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 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.

Update

I just wanted to give you an update on Peyton.  She's still on the two IV antibiotics at home.  That said, she's still sick.  On Thursday/Friday she was still having low grade fevers and was extremely junky sounding.  I think maybe there's been some slight improvement over the weekend, but not a tremendous amount.

I just posted a prayer request on our "Sisterhood" (women's ministry) facebook page.  Pardon the cut and paste:

"I need to ask for HUGE prayers for my daughter Peyton.  If you know me/her, you know our story.  If not, her CaringBridge page is www.caringbridge.org/visit/peytonfontenot.  She's had pneumonia for a little over a month.  After 2 regular "oral" antibiotics failed, they switched to IV antibiotics at home.  She's got an indwelling port, so she is able to have IV antibiotics at home.  The first round of those failed so they added a second IV med on top of the other one.  She's still sick and basically tomorrow is the date where I have to talk to the doctor's office to give them the update so they can figure out what's next.  She's already on 2 very strong IV meds so I'm honestly not sure what the "what's next" would be!  To top it off, we are supposed to be heading up to Boston to go to the Children's Hospital for some very much needed second opinions.  If she's on IV meds, we can't go.  If she comes off antibiotics altogether, at this point it's safe to say it won't be long til she's really sick again.  "Oral" meds aren't going to cut it.  So basically we need a miracle - a huge "sun stand still" prayer so that we can make this trip.  As it looks right now, the chances of us making the trip seem to be getting smaller and smaller by the day.  As it is, we are very afraid of what a trip like this could do to her.  I would ask that you join me in praying for her healing and for guidance for us.  I know it's all in the Lord's hands and I know He can heal her and give us the strength we need to get through this.  Thanks ladies!"

That's essentially where we are at right now.  It's not a good place to be in.  She needs to be healthy, first and foremost.  The Boston trip ideally needs to happen.  I know her PT here and her school providers are basically waiting to hear how the Boston trip goes so they can figure out how to best meet her needs here.  If we don't go, then I'm not sure what that means for Peyton here.  I'd love to know if there was a way we could send documents up to Boston and have an appointment via skype or something.

After over two weeks of Peyton needing round the clock care, including administration of IV meds through the night, I am worn out.  I'm worn out from the stress of a horrible nursing situation.  If we have one more nurse leave....  Peyton's hours were temporarily increased to 84 hours a week for the past couple weeks (up from 56), but before you get too excited, she lost 20.5 hours last week because of poor ability to staff our case.  The nursing situation has been beyond stressful for me.  Peyton's health alone has been very stressful for us.  I am sure that on some level there is a correlation between her health and the insufficient home nursing support we are getting, although her health is poor in general.

I just ask for lots of prayers for her and for us.  I am personally tapped out.  I'm beyond exhausted.  I'm getting only a couple hours of sleep a night - and that's not always a couple consecutive hours.  I have to be "on" 24 / 7 and I'm so beyond "done" right now.  I need prayers for strength right now.  The last thing we need is for me to suffer some sort of health issue because of this!!

Thank you all for your support.  I've had a great many people helping us out via play dates for Moira and bringing meals to our family and you have no idea how much this has meant to us.  Thank you so much!

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.

Still In the Hospital

We got up to a room around 1:15 or so this morning.  It wasn't until about 3:30 that the activity in and out of the room died down enough to get some rest.  I woke up somewhere between 6:30 and 7:00.  Can't say those few hours were very restful, but I am grateful for a little bit of sleep.

Peyton's feeds were resumed sometime during the night, which is good because they'd been stopped around 6:30pm yesterday.  She is receiving the IV antibiotics through the regular old fashioned IV line that, thankfully, is STILL working.  She has a horrible history with having IV's placed and staying good!

She was to have a port study done today in interventional radiology.  It was done around 1:00pm or so today.  We were taken to the heart and vascular center - not just peds radiology where I had assumed we'd be going.  We've been to this place once before when she had a bronchoscopy a while back.  It is like the arctic down there!!  The "suites" are like an OR but they have all the radiology equipment in them.  I suppose they do some procedures down there that require it to be more of an OR type setting.  I snagged a pic of the room on my cell phone after the study was over.  I actually wasn't allowed to stay, so  was escorted to the waiting area and waited a brief time.  Long enough to flip through a May 2012 issue of People magazine and discover just how haggard some of the big time movie stars have gotten to look lately.  And Robin Gibb was still alive, per this issue (he actually did pass away 5/20/12, obviously after the issue ran).

Anyway...

They came and got me when it was over.  Basically, they access the port with a needle (like what we'd use normally for accessing the port) and ran a dye through it.  First of all, they use "live" xray to guide them so they are 100% sure of where the needle is going - making sure everything is properly positioned.  Then they run the dye to see where it goes.  Everything went well and they were able to leave her accessed with the needle.  Now, she still has a lot of puffiness from the whole issue of the meds not going into the port, but rather under her skin.  That will eventually clear up as the body absorbs everything.  When we got back up to her room, the nurse started up her IV (regular IV, not the port), but her next dose of the antibiotics will be run through the port.

Peyton's surgeon just came to see us.  He checked her out and felt around the port to feel how it felt.  Does that make sense??  To see how well-in-place it was, I guess.  He explained to me that the port itself....

wait...let me back up.

Go here: http://en.wikipedia.org/wiki/Port_(medical)

Look at the top picture on the right.  The round metal thing is the "port".  THAT is what is permanently placed in Peyton's chest.  It is connected to a catheter that runs through one of the veins or arteries (not sure which) that goes to the heart.  Now the piece that you see poking down towards the round port is the needle.  Imagine fatty tissue/skin between the port and the top of the needle.  With a port, as you see, the needle is inserted straight down at a 90 degree angle to the plastic top of the needle, whereas a regular old IV line is just one straight piece.  See the difference??  The needle goes into a thick rubbery type stopper piece.  Once the needle's in place, it's firm.  It shouldn't fall out.  It's in place.  It would take a pretty good movement or bump to knock it out.  OH, and the back side of the port is metal.  The needle cannot go through it on the back end

Ok, got it??  Port lesson complete.  If you have any questions, I can try to answer!!

Ok, so the surgeon was explaining to me that the port itself is sutured in place with non-absorbable sutures - it's sutured to the muscle.  But sometimes it can come loose or be brought up somehow.  He also said that in children (she would have been 3 when she got the port) he had been using a smaller low-profile port.  He's going to look up her records to see if that's what was used, but by feeling around, he thought it probably was.  With growth (she's now 6), it may be that the smaller low-profile option isn't the best option for her now.  He said that about half the time when they bring people in to interventional radiology with this problem, it winds up as our situation did.  The other half, there is something wrong that requires surgical intervention.   He basically gave no guarantee that this wouldn't happen again (and I totally get that!) but he thought for now we'll leave things the way they are but she will probably have to be "upsized" to the non-low profile port.

So, for now, we are still at the hospital. I am sure they want to get her meds running through the port and make sure that everything is running smoothly with no additional problems.  Otherwise, she's had some REALLY thick secretions today causing her to gag and throw up a couple times.  The respiratory therapist was concerned about the secretions because the suction machine actually couldn't keep up with it!

It's after 4:30 now.  Nothing has been mentioned about leaving, so I'm confident we're in for another night.  Besides, the respiratory therapist was asking the schedule for her to go on bi-pap and they brought in a pulse ox monitor.

Ok...scratch that...the nurse just game in.  The doctor wrote discharge orders, so we'll be going home tonight!

We Just Love the ER So Much

So Peyton was admitted on the 4th and got to go home on the 5th.  She went home on an antibiotic and seemed to improve a little after a few days.  However, last Tuesday she started getting sick again.  She could have gone to the ER but we were able to get right in to the pulmonary clinic.  We spent several hours there, but eventually were sent home and Peyton began a 2 week course of IV antibiotics.  This is possible to do at home since she has a port.

She has been improving a bit more on the new IV antibiotics. If you follow me on facebook, you will know the absolutely ridiculous schedule I am having to follow for these meds.  I'll go into that another time.  Anyway, last night (Sunday), I couldn't get the line to flush properly when I went to hook up her meds.  Long story short, I eventually began her meds and about 10-15 minutes later noticed a large wet spot on her shirt.  Not good.  Not good at all.  I took her shirt off and the port had infiltrated, meaning that the needle probably dislodged somehow and the fluids were going directly under the skin and not through the port into the vein.  The skin all around her left chest/armpit area were totally puffy and very irritated looking.  This meant a DEFINITE trip to the ER.  I'm actually typing this in the ER at 12:37am Monday.

Surgery came and had a look.  She will have a port study done Monday (today) - they will access it and inject a dye to see how it flows.  The xray done earlier showed the port to not be quite in the right position, so there is a chance there's a problem requiring surgical intervention.  Hopefully not.

No port access means no meds.  They had to start a regular IV.  Fortunately they were able to start one on the first try.  She has horrible veins, so this is a miracle.

Please pray for all to go well with the port study and that no surgery will be needed.

Will keep you posted.  If you follow me on facebook, you'll get more frequent updates as things progress.  www.facebook.com/sarahfontenot

Greetings From MUSC!

Peyton's still here in the hospital.  She is improving though.  The doctors rounded already this morning and they think she is sounding a bit better, but needs some more time on the IV antibiotics that she is getting (there are 2 different ones).  She is having an awful lot of really thick secretions, so they are going to talk to the pulmonary doctor about decreasing one of her meds for now.  It helps manage the secretions, but it also thickens them.  If they can decrease temporarily, then maybe what she's coughing up will be easier for her to manage.  They are also going to talk to the doctor in infectious diseases about switching over to an "oral" antibiotic (to be given through her g-tube of course).  If all goes ok today, they would probably switch her over tonight.  She is a bit anemic, so they are increasing her normal daily dose of iron.

Please keep praying for Peyton.  If all goes well there is a possibility they could start talking about her going home tomorrow.  

Thanks!