Wednesday, May 23, 2012

All kinds of stuff...

I started writing about the We heart Harlie event today - but it's not finished.  So, I thought I would update you on some other stuff in the meantime.

Random Thoughts

I cleaned out Harlie's closet the other day trying to consolidate some of her medical supplies.  They were over taking her whole closet and we had very little room for her clothes.  And I'm sorry - but she's a GIRL and that's just NOT right!

Anyway, the first 3-ring binder I put together for all of her medical information was in there.  And I put it on her dresser for me to go through and figure out what needs to be saved/trashed.  I still haven't gotten to that yet.  But, anyway (geez this story is getting longer than I intended) tonight it got flipped open and it landed on a pediatrician's well-check appointment sheet.

Do you know that at four months old she weighed 9 pounds, 3 ounces?  And she wasn't born premature.

For some perspective, I took Rooney to the vet yesterday (Monday).  He will be four months old next week and he weighs eight pounds even.  Funny.


So, for most of last week I kept Harlie home from school.  I was trying to get her well so she could enjoy her big day on Saturday.  I let her sleep in and Terri and I were downstairs.  The monitor was silent and then we heard "MAMA!"  Well, I was involved in something, so Terri went upstairs to get her.  She got her up out of bed and told her to go potty.  But, instead she went to the top of the staircase and yelled for me.  I couldn't hear that though because she wasn't close enough to the monitor and her little voice does not carry that far.  So, she went potty and Terri got her dressed, brushed her hair and her teeth and then she came downstairs.

She walked straight to me and held her hand out to give me something.  So I opened up my hand and she dropped a small item in it and never stopped walking.  She walked right by me and went to Rooney, sat down and starting petting him.  I looked at my hand and it was a tooth!

She pulled out her own tooth!!!  And then held on to it while Terri was getting her ready.  At first I thought maybe it just fell out.  But, never - not even once - has one of Murphy's teeth fallen out without help.  And I had NO idea it was even loose!  So, that's how tough my little girl is.  She pulls out her own teeth - no muss - no fuss.  And was blase about it, to boot!  She's something.

On another tooth front, Harlie winces in clear pain when I brush her lower right teeth.  I don't know if it's a tooth pain thing - or a jaw pain thing.  The only reason I think it could be jaw pain is that a screw from her previous jaw reconstruction is starting to poke through.  This happened after the first one, too. It's really disgusting.  The screw is pointed downwards and you can see a sharp protrusion on her jaw line.  If you feel along her jaw line, you can feel how sharp it is and it feels like it's going to come through her skin at any moment.  She has NO fat whatsoever to help pad it.

It's hard to think that she has to wait THREE more months before they can fix the screw problem.  It feels like an eternity!  But, I'll call her local dentist tomorrow just to make sure it's not a tooth pain issue.  Although, if it is, I have no idea what we'll do about it.  It complicates things that she'll be seeing a dentist who specializes in this sort of thing in just three months.  I'm really not ready to deal with dental surgery at this point.  I was seriously hoping we'd get through all the other body parts first.

Harlie's current health status

Well, she's staying home again this week.  I hate to say it - but this sucks!  She has been more sick this year than EVER.  And I am seriously beginning to think that her school environment must have something that her system doesn't like.  She was in preschool at a different elementary school (lots of exposure) for almost two years before the start of school in the fall - and she rarely missed school because of sickness.  Surgery, yes.  Sickness, no.

I've lost track now - but I think she stayed home last week Monday through Thursday.  She got better each day, and by Friday I felt she was more than well enough for school.  On Monday, I had to pick her up at noon.  Terri said her nose was running constantly (not clear, either).  I know, ewww.  Anyway, so I picked her up and brought her home.  We didn't have to wipe her nose once for the rest of the afternoon.  Interesting.

That day I spoke with her pediatrician.  He said we are doing all we can at this point.  She has pseudomonas and was on the antibiotic Cipro and is now on antibiotic breathing treatments, Tobramycin (a 28-day treatment).  I know a lot of trached kids get pseudomonas.  And I can tell you that I had never heard of it until Harlie got it.  I know non-trached people can get it, but I don't think it's common.  I think it happens more in a hospital setting.  I don't see her passing it to a typical kid.  So, I don't think her classmates are in danger of contracting it.

However, he said that we need to keep her "away from the petri dish" that is elementary school.  She's already weakened as it is.  So, while I don't think she can pass it on, I think she's more susceptible to catch something else.  I hate to keep her out so much.  But, we need to think about getting her well and back to her baseline - long before her big surgery in August.  Considering the circumstances, now I am glad our surgery date is late August.  If her surgery date was in June I would be SO panicked right now.  There are so many different doctors involved in her surgery that we had to schedule it six months out.  If we had to reschedule it would be awful!!!

I don't know what this means for her schooling for the rest of the year.  Do I keep her out?  Do I ask for home schooling?  Do I just wait another week and see?  I just don't know...

Speaking of Boston Children's Hospital...

I was on the phone again today with the girl that's helping me get everything scheduled.  Sarah is her name and she seems really nice.  And patient.  I suppose she does this for a living, so she's used to it.  But scheduling her pre-op days is making my head hurt.

Just to give you an idea of what I'm talking about...

On May 7th this was our tentative schedule:

Tues - July 24 - Dental appointments (molds, and consult) and plastics consult
Wed - July 25 - Unknown appts (trying to schedule CT scans for this day)
Thurs - July 26 - Pre-op blood work, cardiac, anesthesia, nurse, etc. consults
Fri - July 27 - probably nothing, can most likely go home in the morning or night before

A few weeks later this was our tentative schedule:

Mon - July 23 - CT scans with/without anesthesia
Tues - July 24 - Dental appointments (molds, and consult) and plastics consult
Wed - July 25 - No appointments, we have the day off
Thurs - July 26 - Pre-op blood work, cardiac, anesthesia, nurse, etc. consults

Sarah was told they don't do outpatient CT scans on Wednesdays (or something like that) so she had to add Monday to our schedule.  Neither of us loved the idea of having a day off (Tom won't be traveling with us, so that wasn't appealing to me).  So Sarah said she would try to schedule Thursday's stuff for Wednesday.

Then a lady from CT called me to go over her history.  She told me two things.  One, they will not do a CT scan with anesthesia on a girl with cardiac issues whom they've never seen before.  So, an 8am CT scan with anesthesia will not work.  Two - they do CT scans on Wednesdays.

So, I said that I wanted to try to do the CT scans withOUT anesthesia, since she's been able to do that the past two times with no trouble.

The problem is that the scans will be done with contrast.  So, if they inject the contrast, and then try to do the scans but she isn't cooperative, then we won't have enough time to get anesthesia in and done before the contrast is gone.  And then you have to wait 24 hours before injecting more contrast.

We ran into this challenge in March before Harlie's pacemaker surgery.  But, she did wonderfully, so I stressed for nothing.  Will the same be true in August?  Hard to say.

So, she thought maybe we should try for no anesthesia on Monday and then if that didn't work, we could fall back on Wednesday as a back-up plan.  However, when she looked in the computer, she could see that all her pre-op stuff had already been rescheduled for Wednesday, so now there's no room for a CT scan with anesthesia.

I asked her to please call Sarah and have them figure it out.  I wanted OUT of this logistical/planning nightmare.  See why I hate any kind of planning at all?!?!?!

Oh, and to make things worse - when you throw in plane tickets, whew!  Tom said that flying on Sunday night was 3x more expensive than flying on Saturday.  So, he wanted us (Harlie and I) to fly up on Saturday.  That meant that we would be there for like five nights.  Ugh!

So, today I spoke with Sarah again.  She had not spoken with the CT scan person so she hung up with me, and called her, then called me back.

So, now here's our latest tentative schedule:

Tues - July 24 - Dental appointments (molds, and consult) and plastics consult

Wed - July 25 - CT scans
Thurs - July 26 - Pre-op blood work, cardiac, anesthesia, nurse, etc. consults

Except I can't remember if the CT scans are scheduled for early am and the pre-op stuff is in the pm, with nothing on Thursday.  If that's the case, we have no back-up plan for the CT scans.  No pressure there!

To complicate matters even more... she told me that she can't actually schedule the CT scans until they have some data on Harlie's cardiac situation.  So now I have to get medical records in her hand before she can schedule it.  This was the same story back when I was trying to schedule the first appointment.  Medical records.  How I hate trying to obtain medical records.

Ugh.  See why my head hurt today?  Of course, my lovely children didn't help me with that.  While I'm on the phone trying to focus on this mess the boys were asking me for freeze pops, help with homework, fighting and playing with loud toys in close proximity to me.  And Harlie was yelling at me to get off MY computer so she could get on You Tube and watch Simon's cat...

Just another day in paradise.

Thank goodness for this little guy...

He just makes everything... better.  And some people told me I was crazy to get a puppy.  No faith, I tell you!  Tom says my heart is full now and that Rooney has squeezed him right out.  While it might appear that way sometimes, that is not really true.  I have a very large heart and it still has plenty of room!

Well, that's it for now.  I know you're glad about that.  You probably need to go out and get yourself a puppy to help lower your stress after reading this mess.  Okay, maybe a glass of wine or cold beer would do.  But, I think I'm past that at this point.  And I'm going to try to run more again.  Which means I need to drink less alcohol and more water.  Boring!

Sadly, I have WAY more to write about.  So, hopefully I'll get to update again soon.



Ann said...

Thanks for the update! That Rooney is pretty darn cute.

more water, less alcohol .... definitely boring. :)


B-Mama said...

I am amazed at your ability to juggle it all. Send those boys down here to ride bikes and scooters--that will get them out of your hair! :) Hopefully by the time you all travel in July, you'll have exhausted every possible scheduling option down to the perfect one. And then you'll have smooth sailing and you'll forget all the pain it took getting there. We can hope, right?! xo Love that little furry boy at the end!

Susan said...

Oh Christy, why can't it ever go more smoothly? Things will likely work out in the end, but it's nerve wracking until then. I'm glad the puppy is helping. XOXO.