Once they were into the discharge process, they called the number {this is through Medicaid} and an ambulance was arranged for her.  Now, it's kind of like AAA in that you call a number and they find an available provider to handle the service.  The wait time could be anywhere between 30 minutes to three hours.  Our wait was closer to the three hour mark.  But I wasn't complaining - this was the safest way to get Peyton home.

Around 5:30 the EMT guys arrived in her room with a stretcher.  They simply pulled the fitted sheet off the mattress, and rolled the ends together over the length of Peyton's body, and {holding her carefully} shifted her from crib to stretcher.  They got her all bundled in and strapped down.  They had an oxygen tank right there on the stretcher, so got her hooked up to that.

At the nurse's station, we stopped as there was some paperwork to handle.  I had to dig out Peyton's insurance cards so they could get a copy.  It only took a few minutes.

We then made our way to the elevator.  It's a bit of a maze getting from the 7th floor down to 1st on the patient transport elevator.  We wound our way through the adult ER {changing direction once or twice}, and out the ambulance entrance.  They got Peyton loaded into the ambulance.  I originally was under the impression that it was strictly a ride only, but it was, in fact, full ambulance service.  They hooked her up to the pulse ox monitor and adjusted her oxygen when the EMT thought it needed to be bumped up a little.  He was very attentive to her and very concerned about any bumps we might hit on the road.  He was concerned for her safety and comfort.  Very nice.

This was Peyton's view {I snuck a couple iPhone pics while on board...I was in the back with them}:

We made it home somewhere around 6:30, give or take.  It's funny how an ambulance showing up will bring out the neighbor kids.  We had two or three show up {I think after we actually had Peyton inside}.  When the EMT guys left, I saw them talking to the kids as they put the stretcher back in the ambulance and closed the doors.  Peyton was brought into the house on the stretcher.  As her room is immediately to the right as you come in to the house, it was a bit of a tight turn, but they managed to get the stretcher into her room, right up next to her crib, which is like a hospital crib.  They basically did the reverse process as to what they did to get her on the stretcher.  It all went smoothly and they finished up and left.

Within 30-45 minutes of arriving home, the doorbell rang.  There was a lady at the door with a box.  I didn't recognize her, but she said she was from our church.  She had the biggest smile and was just so sweet.  She had brought us food.  I was just so surprised and, of course, thankful.  I posted something on facebook and it seems that this was food sent over to us from our church's Luke 14 banquet which was happening last night.  If you don't know about that, you can read more here and here.  It is a banquet put on at our church to honor people with special needs - young and old alike.  It is a wonderful event and we have been blessed to attend the past three years.  It wouldn't have been possible to go this year anyway given Peyton's overall health issues, but certainly not this year with her being in the hospital.  That someone would even think to send over a meal for us from that banquet is just so incredibly thoughtful, it brings tears to my eyes.  So, thank you!!

So, we are home now and we are trying to settle in to this "new normal".  I am sure things will feel better in time, but right now it is scary.  I'm scared to touch Peyton or to move her the wrong way, or to know that I could potentially inadvertently break her!  She requires so much more care now - not that she didn't require much at all before!!  It's a new set of challenges to deal with.  It's a new lifestyle.  I have felt fairly tied to home before all of this.  Yes, we do leave the house to go to church or run errands.  We will leave home for a few hours, with Peyton in the care of the nurse.  Recently, we've only brought Peyton out of the house for doctor appointments.  That much will stay the same, but bringing her out for those appointments now will require even more care and effort.  And I feel like I'm hesitant to consider leaving the house for any reason now.  Me - not with Peyton.  It would certainly seem that our pending trip to Boston is off the table for now.

Peyton is fussy today.  She's due for her pain meds right now.  Like clockwork.  You can definitely tell when she needs them.  It's so hard not to cry when I see and hear her like this.  

I want to thank everyone for their prayers and support.  We still need them.  Do we ever!!  We have received so much love from so many people - people we know and people we don't.  From family to friends to church family, we've been blessed by all your support and prayers.  Then there are people who are friends of friends, or friends of friends of friends.  There are friends I've met through blogging who have been praying, and others in the blog world who are but who I don't know as well {or at all}.  I love watching blog stats, and this blog is no exception.  I'm looking at where people are coming from in the world and it's been amazing to me.  So if you are here and are following her and offering support in some way though you do not know us, thank you.  If you are one of her caregivers or know her from the hospital of from somewhere in the community, thank you.  If you are a member of our church - or another church - or are finding your way here because a friend asked you to pray for Peyton, thank you.  However you wound up here, we truly thank you for all your support.  And for your continued prayers and support.  This is an ongoing challenge and there are a lot of new issues which are going to make our world just a little more {maybe a lot more} challenging and we need your prayers.

Thank you for everything.  Thank you for visiting.  As always, I'm going to keep posting on her progress here.  I hope that you'll come back to check in on Peyton.

Day 3 Update

I have to say that my admiration for Peyton is at a new high right now.  This poor child has endured more than most and just when you think she's endured enough, she pushes through something else.  Today she had her first ever {and hopefully only} lumbar puncture.  The Neurologist hoped to be able to do this without sedating her.  It was done right in her room.  He and the doctor from the PICU whose service Peyton is on were both in the room as well as a 4th year med student and a nurse.  Once the Neurologist was present, it was non-stop activity for the next 30-40 minutes as Peyton was prepped, trays set up, consents were explained and signed, and so on.  I was also present in the room during the procedure.  They used a numbing cream on the area.  Peyton was turned on her side and tucked into a fetal position.  Now, Peyton likes to lie flat...period.  She does not like to be held down.  It was looking like we might have to reschedule for a date when she could be sedated.  However, they were able to keep her still enough for long enough to get the spinal fluid samples that they needed.  From my view {I was facing Peyton's front side}, I could not see the 3" long needle being placed.  It's not just a long needle, but it's a larger gauge needle.  I think you could drill a hole through the ice frozen over a river with that thing to do some serious fishing.  Ok, it wasn't that big, but it was sizable.  Peyton did get morphine during the procedure.  I do not think she felt much, if anything.  I think her biggest complaint would probably be from being held against her will.  Afterwards, they kept the crib flat rather than have the head raised.  This suited Peyton just fine.  She doesn't like to be on an incline.

She seemed to do well today from a respiratory standpoint.  Well, as good as it gets for her.  I discussed again with the doctor the fact that what we are seeing here is a decline in her overall condition.  She likened it to someone with muscular dystrophy {not what Peyton has}, where over time you see the muscle weakness and eventually internal systems become affected - heart and lungs being the major ones.

There's not a whole lot more going on just now.  We hope to be out by the weekend.  Perhaps we'll be home sometime Friday.  Her g-j tube is due to be changed out next week and we are hoping to have that done before we leave here.  It would save us a trip back next week just for that.

Aside from all of this, the samples from the lumbar puncture will be on their way.  This is part of the studies that Genetics at Children's Hospital Boston needs.  It's not related to this current hospital stay.  I did email Peyton's Geneticist up there to let him know she's in the hospital and that the lp was being done.  I heard back from him.  He let me know that they have begun the gene sequencing with the blood sample of Peyton's that was banked up there when we were there in August.  There appears to be some sort of technical difficulty at the moment, but they hope to have some results within a month.  If you are unfamiliar with genetics testing, just know that tests are not done overnight.  It can take days, weeks, or many months before there are answers.

I just want to thank you all for your incredible support for Peyton.  You have no idea how much it means to us.  Thank you all so much.  Please continue to pray for her as well as for a resolution to whatever technical issues are involved in that genetics testing up in Boston.

I will keep you updated on how things are going here.

Back to the Hospital

We thought we were in the clear when it seemed that Peyton did not get that nasty GI bug that Moira, Ron and myself all got.  Yet this morning, we wound up taking Peyton to the ER.  Not with a GI bug, but yet another respiratory ailment.

I've spoken several times lately about how Peyton is requiring oxygen during the day while awake - something that never used to be the case.  This has not changed for the past several weeks.  However, over the past couple of days, the amount of oxygen she is requiring during the day has increased.  She has also been a little on the junky side, with increased heart rate and the odd low grade fever here and there.  I've been in touch with the Pulmonary clinic about her condition and it was suggested that perhaps we might need to start a course of IV antibiotics.  We can manage this at home since she has a port.  By the time last night rolled around, I was thinking I'd definitely make the call to the pulmonary clinic to suggest that we get that started.  Peyton was sounding horrible and it didn't look like we needed to wait on this any longer.

Then this morning came around.  Peyton was hot to the touch so I undressed her and got a temp on her.  She had a temp of 100.8.  That may not seem like a raging fever, but you have to bear in mind that her "normal" is upper 96 degrees to mid 97 degrees.  And, of course, we're ultra cautious anyway, so 100.8 isn't anything to mess around with.  In addition, she sounded even worse and she just looked "off".  I made up my mind that we were going to have to take her to the ER, but I also knew we'd have to call the home nursing agency pretty quickly to call off her nurse for today.  She has transportation issues, so we would have to be sure to catch her before she left, as she has someone bringing her to work.  No sooner did I form that thought did the agency call me to say that she had called in sick so I guess for today it all worked out.  Ron got Moira on the bus to school and I got Peyton and her gear ready to go and we headed off to the children's ER at MUSC.

Ron dropped us off at the door and then went to park the car.  I went in with Peyton and we were taken back to a room pretty quickly.  Once in a room, it was mere minutes before a doctor was in the room.  It seemed almost immediate.  While we did bring her in because she was obviously sick, apparently she was sicker than we realized.  The doctor enacted their "rapid response" protocol immediately based on their assessment.  This meant that her port was accessed within minutes and a bolus of fluids was pushed through very quickly.  They gave her additional fluids shortly afterwards.  Antibiotics were ordered and given fairly quickly as well.  A second antibiotic was given not long after that.

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A lot of blood was drawn for labs and a chest x-ray was also done.  The x-ray doesn't look too bad.  We're still waiting on the blood work results.  The doctor was in several times.  We knew pretty early on that Peyton was going to be admitted to the hospital, but there was some concern over whether it would be to the PICU or to the PICU step down unit.  They eventually decided on the step down unit.  With the fluids and oxygen, Peyton's color and mood started to improve a little.  Her heart rate finally came down out of the 150s.

We didn't spend a horribly long time in the ER before Peyton was taken to a room.  She is under the care of the PICU doctors, as opposed to the general peds team.  She wasn't in the room long when her Neurologist came by.  He just happened to notice in their computer system that Peyton was in, so he came by to see what that was all about.  I was glad, since I was actually going to email him to let him know.  We discussed the lumbar puncture and other research type issues that are hanging out there for Boston.  He is thinking that if she is doing ok, he may be able to do the lumbar puncture on Thursday.  

In addition, he is talking about contacting the researchers {Children's Hospital Boston and NIH} to see what we can do about expediting some of the stuff that's hanging out there in the hopes that we can get her some form of treatment.  Of course, it's research and there are FDA guidelines and I'm sure other sorts of hurdles to cross, but he is hoping that somehow he might be able to take some of that from them and perform whatever needs to be performed right here at home rather than have her travel.  He is looking at it from the point of view of being "emergency and compassionate" reasons.  We will see what happens.  I would say that if someone said we were needed up in Boston in the next month, we probably wouldn't be going.  She needs to have all this stuff done, but it's getting to the point where it just isn't going to be feasible because of her medically fragile state.

We aren't sure what is going on.  There is the great possibility that what is {and has been} happening are not so much an illness as they are signs of her overall condition diminishing.  As the PICU doctor said, often children with severe issues like Peyton, over time, will become weakened in the areas involving swallowing, breathing, and so on and what appears to be an illness might actually be more of an inability to perform these functions well.  We just don't know.  I would suspect, though, that because of her increased oxygen requirement during the day that it is the latter.

In addition to all of this, Peyton's level of pain today must be excruciating for her.  She is on Neurontin and Oxycodone for pain, but it seems like that's not doing anything.  I noticed it first thing this morning.  I barely touched her leg and she began screaming out in pain.  I don't know what is different about today but it is unbearable for her to be touched or moved.

We pray.  We pray often and we pray hard for Peyton.  The problem is that we don't know which direction our prayers are supposed to take.  It is heartbreaking to see your child enduring so much.  You wonder how much a body can take.  In addition, this isn't something we've really talked about openly, but we're being asked questions that no parent should have to answer for their child regarding the "what if" scenarios.  As much as you are praying for Peyton, please pray for us that we will have the wisdom to make the best decisions for her.  Please feel free to share this site to people you know would be willing to pray for Peyton. She needs many prayers!!

Thank you!

Research Studies

Peyton has been doing about the same as usual for the past couple weeks.  She is still having issues with maintaining good oxygen levels, so she is spending most of the time on oxygen via nasal canula.  Her heart rate continues to be a little higher than normal as well.  Earlier this week, Peyton completed a two week course of antibiotics. We weren't really sure what was going on, so the pulmonary doctor put her on antibiotics just in case she had something brewing.  It doesn't seem to have done anything at all.  I spoke with the clinic the other day and she is going to start on an oral steroid for about 4-5 days to see if anything changes.  She quite possibly has some inflammation so it may help with that.  We shall see.

In other news, just prior to Christmas, we finally completed all the paperwork that was necessary for the Manton Center for Orphan Disease Research at Boston Children's Hospital.  This is the research center that Peyton has been brought into to see if they can unlock the mystery of her genetic disorder.  We sent in the research consent forms - one for each of the four of us.  A couple weeks ago we spoke with one of the people at the Manton Center regarding the study and what our next step would be.  We are awaiting kits from them which will have everything we need to have blood samples from Ron and I and a saliva sample from Moira sent back to them.  We'll take that to the lab at MUSC here and they can coordinate the delivery of the samples.  Boston Children's Hospital has Peyton's blood already, so hopefully there is enough for them to provide to the Manton Center.

Peyton's Geneticist in Boston is wanting to look at a specific gene based on the research he has done which has him believing her to have an exceedingly rare copper disorder {think in terms of her being one of 5-10 people in the world or quite possibly even more rare than that}.  If it is normal than they will move on to whole exome sequencing.  Right now, through regular testing, Peyton could have whole genome sequencing done to the tune of about $10,000.  When the Geneticist at MUSC mentioned this to us, it was not covered by insurance.  I am not sure if that has changed.  This test is, by far, the most advanced genetics testing available to the public.  Whole exome sequencing is still being done on a research level.  That testing is even more advanced than whole genome sequencing.  So, if she has this test, it will be the most advanced testing known ever.  It will be covered through the research study, so that is good!

This particular research study is on-going.  This means there's no end.  They will continue to work to find answers for us.  It's for patients like Peyton who have exhausted all other options of testing and who still remain undiagnosed.  The study is anonymous, so any labels pointing to Peyton are removed. She becomes a number for research purposes.  However, should they find anything, it will be reported back to her Geneticist in Boston.  Nothing will go into the patient record since it's an anonymous study If there are findings, we would have to go through a clinical lab {as opposed to the research lab} so that the findings could be officially be added to her medical record.  The clinical lab would require new samples for their requirements.

If nothing turns up in whole exome sequencing, then they will keep on researching and testing.

In addition to this, I was given the name of a doctor at the the National Institutes of Health in Bethesda, MD.  He had been up at Boston Children's Hospital and our geneticist up there had spoken with him about Peyton.  They are very much on the same page about what they think is going on.  This doctor is apparently a world expert in copper disorders.  While Peyton has a copper disorder of some kind, if you were to google copper disorders, I'm pretty sure I could tell you that none of the ones you will find are what she has.  She doesn't match up it the known copper disorders, yet the copper in her system is virtually non-existent.

This doctor at the NIH is doing clinical trials with copper supplementation.  It was up to us, but our geneticist spoke with me about contacting him to see about getting into that trial. What this means is that if we go this route, there are a lot of tests to have done on Peyton prior to starting any copper supplementation.  We were already planning on having this testing, but for sure it would have to be done before receiving any copper supplementation, regardless of where we would get it from {Bethesda or perhaps eventually Boston}.  We are working with Peyton's neurologist here to coordinate her having a lumbar puncture.  Similar to testing for meningitis, but the requirements for her test are much more strict {I will say that - they require a "pristine" sample.}.  She will also require a skin biospy at some point.  I am not sure if that will be done at MUSC or Boston Children's Hospital.

I have emailed Dr. K in Bethesda about the clinical trials so that I can introduce myself and to find out his thoughts on Peyton's participation in the trial.  I haven't heard back yet, but it's only been a couple days.  If we get in on that, we'll try to coordinate things so that we go to Boston and Bethesda in the same trip.  Apparently the Bethesda trial covers expenses so perhaps that's a separate trip that's covered.  Peyton cannot fly {impossible with all the equipment she requires}, so unless they get her a medical flight and have her stay in a hospital there, I'm pretty sure we'll have to drive.  It's on the way to Boston so it wouldn't be out of the way on a trip up there.

Aside from all of that, I have a new blog design!!  If you're here, then I'm sure you noticed it!  If you can believe it, I did it all by myself!  I'm pretty excited about how it turned out.  I hope you like it too.

Aside from Moira being down with the flu right now, I suppose the only major newsworthy item to report is that Ron's company recently {last week} had a surprise round of layoffs.  It was a tense day when that happened.  While we waited to hear if the cuts were finished on that day, we discussed a back up plan.  It isn't pretty...but it's a plan.  Thankfully, Ron's department was spared cutbacks, so all is well.  It made the news here.  I'm not sure how extensive the coverage went, but if you heard about layoffs at Blackbaud...that's where he works.

I will update you with any further developments on this whole research thing or if anything comes up with Peyton's current health issues!

Moving Forward

I feel like we are picking up a little momentum where Peyton is concerned right now.  I mentioned yesterday that I had spoken with Dr. T. in Genetics in Boston regarding the latest news on that front.  I tackled 3/4 of the paperwork that needs to be done for the Manton Center - that's the research group in Boston.  The other 1/4 is Peyton's portion.  Turns out the rest of our paperwork was fairly straightforward.  Peyton's, of course, needs the more detailed medical history and requires more effort than I can muster up right now.  I have been sick for the past few days.  A trip to urgent care yesterday and a Z Pak should do the trick.  Then I will finally be able to get this done and on its way up to Boston.  The other 3 packets of information are already en route.

This evening I received a call from Peyton's Neurologist {Dr. K.} here in Charleston.  He was calling to discuss Peyton's case with me in light of his recent conversations with Dr. T. in Boston.  I think that's his new best friend now.  If ever I could be a fly on the wall in the middle of a conversation - it would be the one between the two of them.  I think it would be fascinating.

Dr. K. is aware of the possibility for Peyton to become involved in this on-going research study at NIH in Bethesda, MD.  He seems to be on board with this plan.  Dr. T. asked us to consider it and contact the other Dr. K. at NIH regarding the study if we were interested.  Dr. T. could go either way. Dr. K. here at MUSC actually knows Dr. K. at NIH.  He seemed quite interested in this study to see where it might lead for Peyton.  I think we all agree that it falls into the category of "no stone left unturned" or "nothing ventured, nothing gained".

The next step right now is the lumbar puncture that I had previously mentioned.  Dr. K. at MUSC is going to do that.  He wants us to think about it, but really, it is the next step we need to do.  It's necessary for Dr. T. in Boston to have results of a lumbar puncture to help establish a base line prior to any form of copper supplementation.  The LP is probably going to happen around the second week of January.

While I had him on the phone, I asked Dr. K. about increasing Peyton's Neurontin.  She is on this for pain for her hip and shoulder.  The generic name for Neurontin is Gabapentin.  For whatever reason, every time I open the fridge to get a dose or Peyton, I keep calling it Yo Gabba Gabba-pentin.  If you have a small child, you'll possibly find that mildly amusing.  Gotta do something to keep things interesting, right?  I digress.  Dr. K. is on board with an increase in her dose {it's already 3x/day, but the amount given with each dose will increase}.  We've noticed Peyton's pain level in the past week or two seems to be on the rise and we're having to give her Oxycodone between doses of Neurontin.

There is the possibility that Peyton will need a hip x-ray to check the status of her hip dysplasia.  He suggested a possible sonogram as well.  He also suggested that perhaps botox might be considered, but I don't know what my wrinkles have to do with her hip pain! I kid.  Like I said, I have to do something to keep things interesting.  We'll see how the increased meds help and go from there.

That's about it for now.  I was excited to have another phone call from another doctor this week.  Things are moving forward.

A Very Long Overdue Update

I last updated Peyton's CaringBridge page on November 9th!  In this blog construction phase, I have actually gone ahead and put in the most recent couple updates from CaringBridge into this blog so you can easily refer back to those.  As I said in my welcome post, it's going to be a while before this blog is completely populated with the entire contents of that CaringBridge site.

I mentioned last month that things were fairly frustrating with Peyton.  No.  That's probably not the right word.  More like overwhelming and exhausting.  There's been so much happening.  I'm simply exhausted right now.

Peyton has not really returned back to her base line since she was sick and hospitalized back in September.  Forget the 17 day stay in October.  She's just never fully bounced back since September.  She's not lethargic like she was, but she doesn't have a whole lot of pep.  She is increasingly inactive.  Her hip pain is increasing in the past couple weeks.  It's heartbreaking to see her in so much pain and not be able to do something for it.  She's on meds, but they aren't working as well as they need to be.

Peyton has had the worst diaper rash for quite some time now.  It is an angry red at times.  Bleeding a bit at times.  Very painful to look at, so I can't imagine how it must feel to Peyton herself.  Just when we think it's resolving, it flares up again.  I think her skin is just so ultra sensitive to anything that touches her bottom that it's literally tearing her skin up.

At the end of November {the 26th}, Peyton had another "episode" at home where she decided that breathing wasn't absolutely necessary.  She began to turn grey/blue.  She came around fairly quickly {less than a minute}.  We took her to the ER where they did absolutely nothing but eventually send us home.

Peyton had a Cardiology appointment back on December 7th. I have to say that in Peyton's 6.5 year life, this was the very first appointment of hers that I have missed.  I was sick that morning, but she had to go.  Ron took her - all on his own!  Well, with the home nurse, but he did it!  Everything is pretty much status quo in that department.  She will go back in a couple months.  They will do another echocardiogram to see how the mitral regurgitation and heart murmur are doing.  So far, the idea of doing a heart cath is still just an idea.  No plans for one at this time.

A couple weeks ago, Peyton started to get junkier than usual. I was worried as we were heading into that particular weekend that she was about to have to go to the ER.  I contacted the Pulmonary clinic and we were able to start Peyton on a 2 week course of antibiotics to hopefully stave off any major illness.

I mentioned previously that we had a sudden unexpected issue in our home nursing situation.  That was closing in on a month and a half ago.  In a nutshell, we had to fire our home nurse who was doing 40 of the 56 hours a week that Peyton gets.  I won't go into details here but we went through a challenging phase after that.  Scrambling to get nursing coverage.  Not having enough hours to begin with.  That's another blog post in and of itself.  However, God provides.  I wrote about a little Christmas miracle we received over on my personal blog.  You can read that post HERE.  Long story short - we now have 84 hours a week of home nursing care!  I do, however, encourage you to read that post!

During Peyton's last hospital stay {those 17 days in October}, you may recall that I was in constant contact with her Geneticist up at Children's Hospital Boston.  He has been an amazing asset to Peyton's medical team.  He had multiple conversations with Peyton's physicians while she was in the hospital and he has also been in touch with Peyton's Neurologist here at MUSC lately.  In the past month, he has called me himself to discuss various updates.

While we've been going about our business here, the Dr. T. in Boston has been discussing the case with other doctors up there as well as her Neurologist here.  Here is what we know:

* We still have no diagnosis;
* Because of some very specific tests that have been done in the past couple months, we do know that Peyton is severely copper deficient - as in, almost non-existent;
* Peyton's case is exceedingly rare - so rare that she may be "it";
* There is no protocol for treatment because of the rarity of Peyton's condition;
* You don't just "get" copper supplements.  It's not like grabbing some iron pills from the pharmacy;

All of that said, and leaving a whole lot of detail out, in a nutshell, Peyton is likely going to wind up being a research study in and of herself.  We are filling in paperwork to have our family enrolled with The Manton Center for Orphan Disease Research.  Enrolling in this will enable them to place Peyton into a research program.  There is a specific gene that they need to look at.  I won't get into that now.  We all have to be enrolled because they may require samples from the rest of us {including Moira} at some point.  We've sat on this paperwork but I'm working hard to get it finished ASAP.

Dr. T. has been talking with various specialists, including a doctor with NIH {National Institutes of Health} who is apparently one of the world's experts in copper disorders.  This actually came about this week.  Dr. K. is in agreement with Dr. T. in having Peyton tested for this specific gene.  The issues with copper supplementation are namely that it is impossible to come by in the U.S. right now, and we don't know if it is even going to have an effect.  We have to weigh the potential benefits for Peyton with what we are willing to put her through - to what end.  Dr. K. has a research study that is on-going which involves copper deficiencies.  Not what Peyton has specifically - but there is the potential to receive supplements through this program.  Dr. K. is willing to talk with us and we can learn about this program and see if this is something we want to participate in.  If so, it's going to mean a trip to Bethesda, MD.

All that said, Peyton is going to require extensive testing before anything can be done.  She'll definitely be involved in research through Boston.  Whether or not we go to Bethesda has yet to be determined.  Peyton is going to require bloodwork, a lumbar puncture, and a skin biopsy at the very least.  There are specific enzymes that they need to examine.  Copper deficiency can have an effect on multiple organ systems.  We need to find out which ones and how they are being affected before any sort of therapy can begin.  As for therapeutic copper supplementation, Dr. K. feels that it is less likely to have an effect on Peyton given her age - it may be too late for this.  That said, it's something we should still consider. There are just too many unknowns.  Will it work?  What impact will it have on her?  I think there's a whole post just on describing what copper's effect on the body is.  I'll leave that for another time!

Right now we have a lot to consider.  It's looking like a Boston trip will happen in early Spring, perhaps.  There definitely will be one.  The Geneticist {Dr. T.} would like to see her, as will another doctor up there.  If we do participate in the NIH study, there will be a trip to Bethesda.  That would be so easily combined with a road trip to Boston.  The question is will the timing of things required for Boston and Bethesda line up to make that possible.

Please Lord, allow our vehicle to handle the possible multiple trips.  Allow things to line up so that Moira doesn't have to travel with us {which frees up space in our vehicle but, more importantly, frees her from the stress of having to deal with all of the "Peyton" activity that will go on}.  Most importantly, Lord, grant all of these physicians the exact knowledge and wisdom where Peyton is concerned so that they can do the exact right thing for her.  While you're at it, Lord, grant us as her parents the wisdom to know that the decisions we make on Peyton's behalf are exactly the right ones for her.

Update

When I last wrote we were concerned that Peyton would have to go back in the hospital for albumin infusions and a blood transfusion.  This week, on Tuesday, Peyton had the bloodwork done that the cardiologist ordered last week.  Long story short, we do NOT have to bring her into the hospital for these things.  Her numbers seemed to have bounced back, although I am a little skeptical of one of the numbers.  If it's right - and not a fluke - then that's great!  That's not to say her numbers are perfect.  Just good enough to avoid this possible next step.

We also saw the neurologist.  The pending test results from when Peyton was in the hospital really didn't show a lot.  There's not a whole lot to report on this visit.  The doctor is anxious to help us, but we're kind of at a point, overall, where we aren't sure what the next step is at all.

A couple days before all of this, on November 4th, Peyton began having some serious "diaper issues" which cause our home nurse to be concerned that Peyton might have c diff.  I think I wrote about that last time.  We had to get a stool sample kit from the pediatrician's office on Monday.  I only JUST got the results this afternoon - and it took a lot of effort on my part to get them.  Sigh.  The end result is that she does NOT have c diff or any of the other bacteria that that kit tested for.  That is great.  And I'll take that news.  But she's had really nasty diarrhea for at least a week now with no real signs of letting up anytime soon.  I did not really get anywhere with the doctor's office asking what we should do.  He suggested bulking up her diet.  She's tube fed.  I can't give her rice cereal.  I am not certain where that came from, but I can't do that.  I may need to try another probiotic.  I was a little frustrated after that whole ordeal chasing down results and whatnot, so late this afternoon (like 4:30 pm on a Friday late) I emailed Peyton's gastroenterologist through the hospital system.  I certainly wasn't expecting a response, but I've felt since we first went through the pediatrician's office a week ago that we probably should have gone through the GI clinic all along.  We just happened to run into the GI doc in the lab at MUSC this past Monday when Peyton was having that bloodwork done, so I did mention to him what was going on.  So the content of my email today wasn't going to be a surprise to him.  NINE minutes after sending that email, I had a response from his nurse saying he'd like to see her on Tuesday in clinic.  Nine minutes.  NINE.  Can I just reiterate the frustrating day - no, two days - I had trying to get results out of the pediatrician's office??  And a specialist at the hospital read and had his nurse respond to my late Friday afternoon email within NINE MINUTES.  Seriously!  Can you say "impressive"??  Anyway, so we'll just live with this til Tuesday.  Hopefully by then things are improving, but as I said, things are not heading that way so far.

On the whole, this has been a frustrating week.  First just dealing with Peyton's health issues of late.  Fortunately for me we've had nursing and they get to handle some of those nasty diapers.  However, at 1am on Wednesday, I was still up and I walked into Peyton's room and I could smell it and I knew we were in trouble.  I had to wake Ron up and she needed to be bathed, her bed stripped, laundry started, things sanitized, bed remade, Peyton redressed, and put back to bed.  THEN I had to clean the tub.  I wound up cleaning the bathroom.  At about 2am.  Does that not sound like fun??  I hadn't yet been to bed and by that time, I was wide awake.  I had other issues going on which kept me awake.  At about 5am or so I pulled up my online bible study on YouVersion on my brand new iPhone (woohoo!!) and "began" my day.  Peyton woke up in the morning as usual but when the nurse left at 4:30 Thursday, I put her down for a nap.  She woke up at 3am Friday morning.  Because I was up all night the night before, I had slept for 5 hours while the nurse was here, and then for another couple after Ron got home from work.  So, at 3am I was, of course, still up.  I changed her and she did actually go back to sleep pretty quickly.

So, we've been dealing with a lot with Peyton which has been highly stressful.  Ron and I had a long discussion about a lot of things Wednesday night after we got home from our First Wednesday service at church.  The bulk of it was involving another issue which was mainly responsible after the 1am diaper explosion for me to not get back to sleep.

I am not going to go into detail here.  If you want to talk to me personally in some other setting (phone, email, in person), I can share some details, but it isn't appropriate here at this time.  Suffice it to say, we were suddenly and unexpectedly in a position of having to remove our 40 hour a week home nurse from Peyton's case.  Please pray that we are able to obtain a new - and very good - nurse quickly.  I know the agency is working hard at trying to meet our needs in light of the situation, which I am very grateful for.

Aside from all that, we're just moving along.  Going through the motions of life right now.  I think it's pretty safe at this point to say that Ron and I are fairly tapped out physically and emotionally.  Peyton's 17 day hospitalization and all that involved really took its toll.  We have been so grateful for the help we've received from our church family who had set us up with meals for all of last week.  I am extremely grateful to my next door neighbor who brought her little baby and 4 year old over today and just spent the day (all day!) with me.  Just because I had no nurse and she wanted to help in some way.  Her husband even brought us lunch.  How awesome is that?  Anyway, I just have to believe that out of all of this, something good is going to happen.  There are definitely blessings amidst the struggles.  I just pray for the struggles to ease so that we can rest a little.  I'm not any good to anyone if I continue like this.

I'll keep you updated.  Peyton has a few appointments next week.  Thanks so much for all your prayers and continued support!  

An Outpatient Update

I have been meaning to write this post for the past few days or so.  I've been in a "writing funk" and haven't blogged much either.  I'm just not feeling it.  That said, I do need to update you on Peyton's current situation.

Last Tuesday (10/30) Peyton had Cardiology and Pulmonology appointments.  It was a long day but glad we went.  It is so difficult to get Peyton out of the house to go to an appointment.  If you were to tell me right now we had to go somewhere with her, I couldn't be ready to leave for at least 30 minutes.  At least.

Anyway...

Cardiology.  She had her last echocardiogram while she was in the hospital last month, so she didn't need another.  Some of her odd symptoms appeared like they could be cardiac in nature, but after looking at the echo, it's not likely.  For example, the edema (swelling she was having in her face) might be a sign of right ventricular failure, but her echo did NOT show that.  She does not have right ventricular failure.  So that's a good thing.  The measurements they got did show that the left side of her heart is ever so slightly enlarged - like one point outside of the normal range.  Not terrible.  Her mitral regurgitation and heart murmur have been described as moderate.  I don't think those have gotten worse.

We first discussed everything with the fellow. Then he came back in with the regular cardiologist and a 4th year med student.  We talked with them for quite a while.  He definitely seems very concerned about Peyton's overall condition.  While the main issues she's been having the past month or two don't appear to be cardiac in nature, he is definitely concerned enough to want to do extra bloodwork on her.  He is particularly concerned about her albumin and hemoglobin levels.  They are low.  She's pretty anemic.  For some reason, Peyton has never had a blood transfusion, although we thought she was going to wind up having one last month, if you remember.

After a lot of discussion, he ordered labwork which we are going to have done on Tuesday this week when we bring Peyton in for her Neurology appointment.  We'll do the labwork first.  Once it's done, we'll call Cardiology and let them know it's done so they can be looking out for any preliminary results.  His hope is that he can get some results and then talk to the neurologist while we are still there.

We still have some outstanding tests from when Peyton was in the hospital.  We are hoping that we will be able to get some of the results when we see the neurologist.  The geneticists in Boston wants Peyton to have a shunt tap to get some CS fluid.  However, the neurologist here is hoping he can just do a lumbar puncture.  We're going to try to set that up.

Cardiology wants to do a heart cath, so we may try to coordinate that with the lumbar puncture.  The heart cath is going to require an in-patient stay, so that's out there.

As for the bloodwork on Tuesday, the cardiologist wants to see how the numbers compare to her last bloodwork done while Peyton was in the hospital.  He is wanting to bring her into the hospital as an in-patient - hopefully for a short stay - to do a blood transfusion and maybe an infusion of albumin.  I'm not sure if he has other things in mind as well, but he said he would like her brought in for a "tune up".  Her levels are really low right now and she's just not herself.  It's actually been pretty sad to see.  It is our hope that these treatments can help to bring her around to something of her former self.

To help ease some of the load on her heart, and possibly some of the edema (which actually hasn't been bad lately), the cardiologist has started her on Lasix. You can find more on that drug here - http://en.wikipedia.org/wiki/Furosemide.  In short - it's a diuretic.  If we can ease the load on her heart, then the thought is that it may in some way help with the regurgitation.  Go here to find out more about mitral regurgitation - http://en.wikipedia.org/wiki/Mitral_regurgitation.

For the past 5 days, we've been dealing with a Peyton who is not herself.  She doesn't look well.  I emailed the Cardiologist today to give him a heads up as to what has been going on with her lately in case he wants to expedite the treatments he has in mind.  She is lethargic (she's been sleeping since before 4pm and it's 7:50pm now), she's irritable, she has had diarrhea for 4 or 5 days, and so on.  The home nurse today is concerned that she has c diff.  You can read up on that here - http://en.wikipedia.org/wiki/C_diff.

I am so tired right now. Every time I feel like I've reached a new level of exhaustion, something changes and I reach a new level...again.  Today began with the suspicion of c diff.  I already have had increasing levels of concern about Peyton but once that happened, I became even more concerned.  I wasn't sure if this would entail a trip to the ER or to the walk in clinic or what we would need to do.  The nurse called the doctor's office (they are open 365 days with weekends being "walk in" from 9:30-noon) but they didn't have their phones taken off the answering service.  We didn't get through til almost 10am and then the nurse left a message with the nurse at the office to see what we were to do.  Finally she had to call them back at 10:50 to see what the answer was.  Ron, Moira and I usually go to the 9:30 service at church on Sunday, so we were unable to go.  At 10:50, we were going to have to be leaving to catch the 11:15 service.  I wasn't sure if we'd get to that either.  The answer wound up being that we had to go get a probiotic for her.  We left, worried about Peyton.  By the time the service began, I was really teary.  Fortunately, I could hide that behind the powerful emotion of one of our pastor's spoken word dialogue and a very powerful video about one of our church's family's adoption journey and new ministry as this was Orphan Sunday.  Normally I am into the music and worship and all that, but today I just wanted to sit and cry.

I'm just concerned and I'm not sure what is going to happen in the coming days or so.  I will keep you posted.

There are many people at church who have been providing meals for our family since Peyton came home.  You can't even imagine how grateful we have been for your support.  We've had some very delicious meals thanks to you ladies!  Thank you so much!!

I will keep you posted on how this week goes.

Nothing New

I wanted to write a quick update here just to say that there is nothing new to report. I had a couple comments from people because they hadn't seen one in a couple days. Honestly, we are just in a holding pattern while we wait on lab results from tests done on the weekend. We are also waiting on the neurologist here to confer with the geneticist I'm Boston. Hopefully we hear something soon. I think Peyton is pretty close to being able to go home otherwise.

Not Well At All

This morning, Peyton seems to be a little worse.  When I woke up, she was covered in multiple blankets.  Her temp was apparently low overnight (low 96's).  She's been wearing bipap continuously the last couple days.  She was going to be going down to xray, so she was switched to a nasal canula for transport.  When I took her mask off, we noticed her face was very puffy.  She's also pretty lethargic today and her mouth is pretty dry.

We went down to xray, which turned out to be a non-event.  Whatever was ordered was apparently called off for now, so after getting her all situated on the xray table, with oxygen tank and hooked up to the monitors, we had to get her back into her crib with all of that stuff to head back up to her room.

The doctors were by this morning.  While they were out in the hall, I had to suction Peyton.  What I got out was unreal.  Her secretions are SO thick they are almost solid.  There are mass quantities.  They are also darker yellow now.

She is not as well today as she was yesterday.  We don't know what is going on.  I am trying to be strong, but this is unreal.  I don't blame the doctors for not knowing what's going on with her.  They are doing all they can with what they know.  She's on 3 antibiotics.  She' s on IV fluids.  I don't know that there is more that can be done but I just wish we knew what we were dealing with!

Dermatology is supposed to come by to look at the rash on her hand.  Cardiology is now being consulted because of the edema (face/feet).  Infectious Disease is still weighing in.  GI is on board because of the bleeding from the j tube.  She's on the Peds service, although the PICU docs were there for her last week and they are aware of her being in the stepdown, not to mention that they were there for her endoscopy yesterday.  Ortho consulted regarding her dislocated shoulders.  Neurology has been involved as has Neurosurgery.  And Pulmonary is also involved.  That's 10 specialties in case you didn't take the time to count.  11 if you count the Dietician.

So, I would say that they are covering all their bases.  I wouldn't concern yourself with thinking that they aren't doing everything they can at this point!  :)

As always, I will keep you updated.