Friday, November 9, 2012


When I last wrote we were concerned that Peyton would have to go back in the hospital for albumin infusions and a blood transfusion.  This week, on Tuesday, Peyton had the bloodwork done that the cardiologist ordered last week.  Long story short, we do NOT have to bring her into the hospital for these things.  Her numbers seemed to have bounced back, although I am a little skeptical of one of the numbers.  If it's right - and not a fluke - then that's great!  That's not to say her numbers are perfect.  Just good enough to avoid this possible next step.

We also saw the neurologist.  The pending test results from when Peyton was in the hospital really didn't show a lot.  There's not a whole lot to report on this visit.  The doctor is anxious to help us, but we're kind of at a point, overall, where we aren't sure what the next step is at all.

A couple days before all of this, on November 4th, Peyton began having some serious "diaper issues" which cause our home nurse to be concerned that Peyton might have c diff.  I think I wrote about that last time.  We had to get a stool sample kit from the pediatrician's office on Monday.  I only JUST got the results this afternoon - and it took a lot of effort on my part to get them.  Sigh.  The end result is that she does NOT have c diff or any of the other bacteria that that kit tested for.  That is great.  And I'll take that news.  But she's had really nasty diarrhea for at least a week now with no real signs of letting up anytime soon.  I did not really get anywhere with the doctor's office asking what we should do.  He suggested bulking up her diet.  She's tube fed.  I can't give her rice cereal.  I am not certain where that came from, but I can't do that.  I may need to try another probiotic.  I was a little frustrated after that whole ordeal chasing down results and whatnot, so late this afternoon (like 4:30 pm on a Friday late) I emailed Peyton's gastroenterologist through the hospital system.  I certainly wasn't expecting a response, but I've felt since we first went through the pediatrician's office a week ago that we probably should have gone through the GI clinic all along.  We just happened to run into the GI doc in the lab at MUSC this past Monday when Peyton was having that bloodwork done, so I did mention to him what was going on.  So the content of my email today wasn't going to be a surprise to him.  NINE minutes after sending that email, I had a response from his nurse saying he'd like to see her on Tuesday in clinic.  Nine minutes.  NINE.  Can I just reiterate the frustrating day - no, two days - I had trying to get results out of the pediatrician's office??  And a specialist at the hospital read and had his nurse respond to my late Friday afternoon email within NINE MINUTES.  Seriously!  Can you say "impressive"??  Anyway, so we'll just live with this til Tuesday.  Hopefully by then things are improving, but as I said, things are not heading that way so far.

On the whole, this has been a frustrating week.  First just dealing with Peyton's health issues of late.  Fortunately for me we've had nursing and they get to handle some of those nasty diapers.  However, at 1am on Wednesday, I was still up and I walked into Peyton's room and I could smell it and I knew we were in trouble.  I had to wake Ron up and she needed to be bathed, her bed stripped, laundry started, things sanitized, bed remade, Peyton redressed, and put back to bed.  THEN I had to clean the tub.  I wound up cleaning the bathroom.  At about 2am.  Does that not sound like fun??  I hadn't yet been to bed and by that time, I was wide awake.  I had other issues going on which kept me awake.  At about 5am or so I pulled up my online bible study on YouVersion on my brand new iPhone (woohoo!!) and "began" my day.  Peyton woke up in the morning as usual but when the nurse left at 4:30 Thursday, I put her down for a nap.  She woke up at 3am Friday morning.  Because I was up all night the night before, I had slept for 5 hours while the nurse was here, and then for another couple after Ron got home from work.  So, at 3am I was, of course, still up.  I changed her and she did actually go back to sleep pretty quickly.

So, we've been dealing with a lot with Peyton which has been highly stressful.  Ron and I had a long discussion about a lot of things Wednesday night after we got home from our First Wednesday service at church.  The bulk of it was involving another issue which was mainly responsible after the 1am diaper explosion for me to not get back to sleep.

I am not going to go into detail here.  If you want to talk to me personally in some other setting (phone, email, in person), I can share some details, but it isn't appropriate here at this time.  Suffice it to say, we were suddenly and unexpectedly in a position of having to remove our 40 hour a week home nurse from Peyton's case.  Please pray that we are able to obtain a new - and very good - nurse quickly.  I know the agency is working hard at trying to meet our needs in light of the situation, which I am very grateful for.

Aside from all that, we're just moving along.  Going through the motions of life right now.  I think it's pretty safe at this point to say that Ron and I are fairly tapped out physically and emotionally.  Peyton's 17 day hospitalization and all that involved really took its toll.  We have been so grateful for the help we've received from our church family who had set us up with meals for all of last week.  I am extremely grateful to my next door neighbor who brought her little baby and 4 year old over today and just spent the day (all day!) with me.  Just because I had no nurse and she wanted to help in some way.  Her husband even brought us lunch.  How awesome is that?  Anyway, I just have to believe that out of all of this, something good is going to happen.  There are definitely blessings amidst the struggles.  I just pray for the struggles to ease so that we can rest a little.  I'm not any good to anyone if I continue like this.

I'll keep you updated.  Peyton has a few appointments next week.  Thanks so much for all your prayers and continued support!  

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