Bronchoscopy

Peyton had her bronchoscopy done this morning.  It went very quickly.  It will take 3-5 days before any results come back.  She did really well and is home now.

Update

Peyton's bronchoscopy will be at 7:30am on Friday this week.  Since she is not 100%, as I mentioned previously, the pulmonologist does not want her to have the heart cath at the same time.  It is just the bronch.

Peyton's IV meds ended late last night.  Around 4am this morning, she was fussing and it woke me up.  I was shocked to see that her heart rate was 177!!  While asleep, it's generally 85-95ish.  She had a bit of a fever.  I emailed the pulmonary clinic here this morning.  Throughout the day, she was not feverish, but her heart rate continued to be between the 130s-150s (usually one-teens while awake).  We aren't sure what's going on.  Apparently a her hemoglobin and hematocrit were really low before we went to Boston.  She was also more anemic than usual.  However, nothing was suggested to us as something to do for this.  I don't know what the numbers were or how low was "really low".  The antibiotics for so long might be to blame for this.  Or she's still sick. Or both.

We just aren't sure what's going on.  She is definitely not better.  She's not the worst I've ever seen her - not by a long shot.  But she's definitely not well.  It's clear that these antibiotics, even the hard core IV antibiotics, just aren't cutting it.  It is possible that she may be admitted if she continues to get worse. The nurse in the pulmonary clinic suggested this might happen.   I am not sure if or when this would happen, but I'm almost thinking it's a possibility Friday - but I haven't been told that.  It's just a feeling I have if she is not any better.

I just feel so badly for Peyton.  She can't seem to catch a break.  So far, she has not begun school.  She is on homebound, so they come to her.  But it's just as well.  Her daily routine right now leaves absolutely no room for anything additional.  I have no idea how we'll fit this in when it does start!

Anyway if you could pray for Peyton we would very much appreciate it.

Thank you!  I will keep you posted! 

Home Again!

We made it home safe and sound from Boston on Sunday evening!  We experienced a lot of heavy traffic and some rain, but we made it home.

On the drive on Sunday, we had a call from the Geneticist Peyton saw up in Boston.  He's apparently been doing a lot of homework on Peyton since we left, and he had some information for us.  He was wanting to send an email with a couple lab requisition forms attached.  Peyton needs some labwork done.  We'd banked her DNA in Boston, so there is actually one test he wanted to have done which he already has her blood for.  He will handle that.  She needs to have some additional bloodwork and a urinalysis.  He would also like for her to have an abdominal ultrasound.  One of her issues is that her heart is situated more centrally than normal.  The doctor is wanting to know how the rest of her internal organs are situated.  Also, he is wanting to take a look at some additional medical records - mainly ophthalmology and audiology.  I took some time yesterday to scan and email to him all the ophthalmology records that I have on hand.  I need to send the audiology records now.

There is a potential diagnosis this doctor has in mind.  I hesitate to say what the diagnosis is just now because it's a theory.  And it's NOT a diagnosis.  Not yet.  Perhaps not ever.  I don't want to raise hopes or have people looking up information on something that may not necessarily be yet.  We've been down this road before with "potentials" that didn't wind up being what she has.  But to give some information, the one this doctor is looking into has something to do with a brain/eye/muscle disorder.  Ron and I have already read up a little on this disorder and it does sound very familiar.  However, there are parts that don't sound so much like Peyton.  So, now we need to look into how to get these other tests done and results sent up to Boston.

Peyton is getting kind of junky sounding again today.  She is still on the IV antibiotics for a little longer, but she should be getting better.  The pulmonary doctor here is going to do a bronchoscopy.  It may take place on Friday.  There was the thought that we'd get cardiology to do the heart cath during the same procedure so she wouldn't have to be sedated twice.  However, the pulmonologist doesn't know that that is such a good idea right now when she's not 100%.  We'll see what happens.  Either way, she will be having the bronchoscopy this week.

Moira started back to school on Monday.  Not much rest between getting home from Boston and her going back!!  She's in third grade and is pretty excited about it.  It's a little different this year for her.  She has two teachers.  Each teacher teaches a few of the subjects - the kids spend the morning in one classroom with one teacher and then in the afternoon they move across the hall to the other teacher.  Her afternoon teacher is the same teacher she had for first grade, so she is extremely excited about that.

Between loads of laundry, I'm trying to rest a bit.  I was exhausted before this trip.  A week of no nursing help took a toll on us!  We'll be moving in a few weeks, so that'll be fun!  I'll be sure to book plenty of nursing hours around the move!!

I'll keep you posted on how Peyton's procedure goes later in the week!  If you want "less clinical" updates on our trip to Boston, I've been posting some daily recaps on my blog http://fontenblog.blogspot.com

Boston - Day 5

Today was our fifth and final day of appointments for Peyton at Children's Hospital Boston.  She had two appointments - Neurology and Genetics.  Both of these were in the vein of "since we're here we might as well see them".  I am very glad we did!

First let me say that I have no problem at all with Peyton's neurologist in Charleston.  As for genetics, I loved our doctor in Houston and wish he was still her regular doctor.  MUSC just isn't as advanced as the bigger hospitals.  

At the neurology appointment this morning we went through Peyton's history and we pretty much decided to discuss the pain management issue as well as the possibility for some sort of sedative for Peyton at night since she's having an increasingly difficult time getting on and staying on bipap at night.  She has been taking oxycodone for her chronic hip pain for about the past month.  It does seem to help, but long term, it's probably not a good option because it is a respiratory suppressant.  This isn't good for someone like Peyton who has chronic respiratory illness!  The doctor was able to suggest something which, over the long term, will be better for her.  I have already been in contact with Peyton's neurologist back home and gave him the medication suggestion.  We will see what comes of that.

The genetics appointment was LONG.  We were at CHB for about 3 hours!  At least 90% of that time was spent WITH the doctor.  He was impressed with the doctors we have already seen in genetics (Houston).  He basically said it doesn't get much better than that.  He took Peyton's ENTIRE history.  He examined her.  He also took family history - our parents ages/any medical issues, death/age at death/cause of death, our siblings/their children/any medical issues, any random medical issues in the family, history of illness, etc.  He measured our (Ron and I) heads.  Turns out Ron and I both have large heads.  Yes he did actually comment that I have a large head...for a woman.  Nice.  :)  He gave a suggestion for a genetics clinic that is in South Carolina - we actually have an appointment in September with one of their branch offices.  However, he said he would NOT go to one of the branches, but go right to the "mother ship", which is about 3 hours from Charleston.  I think I will be looking into relocating our appointment.

The most recent genetics testing that Peyton has had was done about a year or so ago.  He suggested that at some point perhaps we should redo it as the testing process is becoming more enhanced.  We discussed a test which is part of a research study at CHB.  We had Peyton's blood drawn so they can basically bank her DNA.  This way if they decide to proceed with any testing through CHB, they will already have her blood.  The doctor is going to present her case next month to a committee that will determine if Peyton is a candidate to be a part of this research study.  If she is, they will need blood from both Ron and I.  We can do that in Charleston and have it sent up apparently.  If she becomes a part of the study, though, it is going to mean that one of us (not Peyton) will have to come back up here because there is a very lengthy consent process to be a part of the study.  Then when the results are in (again, if she is approved for this study), we will have to come back up.

There obviously aren't any answers on the genetics front, but it is great that we have another set of eyes looking at Peyton.  The doctor took a variety of pictures of Peyton and he will use those when he sits down with his colleagues to discuss various cases.

This week has been very tiring.  So many appointments packed into just 5 days.  I feel like we've been here two weeks or more, not just one.

Now that all the appointments are over, we will head back to Charleston and bring with us all the knowledge we gained so that we can discuss everything with all of Peyton's doctors back home.  I've already been in touch with a few and, in fact, have heard back from a couple already.

I have to say that if you are ever in a position where you need a second opinion (and, my God, I really hope you do NOT find yourselves in our position!), our experience with Children's Hospital Boston has been outstanding.  We have been extremely impressed with the facilities and, of course, the physicians.  We actually had the experience yesterday of traveling a short distance to Waltham, MA to see one of the doctors in one of the CHB satellite offices (this was where he was going to be IF we wanted to see him while we were here).  All the facilities we visited were outstanding.  We encountered volunteers in the Orthopedic clinic who really went out of their way to make the kids comfortable.  Most clinic waiting areas had a variety of activities for kids to do while waiting.  The Pulmonary clinic was all decked out in displays filled with tons of Jiminy Cricket memorabilia.  The lobby area was incredible!  There's a huge aquarium, an "pond", and a musical staircase.  It's just a regular staircase that you have to go up to get to the main elevators for each wing of the hospital building (there's a glass elevator for special needs/wheelchairs/handicapped/strollers) though.  But this staircase...on the one wall there are sensors and lights.  As you go up or down the stairs on that side of the staircase, the sensors play music as you pass them.  And the lights light up as you go up/down as well.  Pretty awesome stuff.  Then they have this huge plexiglas box in an area of the lobby.  Inside, they have this amazingly intricate wire track that goes all over the place - like a roller coaster - up and down, loops, etc.  Balls travel the course of the tracks and there are various metal parts to the track which, if they tilt one way or another, will determine which path the ball will take.  They ball might bounce down a little staircase to the next path, or zip around a few loops ending in the ball being tossed through the air into a wire basket before it moves on to the next piece of the track, or maybe it sits in a wire cage until 5 balls in total are in the cage causing the cage to flip and eventually dump the balls into a bowl where they will circle the circumference of the bowl before the finally descend into a hole in the bottom of the bowl.  At various points on the tracks, the balls cause a hammer to strike a bell or chime or a xylophone key or some other "musical" object.  It is the coolest thing.  I could have stood there watching it for hours.  Seriously.

Check out these youtube links:

http://www.youtube.com/watch?v=efF0JcO6UEo&feature=related

http://www.youtube.com/watch?v=h_wy9mz3Hpk

Did we get concrete answers to anything?  No.

Did we get recommendations/suggestions?  Yes.

Was this trip worth our while?  Most definitely.

Now it's time to get some sleep because we're hitting the road in the morning!  We will be getting home on Sunday.