Friday, August 24, 2012


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.

Wednesday, August 22, 2012


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! 

Tuesday, August 21, 2012

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

Friday, August 17, 2012

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:

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.

Thursday, August 16, 2012

Boston - Day 4

We had our 5th appointment of the week today.  As with yesterday's appointment, this was not one that was booked before we arrived here in Boston.  The pulmonary doctor here at Children's Hospital Boston suggested that we see a doctor in their sleep center.  He is another pulmonary doctor specializing in sleep disorders.

Once again we found ourselves obtaining some very valuable information at this appointment.  I said to Ron it's funny how we came here primarily for orthopedics, but it's all the other appointments (planned and not planned) that we're getting the most useful information from!

The reason for this appointment was to discuss the use of Peyton's bipap at night since it seems to be an area of trouble lately.  We aren't having much success with her sleeping through the night with it on anymore.  If she does fall asleep with the mask on, more often than not, it's only for a couple hours and then we need to remove it because she's woken up in distress.  We were wondering if it is possible to put her on a sedative to help relax her.

We were with the doctor for a long time as he offered some suggestions.  Some were medication suggestions (in place of a couple she is currently using) and also the addition of a chin strap to her current bipap mask.  We should also be using humidity with her bipap (and even with her nasal canula if we are unable to get her to wear the mask).  Back in the beginning of her bipap wearing days about a year or so ago, someone had suggested not using the humidity.  Why, now, I'm not sure.  It's actually (I believe) in the original doctor's orders to do so.  

I will be touching base with the doctor back home again so that he can contact this doctor so they can discuss the suggestions that were made.

We have two more appointments tomorrow and that's it (that I know of).  We see neurology in the morning and genetics in the afternoon.  I We leave here Saturday, so I think that's about all we can squeeze in for the week.  It will be interesting to hear their take on things.

This has been a very tiring trip for all of us.  I would not ever describe this week away from home as a vacation.  Definitely not.  There is a reason why we don't take family vacations.  The last time we all went away together was in July 2010 for my mother's funeral.  It's just so difficult with Peyton.  First, there's SO much gear to bring for her and our own vehicle is not large enough anymore to carry all of it.  We're very blessed this week to be borrowing a friend's minivan so we could make this trip comfortably!  Second, it's taking Peyton out of her own environment and bringing her into a new one, risking introduction to different germs and so on.  She had a low fever yesterday and I have to say she's not herself today either.  Then there's the fact that while we are not at home, we have no nursing help, so it is extremely challenging.  We have had more than one person this week comment on how huge an undertaking caring for Peyton is.  I live it, so I think it's hard to see sometimes because it's just "life" for us.  But, yes, it is huge and we went into this week with me being exhausted from an IV medicine schedule that has me up several times during the night (this is still going on while we're away).

It's been nice to drive around seeing sites.  If you are friends with me on facebook, you may have seen the photos I've posted.  But nearly every picture is taken from a moving vehicle.  There's no real sight-seeing.  No meals out in a restaurant.  Ron's taken Moira out a couple times just to get her out of the hotel doing something different.  She's become fascinated by Lego for some reason, so he found a Target last night where he bought her a couple little sets so she could have something different to do.  But I would strongly hesitate to call this a "family vacation".  It is not.  I think if there is a need to pursue medical opinions out of town again, we'd have to weight our options very carefully before undertaking this again.  As for a family trip in the future??  I wouldn't be holding a room for us anytime soon.  It's a sad realization, really.  As we near the end of summer (school starts on Monday), I'm seeing all kinds of pictures and posts of everyone else's summer vacations near and far and it's sad to think that that wasn't the way life is intended for us to be as well.  To be honest, that's not the only sad realization we're taking away from this trip.

I will keep you updated on tomorrow's appointments, but if you don't come back here before the weekend, please keep us in prayer for safe travels home.  We leave Saturday morning - very early is the hope.  We will be making fewer detours on the return trip.  I think we're all anxious to be home in our own environment, even if it means returning to a home that was left in a state of chaos from all the pre-trip planning....even if it means returning only to move in a few weeks.  Yep.  We're moving.  Hadn't mentioned that here yet I don't think.  We aren't moving far, but a move is a move.

Wednesday, August 15, 2012

Boston - Day 3

Today was supposed to be an "off" day - no appointments.  However, the pulmonary doctor here wanted Peyton to be seen by their PT group regarding her "Smart Vest".  This is a vest that she wears which is hooked up to a machine.  It vibrates at a certain frequency for 10 minutes and then increases in intensity for another 10 and again for another 10.  It is to help break up any junk that is in her lungs so she can hopefully get rid of it.  The doctor wanted to make sure that the settings we are currently using are appropriate for her still.

Today we met with the PT and we found that the way we are currently doing things with her is actually very good.  We're definitely using the same frequencies that they would have recommended, so that is good.  She did, however, make some suggestions regarding the number of times per day and the length of each treatment.  We can try doing shorter treatments more often during the day.  We also have a "cough assist" machine which she said we should try to use more frequently as well.  In addition, she gave some suggestions for how we should be combining her breathing treatments with the smart vest treatments.  It was all very good information.

Today was a rainy day here, so we decided that Ron would drive us over and then he'd drive back to the hotel (1 block over), park, and come back.  Well, that didn't go as planned.  First of all, the garage at the hotel is VERY small and it is not limited to hotel guests.  There are no handicap spots and no elevator in the garage (it's only a few levels, but still) - it's not the best set up I've seen.  When the spots are full, they keep allowing cars in and they just park anywhere in the traffic lanes, starting at the top of the garage.  We were on the 2nd level and there was a car parked in the lane of traffic blocking us from getting out.  Fortunately the garage keeps the keys for these vehicles and they moved that one - it took a while though.  We pulled out of the garage and hung a right, but you immediately have to get one lane over and you have only a few car lengths before the light, which was red.  The right lane is a turning lane and we had to go straight.  Finally got into the appropriate lane and through the light only to come to a stop.  We then had to get back into a new right hand lane so we could hang a right into the drive leading up into the circle that is in front of the hospital for valet and drop offs/pick ups.  The line to get in was backed up that whole block and wasn't moving.  By this time, it was not raining and we could have walked after all, but now we were committed to the drive.  We left (we thought) in plenty of time but we didn't get to the front of the building until a few minutes past 10 (the appointment was at 10).  I went up to check in while Ron went back to the hotel with the car (the parking situation was worse when he returned).  We were called back into a room before Ron returned, so he wound up waiting in the waiting room for us and wasn't able to be in the room with us since the receptionists didn't know where we were taken.

Aside from all that, Peyton is running a low fever today and has had two big long naps.  Ron went out this afternoon to a nearby laundromat (note: "nearby" in Boston does not mean quick as noted above).  We packed enough for the kids for the 9 days we're gone and Ron and I knew we'd probably have to do some laundry for ourselves.  Peyton's latest round of diapers are the correct size, but the manufacturer either had a malfunction or they've reduced the size but are still labeling them as the same as they always were (these are the ones that medicaid allows for her - not a known name brand), so she's been leaking like crazy.  We've gone through almost all the pants we packed for her and we still have to get til Sunday!  Laundry was a necessity.  There isn't a coin operated facility here in the hotel, so Ron located a laundromat near the hotel over by Boston University.  We have clean clothes again!!  Woohoo!!

Last night Ron picked up food from a local "hidden jewel" (per one website) called The Squealing Pig.  They had a lot of pub fare.  I had awesome fish and chips.  We split a dessert - a Mars Bar Toastie.  It was 2 Belgian waffles with a melted Irish mars bar and bananas in between with strawberries and fresh cream on the side.  OH MY!!! It was SO delicious.  If you are ever in the area, I highly recommend it!!

No sight-seeing today.  We're all pretty tired and Peyton isn't herself today.  She cried and fussed the whole time we were with the PT today, so I knew she wasn't feeling well.

Tomorrow we see the sleep doctor about her bipap, so I will update about that tomorrow!

Tuesday, August 14, 2012

Boston - Day 2

Today was the day to see the Pulmonologist here at Children's Hospital Boston.  This was an appointment that was more of a "just because we're here" sort of thing.  However, the appointment turned out to be really beneficial.  In fact, I think it may actually prove to be more helpful to Peyton than the Orthopedic appointment in the long run!

The Pulmonary doctor was very nice.  We spent a LONG time with him.  Lots of history to go over.  In a nutshell, he said that he would love to try to see her back at her baseline before all the illnesses - she may have the potential to get back to there if we can recreate how things were before all the illnesses.  He said a trach is an option he would not take off the table entirely, but would not do right now.  Remember, though, that this is something that we have long been opposed to for many reasons.  He said the benefits would be mainly for airway clearance and that it would not entirely remove the possibility of aspiration.  He had some suggestions as far as medications.  The doctor also said that with everything going on right now, he would definitely recommend a bronchoscopy.  He recommended a chest CT scan.  She has not ever had one before, but he said that she would have to be in her "best" health once she gets past this illness just so we could have the best understanding of what's going on.

As a side note, in a previous post, I mentioned that Peyton's Cardiologist back in Charleston wanted to do a heart cath if there was ever a time coming up where Peyton would be having another procedure under sedation.  It wasn't something he'd just jump into in and of itself.  So, if Peyton does wind up having a bronchoscopy, she will likely also be having a heart cath.  Also note that none of these is being done in Boston.  The bronch was a recommendation for her doctor at MUSC.

We are being set up with a therapist tomorrow morning so we can go over her Smart Vest - she will take a look at how she tolerates the current settings and possibly look at how the settings can be increased (if at all).  They are trying to get us in with their Motility group while we are here.  We also have an appointment at a satellite office in Waltham, MA with a sleep doctor.  This is so Peyton's sleep study can be reviewed and we can make sure everything with her bipap is set up as it should be and that her mask is a proper fit/type.

The Pulmonary doctor today was extremely helpful and he is happy to discuss the matters we discussed today with her doctor back in Charleston.  I've already been in touch with them and have passed along the doctor's information so they can get together and discuss everything in far more detail than I could ever do.

This afternoon, we took a side trip to Salem, MA.  We went to the Witch Museum which Moira described as being "horrible...for a museum."  Sigh.  She would rather have gone to the Ansel Adams exhibit at the Peabody Museum across the street.  She's 8.

Today is also the 11th anniversary of the loss of our son.  I blogged about that:

We typically order in a nice dinner and have a cake in his honor.  It's a little different this year since we're not at home.  Ron's off on a walk to grab a nice dinner for us and we will be trying that restaurant's specialty dessert - a Mars Bar Toastie - Irish mars bar, belgian waffles, bananas, fresh cream and strawberries.  Oh. My.  I will have to take pictures.

I will keep you updated as the week goes on!

Monday, August 13, 2012

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'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!

Friday, August 10, 2012

Have Minivan Will Travel

Our trip to Boston is a definite "go"!!  

It's a little nervewracking thinking of how Peyton might handle the trip, but it's on and we're just so anxious to get there.  We would appreciate prayers, particularly for Peyton's ability to handle the very long drive well.

Despite Peyton's continuing illness, we are able to see so much goodness in our lives this week.  God has certainly been showering blessing upon blessing on us.  It's stuff that can't be overlooked.  

A fellow Seacoaster has swapped vehicles with us for the week, allowing us to have a minivan to travel in.  Honestly, I have NO idea how we'd have gotten all our gear into our vehicle now that I'm in the midst of packing up!  I'm sure we'd have done it somehow, but it would certainly look a lot different and would not wind up being nearly as comfortable!

A fellow blogger took it upon herself to organize a fundraiser for our trip through a post on her blog:

I share that not as a way of seeking donations {I am not!}, but as a way to show you the hearts of some of the people in the blogging community.  This was not something that I sought out but it has turned into a real blessing for us as we head into this trip.  The generosity of people amazes me.  People's comments below that blog post moved me to tears, as did the donations received.

A couple ladies from church organized meals for our family for the past few weeks.  I was seriously amazed, overwhelmed and in awe of how a church community pulled together to help us out.  I knew a few of the people who brought meals, but many people were not people I'd previously met.  After the 10 days of meals (per the schedule they created) was up, these ladies still had people emailing or calling them asking if they could help, so we had meals this past week as well.  This seriously blessed us because I have been so exhausted with Peyton's IV med schedule that the last thing on my mind was meal planning and preparation.

We also have another group who has been providing meals for us on Sundays, which has been a real blessing for us.  Again, it's not something we sought out, but people felt a desire to help and it is so appreciated by us.

So, I sit here in my apartment which looks like a tornado hit it.  Between Peyton being sick, life happening (or not happening), laundry, planning for this trip, and school about to start, it's a disaster.  I'm always a tad embarrassed to let people in because I keep thinking about what my mother would have thought of the state of my place!!  It's not passing any inspections right now! :)  Hopefully the people passing through have managed to silently extend me a little grace on this matter!  My apologies if you have witnessed this mess - I'm normally not like this!!

We've packed all we can pack for now.  There's so much stuff Peyton needs for her morning routine that it can't be packed.  I've done as much as I can in terms of prep for what the morning will bring, but I think I'm about done for now.  We hope to get on the road fairly early.

I'm really excited about seeing a friend tomorrow as we stop in Virginia for the night.  Then Sunday it's on to Boston.  Somewhere on this trip - either Sunday or next weekend - I hope to see one of life-long friends, Heidi, who lives in the Baltimore area.  As we will be passing right through there, it would be a shame if we didn't get a chance to stop.

Please pray for safe travels for us and for Peyton's health.  I'm really excited at the opportunity to have these appointments next week.  Hopefully we receive some good news.  I realize, though, that it is possible we don't get answers we were hoping for, but I'm praying that that is not the case!

Thanks again for all your love and support!

Wednesday, August 8, 2012


We had a bit of a set back in our plans yesterday.  Peyton had been going so much better - not 100% but better - Sunday and Monday.  She woke up Tuesday, however, and it was the exact opposite.  She had a fever, was really junky, and just not feeling well at all.  Fortunately she had a pulmonary doctor appointment.  This is the appointment that everything for our trip to Boston was hinging on.

The doctor checked her out.  There were enough concerns to warrant putting her back on the two IV antibiotics - for two weeks.  Great for Peyton.  For me....well, it's been exhausting for the past several weeks...what is another 2 weeks gonna hurt, right??  Oh Lord.

We talked about this trip to Boston.  His feeling was that if she seems to be doing "ok" in the next day or two then we should be alright to go especially since she's going to be on these antibiotics still.  He was actually very encouraging and supportive of our plans to go up there.  I felt like he was saying that we have this narrowing window of opportunity to get up there to hopefully get some answers, so we need to try to do whatever we can to get up there.  

This morning, Peyton seems to be starting out the day a little better, so that is very encouraging.  I guess I will start pulling things together for a trip north!!

Thank you SO much for all your prayers and support.  I really mean that.  It makes such a difference.

Sunday, August 5, 2012

Things Are Looking Up!

I am SO happy to report that Peyton finally turned a corner just a couple days ago!!!  The first day was good, the next a bit better, and then today she did well.  She's not 100% - but it's exciting all the same.  She has been in much better spirits the past couple days.  She has more smiles for us, which is awesome.

Peyton is still on IV antibiotics.  She has the midnight dose tonight, 8am and 4pm tomorrow and then one last midnight dose.  So in about 28 hours from now, she will be finishing up her last dose of both IV meds.  I'm excited but cautious.  As I said, she's improving but she's not 100%. We're excited, but we have to remain a little cautious because she can backslide so quickly.

She sees the pulmonologist on Tuesday at 10:45am.  This is great timing since it's just a few hours past what would have been an 8am dose of meds Tuesday (which won't happen since they end with the midnight doses that day).  We'll see how she does.  I have confidence at this point that we can do the Boston trip!!

Don't get me wrong, traveling with Peyton is going to be very far from easy.  I've already started to write out a plan of exactly what medical supplies we will need to bring (I keep a schedule of the rotation of supplies, so I have to know what is being changed out and on what days while we'd be away).  I'm also going through a mental checklist to see if I've left anything off the list.  I'm sure I have.  We have a Ford Edge.  Not a huge vehicle (certainly not tiny, but not huge!) and we have to fit a wheelchair and all our stuff.  We have to fit a wheelchair, an oxygen concentrator (bigger than a carry on bag but not as big as a full sized suitcase), 2 carry on size bags containing her smart vest equipment, her bipap machine, her nebulizer, a case or two of pediasure, her feeding pump, all her medical supplies that will need changed out (probably in a carry on bag), all her prescriptions, one of those electric cooler things that plug in to the car because she has meds that require refrigeration.  All of that and more.  And I haven't even gotten to her clothes yet.  Or OURS (and Moira's)!!  Maybe you need to pray that our Ford Edge turns into an Expedition before Saturday!!!  It would be so awesome to have something BIGGER to drive up there with.

I believe that the gates of heaven have been stormed with prayers by countless individuals.  I believe that it is only through the power of prayer that, right now, I can be saying that I have confidence that we can do this trip.  I am nervous about traveling, but I trust in Him - He has gotten us to this point and He can take us further!  Peyton is doing SO much better and very quickly.  As for me, I'm still exhausted, but that feeling of being at the end of my rope and beyond my capability to continue caring for her at home is gone.  Recall we were considering not that long ago the possibility of having her admitted because of her health and because of how I was feeling as well.  Don't get me wrong...I'm far from feeling like this is a walk in the park.  But I'm not at that breaking point right now.

Thank you all so much for praying for Peyton and our family!  Keep the prayers coming.  I will update with the outcome of the doctor appointment on Tuesday!