Friday - Sunday Update

Hi!  All is well here.  Harlie is progressing nicely.

I "slept" here Wednesday night.  I felt so awful, but it had to be done.  They took her down at 6am Thursday morning.  We sat there for TWO hours until they FINALLY took her into the OR.  Luckily, she slept.  I played Candy Crush on my phone until I wanted to poke my eyes out.

Unfortunately she was asleep when they took her back.  I tried to wake her so she would know what was going on, but she's stubborn in her sleep, too.  I must say that I was really, really, really ready to for this process to end.

The surgeon came out afterwards and said that her wound looked great and that she closed it!! SHE CLOSED IT!  Woohoo!!!  I was so happy!!!  She sent a text to Harlie's surgeon in Boston to give her an update, gave me her card and said to call her if I ever needed anything.  It feels SO good to close this chapter!  Now it was time to focus 100% on her lungs, then we could go home.

Earlier in the am I sent a text to Tom that I wished I had some tissues with lotion in them.  The tissues at the hospital are only a touch better than sandpaper.  And my nose was already raw.  Just a little while later, I got a call from our friend Mike and he said that he heard I needed some Kleenex and that he was on the way.  I love my friends.  He brought them up to me right after I talked to the surgeon.  When I told him that she closed the wound, I couldn't hold back the tears of joy (and of pure exhaustion).  Ugh.  It's almost over.

Harlie woke up happy.  It was as if she actually understood.

She signed "home", something she rarely does while in the hospital.  I can't help but wonder if she was listening and understood that closing that meant no more OR and that she could go home.

Our wonderful neighbor, Cami, and her family, sent Harlie the cutest package with a coloring book and an adorable dog Webkin - and the best balloon ever!  Harlie saw it through the glass doors and said, "Mama! Look!" and pointed and I was so thrilled when they brought it to her!  You should have seen her face!

First time she wanted to do something other than watch tv.
Woohoo!!!

She clearly has a thing for snails...

And PT and OT came by today and they got her to play on a mat on the floor and got her to sit in the chair.  They brought her Legos and she played with them for hours.

Then my friend Miriam brought me a gift bag from her and Allison.  They were so generous and kind!  Thank you!

Thursday night was open house for the elementary schools here.  I asked my mom if she could come and sit with Harlie from 4pm till she went to sleep.  That way I could just stay home after the open house and get to bed early.  I was really feeling crappy by then.  Oh, I forgot to mention that since I was sick, the docs ordered a viral culture on her, so she went on contact precautions.  What a pain in the butt.  Every hospital employee has to gown up and wear a mask when they come into the room until the culture comes back negative (which takes days).

Anyway, as I was walking out the door a new doctor I have never seen stopped in to talk to me.  That conversation took way longer than I wanted, so I was way late leaving the hospital.  She was a Hematologist (blood doc).  Harlie's clotting levels (PT and PTT) were high(?) during her last stay (in February) and were high again this time.  From what I could gather, that means that she has a hard time clotting (and is an easy bleeder).  She's on aspirin, so I thought that was the reason.  But, no.  In this case, that has nothing to do with it.  It has something to do with Vitamin K and her lack of it in her system.  She went on to say that it was due to one of the following reasons:

1) She doesn't get enough of it in her diet, which we can immediately rule out since she's on formula.
2) Her body isn't processing and she's just pooping it out (her words, not mine!).  She said that seems unlikely, too, since that would cause poor weight gain.  And she's gained three times the expected amount this summer!

or...

3) She has some very rare autoimmune blood disorder that's called... something-or-other.  It's genetic and caused by a recessive gene and that both Tom and I would have to be carriers, and we should get genetic testing done blah, blah, blah.

I think at this point I stopped listening.  I actually told her that I was sorry, but we are not accepting new specialists until 2015.  We are booked solid.

The bottom line is that I really don't see how this can be a big deal.  Every surgeon has checked her PT and PTT levels (she's had major surgery more times than I can count) and it's never been mentioned before.  Whatever is going on cannot possibly be severe.  And us get genetic testing?  Hell no.  It would take months and months and we would walk away with nothing.  No, thank you.

I'll skip ahead a bit just to end this chapter since I'm talking about it now.  A few days later I was told that her odd levels were probably due to her being on antibiotics.  So, they added Vitamin K into her medications while she's on IV antibiotics.  Good.  Problem solved.  Although, I don't recall her being on antibiotics back in February, but whatever.  Moving on...

I left the hospital at 5pm.  UGH!  I knew I was tired because for the life of me I could NOT remember where I parked.  Eight levels.  I knew it wasn't the first several, so I took the stairs down and peeked out at each level.  I couldn't even remember where on the level I parked!  I finally found it.  Then crappy traffic!  Open house was 4pm to 6pm.  I wanted to go home and take a shower and look halfway decent, but that obviously wasn't going to happen.  So I got home at 5:30, ran upstairs and put on clean clothes and then we walked down to school.  Of course we forgot his supplies.  It took me a while to change gears from Harlie to Murphy.

We met his teachers.  He has two.  Meeting his homeroom teacher went fine.  After meeting him, we went next door to meet the other teacher.  She asked him if he was excited about school and he said, "No. It's like a prison. I'd rather stay home and play video games."

Seriously.

I wanted to smack him.  Right then and there.  The worst is that he completely misrepresented himself.  We don't own a Play Station or Nintendo.  The video game he was referring to was Minecraft.  Not exactly what I would think of when you say "video games."  And like a prison?!  Oh boy.

After that, Tom went out to eat with some friends that were in town.  Mary Ann (Tom's mom) got us Chinese food and then I headed to bed early.  My mom stayed with Harlie till well after 10pm!  I think they had a good time hanging out.

Harlie was still sleeping when I got to the hospital on Friday morning.  As soon as I walked in, Harlie woke up and asked to sit in the chair.

She really seemed so good.  Our goal was for her to get down to 35% oxygen, consistently, with no crazy desats for 24 hours.  By Friday morning, she was down to 30%.  Woohoo!

They rounded on her and the attending went over what needed to happen to get us discharged.  It was Friday before a holiday weekend.  All the follow-up appointments had to be scheduled, new meds had to be prescribed and sent to the appropriate places (IV meds come from a home infusion company vs. a regular pharmacy), an order for the chest PT vest had to be sent, all the docs from all the specialties involved had to give their okay, etc.  I was thinking late in the day, tops, for discharge.  Perfect, because Tom could come and help me after work.  

Soon after they rounded, our friend Dale came to visit!  We had a great time chatting - despite the fact that Harlie kept me hopping.  Thanks Dale!!

Dale and Harlie

 I tried to blog, but it was just too busy.  I guess since it was a Friday before a holiday weekend, everyone was working really hard to get out of there - so they were ready to discharge us by 3pm!  I sent a text to Tom asking him how soon he could get there, but apparently he didn't get it.  I packed everything up and took all I could carry to the car.  Then I came back for her and the rest of the stuff.  Then the nurse that has to go over all the PICC line stuff called.  She said she could be there by 4pm.  So, I just hung out and waited for her.  She went over how to use it (a refresher for me since it's been a few years since Harlie's last one).  And she said that our home health nurses (Terri and Brandy) aren't allowed to touch the PICC line.  So, that means we have to do it.

Luckily, they changed Harlie's IV meds on Friday.  She's on Zosyn, three times a day and Daptomycin, one time a day.  She was on Vancomycin, which was three times a day, too.  But, they switched her to Dapto to make our life a little easier.

Anyway, after that, it was time to go.  Harlie kept on pointing to her arm signing "off."  Normally, IVs are the last to go.  But, clearly, this one wasn't coming out.  So I told her that it was staying.  And she cried.  Oh, when she cries like that it kills me.  It's the defeated, I'm so sad cry.  Breaks my heart every time.  The only thing I could tell her was that it was either go home with it, or stay in the hospital.  She was happy after that.

 I know you can't see it all.  But there are three bags hanging from her chair.  And then I have her backpack on, and her oxygen tank across my chest.

So, we go out to the security desk to "check out" and the alarm is blaring.  Which shuts down the elevators.  Awesome.  So, we stood there for about 10-15 minutes.  Patience....

Then on our way out, a family of three held the elevator door for me when I was still pretty far away.  It was really cute.  Then when we got on the elevator in the parking deck, the people that got in with me squished all around so we could all fit in - but in a nice way, you know?  The elevator stopped on my floor first and the gentleman got out of the elevator to open the door and hold it for me to the deck.  I said he didn't have to do that because I didn't want him to lose the elevator - but then the woman in the elevator said, "Nope, I'm going to hold it for him."  And they didn't even know each other.  Something about them going out of their way to be so nice to me really got to me.  Keep in mind I was tired and sick.  So, I was weepy.  Plus, I think I was so happy to be leaving and going home.

Since it is now Sunday night - I can't remember the rest of Friday.  It was busy.  And Tom and I were both so tired, so we were not exactly getting along.  Plus, there was just so much stuff to have to put away and we had to figure out a new routine.

So, we were in her room, getting ready to hook up her last IV med of the night.  I reached into her closet to get a box of alcohol swabs and a shelf completely fell apart from the wall.

Awesome.

I had to laugh.  Even though I really didn't think it was funny at all.  Now I have another thing to do.

Friday night was fine.  Harlie slept all night.

Saturday was our 11th wedding anniversary.  We went out and ran some errands trying to get some finishing touches for my new home office.  I'll post pics soon.  I love it!  Now, if I could just get some time to focus on getting everything moved in and organized, that would be great!

After we had an early dinner, we came back home so we could help give her bath.  Since she can't get her PICC line wet, we have to give her a bath, not in the tub.  When we put her to bed, her sats just wouldn't come up.  We had a 5-liter oxygen concentrator, and she was on 5.  Still not getting into the 80s!  So, Tom brought up some tanks and hooked one in the line and we had to turn that up to 5, too!  That is way too much oxygen!  I can't give her much more at home.  I was definitely getting nervous.  So, I called our equipment company and told the respiratory therapist on call our problem.  She said that she would go to the office and see if they had a 10-liter concentrator.  Our pulmonologist was on call and she was going to call him to get an order.  So I asked her if she could ask him if I could give her a second dose of Lasix, since she only peed four times that day.  Both were fine.

So, she came out with three more tanks and the 10-liter oxygen concentrator.  She did ask me why they discharged her on so much oxygen.  This is definitely the most she's ever been on at home.  But, she was looking so good and her oxygen requirement was decreasing while in the hospital.  Ugh.  I was really hoping we didn't make a bad decision.  While she was changing out the concentrators, I was working on Harlie's new schedule.  Here it is.  Click on it to make it bigger.

Well, it's a work in progress.  A lot of work in progress.  She is a full time job!

While I was doing that, Tom wrote this on Facebook:

11 yrs ago today I married Christy Holton. Our lives have been quite challenging these past few days, months, okay years. Regardless, after these past 24 hours there isn't a doubt in my mind that we don't belong together. Our day was difficult and our night is shaping up to be even worse. We have no cards nor gifts for each other. Our date consisted of a few hours doing errands and a quick meal of Vietnamese food. Currently we are watching TV with my mom (thank you mom) and a stranger is swapping out Harlie's O2 concentrator ( cause well yea ours just died). BUT....I have a nice home, 2 reliable cars, a few awesome bikes, Rooney, a job I love, 3 beautiful children, and a nice glass of bourbon (thanks Neal). AND I have Christy by my side, til death do us part. Happy anniversary babe!

He is so good at that.  And he was right.  The night was horrible.  The RT did ask me why they discharged her on so much oxygen.  But, she was getting so much better!  And she was happy!  So I started to think about what's changed since discharge.  Three things...

1) They changed Vancomycin to Daptomycin.  Vanc covers more lung stuff (like pneumonia).  But Dapto is less high maintenance at home - if she doesn't have pneumonia (which we don't think she has).

2) She was getting chest PT, two times a day with the Vest.  But, we don't have one here at home yet.  So, she went from two times a day, to none.

3) I could have sworn there was a third thing, but it's late and I can't remember it right now.  Oh, yes!  They were giving her different breathing treatments.  But, I found the same meds in my closet (you know when I was cleaning up that freaking mess?).  So, we started them today.

Anyway, we were very worried that we were going to have to take her back to the hospital.  Ugh.  But, we managed to get through the night.  I gave her manual chest PT (which she hates).  And since I gave her a second dose of Lasix late at night, she had to get up twice to pee.  Which stinks for us, but is good for her lungs.

It is now Saturday night.

She had a good day.  She was very playful and happy.  And her sats were better than yesterday.  So, I'm hopeful that tonight will be a better night.

This morning I walked the dog to Starbucks and met some friends after they ran 14 miles.  I haven't been able to blog about it, but I haven't been able to run in weeks.  Well, I guess that was pretty easy to figure out from how crazy it's been.  But, I have an injury and it is killing me.  So, I walked the dog instead.

And I re-organized Harlie's closet.  I didn't take a picture.  But I will later because I know you're dying to see how much better it looks.

Okay, that's it for now.  I must stop.  If I could only blog more often, I wouldn't have to write such looooong posts.  Sorry about that!

Thank you for all your continued support and love!

Much love,
Christy xo