Boston Follow Up Appointment

Our trip to Boston earlier this week went well, I think.

We left on Sunday.  We took an oxygen concentrator with us, supplied by our medical supply company.  I think we are going to do that for all her future trips, too.  I don't know why we didn't think of it sooner.  But, this way, it doesn't cost us anything.  If we get the oxygen from up there, we have to pay to rent it and then we have to pay to ship it back.

Anyway, on Monday morning I went for a run.  The weather is SO much better there than here!  It was so nice!  Then we took Harlie to a playground just down the street.

And we went into a toy store and let her pick out a toy.  It's so funny.  Every time we do that and they have Playmobil toys, she always picks one.  And even more odd, she's picked out the hospital room set and the ambulance.  You'd think she'd steer clear from that stuff.

She got to play with her new set while we had lunch.  We took our food back to the hotel and ate in the courtyard outside.  It was very nice.  Then we headed on over to the hospital for our appointment.

The waiting room in the craniofacial clinic is small and always crowded.  But we have never had to wait that long.  They took some pictures of Harlie first.  We have to pin her hair back so they can see her better.  They didn't have pins, so I had to use bands.  Here's my crazy girl, who looks pretty happy.

And here's a few pics of what the pins looked like.  Her right side is more abnormal than her left, and required a lot more work (that's also the side that has her implanted fibula bone in it).  So, that's why it's not as clean as the left side.

Then we met with her surgeon.  She said she is happy with how things look so far.  She explained that her mouth closure didn't change - her teeth touch on her left side before her mouth can close fully.  But that's always been the case.  But now that we've added about an inch to her jaw, her skin is stretched really tight and can't close yet.  She told me to give her more time.  She believes she will get her lips to close and that she will swallow again.

I asked her if her jaw would recede (which happened after her first two jaw reconstructions).  She said no, and that yes, it is a little forward now, but that the rest of her head will grow into it in time.  My first thought was, "If I had a nickel for every time I've heard that..."  Sometimes I just have to laugh at some of the stuff I hear, and then have to live with.

We discussed the stuff growing in her mouth.  I was hesitant to show you a picture.  But, it's so hard to describe it and try to explain how awful it is.  This picture doesn't even do it justice.  But, you can clearly see the green stuff on her tongue.  And it is stuck like glue!  Some days are better than others.  And there is more closer to her tonsils in the back.

Anyway, she said she's had lots of patients that couldn't swallow, and she's never seen this before.  On this particular day, Harlie's mouth didn't look that bad.  And in fact, she had not gagged in a day or so.  I was thinking we were going in the right direction and that this would just go away with the oral care we were doing.  Since then, we found out that the culture the ENT took the previous week grew some staph bacteria.  So, we started antibiotics today.  I really wanted to avoid giving her more antibiotics so soon after all those other antibiotics she received in the hospital.  But, despite the good days, today was a really bad day, with tons of gagging and pain.  So, I didn't feel we had any choice.

Back to the appointment... her surgeon said that if things are not better by November (when we have to return to have her remove the internal hardware from her jaw) then she can do another procedure while she's in there to help with her mouth closure.  The negative (because you know there's always one.  Or ten.) is that she will have to put more plates in her jaw.  And some believe that the plates hinder bone growth - which we don't want to do.  So, she said she could do that, even though she really would rather not.  But, if she still can't close her mouth AND we are still dealing with this crud growing, then she will do it.  Because clearly she cannot live like this.  And I don't know how she can go to school and learn like this, either.  Not to mention how her gagging would affect others in the class!

We already have a date for that surgery, and it is November 6.

I also asked about her teeth.  Now that you can actually see the back ones more, I can see that they don't look great.  She told me to get her in to our local dentist and see if anything needs treatment (cavities, etc.) and if so, she will get a dentist to come and do it while she's under anesthesia on November 6th.  Pretty awesome.  Although, clearly, I'm hoping nothing needs to be done.

So, after we talked, it was time to remove those awful pins!  Woohoo!  Even though I know Harlie wanted them gone, too, I don't think she shared my level of excitement.  The surgeon asked who would be holding her and I made Tom do it.  After that ENT appointment the previous week, I wasn't about to do it again.

There's something about this picture I love.  It really looks like he was actually able to comfort her a little (a seemingly impossible feat!).

After they were gone, she seemed really happy.  Her shirt was soaking wet, so I had to change it, again.  And when I put it over her head (we had to be really careful with the pins in) and it didn't hurt her, she smiled.  I asked her if she was happy that the pins were gone and she nodded yes.

Our appointment was at 3:00pm and we were in the downstairs main lobby at 4:00pm.  That's pretty awesome.  So, I asked Tom what we should do.  And he looked up the movie schedule.  Despicable Me 2 was playing at 4:07 a few blocks away (right near Fenway).  So, we took off!  We ran the entire way, with me pushing her stroller (which is NOT a jogging stroller) on the city sidewalks (with lots of bumps) and I was wearing jeans and flip flops.  Awesome.  We figured there would be several minutes of previews, so we had a good shot of making it.  And we walked into the theater right as it was starting.  YAY!

She loved it and it was a great way to end the trip!  We walked from there back to the hotel, which was a good little walk.  Then we ate dinner in our room - leftovers from the night before.  On Sunday night Tom went to a deli and got some meats, cheeses and bread.  And some wine.  So, we stopped at Trader Joes to grab a salad and more wine to finish it off.

Harlie went to sleep super fast and had a good night.  We woke up early on Tuesday, packed and headed to the airport.

The gate we were flying out of has a play area.  So, we killed some time there...

You can see how she can't close her lips here, while she's trying to give Tom a kiss.

She really is something.  Overall, she's a really happy kid.  And sometimes, I don't know how she can be.  This week has been tough.  Well, this summer's been tough.  And I'm not so happy.  It's a struggle each day to be positive and not be angry at what life is for her, and for us. I will never stop grieving what's been lost.

And summers are always the toughest time of the year.  It's when you see pictures of families on vacation at the beach, kids jumping into pools, and kids just being able to enjoy life.  And it's when you see other trached kids get decannulated.  And when I see a post from a mom that says, "After one year and x amount of days, so-and-so FINALLY got his trach out," it hurts a little.  To them, I'm sure that one year felt like forever.  But, it wasn't.  I can't believe we are going on seven years.  And then I think of some of my other trach friends who have been doing this for far longer than that...

Another thing that has struck me this time is how little we can plan in life versus how much a typical family plans.  Like vacation, other summer activities, or what days they run.  I'm living day to day over here.  And things are always changing.  Plans are something we do not have the luxury of making.  And sometimes, that makes me really mad.

I'll give you one small example... I have raft day at the pool on my calendar for this coming Wednesday.  They do that several times in the summer and we haven't been able to go yet.  Well, I heard from Harlie's orthopedic surgeon about Harlie's back.  You might remember that she's been complaining of pain.  And when she emailed me back, she gave me two dates - the Tuesday we were traveling home from Boston and this coming Wednesday.  So, now we have to go to DC instead of going to the pool for raft day.  I know better than to tell the boys much in advance.  So at least they don't know.  Now, I know that's not a big deal in the scheme of life.  But, having the little things work out on occasion would really make a positive difference in my current attitude.

It's times like these that I need to focus on what's good in our life (and there's a lot) and continue to trudge forward.  Harlie saw both her speech therapist and her hearing impaired therapist today and both of them said (independently) that she is making a lot of progress in her lip closure.  So, that's a wonderful thing.  Between that progress and the antibiotics, hopefully we'll be in a much better place in the next week or so.  And with any luck, her back won't be a major issue.

Okay, that's it for now.  Thanks for all the love!
~Christy xo