Saturday, November 30, 2019

Day 13 Update

Wednesday, November 27

Whew, I am feeling especially tired today.  As I got up and got ready to come into the hospital this morning, I was kinda shocked at how tired I felt.  I said to myself, we are only on Day 9 - that's nothing!  We've done way longer before - many times - and I don't remember feeling this run down.  I actually thought to myself, how in the world did I handle her two month stay in DC?  Heck - I even walked to and from the hospital every day.  HOW DID I DO THAT?!  It is funny, I hear that all the time from people - I don't know how you do it.  Well, to be fair, I don't, either.

Honestly, it feels like that two months was just yesterday.  But, it will be two years come February.  Can you believe that?!  How was that almost two years ago? It is as if I was already tired from that stay and this one happened right after.  I guess that just proves that some "stuff" never goes away.

Harlie is back on trach collar (off the vent and pressure support).  They put her on trach collar at 9 am and it is now 2:15 pm and she is doing well.  She is on 55% oxygen, so that's good, too.  Still too much to go home on, but she's getting there.

Caylee came to visit today.  And my friend Shawn showed up with pies from Proper Pie.  That was such a nice surprise - thank you, Shawn!

PT came and she actually got up and walked around the unit.  That went well.  The Turkey Trot is tomorrow morning.  Harlie's teacher, Laura, offered to come and sit with Harlie so I can go to the race.  How nice and generous is that?

Thursday, November 28 - Thanksgiving Day

So, the race was this morning and it was amazing.  I haven't heard the exact final number, but I think it was just under 600 people!  Kat Simons and Skip from Mix 98.1 were there.  Click here for their Facebook live video at the start. My friend Jill Blankenburg sang the National Anthem and she did an awesome job!  Really, she is so, so good!  Andy Moser from Go to Eleven Racing and Sally Young from We Heart Harlie & Friends, did an amazing job organizing this event.

Oh, a few days before the race, Cooper and I were looking at the list of registrants and he said, "I love how many families are signed up."  I thought that was so cute.

I am so bummed.  I left my phone in my car, so I didn't get to take any pictures.  Plus, there were people there that I specifically wanted to find and thank in person, but I never saw them!  There were were just so many people and I am so tired, my brain is just not working right.  People like Rob Allen and Brad Onofrio - they were supposed to push Harlie, but since she wasn't there, they pushed an empty stroller in honor of her.  And EMTs, Andy and I don't know who else he brought - from Lakeside Volunteer Rescue Squad.  Thank you to every single person who chose to spend their Thanksgiving morning with us - volunteers, athletes, family members, supporters, etc!  We are all so grateful for each and every one of you!!!

It is now 2:00 pm and me and Cooper came down to the hospital to hang out with Harlie.  Her teacher sent me a text earlier to bring Harlie's speaking valve.  I couldn't find it so I asked Laura to ask Harlie if she knew where it was.  She did.  It was right where she said it was and it has been almost three weeks since she wore it last.  Pretty impressive if you ask me.

So, she put it on as soon as we got here and started talking and singing.  I told her to put a movie on so the three of us could watch it and she said, "No, I have too much singing to do."

Then Cooper made a noise that she didn't like.  She said Cooper, stop it - over and over again.  Then she said, "Mom. Why did you bring him?"  She is ruthless.

My family came to the hospital at 4 pm to have dinner with us.  The cafeteria had Thanksgiving dinner.  It was surprisingly not bad!

Lee (bottom left) was photoshopped in since he is the one that took the picture.
After we ate, we went to the family waiting room outside the PICU.  We took turns taking people back to see Harlie. 

Nana and Harlie

Harlie and Maggie

Cooper, Harlie and Murphy
She had a really good day today.  They got her down to 30% oxygen.  Her respiratory therapist said I should bring in our portable oxygen concentrator so we can put her on it here and make sure it is enough for her.  I'm thinking we can probably bring her home tomorrow!

On the way home Cooper said, "It was a good Thanksgiving.  I had chocolate cake and Dr. Pepper!"  I love that he didn't think spending Thanksgiving in a hospital was a bad thing.  In fact, we had a lot of fun, all things considered.  Having family here tonight really lifted our spirits.

Friday, November 29

I can't believe it, but I got a parking spot on the first level which means I don't have to put Harlie in the crummy parking deck elevators.  I was totally confident we would be bringing her home today.

I was so wrong.

Apparently she had a coughing episode last night and they had to turn her oxygen up to 60%.  We were thinking that once she woke up, she would take deeper breaths and be able to come back down.  Unfortunately, that didn't happen.  She sounded so dry and it was difficult to suction her.  Luckily, Friday is trach change day - so we changed it.  And, wow, am I glad we did!  She had a huge plug at the end of it.  We were hoping that would improve things for her.  It didn't.

Throughout the day she had an increased work of breathing and need for more oxygen.  I think the lowest they got her was 45%. 

Saturday, November 30

So, yesterday I worked on this blog post for several hours.  As you can tell, I try to write when I can, but there are LOTS of interruptions in the hospital and it is very hard to focus.  I finally finished and when I hit the publish button, it just went away.  I was so upset.  It is now 6:00 pm and I am finally trying to re-write what I lost.

Last night Tom and I were feeling very down.  This roller coaster we live can be so exhausting.  The ups, the downs and how quick things go back and forth... it wears on you.  We are constantly re-grouping and changing our attitudes to make the best of whatever is happening.  It gets old and we were pretty angry about it last night.

This weekend we were supposed to go to Pittsburgh, PA to see Tom's family.  They planned a surprise party for his mom and Cal, in honor of their 25th wedding anniversary.  That event is tonight.  Then we were supposed to go to the Steelers vs. Browns game on Sunday with our friends Mike and Laura.  Caylee (Harlie's nurse) and her boyfriend Blake won two tickets to that game at the We Heart Harlie & Friends Gala.  So, we all had plans for that day.  Clearly, we had to miss all of that.

We have lived not being able to make solid plans for 13+ years now.  It is very frustrating.  ALL of our plans come with - well, as long as Harlie doesn't get sick. We see so many people who have the freedom to want to do something, plan it, look forward to it and then go do it.  Not us.

A little while ago, an amazing opportunity landed in our laps.  My friend Mona works for a company helping veterans.  They were looking for some veterans (Tom was in the Navy) to go to New York, and go to the Christmas tree lighting at Rockefeller Center and be on stage with Hoda Kotb!!!  She asked me if we wanted to go.  I told her that seeing that tree - at any point - has been on my bucket list.  I can't imagine being at the lighting of it!!!  So, of course I said YES!  We get to wait in the green room until it is time to go on stage.  A sponsor for the program purchased our airfare and hotel accommodations.  I just can't believe it.  Insert giddy face here.

A couple of weeks ago, Mona said there was a glitch.  There has to be a rep "handler" on stage, so there isn't room for all five of us.  One of us has to wait in the green room and can't go on stage - and it can't be Tom since he's the veteran.  Clearly I can't ask one of my kids to miss it. So, it has to be me.  Insert are you kidding me face here.

It is disappointing that a company would ask a family to exclude a family member for something like this. Unfortunately, in our case, I feel like it is adding insult to injury since we already have to do that way more than we should.  So often, we have to exclude Harlie from activities she just can't do.  It kills me.  Insert sad face here.

But, as we often do, we have to make the best of it and the bottom line is that four of us will get the experience and I will still get what I've always wanted - to see the tree.

With only a few days before Wednesday, we were feeling pretty crappy and I hate to say it - pissed.  I don't want to miss this.  I don't want Harlie to miss this.  But, we can't take her on 8 liters of oxygen.

Anyway, I got up and came to the hospital this morning.  She had a decent night.  My niece Jordan and her husband John Mark, sent Harlie some stuff she can do in the hospital.  She loved it.  Here she is making necklaces..

My friend Sally came to visit and bring Harlie a turkey trot medal.  She loved it.  They rounded and we talked about how she went backwards and is just not progressing.  I said that I feel like it is my job to give them hints about her that might help them do their jobs (since they just met her and I've known her for 13 years). At this point, I have never seen her need so much oxygen for so long - even with "big" pneumonia.  So, I'm out of hints - except for one thing I noticed... her legs look swollen to me.  And I asked them if she could take a shower.  Her BAHA (hearing aid) site looks scabbed over and I really need to wash her hair and get that cleaned up.  Plus, she just needs a shower.  She hasn't had her hair washed in two weeks.

So, they ordered x-rays and blood work.  And the doctor examined her legs and said she has pitting edema - definitely has some extra fluid in her legs.  So, she ordered Lasix to help get that fluid off.  And they wanted to get another weight on her.

She got really ticked at us for the blood work - even though the nurse was able to pull it from her IV - this is the same IV she got in the emergency department two weeks ago!  Pretty remarkable.  Then, she was ticked that I was making her get a shower.  We made her walk to the shower (just a few rooms down the hall) and she griped about it until I started washing her hair.  Then, she was happy about it.  We got her weight (up FOUR pounds since she was weighed in the ED 13 days ago - so yes, she definitely has some fluid that needs to come off).

While I was changing her trach ties, I thought, hmmm.... maybe we are over thinking this.  Maybe it doesn't really matter how much oxygen we are giving her.  So, I told her nurse that I wanted to see what she would do without it.  She was okay with it.  She desatted to the low 80s and stayed there.  Before she would desat to the 60s and 70s.  So, she has now been on ROOM AIR for several hours and is staying in the low 80s.  I've actually seen 86!

She looks good - not working too hard and is in good spirits.  Very different than yesterday.  I really think that making her mad and upset (she cried) made a very positive difference in her opening up her lungs.  That's an actual thing in babies.

All showered, clean and feeling better!

Her doctor came back and we chatted - we are all in agreement that if she does okay tonight and looks like this tomorrow - we can take her home!  Man, things change so fast with her!

So, fingers crossed that we got the miracle we wanted.  It would be so amazing for us to go on this trip together.  It would be even more amazing if something changed and they let me go with my family to see the lighting on stage.  But I guess beggars can't be choosers.

This has been a very choppy post and I'm out of time, so please forgive my typos, etc.  Thank you for all your love and support - as always!

Much love,
Christy xo

1 comment:

Ellie Rose said...

I'm glad you're on the upswing, I'm hoping and praying you can go home.
Keep singing :)

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