Back to the Hospital

We thought we were in the clear when it seemed that Peyton did not get that nasty GI bug that Moira, Ron and myself all got.  Yet this morning, we wound up taking Peyton to the ER.  Not with a GI bug, but yet another respiratory ailment.

I've spoken several times lately about how Peyton is requiring oxygen during the day while awake - something that never used to be the case.  This has not changed for the past several weeks.  However, over the past couple of days, the amount of oxygen she is requiring during the day has increased.  She has also been a little on the junky side, with increased heart rate and the odd low grade fever here and there.  I've been in touch with the Pulmonary clinic about her condition and it was suggested that perhaps we might need to start a course of IV antibiotics.  We can manage this at home since she has a port.  By the time last night rolled around, I was thinking I'd definitely make the call to the pulmonary clinic to suggest that we get that started.  Peyton was sounding horrible and it didn't look like we needed to wait on this any longer.

Then this morning came around.  Peyton was hot to the touch so I undressed her and got a temp on her.  She had a temp of 100.8.  That may not seem like a raging fever, but you have to bear in mind that her "normal" is upper 96 degrees to mid 97 degrees.  And, of course, we're ultra cautious anyway, so 100.8 isn't anything to mess around with.  In addition, she sounded even worse and she just looked "off".  I made up my mind that we were going to have to take her to the ER, but I also knew we'd have to call the home nursing agency pretty quickly to call off her nurse for today.  She has transportation issues, so we would have to be sure to catch her before she left, as she has someone bringing her to work.  No sooner did I form that thought did the agency call me to say that she had called in sick so I guess for today it all worked out.  Ron got Moira on the bus to school and I got Peyton and her gear ready to go and we headed off to the children's ER at MUSC.

Ron dropped us off at the door and then went to park the car.  I went in with Peyton and we were taken back to a room pretty quickly.  Once in a room, it was mere minutes before a doctor was in the room.  It seemed almost immediate.  While we did bring her in because she was obviously sick, apparently she was sicker than we realized.  The doctor enacted their "rapid response" protocol immediately based on their assessment.  This meant that her port was accessed within minutes and a bolus of fluids was pushed through very quickly.  They gave her additional fluids shortly afterwards.  Antibiotics were ordered and given fairly quickly as well.  A second antibiotic was given not long after that.

\

A lot of blood was drawn for labs and a chest x-ray was also done.  The x-ray doesn't look too bad.  We're still waiting on the blood work results.  The doctor was in several times.  We knew pretty early on that Peyton was going to be admitted to the hospital, but there was some concern over whether it would be to the PICU or to the PICU step down unit.  They eventually decided on the step down unit.  With the fluids and oxygen, Peyton's color and mood started to improve a little.  Her heart rate finally came down out of the 150s.

We didn't spend a horribly long time in the ER before Peyton was taken to a room.  She is under the care of the PICU doctors, as opposed to the general peds team.  She wasn't in the room long when her Neurologist came by.  He just happened to notice in their computer system that Peyton was in, so he came by to see what that was all about.  I was glad, since I was actually going to email him to let him know.  We discussed the lumbar puncture and other research type issues that are hanging out there for Boston.  He is thinking that if she is doing ok, he may be able to do the lumbar puncture on Thursday.  

In addition, he is talking about contacting the researchers {Children's Hospital Boston and NIH} to see what we can do about expediting some of the stuff that's hanging out there in the hopes that we can get her some form of treatment.  Of course, it's research and there are FDA guidelines and I'm sure other sorts of hurdles to cross, but he is hoping that somehow he might be able to take some of that from them and perform whatever needs to be performed right here at home rather than have her travel.  He is looking at it from the point of view of being "emergency and compassionate" reasons.  We will see what happens.  I would say that if someone said we were needed up in Boston in the next month, we probably wouldn't be going.  She needs to have all this stuff done, but it's getting to the point where it just isn't going to be feasible because of her medically fragile state.

We aren't sure what is going on.  There is the great possibility that what is {and has been} happening are not so much an illness as they are signs of her overall condition diminishing.  As the PICU doctor said, often children with severe issues like Peyton, over time, will become weakened in the areas involving swallowing, breathing, and so on and what appears to be an illness might actually be more of an inability to perform these functions well.  We just don't know.  I would suspect, though, that because of her increased oxygen requirement during the day that it is the latter.

In addition to all of this, Peyton's level of pain today must be excruciating for her.  She is on Neurontin and Oxycodone for pain, but it seems like that's not doing anything.  I noticed it first thing this morning.  I barely touched her leg and she began screaming out in pain.  I don't know what is different about today but it is unbearable for her to be touched or moved.

We pray.  We pray often and we pray hard for Peyton.  The problem is that we don't know which direction our prayers are supposed to take.  It is heartbreaking to see your child enduring so much.  You wonder how much a body can take.  In addition, this isn't something we've really talked about openly, but we're being asked questions that no parent should have to answer for their child regarding the "what if" scenarios.  As much as you are praying for Peyton, please pray for us that we will have the wisdom to make the best decisions for her.  Please feel free to share this site to people you know would be willing to pray for Peyton. She needs many prayers!!

Thank you!

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