Update

Where did this week go??  January??  What happened?  I can't believe how fast time is flying by!

This week started out with Peyton finally having her long-overdue sleep study on Sunday night.  She was to have had it a few months or more back, but each time the date approached, Peyton would be too sick to go.  I think I rescheduled it four times.  I was not looking forward to the study.  The process of getting Peyton all hooked up to all the wires is always a torturous ordeal for her.  I should have just had faith that it would all work out well right from the beginning, because it actually went quite well.  It takes nearly an hour to get everything hooked up and ready to go.  I held Peyton on my lap the whole time.  That in and of itself is a big challenge.  She did just fine.  She didn't start fussing until the very end when they wrapped gauze around her head to keep all the wires in place.  Once that was done, it was time to sleep.

Despite being so tired she was practically falling asleep in the waiting room before being called back, Peyton decided she was wide awake.  It was pitch black in the room and all I could hear was the sound of little fingers pulling on tape.  At some point, the respiratory therapist who was monitoring the study came in and I offered the suggestion of putting these little splints on Peyton's arms so she couldn't mess with the wires.  I just happened to have a set in her go bag, so on they went.  That solved that problem.  Peyton was not having anything to do with sleep for a while.  I think she was just too excited about having an actual bed to sleep in.  Yes, she actually slept in a real hospital bed - NOT a crib.  It was nearly brand new and the side rails seemed like they would contain her.  When Peyton sleeps, she really just stays put for the whole night.  The rails were also padded so she wouldn't hurt herself.  I didn't even need to worry about anything.  She did great in her big bed.  Now, I won't be rushing out to get her one for home - the hospital crib we have at home will be just fine for a long time to come.

It seemed like she was starting to settle when a couple RT's came into the room.  Peyton's oxygen was dropping to just 85% and she was having lots of central apneas.  She was AWAKE when that was happening!!  That's a new one on us!  They suctioned her quite thoroughly so that she'd have clear nasal passages.  She has been very congested in her nose of late, so that could have been contributing to those issues.  They put her on oxygen right then and she finally went up to 95% on her oxygen.  

Throughout the night, the RT came in several times.  In the morning, she let me know that Peyton's oxygen continued to drop during the night and she wound up being put on 2.5 liters of oxygen.  1 liter is typical at home.  Used to be a half liter.  2.5 was a surprise.  They did not try the bi-pap mask during the study.  I think they were satisfied that they could get her oxygen levels up into the mid-90s on oxygen alone.  However, I know that the pulmonary doctor really would like for her to be on bi-pap so as to reduce the strain on her heart and lungs.  So, we will continue to work on the bi-pap at home.

As for bi-pap, over the past week or so, Peyton's done very well at night.  She has slept with it on for as few as one or two hours, and as much as twelve hours overnight!  Last night was less than two hours.  We just have to keep on trying.

Peyton was scheduled for an eye exam under general anesthetic on Thursday.  However, Peyton decided now was a good time to get sick, so that was rescheduled to March 17th.  She started to get sick on Tuesday.  She had a fever and was throwing up a bit.  She was like that for two days.  Today, she's still having some vomiting but the fever is gone.  She's very, very junky sounding.  We're suctioning tons.  Poor Peyton.  It can't possibly feel good to have that much junk in your system that you just can't clear on your own.

The big news of the week was that the mycobacterium was finally identified.  It's called "mycobacterium immunogenum".  What is it??  Your guess is as good as mine.  Every search result I found when I Googled that had something to do with studies where this mycobacterium was found in relation to machining fluids used by machinists (i.e. in the automotive industry, for one).  It's apparently linked to a condition called hypersensitivity pneumonitis.  That condition isn't something that they said Peyton has.  I feel really bad - I guess I'm going to have to pull Peyton out of her shop class.  :(   Seriously...HOW on earth does Peyton have THIS in her lungs??  She wouldn't be Peyton if it didn't have a quality of mystery about it.

Anyway, this bacteria must be pretty rare as there is little information on it.  It's a non-tuburculosis bacterium.  It's penicillin-resistant from what I've read.  The treatment plan is lengthy.  It's also unclear as to whether or not the bacteria will respond to the treatment at all.  For now, she is going to be on a 2 month course of antibiotics - Cipro and Biaxin.  They aren't sure it will respond to Cipro, but she has to be covered by two antibiotics, so this is what they went with.  The idea is that if she is responding after a couple months, then the treatment plan will go on for another 6+ months!!  If it isn't responding after a couple months, then it's likely that this bacteria is not what has been making her sick and so they would just cease the treatment at that time.  I'm not sure what to hope for here - 6+ months of antibiotics and hopefully she's well at the end...or many months of antibiotics which result in nothing but horrible diarrhea and horrid diaper rashes from prolonged use of antibiotics.  Praying that this treatment works!!

In other news, Peyton had a visit from her case manager last Friday.  She did an assessment on Peyton's level of care, and she was able to put in a request for an increase to Peyton's home nursing hours.  When she was originally approved, she was approved for 56 hours per week.  In January, we had an assessment which resulted in a temporary four week increase to 72 hours per week.  As of the 30th, we were back to 56 hours.  The end result of last Friday's assessment was an increase to 84 hours per week!!  It's subject to monthly re-evaluation, but it's more or less a permanent thing since her requirements aren't going to lessen.  

Now the key is to get the staffing for that many hours.  It's awesome and we are so blessed and grateful to have this.  We know it was a struggle to get the 72 hours per week staffed - we actually never got 72 hours in a single week until the last week of that temporary increase.  We know it's hard to staff so many hours and expect it to take a while before we can get onto a good schedule.  We're not off to a great start for February, hitting 60 hours this week and not quite to 56 hours the next couple weeks.  We'll just be patient and pray that we can get the hours.  Anything we get is a huge help, so it's all appreciated.  Now to come up with a plan on how to use my time whenever we do get the 84 hours covered!! 

That's about all that is going on right now.  Lots of stuff happening.  Praying that whatever illness Peyton has going on right now clears up soon!