Boston - Day 1

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

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

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

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

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

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

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

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

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

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:

http://anightowlblog.com/2012/08/a-helping-hand-sarah-of-the-fontenot-four.html

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!

Setback

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.

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!

The Latest on Peyton

As I mentioned last time, the big goal was for us to get to Monday (yesterday) to see if Peyton would finally turn a corner with the two IV antibiotics that she is on.  I did see a little improvement in her on Sunday and even Monday for a short time.  I even emailed the pulmonary clinic's nurse practitioner and explained how things were going.  And then Peyton started with a low grade temperature...again.

Today (Tuesday) she was extremely fussy all morning.  No temperature today though.  She's wavering back and forth between being sick and being pretty sick.  There's never a point where we say, yeah, this is it, she's on the upswing now!

I've said to Ron and to others that we really need to see an absolute answer to the situation.  She either needs to improve significantly enough so we don't have to worry about making the trip to Boston in 11 days.  Or she needs to get sicker so it's clear we should not go.  Obviously we don't want the latter.  We just need for the decision to be easy - that we won't leave home second-guessing our decision - or stay behind second-guessing what might have been either!

The hardship of this week has really gotten to us.  I admit that very candidly to you.  Having a 2/47 caregiving role is not easy.  I am not superwoman.  I am not supermom.  I don't have an endless energy reserve from which to draw on.  I sincerely wish I did.  The fact of the matter is that this IV med schedule is so incredibly taxing on me.  I am pushing myself beyond my limits at this point.

Does Peyton need to be in the hospital versus being cared for at home??  Well, that is the big question right now.  To look at her, you might just say no.  Bear in mind, most "normal" sick people aren't on IV antibiotics, much less TWO of them to cover an illness...especially at home!  For Peyton, this is not the absolute sickest I have seen her.  For Peyton, she is not the healthiest I have seen her.  She's been sick for probably close to a month/month and a half now.  She has the advantage of having a port, which means she CAN have these meds at home and not in a hospital.  But having a port is not without its difficulties, as I've shared before.  She was just in the hospital a week or two ago because of a port issue.  

She's sick and she needs to get significantly better for us to make this trip.  Would she be better served in a hospital at this point??   I don't know.  There are pros and cons to the hospital, just as there are to her being cared for at home right now.  The biggest factor contributing to us leaning towards having her admitted would be my sheer exhaustion.  Yes, we have home nursing.  But for whatever reason (and it's not an issue with the company...it's home nursing in general), the RN's who care for Peyton at home are NOT allowed to handle ANYTHING to do with her port.  That means I am STILL the one handling all of that throughout the day.

Want a recap on what this means for me right now??

6am - Make sure I'm awake enough to stumble to the fridge to take the meds out.

7:20am - Hopefully I've managed to grab a shower by this time.  This is when she needs benadryl (she has a reaction to the Vancomycin called "Red Man's syndrome" - not a true allergy, but requires she be pre-treated with benadryl).

8:00am - Flush and hook up Vancomycin (IV med) to her port.

9:15am - Unhook and flush. Hook up Tobramycin (IV med) to her port.

9:45am - Unhook and flush and heparinize her port.

Next round is 2pm, 3:20pm, 4:00pm, 5:15pm, 5:45pm.

Next round is 10pm, 11:20pm, 12:00am, 1:15am, 1:45am.

I have about 10 alarms set on my phone.  Last night I woke up at 1:15.  That would be the time I'd be switching over from the Vanc to the Tobra.  BOTH meds were still sitting on the bathroom counter.  Hadn't pre-treated yet either, so at 1:15 this morning I was starting the round that would have begun at 11:20pm last night.  The bonus was that I got to stay up the 30 minutes til 1:45 when I could actually start the Vanc.  That delayed everything else and caused me to have to push back the morning stuff too.  When my alarm goes off, if I don't turn it off, it goes off every 5 minutes.  I'd slept through my alarm going off every 5 minutes from 11:20pm til 1:15am.  THAT is how tired I am.

So, yeah, there is a certain advantage to Peyton being IN the hospital.  Right now, I'm not sure that what we'll do, but it's an option to consider.

Boston is 11 days away and we're desperately needing prayers.  Is this trip ABSOLUTELY necessary - of course not.  BUT...her orthopedist here basically wrote her off a few weeks ago and wanted nothing to do with the pain issues Peyton is having.  She is having REAL issues that needed addressed by someone...and it isn't happening here.  There is so much that could (hopefully) be made better for her if we knew what to do for her from an orthopedic standpoint.  It's a long story, but if she had more muscle tone and more control over her body, her core would be stronger and maybe it would improve her respiratory health even a little.  THAT is worth finding out about.  THAT is worth making the trip.  I am afraid that if we don't get to go I will always be left wondering "what if".  THAT makes it worth praying as hard as we possibly can for this to happen.  Peyton is worth every ounce of prayer we can pour out for her so we can do our best by her.

As it is right now, she is to remain on the IV antibiotics til Monday and we'll see what happens then.  She NEEDS to be significantly better by then.

We are so grateful for all your prayers and support.  Thank you!

*Note: I should clarify something.  The trip to Boston is when it is because school starts up on the 20th.  Moira needs to be back for school.  Peyton's in school, but "homebound".  Once school starts, we can't just take off for a week.  We cannot fly with Peyton - there is too much to bring that she requires.  I cannot drive by myself with her for so many reasons.  The logistics get much more difficult after August 20th.

Still Sick

Peyton's been home from the hospital since the 16th!  She continued on the IV antibiotics at home once her port was deemed to be usable!  That was a week ago today.  Her needle needed changed today (they have to be changed weekly if the port is continuously accessed).  I did that myself!  All is going well with the port.

Peyton, however, started to get sicker the other day.  She started running a low temperature and her heart rate was starting to climb again.  I contacted the pulmonary clinic and they've decided to have her continue on these antibiotics (which would have ended Wednesday) and also add a second IV antibiotic for another 7-10 days.  So my crazy med / sleep schedule doesn't show many signs of improving anytime soon.

Please pray that she improves SOON.  We are supposed to be leaving to head to Children's Hospital in Boston on 8/11 (by car) and she needs to be well and not on IV antibiotics for the trip!  I wouldn't want to risk anything happening with the port while we are away!

Thank you so much.

Time For Another Opinion

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

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

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

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

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

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

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

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

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

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

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

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

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