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

Back At the ER...Again

Peyton had a rough night last night.  She was restless and I noticed that her heart rate was higher than normal as she was sleeping. I checked her temperature and it seemed ok but she felt warm.  First thing this morning I noticed her heart rate was quite high.  I checked her temperature and she did have a fever.  She sounded horrible.  Rather than wait any longer, we got ready and we had Peyton at the ER by about 8:00 this morning.

They did a chest xray, blood work and urine test.  Her white count was a little elevated and her xray showed a bit of aspiration.  All in all, she's not as sick as she was back in February when she was admitted; however, it made more sense to keep her overnight.  She could have gone home, but honestly, that didn't sound like a great idea.  If ever we're on the fence about whether or not she should be admitted, it's always safest to just admit her.  The pulmonary doctor wanted to see her in clinic first thing in the morning, which is just difficult getting her going that early with all her meds and breathing treatments.  It's just a lot easier all around if she remained here overnight.

So...we are back at the hospital.  Praying that she doesn't continue to get sicker and that they can get her on the right antibiotics to help her out!

Update From Trip to the ER

Peytons gj tube problems continued after leaving the ER.  Really, there was no doubt in my mind that this would be the case.  It was leaking and there was something wrong.  So, first thing this morning, I called peds radiology.  I got voice mail.  I called back a few minutes later.  I talked to the tech and explained what was going on.  He asked me to hold {and, fyi, he knows who Peyton is...we're pretty familiar with the folks up there}.  A minute later the doctor herself came on the line.  In the time it took to get her on the line, she'd actually already pulled up the films from Saturday and knew the story!  I told her exactly what was happening.  Unlike the unknown radiologist who read the films on Saturday, this one said yes, this was a problem and basically asked how soon we could get there.  I hung up the phone and told Peyton's nurse to get her ready to go.  It was a good thing we were going as the tube actually became clogged while doing the meds, so the "g" portion wasn't working at all anymore.

We got to the hospital and went up to radiology.  We didn't have to wait too long before being called back.  Peyton has a brand new tube and no problems in that area now!

In other news, the oxycodone seems to be helping a bit.  She's still not feeling well as far as the respiratory stuff goes.

Our trip to Boston cannot come soon enough.

Another Trip to the ER

We've been doing pretty well for a bit but Peyton wound up at the ER no Saturday.  She's been having some respiratory issues.  It's been a while, right?  She was also having issues with her g-j tube as well as a lot of pain that no one seems capable of dealing with.  I wrote a blog post on my blog about how thing went down in the ER.  You can read it here:

http://fontenblog.blogspot.com/2012/07/how-i-spent-my-saturday.html

Enjoy your holiday weekend!