She's Six

Today is Peyton's 6th birthday!!  I am so blessed, grateful, and excited that we are able to celebrate another birthday with her!  I have no idea where the past 6 years have gone!

Sharing some thoughts on Peyton over here today:

http://fontenblog.blogspot.com/2012/05/to-my-sweet-six-year-old.html

Take Heart

Peyton saw her cardiologist today for her follow up visit.  You can read all about that over here:

http://fontenblog.blogspot.com/2012/04/take-heart.html

DNA

Hi friends and family!

I have been sharing some of our story over on my personal blog rather than here.  I just wrote a post this evening about our trip to see the Geneticist.  I'd love if you stopped by to read it:

http://fontenblog.blogspot.com/2012/04/its-all-in-dna.html

Aside from this, Peyton has been having a bit of a challenging week.  She's not outright "sick", but she keeps having to wind up on oxygen during the day while she's awake, which is unusual for her.  Also, she seems to have a fair amount of pain on a daily basis.  Since she can't tell me, I don't know what that's all about.  I feel like her hips and shoulders are really bothering her, so perhaps that it.

We see the cardiologist next week.  She went a year ago.  She has a heart murmur and a mitral valve prolapse.  Praying that this is no worse now than it was last year.  I will update after that appointment!

Thanks for stopping by!

In Hospital & Back Home Again

I want to apologize for the lateness in this post.  I did not have my laptop with me, and was unable to post anything from my kindle....BUT....I wanted to say that Peyton was in the hospital this week.  That said, she is home again!!

On Monday afternoon, her home nurse was concerned about her.  Her heard rate was elevated and she was noticing some other subtle changes.  She was convinced we needed to go to the ER.  I wasn't...but that's just me.  Finally I relented, and we were going to go.  We were getting Peyton situated and were about a minute from heading out the door when she coughed up a bunch of blood.  That did it for me.  Definitely convinced we needed to go.

So we went to the ER and along the way, she did the same thing again.  We got to the ER shortly after 7pm Monday.  About 2 hours later, we knew she was going to be admitted.  She wound up in the step-down unit of the PICU again.  Same place as last time - just a few weeks ago.  By sometime after 11pm, we had her in a room.

The main concern was the blood.  Her chest x-ray seemed improved from a few weeks ago when she had the pneumonia, although they could tell it was still {mildly} present.  She'd received a couple different antibiotics via IV {one dose each} but then they were discontinued.  The main reason for the stay really became about the blood.  So, I suppose after all, my leaning towards not going to the ER was ok, but because of the bleeding, we did the right thing.

The ICU doctor was wonderful but he transferred Peyton over to the general peds team on Tuesday.  They monitored her til Wednesday and we were back home by 4:30pm on Wednesday no worse for the wear.

She seems ok now.  Still getting over the initial illness from a few weeks go, but she's generally improved.  Since the two episodes of coughing up blood, she hasn't had that happen again - and they never did determine why it happened.

This site was not playing nice with others as far as my kindle goes, so I was unable to post here.  However, I did post a couple updates on my blog, which you can check out HERE and HERE.  If you have been following me on twitter, facebook, or on my blog, then these two links won't be new to you.

I'll invite you to follow along on my blog anyway.  Just click HERE to get to the main page.  I tend to write a lot more on there anyway.

We're so grateful for the love and prayers we've received the past few weeks since Peyton was first hospitalized.  Thank you to those who have prayed, sent well-wishes, brought meals or coffee or whatever helped to get us through.  It's been a really challenging past few weeks.

Thanks so much!!

Things Are OK

I realize {after a few people questioned me} that it has been a long, long time since there was an update here!  I just wanted to take a brief moment to update you.

In a nutshell, there's really nothing noteworthy to report.  After Peyton's hospitalization in March, she had some continuing issues with a couple little abscesses in the area.  I finally got one to burst and drain and it has greatly improved.

Peyton continues to have a lot of respiratory issues.  She was sick over Christmas and is still not quite herself yet.  Nothing worth going to the hospital over, but definitely worth calling the doctors a couple times.  She'll run a fever for a couple days...then nothing.  She'll be exceptionally junky and sound horrible for a while.  Well, she still sounds bad most of the time, but I think it's improved a little.

Overall, Peyton seems to be holding her own, although from an orthopedic point of view, I might say that she's losing some ground.  She is constantly dislocating her shoulders {particularly the right one} but also her knees and her jaw!!  It is becoming increasingly difficult to dress/undress Peyton because of her shoulder.  It seems like she is unable to do things that she was doing a few months ago, but I don't know...it's hard to say if that's permanent or just because she's been feeling so poorly since the holidays.

Schooling continues to be a "joy".  She's on homebound, which means the service providers come to her.  Well, they didn't do her IEP until the school year started, when it should have been in place for her to start on DAY 1 of the school year.  She started 6 WEEKS into the school year!!!  And even at that, she didn't have a special ed teacher!  They already cut her back from 4 days a week {an hour each day} last year to 2 days, but to have no one just isn't acceptable.  She finally got a teacher and then when Peyton went into the hospital in October, we lost her and we were supposed to have another.  Peyton took a couple weeks after she got home to recover, and in that time, the "new" teacher decided it wasn't for her, even though she never saw Peyton.  We are still without a special ed teacher.  I am thoroughly unimpressed with the school's ability to follower Peyton's IEP this year.  Disgusted is more like it, but I haven't said much simply because Peyton has had a hard time lately.  The school technically owes her all that missed time, although they would never acknowledge it unless we brought it up.  I did and was told we could meet to discuss that.  Well, no...THEY have been unable to provide a service.  THEY should be working on the solution and doing everything THEY can to make sure she doesn't fall behind {too late!}.  Ok, I could go on for a while about how unimpressed I am with her school this year but I won't.

As for nursing, we still get only 40 hours a week, which simply isn't enough.  However, the government seems to think any more hours would be unnecessary.  It's a struggle to determine the shifts.  I hate it, actually.  We have two nurses and this is the only job for both of them.  I want to make everyone happy.  It's so hard.   I struggle at times to put Peyton's needs first, so I tend to schedule more around the nurses which isn't right either.  It's just not easy to work with 40 hours.  I tried to go 3 days with no nurse a couple weeks ago so that I could make things work out better for one of our nurses {i.e. give her more hours on days she wanted} and it nearly did me in.  I am constantly exhausted.  That has never changed.  I can't seem to get past this exhaustion.  Anyway, I decided for myself that it isn't fair to me to do that.  Sigh.  The only way to get more hours is for Peyton to wind up sick enough to be hospitalized...but with something that would allow her to get more hours when she gets out.  And that would only last a couple weeks anyway.  We got bumped up to 56 hours after her October hospitalization for 2 weeks.  It was so helpful, even if it was still significantly less than the 80 hours we had been getting.  It's a full time 24/7 job {I hesitate to call it that since Peyton is my child}.  I can't go on forever like this!

Anyway, that's it in a nutshell.  I haven't been writing here, but I have been blogging...a LOT over at The Fontenot Four which is my personal blog.  It started like a "family" blog, but it's really just my space to write whatever I'm feeling inclined to write about.  Almost entirely positive stuff with no focus on the negative side of life.  If you haven't been to my blog, I encourage you to have a visit!

Still At The Hospital

As of Sunday night, we were waiting on peds surgery to come take a look at Peyton.  We were also waiting on an ultrasound which would help them see if there were actual pockets of infection in the abscesses.  Neither ever happened by the time Monday morning rolled around.  When the pediatrician did his rounds Monday morning, he took a look and decided to scrap the ultrasound altogether.  He had surgery paged and they came to take a look.  The redness had extended beyond where it had been.  The inflammation was a lot worse than the night before.  Clearly, the infection was spreading.

Peds surgery came around and they decided that it would be best for Peyton to have a little surgery to try to completely drain the abscesses.  There was discussion about how best to do that since she's not a good candidate for anything other than a complete general anesthesia.  They decided to take Peyton up to the procedure room in the PICU where they had a doctor up there administer and monitor her with conscious sedation.  He used ketamine and propofol.  I guess he gave her a pretty hefty dose because she was still fighting after all the ketamine was administered.  I was holding her hand and she had a tight grip the whole time. She was moving around a lot.  With the propofol she calmed down some, but she never closed her eyes.  She never went to sleep.  She never lost her grip.  It lightened a little, but never lost hold of my hand!  She fought that anesthesia.  She wasn't feeling the procedure (at least not that we know) but she was not out!

The procedure went well.  I got to stay with her the whole time.  I managed to stay on my feet this time!  :)  They didn't get as much out of the abscesses as they thought they would, but they did get some out.  The surgeon left in a piece of tubing.  There's two incisions.  The tubing runs in one opening and out the other about an inch and a half below the first opening.  Then the tubing is tied together in a knot on the outside.  I guess it holds the area open to drain.

As of this morning, the inflammation is way down and the area is less red.  It's still pretty red right around the main area.  Where the redness had spread is still red, but not bright red like it was.  It also  hasn't extended beyond where it had gotten to yesterday.

She's on a couple different antibiotics for now.  I haven't had any word as to how long she will be in the hospital.

You can read more on all this over here:

http://fontenblog.blogspot.com/2011/10/gods-armor.html

A Week Or So of Updates

Fortunately, there's not tons to report but a few things have happened in the past week or so.

The week before last, Peyton saw the Pulmonary doctor.  We're still concerned about the junkiness she has.  The doctor has her back on an antibiotic which will last for another week.  Oh joy.  She still sounds just as junky.

Last week we met with the Geneticist to go over results from the test that had been done when Peyton was in the hospital back in July - the on that might indicate whether or not Peyton might have a specific form of Muscular Dystrophy.  No news.  The first part of the test showed nothing.  The second part will take another 6 weeks.  Great.

I had surgery on my elbow on the 26th, making me unable to lift Peyton.  Our nursing hours were set to decrease to 40 hours but we managed to hang on to the paltry 56 hours we were given through 9/10/11.  THEN they drop to 40.  I'm not happy.  She had 84 hours a week in June then was cut back to 70 in July and then a few weeks later down to 56s and now it's about to be 40!  It's HORRIBLE. Read up on that situation over on my blog here:

http://fontenblog.blogspot.com/2011/09/being-flexible_04.html

And, last but not least, Peyton is in the hospital.  Oh joy.  Her whole GJ tube came out early last night.  She was admitted because it was Sunday and no one from interventional radiology is in on the weekend and they weren't paging them to come in either.  I should say, they spoke with IR, but they weren't coming in!!  We were very concerned about her being able to have it done at all even today because it's Labor Day!  Good news - she's about to have it fixed.  

What a week.

Ups and Downs

The road to recovery since this last hospitalization is up and down.  Peyton has some pretty good days but also some days where she starts running a low temperature or her oxygen levels aren't quite where we'd like them, thus requiring more oxygen at night.  She hasn't been sick to the point of needing to go to the doctor or to the ER, though, which is great!

We've had some big challenges in the last week.  I wrote about those on my blog over here:

http://fontenblog.blogspot.com/2011/08/please-just-pray.html

and

http://fontenblog.blogspot.com/2011/08/sometimes-things-cant-be-changed.html

Read in order so it makes more sense.  What has happened has been very challenging for us.  A lot of what's going on makes no sense and is hard to digest, but hopefully we can work around this and be ok with it in the end.  There's a lot of info, so I'd encourage you to hop over to the blog to read what I've already written on the subject.

Please pray for this situation for us!

Thanks!