Thursday, continued...

Okay, I was rushed when I was writing that last post.

One thing that struck me about most of my Thursday is how lucky I am.  I hear a lot of nice things about how I keep it together and that I do a good job.  But, really, I am lucky a lot.  Some times things just go the way they are supposed to - despite my efforts to force it a different way.

And it was a good day to illustrate the emotional roller coaster that is the life of raising a child with special needs.

I was SAD (and crying, something I rarely do) by 9 freaking am.  And just a few minutes later, I was THRILLED to hear that I shouldn't have taken her to that appointment anyway.  Then I was happy for a couple of hours.  Then when Terri reminded me of our next appointment, I was so relieved she reminded me!  Can you imagine if we totally forgot?  Then I panicked.  There was no way I was going to make it in time!  Then I was thrilled that I got lucky, yet again, that the appointment time had changed (that never happens)!

Not to mention that I'm already on emotional overdrive with this surgery (and at the time, the trip up here) totally on my mind.

We got home right at 3pm and Terri had to leave.  But I had some other errands to run.  So, I put the kids back in the car and we went back to the pediatrician's office to pick up more scripts I forgot.  With ADD meds you have to go and pick up a script each month and take it to the pharmacy.  Of course I totally forgot to get them when we were there earlier.  But, on a positive note, they are now on the same schedule.  So, that takes out one trip each month.

By the time all was done, it was late in the afternoon and I still had not packed the boy's stuff for their trip the next day.  On Friday morning Tom was driving them halfway to Pittsburgh to meet his Mom and Cal so they could take the boys home with them for the next week or so.

It was a hectic day!  I was looking SO forward to going out with some friends that night for some laughs and drinks.  We were supposed to meet at 7:30.  But, by the time I got the boys all packed up, it was 7pm and I was no where near ready.  So, I was about an hour (or so) late getting there.  Fitting for the day, I think.

The bottom line is that I have too much crap crammed in my day.  And the kicker is that 80-90% of it - most of the time - is crap I don't want to do.  But Harlie is worth it.  And she makes me happy, despite how miserable our schedules can be.

Anyway, I had a GREAT time out with my girl friends.

From left: Me, Lyndsey, Lynda, Bethany, Brandy and Mary Ruth

After, ahem, a few drinks, we actually danced.  I haven't danced in years.  We had a blast.  I keep looking at this picture, and smiling.  Another example of why I feel so lucky. I am so loved, by some wonderful people. Thank you so much for a great night, and great memories!

So, that was Thursday.

Friday was okay.  I wasn't feeling 100% well (not surprised, are you?)  So, it was a bit of a struggle.  At almost 11am, Tom came home and loaded up the boys to meet his mom.  I was definitely not looking forward to saying goodbye.  As much as they drive me crazy, I don't want to be away from them.  And Cooper seems to love me so much.  How's he going to survive without me?  He's only four!  But, they were SO freaking excited to go that I couldn't be but so sad.  Two nights without them in the house.  Weird.

Tom had a date night planned for that night.

I don't talk much about how much of a strain stress can be on our marriage.  We are happy, most of the time.  But this week was hell.  Seriously.  Monday night was Murphy's swim meet (we were both out, but not together).  Tuesday night I had my hair cut (I was gone).  Wednesday night was our special needs sibling night (I take Murphy to meet some other special moms and their kids who have special needs siblings, so I was gone).  Thursday night was girl's night (I was gone again).  So, we saw each other very little.  And that just makes it worse.

Plus we are in the middle of renovating our old playroom into my new office!  Woohoo!  We took out the carpet and had hardwoods installed.  Tom went and picked up the hardwood material and let it acclimate for a few days.  The installer was scheduled for Tuesday, I think.  Then Tom pulled out a piece of wood and saw that it wasn't the right material.  Of course.  So, he had to reload it in his truck and return it.  Then order the correct material.  Then bring it home, unload it and let it acclimate for a few days.  So, it was finally installed on Friday and Saturday.  And wouldn't you know that he ran out of wood before he could finish?  Just six more pieces is all we need.  Figures.

Anyway, back to what I was saying - it's just been a stressful week.  We are both super busy and we are both dealing with the anticipation of this surgery in our own way.  And our ways are different.  Mine is better, of course.  Just kidding.

So, we desperately needed some alone time so we could talk without getting angry with one another - before coming up for this hospital stay.

Tom surprised me by scheduling a couple's massage.  No doubt we were due for some relaxing!  Then we went to dinner at a Vietnamese restaurant.  It was so good!  And we were getting along great - we even got to walk the dog together when we got home.

Saturday came and Tom had his last bike ride before his big race on July 6th.  I don't know if I've mentioned it, but Tom is biking 200 miles on July 6th.  Two hundred miles!!!  Isn't that crazy?  It will take him ALL day (and into the night I'm guessing).  I am SO glad that his training is DONE.  Training on a bike is WAY more time consuming than training for a marathon.  It has not been easy the past six months.  I am looking forward to a less strenuous summer riding schedule.  With more running for me, I hope!

Even though we had our date night the night before, we didn't discuss Saturday's schedule.  Clearly, we both had visions of how the day would go.  Unfortunately, they were very different.  My younger brother and his girlfriend were having the family over to their house for crabs at noon.  Tom couldn't even go with us.  I tried VERY hard to get there close to noon.  I promise.  But Harlie was high maintenance that morning and I was alone with her, while still having to go to the bank and back to freaking CVS (I go there WAY too often for my liking).  Plus there was some other stuff I had to do (like start the laundry - I still had to pack for us to leave the next day).  And I had to get some stuff for the cookout at the grocery store.

So, again, despite working my guts out, we showed up at 1:30.  And we had another party to go to that started at 2pm.  Clearly, our day was going to be off.  Typical.  Except I still had four loads of laundry and I had to pack!  Ugh.

After that party, I went home and picked up Tom and we headed to Brandy's party.  I think we got there a little after 3:30.  We were having so much fun, that we ended up staying till 8pm or so.  ACK!

So I did laundry till 1am.  And Sunday morning was a mad dash to get out of the door.  It was awful.  But, somehow, we got it done (for the most part).  We left some things.  And we had to scale back a bit because everything wouldn't fit in our luggage.  I've now determined that we need one more large suitcase.  We do have to do this all over again in August sometime.  And then a few months after that, I'm guessing.  It's not worth the stress of having to decide what you can live with or without when you're packing for a special needs child.  I mean, we had to pack almost a case of formula for crying out loud!

Anyway, we were stressed leaving the house.  And we didn't have time to take Rooney to Brandy's house (she's keeping him for us) so we packed his stuff and she said she would come and get him.  Leaving him behind was brutal.  He just looked at me with his big sad eyes and he tried so hard to get me to play with him.  I couldn't help it, but I cried all the way to the airport.  He is so healing for me every day.  I hate that I won't get that until I get home and I don't even know when that will be!

So, after we got through security, we went to sit down to eat.  Tom ordered a turkey sandwich and I ordered a mozzarella/tomato sandwich.  To tell you the truth, I wasn't really hungry.  I've been more nervous than usual this time around, so eating wasn't sounding so good.  The waitress comes to get our drink order and brings us our beers.  She said she was coming right back for our food order.  She never returned.  So, Tom went to the bar to order.

Just a few minutes later, she brought out Tom's sandwich, but she held it up at the bar, and said, "turkey!" instead of bringing it to our table.  Weird.  So, Tom got up to get it and asked about my sandwich and she said, "She already ate it."  What?  So, Tom brought his sandwich to the table.  And a couple at the bar said that when they ordered a turkey sandwich - just a few minutes prior - the same waitress said, "We haven't had turkey in years."  What?  Clearly, this waitress has a problem.

So, we share the turkey sandwich.  It was pretty apparent that I was never going to get my sandwich.  Luckily one of the other employees called for some management and he had to take care of some messed up checks.  Tom said a guy at the bar who ordered one beer paid for our order.  Tom went to pay our bill and told the guy that the waitress is confused.  And he said, "Oh yeah! She has full on dementia!  Sadly, it came on very suddenly."

Then we got on the plane.  And flew to Boston.  The second we landed in Boston, I felt better.  At least some of the stressors are behind us (saying goodbye, packing, traveling, etc.) and now we can start to focus on just being here.

Our wonderful neighbor, John Hudson, has again taken care of our hotel bill for us.  He got us a room at the Marriot in Coolidge Corner.  It is a wonderful area!  And we had fun taking a walk and just looking around. By the time we checked into our hotel (around 3, I think) I was starving!  So we went to a great pizza place for an early dinner.  Then after we let Harlie play in the room for a little while, we took another walk and got some frozen yogurt for dessert.

Tomorrow we have appointments at the hospital with cardiology (9:30), pre-op (11ish) and our surgeon (2:30).  So, it will be a long day.  Then Tuesday is our day off and we are going to take Harlie to the aquarium and where ever else the day takes us.  Then Wednesday is surgery day.  And thinking about it makes my stomach sink.

It is now late, and this post is long enough.  Thank you for being there for us.  Thank you for reading this.  It really helps me.  And I appreciate it.

Much love,
Christy xo

My Thursday...

At 7:30am, I went to wake Harlie for her dentist appointment and her eyes are glued shut.  I know what that means - pink eye.  No problem.  That's easy.  Drops and that doesn't lead to respiratory stuff.  We're good!!!

Clean her eyes with a warm washcloth a few times and get her up.  I called Brandy to tell her we shouldn't do something together today because she probably doesn't want her daughter to get pink eye.  While talking to her, Harlie brings me baby powder.  Sometimes she wants me to put it on her, um, area, if you know what I mean.  Since I was on the phone, she didn't exactly have my 100% attention.  I take the bottle, squirt a little on and go back to doing whatever I was doing.  Next thing I know, Harlie comes to me upset, points to her area and signs "hurt."  I look at the powder more closely and realize it's medicated powder with cooling stuff.  Oh no.  I put her on the potty and pour water over her and ask her if it's better.  No, it wasn't.  I do that a few times, but that's not working.  So I had to put her in the bath tub.  That did the trick.  But, this whole thing has cost us valuable time.

I asked her if she wanted to go to the dentist and she said yes.  You  might remember what happened the last time we went to the dentist.  So I told her we had to hurry.  Which, for her, she did.  By the time I got her in the car it was 8:30am and that is when my appointment was.  So, I called the dentist to let them know I was running 15 to 20 minutes late.

Big mistake.  Or so I thought at the time.

The receptionist told me that they were going to have to reschedule her.  What?!  I was in shock.  I explained that we didn't have time to reschedule because she was having jaw distraction surgery next week and we are leaving on Sunday.  She actually said, "Okay!"  And fully expected that to be that, end of conversation.

Now, I get it.  It was MY mistake.  Our life is crazy, and I rarely get anywhere on time.  If you only knew how hard I try!  But, still!  Can't they work with me?  So, I ask her to please just check with the dentist, to be sure.  She returns to the phone and says, "Dr. Bortell said she would be happy to accommodate you if someone cancels."  Seriously?  She might have thought that was polite, but I certainly didn't hear it that way. I then tell her that probably isn't going to work because she has an appointment with her cardiologist in the afternoon.  She does NOT care.  I hang up.

After a few minutes I remember that I waited in Dr. Bortell's waiting room for OVER AN HOUR just a few weeks ago.  So, how is it that I can't be 15 to 20 minutes late?  That doesn't seem right to me.  And then I thought of how much time I have spent waiting for doctors in waiting rooms in the last seven years of my life.  Then I started to get a little sad.  Sometimes, I just can't believe this is our life.

So, I turn the car around and go back home.  I get Harlie in the house and I can feel like I'm going to cry.  So I go upstairs and call her pediatrician to see if they can see her for her pink eye.  After that my friend Jennifer happened to call.  And as soon as she asked me what was going on, I started to cry.  I don't cry often.  Thank goodness.   I mean, who likes to do that?  But, in this case, I just couldn't help it.  I just don't understand why everything has to be so hard.

Jennifer said she didn't know.  But, it's true.  Everything is really hard for us.  Then she said that if it meant anything, we've been doing a great job and that if she were me, she would have been in the loony bin a long time ago.  At least my friends get my sense of humor.  And I can laugh.  Even when I cry.

So, I hang up with her and I put Harlie right back in the car and go to see her ped.  When we pulled in the parking lot, she said, "Mama! and then pointed to her teeth.  I took a deep breath and told her that the dentist couldn't see her today.  She seemed okay and didn't "say" anything else about it.  I would give anything to have a conversation with her.

Anyway, her doc and I chat.  I mention the dentist thing.  And he reminded me that she needs a prophylactic (preventive antibiotics) before any dental work because of her heart defects.  He said that he thought I should steer clear from any dental work before major oral surgery.  He said that would be asking for trouble.  Thank you Dr. Derco!!  He totally turned my day around!

I left there and went to CVS to get her pink eye prescription filled.  Then we went home.

In my ever quest to do something fun with the kids this week, Terri and I loaded them all in the car and went to the bank.  We have been meaning to take Murphy's piggy bank money to the bank to get cash for him to be able to deposit and/or spend.  Murphy had fun putting the coins in the machine.  While doing that we found a bag of gift cards that he had not used yet.  Awesome!

After that, we went to Toys R Us so he could use his gift cards and some of his own money to buy something he wanted.  I told the kids they could each pick out one thing.  Murphy and Cooper left with one thing each and Harlie left with three.  Ugh.  I promise I don't mean it.  But, I think the boys know how I feel sometimes.  They didn't say ONE word about it.  They were all happy and that's all that matters.

We spent some time walking around in there.  Murphy had no trouble making his selection.  He knew exactly what he wanted - a Stars Wars Lego set.  Cooper choose a Lego Chima Hero Factory guy.  Harlie picked a Boo doll (the girl from Monsters, Inc.) and a Lalaloopsy set that was a girl "patient" and her pet, complete with a stethoscope and medicine and a cast for their legs.  It's actually really cute.  And another little Monsters University thing that came with the purchase of the Boo doll.  She has only played with the Lalaloopsy set, so I'm going to take the Boo doll back.  She's still in her box.

It was 12:15 when we left Toys R Us.  So, we went to Chick-fil-A to get lunch.  The place was so busy you couldn't get in the drive through without blocking traffic.  So I parked and left Terri in the car with the kids.  When the guy brought out my food, it was pretty obvious I couldn't carry it all.  He immediately offered to walk it to my car for me.  Can you believe that?  I told him I was pretty far away, but he said that was fine.  He was super nice.

So, I get in my car and start driving home.  And Terri looks at the clock - it is now 12:36 - and says, "You have a doctor's appointment in less than an hour!"  ACK!!!  I already completely forgot about the cardiology appointment!  I am such a space cadet sometimes.  The appointment was originally for 1pm, but the office called back later to say they had to move it to 1:30.  Whew!  Good thing!

We rush home and try to eat quickly.  And I spend 30 minutes trying to open Harlie's Lalaloopsy package.  Grrrrr!  And Jennifer calls again to ask me what I'm doing around 3:45.  Can you believe that she called her kid's dentist and got Harlie an appoinment for 3:45?  Sometimes I'm overwhelmed by how good my friends are to me.  She said that she felt so bad for me earlier and she had to do something to help.  But I told her that we couldn't do it after all.  BUT, I am totally switching to her dentist.  I cannot go back to ours again.  

By the time we turn around and get back in the car, it is freaking 1:30!!!!  I've done it AGAIN!  So, I take a risk, and call the office to let them know.  Despite my earlier "lesson" with the dentist, I think it's still right to call and let them know.  I got the same person I made the appointment with the day before.  She said, "You are good!  Your appointment is for 1:45.  Didn't you get my message?"  I could have sworn she said 1:30 (so did Terri) but I will take that stroke of good luck for sure!  So, now I was ON TIME!!!  Woohoo!!!

Everything was fine there.  It was a funny appointment.  I love her cardiologist.  He offers me great advice in many areas of Harlie's issues.

But, I have to stop there.  We are now in Boston and we are going for a walk.  I will try to blog again tonight, if I'm not too tired.  It's been another long day, of course.

Thank you for reading!
~Christy xo

Ever changing schedules...

So, after much consideration, we've decided that a trip to Chuck E. Cheeses is out of the question.  Sometimes I just want to be normal.  I wish I didn't have to consider such great consequences to typical activities.  It sucks.  But going to a place where many kids frequent is just too risky.

Today's fun activity?  Didn't happen.  It ended up being a rather crazy day.  I took Murphy to swim practice and while he was swimming I went for a walk/run.  It was great.  It was hard, and that part wasn't fun.  But, it was great to be able to walk/run and not have back pain.  It was super hot and my legs felt like lead.  But I did it.  

My contact in Boston called today.  She's been so helpful.  The first time we spoke she told me that all the pre-authorizations have been taken care of.  Awesome.  And she mentioned something about medical reports from the last visits to Harlie's cardiologist and pulmonologist.  Well, she last saw her cardiologist last June, which was before her last jaw surgery, so they already have those reports.  But, she called later in the day to tell me that they want her to see her cardiologist again, before she has surgery.  We leave on Sunday. Today is Wednesday.  That gives us two days.  Hmmm.  It'll take a miracle.

So, I call her cardiologist's office and can you believe that she now has an appointment for tomorrow afternoon?  Wow.

So tomorrow Harlie has a dentist appointment in the morning and a cardiology appointment in the afternoon. There's your fun, kids!

Right now, I have too serious of thoughts on my mind to be a fun mom.  It's hard to let all the responsibilities go to let loose.  Especially when you have to worry about germs and her getting sick right before the big day.  I wish I had thought of this sooner.  But the perfect thing for her would be one of those inflatable water slides.  We could put it in our driveway and the kids could have fun without germ worries.  And she could play for five minutes or two hours - whatever she was up to.  Darn it.

Okay, that's it for tonight.
Thanks!
Christy xo

One week to go...

A week has passed since my last blog post.  For some reason, the words are not coming so easily.

One, I don't feel as mentally healthy as I would like.  In addition to not being able to blog like I would like (my therapy) I've been unable to do anything physical due to my back issues.  Grrr!  More on that later...

Two, I'm in focus mode now.  Which I think is kinda like auto pilot.  I can't believe it, but surgery is just one week from tomorrow (Wednesday).  The boys are headed to Grandma's on Friday and we are headed to Boston on Sunday (pre-op is on Monday).

So, I've had to narrow my focus to just this week.  I went through my "to do" notebook last night (Monday night).  I ended up creating two new lists.  One that has to be done (okay, should have been done) at some point in the near future.  For example, "write thank you notes."  Yes, I still want to thank you.  But, with everything going on this week, that's not going to happen.  Again. I'm really sorry.

And one list of items that MUST be done THIS week.  So far, there are 16 items on my list.  Today I accomplished three of them.  Progress!  Well, that's not totally true.  Not written on my list (but probably should be) is to do something "fun" each day.  Unfortunately, I have nothing planned for tomorrow.  That will have to be done on the fly.

Yesterday we went to the movies to see Monsters University.  Loved it!  And the kids did, too.  Harlie knew we were going in the afternoon, so in the morning she wanted to watch Monsters, Inc.  So cute!  Since it just came out on Saturday, the theater was pretty crowded.  I'm always nervous that we're going to have to suction Harlie during the movie.  We've only taken her to see a few movies and so far we've been lucky.  I've had to suction her before, but it's been during a loud part in the movie and I don't think it was noticeable.   But, yesterday, it was during a more quiet scene.  Crap.  I know some trach moms would argue for taking Harlie out of the theater to suction.  But, when she needs to be suctioned, she can be pretty loud.  And most people don't understand what they're hearing or what's "wrong" with her.  So, I think (in this case especially since we were in the middle of a crowded row) that removing her while she sounded like that would have been a far worse distraction (or annoyance) to others than just taking the five seconds to turn the machine on and get it done.  But, regardless, I still cringed.  I don't want to disturb others, I promise!  But, it is her airway.

And honestly, Cooper was worse.  Every five minutes he was asking me (without using his quiet voice) for "MORE POPCORN, PLEASE!"  I got a large tub for all of us (Terri, Harlie's nurse went with us) and some water cups for the kids to eat popcorn from and Cooper ate popcorn till it was all gone.  It took him most of the movie.  But, the only reason he stopped eating popcorn was because there was none left.  Wow, that kid loves popcorn.  

Looking back, I guess we were a bit of a mess.  Harlie had to go potty (ugh!) near the end of the movie.  Terri took her and on the way out the row, squeezing past people, they knocked over a woman's purse or something so a bunch of stuff fell on the floor (including a bunch of coins).  After Terri used the light from her cell phone to pick it all up, they left without further incident.  When they returned, they did not come back to their seats.  They chose two seats near the door.  Poor Terri.  I'm betting she will cringe the next time I say, "Hey, let's go to the movies!"

Anyway, today was less embarrassing (I hope).  We went to the pool.  Everyone's a loud mess at the pool, so we should be good there.

Tomorrow... I don't know yet.  Thursday, I think we're going to go to Chuck E. Cheeses.  Every time the commercial comes on for that place Harlie goes, "Mama!" points to the TV and signs "car."  She's been doing this for the past year.  She's never been.  So, as much as it pains me to go to that germ ridden place... I think I have to take her.  That is how guilty I feel about what the next six to seven weeks are going to be like for her.  I really think it's the least I could do.  So, we'll take tons of hand sanitizer and hope for the best.  I hope I don't regret it.

Oh! Since I blogged last, I heard from Harlie's pulmonologist about her lung CT scan.  Here's the summary from the radiologist's report:

Somewhat limited examination due to patient's inability to cooperate for high resolution CT. However study actually does show that there is no significant bronchiectasis in this patient. There may be very minimal bronchiectasis in the right lower lobe medially. There does appear to be some degree of chronic lung disease but it is markedly improved compared to 2007. Hyperinflation of the right upper lobe possibly due to some minimal narrowing of the right upper lobe bronchus near its origin. There are large vessels in the right hilum and superior mediastinum in this patient with extensive heart disease.

So, overall, a pretty good report.  Of course I'm aware that to some people, reading this about your child could be quite upsetting - but my perspective is SO out of whack.  In 2007, she had most of her right lung removed (it wasn't really lung, it was a mass of some kind).  So, it is wonderful to read that her chronic lung disease is markedly improved.  Of course the use of the words, may, possibly, and somewhat seem a bit non-committal in a medical report.  I don't know that it answers the question of why she needed oxygen so much in the past six months.  It would be nice if a summary of the report in layman's terms was provided.

Moving on...

My back really changed things the last few weeks.  Last week, I knew I had to be smart about making sure I did everything I could to help my back get better, faster.  Sitting unsupported (a seat with no back) was the worst.  I was better if I was moving or laying down.  So, I saw my chiropractor a few times.  And I laid down every chance I could get and iced my back as much as I could.  This made me very unproductive last week.  But, it paid off in the pain department.  I am MUCH better now!  This morning I took Rooney for a long walk and did some light running when Rooney would allow.  And I am so happy that I felt no pain!  I am going to play it very safe though, and take it slow in getting back to my old running/TRX routines.  But just knowing that things are better have already lifted my spirits.  Great timing, too!

I'll end this post with some recent pics...

Okay, maybe this one isn't so recent.  This one is from June 1.  It was Cooper's last soccer game.  I don't think I ever blogged about it.  Oh, maybe I did - he scored a goal in his last game.  Did I already talk about it?  Oh well, sorry if I did!

Rooney, helping me with the laundry.  He's such a good dog.

We met some friends at the pool for dinner.  Harlie's not the most affectionate kid, so this is a rare, wonderful moment.

I love our walks in the evenings with the dog and the kids riding their bikes (except for Harlie, of course).  I think it's safe to say that the kids like them, too.  Just look at how happy Harlie is...

Even some of the kids in the neighborhood like to go with us.

Philip, Cooper, Murphy and Cole

Did I mention that Cooper learned to ride a bike (without training wheels) recently?  Oh, I am such a bad mom sometimes!  Well, he did and he's doing great!  He's the most polite kid sometimes.  He can't quite get started by himself yet, he still needs a push.  And he is so quick to say, "Thanks, Mom!" every time.  And he's so genuine when he says it.  It's so cute.  And while riding it the other day he said, "Mom, I really love my new bike. Thanks for getting it for me!"  It's a hand-me-down, but he doesn't care!

Okay, that's it for now.

Thanks for reading!
~Christy

Highlights from recent...

Wednesday, June 12

I took Harlie to school since Terri had the day off.

I had a cart with wheels full with the suction machine, my bag, Harlie's lunch box (if only it had a normal lunch in it!) and her backpack.  Then I carried her oxygen tank.  Our whole morning is upended when I have to leave with her shortly after 7am.  By the time I got her to school and unloaded everything, I was already exhausted.  And I wasn't the one on oxygen.  Sometimes I wonder if I push her too hard.  I definitely looked at the cart and then her and thought, "What am I doing to her?"  Yet, as you can see in the picture, she's still happy.  I don't get it.  But I am grateful for her ability to find happiness in the little things, despite the big things that suck.  That's my girl!

Thursday, June 13

Cooper finished swim lessons at Aqua Tots.

No, he cannot swim independently - yet.  But he had so much fun trying.  Every time his head came out of the water, he was smiling.

Friday, June 14

The last day of school for the kids.  Murphy was very sad to say good-bye to his third grade teacher, Mrs. York.  She is so wonderful.  She was Teacher of the Year this year and it was so deserved.  Murphy was especially sad because Mrs. York is moving to a different school due to redistricting.  Mrs. York, we will miss you!

And Harlie had a fun last day.  Here is a picture of her and one of her favorite friends on the last day of school.  Just get a look at that smile on her!

This kid is so good to her!  He gave her his piggy bank at the We Heart Harlie event, and his dad told me that he insisted on going to her event vs. a birthday party he was invited to.  Love his priorities!  And he brought her roses on the last day of school!  Love him!

Yes, she was still on oxygen on and off that day.  But, she's off now!  Tonight will be the second night without it.  Woohoo!

Saturday, June 15

It had been 10 days since I last ran.  You might remember that I pulled a muscle in my back during our trip to DC.  I get so cranky when I don't run for that long.  I need my stress outlets - NEED them - and if I can't blog, or run, I definitely feel "off" and more easily sad.  Nine days after pulling that muscle, I grew impatient and tried to run.  Big mistake.  BIG.  Mistake.  I didn't get very far (like a quarter of a mile) and had to walk home.  So, that put me back a ways in my recovery.  And I am now paying the price.  It hurts to do anything.  So, now I'm even MORE crabby than I was before!

Monday, June 17

Cooper broke our iPad.

This sucks really bad since we are just TWO weeks away from Boston.  And there is NO way I am going to an airport, getting on a plane, spending all day in the hospital for pre-op stuff, then spending the following x amount of days in the hospital - with Harlie and NO iPad.  Which means we have to replace/repair it.  Clearly, we will invest in a cover that cannot be removed easily by the children Cooper.  And I will have to adjust some media rules around here.  Of course adjusting the rules isn't the hard part.  It's the enforcing them.

Later that night we had Murphy's second swim meet.  God bless that little guy - swimming does not come easily to him.  Last week he came in dead last in 50 freestyle.  Since he just turned nine, he moved up into the next age bracket and now he has to swim 50 meters.  After he got out of the water he asked, "Mom, what place did I come in?"  Um, considering no one was in the water, that would be last, son.  He was unfazed.

This week he swam in two events - 50 freestyle and 50 breaststroke.  His freestyle was way better than last week's.  And when he walked up to me fresh out of the water, he said proudly, "Mom, I beat one person!"  Now that's progress!

He did great with his breaststroke, except he touched the wall at the turn with only one hand, so that disqualified him.  But, if it weren't for that he would have finished in the middle of that heat.  If he could just get the diving thing down pat, he'd be way better off.

Tuesday, June 18

Harlie had her second CT scan in just under one month.  I hope it was worth the radiation exposure!  I don't know when I'll get the results.  Hopefully soon.

She was such a champ.  She walked right in and knew exactly what to do.  She told Terri to take off her hearing aids (because that's what she had to do last time).  The only thing she couldn't do was hold her breath.  They wanted her to do that for part of the scan.  But, she doesn't know how to do that.  So, that didn't happen.  Hopefully we will still get some good info.

Okay, those are the highlights for now.

Quick Update. Oxygen. Ugh.

I'm going to try to make this quick... it is already super late and I have another long day tomorrow.

A couple of posts ago I mentioned that Harlie had been coughing up some bright red blood and blood clots. Well, I ended up emailing her pulmonologist.  He was thinking maybe it was bronchiectasis and suggested a CT scan of her chest.  That is now scheduled for June 18.

Since then, the blood has come and gone.  And then partially come back again.  He also offered antibiotics.  But, since she was acting fine (blood was the only sign that anything was amiss), and we haven't confirmed diagnosis, I really was hesitant to start her on antibiotics.  She's been on so many.  And they usually wreak havoc on her GI system.  So, I held off, waiting for another sign to tip me in that direction.

Sunday morning was kind of rough.  She had a really barky sounding cough. She kept on pointing to her trach (sort of like she does when she's telling me she needs to be suctioned).  And she went around and opened all of her drawers with medical supplies in them, clearly looking for something.  She has never done that before (except to get a q-tip out or something).  I wondered if she was trying to tell me she wanted a trach change.  Maybe her upper airway was swollen, reducing her air leak around the trach, thereby reducing her normal air flow.  So, I showed her a new trach and she said, "yea" and then went and laid down on the bed so I could change it.  Crazy!

She was fine the rest of the day. But, Sunday night, her sats started to drop while she was sleeping.  We went on ahead and turned on the oxygen.  She was wide awake at 4am and there was a problem with the equipment.  So, I had to get Tom up to help me figure it out.  We're pretty positive that she never fell back asleep.  She was up way before her normal time and she was itching to get out of bed.  She was playful, happy and ready to go to school.

But, she seemed tired once there.  And she had developed a wheeze when inhaling.  That you could hear while standing next to her.  So, I went and picked her up from school and took her to see her pediatrician.

I brought him up to date and he agreed with my decisions so far.  He said she didn't seem sick to him at all.  Just that her upper airway sounded swollen (like croup) and that I should see how her pulm feels about steroids.

So, I emailed him again and he said if she seemed well enough to go to school, he wants to hold off on the steroids.

That was on Monday.

Today (Tuesday) I had to work REALLY hard to get her out of bed.  Harder than usual.  And when I laid down on her bed to keep her from getting back in it, she laid on the floor.  Hmm.... I gave her a few more minutes and then checked her sats since she had been off oxygen for a few minutes.  They were low.  Too low for me to send her to school without oxygen.  And I only have two tanks.  So, I kept her home.

This is so frustrating.  She really seems WELL based on her behavior and energy level.  She had a great session with the HI teacher that comes to our house weekly.  Cheryl said that Harlie was so engaged today! So, how sick could she be?

I asked her if she felt good or well and she answered, "well."  Then she signed "better."  So, I took her off the oxygen so we could all go for a walk with the dog.  There is something about that activity that I love.

We took Rooney off his leash to let him run around a bit and Harlie got out of her chair and "ran" around a bit, too.  She seemed perfectly fine and well, and was super playful and happy.  But her nails were kinda blue.  We didn't take the oxygen with us.

Since Cooper rode his bike without training wheels (he just learned a few weeks ago and hasn't been able to ride lately) we went to Bruster's for ice cream.  Harlie licked/ate more of her ice cream cone than ever before.  Maybe 10-15 licks instead of her normal 2.  So, again, how sick can she be???

We got home and her sats were in the low 70s.  Ugh.

So, now we have pretty much the same situation we had in the winter.  She appears to be fine, yet her sats are in the tank.  What gives?

Well, no one knows.  Her pulm told me that a chest CT scan is the equivalent of 50 chest x-rays.  Considering she just had a CT scan a few weeks ago, that seems like a lot of radiation in a short period of time.  So, since the blood appeared to be going away, he was thinking it wasn't worth the radiation.

However, now I am thinking it is.  This whole oxygen thing while appearing to be perfectly fine is really bothering me.  Is there something else that's causing this that a CT will show?  She hasn't had a chest CT in years and years and years.  It might be helpful to see what's going on in there.

But, unfortunately, that's not going to help her get to school - and stay there - for her LAST week!!!  It kills me to think she could miss the last freaking week of school.

Terri (her nurse) is off tomorrow.  So, now I'm trying to decide what to do with her. Take her with oxygen?  Keep her home?  I DON'T KNOW WHAT TO DO!!!  There is no easy answer.

I guess I'll have to wait and see how she does tonight, and how she looks/acts in the morning.  I am not a happy camper right now.  I just want her to be well.  And if she's not, it would be kinda nice to know what's going on so we can try to help her.  I'm so over living in the dark.

Her pulm prescribed a new breathing treatment.  But, I didn't have it until right after I gave her her normal breathing treatment.  So, now I can't give it to her until morning.  I hope it does her some good.

 Okay, I am falling asleep while trying to write this.  I will try to update again tomorrow...

Thanks!
Christy xo

GI appointment in DC

Yesterday was Harlie's GI appointment in DC.  We scheduled this months ago.  But despite having plenty of advanced notice, it was still a crazy morning, with last minute arrangements being made for the boys.  Cooper is home all day.  And he has swimming lessons in the middle of the day.  And then Murphy has swim team practice in the afternoons, after he gets home from school.  The logistical issues were car seats, transportation to and from, care in the morning, care in the afternoon.  Arrangements made in advance changed due to circumstances out of my control.  No one person could do it all.  So, I had to piece it all together using several different people.  It was crazy.  And I hate logistics.  Thank you so much to my Mom, Bethany and Kayla!  Life savers!

Anyway, the point of the appointment was to follow-up on the bleeding incident that happened back in February.

To recap quickly, Harlie had some (a lot, rather) bleeding during a bowel movement, which lead me to take her to the ER.  The GI doc that was attending that night, did not come to see her, but admitted her and ordered a bowel prep (clean out) so he could scope her in the morning.  He came by in the morning for about two minutes.  I never had a conversation with him.  Never.

In fact, one memory stands out in my mind... as soon as he got to her bedside, the first thing he did was turn to her nurse and ask why Harlie was there.  Meaning, why was she in the step down unit vs. on the floor (he sounded annoyed).  I remember thinking, um, hello?  I'm over here.  Hi, to you, too.  And then I thought, why does he care where she is?  She's here because of her trach, but whatever. Was the unit she was in further from where he normally travels?  Is it not a place he likes to go?  Is it more expensive than the floor?  I don't know.  I just remember it annoying me that that was his first concern.

He left and never returned.  All communication was through various residents.  I would ask them a question(s) and then they would page him.  He would call back, answer the question(s) and then they would come tell me what he said.  It was awful.  Way too much room for error.  And as you can imagine, his answer might lead me to ask another question, which would start the whole process over again.  And to make it even worse, the resident I spoke to wouldn't return, but a new one would come into the mix.  Because I never got to have a conversation with him, I never felt confident in his diagnosis.  And there was no follow-up.  And, there was no scope.

I really can't say enough horrible things about that stay and the treatment (or lack thereof) we received.  I will never see that doctor again.  I remember one doctor coming to talk to me during the stay and he said that Dr. G is a good doctor.  Well, he might be knowledgeable.  But, if he doesn't want to talk to a parent who is willing to listen and learn, then he sucks.  Period.

So, I came to the conclusion that if we are ever in an emergency and it's GI related, I can NOT take her to the only facility that I'm comfortable with here in town.  With this particular doctor there, I will never know if he'll be the one "attending."  Which means I have to drive her to DC (two hours away with no traffic).  Which means I need to have her be seen by a GI doc there so they are familiar with her.

That appointment was yesterday.  And it was SO worth the wait and the drive!  Our appointment was at 1:30 and we left at 3pm.  It took eight hours of my time to have that appointment (traffic coming home was horrible).

Dr. K took the time to sit down and explain everything to me.  He also had great bedside manner with Harlie.  He spoke directly to her and he explained stuff to her during the exam.  After we went over her history and he examined her, they took an x-ray of her belly.

Then he returned and explained more stuff to me.  Then he made some changes to her regimen, which totally make sense.  I left feeling heard, educated, not alone and with a new plan.  I left happy.

I may not be the smartest person, but if you take the time to explain it to me, I will listen and I will learn.

With the past hospital stay, it took WAY more time to go back and forth all day (which resulted in frustration and confusion) than it would have taken for him to just sit down and talk to me. The least he could have done was talk to me on the phone.

Anyway, I am much happier now.  And I think Harlie will be happier, too.  She complains about her stomach hurting her every day.  Hopefully, with this new plan, she will be pain free.

Oh, I forgot to tell you that on the way up to DC, I had to pull over to suction Harlie.  I HATE doing that.  I pushed it as far as I could, but she sounded horrible, couldn't clear it on her own and there was no exit in sight.  So, I looked for the widest shoulder I could find and pulled over on 95.  I think that is so dangerous.  But, I didn't feel like I had a choice.  After I suctioned her, I ran to get back in the car.  When I saw a small break in traffic I ran to jump in as fast as I could.  And since I didn't want to open the door all the way, I tried to squeeze in really fast.  And I pulled a back muscle doing it.  Crap.

I tried really hard to take it easy after that.  So, hopefully it didn't tighten up too much after that.  We'll see.  Well, that's it for now.  

Thanks!
Christy xo