We are home

Sorry it's been so long since my last update.  Things have been crazy busy.  Here's the rundown:

Thursday
So, we had a priority discharge for Thursday morning.  The last time we had that was May 11, 2011.  It was Murphy's birthday and I wanted to be home before he got home from school.  They were awesome and I was gone by noon, if I remember correctly.

However, this priority discharge didn't happen.  The process was painfully slow.  To give you the full picture, I need to give you some background info.  So, whenever you have anesthesia, your bowels go to sleep, and it takes time for them to wake up and start working.  But, in the meantime, it leads to painful gas pains and constipation.  This process has gotten progressively worse for Harlie with each surgery.  I try to learn something from each experience to try and make the next time better for her.  I believe she has low tone in the GI department anyway, and having anesthesia on top of it, makes for a painful recovery - for both of us.

Despite all my experience and efforts to make things better, this one has been the worst yet.  We never stopped her normal daily regimen of Miralax.  But, her belly is so distended and hard and she is clearly in a lot of pain.  And it doesn't help that she can't (or doesn't?) communicate where her pain is - her belly or her chest - so we can concentrate on one area.  To give her pain meds for her chest (something stronger than Tylenol) means more suffering in her belly since narcotics slow the bowels down even more.

We tried several things in the hospital, but hospitals move too slow for my liking.  On Thursday morning I asked for more ammunition, but was told anything else would be too extreme at this point.  Fine, whatever, I'll have her home in a few hours and I can do what I want, was my thought process.  Waiting for them to agree, suggest, order, deliver, administer, etc. seemed way too much to me at the time.  Plus, to be completely honest, I did not like our nurse practitioner who was in charge of us and our discharge.  I find her to be rather "know-it-all" which I think is dangerous in the medical field.  Especially when dealing with someone like Harlie, who bucks the system at every opportunity.

It also didn't help that I have dealt with this person before - when she was in the wound care/trach department.  Trust me when I say that she was not helpful when it comes to Harlie's trach.  And unless you've been a trach specialist (is there even such a thing?) for years and years and years, I'd like to see someone who can "help" me when it comes to Harlie's trach.  I have taken care of her trach 24/7 for almost 5 and a half years, whereas any hospital employee works about 32-40 hours per week and probably does very minimal hands-on stuff when it comes to trach care.

For example, last year when Harlie was in after her spinal fusion, this person brought some new nurses that had never seen a trach changed before.  She started to "teach" them by changing Harlie's trach, which I was going to let her do.  Until she got out a table full of supplies - gauze, sterile water, saline, etc.  None of which is used when I change Harlie's trach.  Then she put the trach ties on backwards (upside down, maybe?) on the trach.  At that point, I couldn't take it any more and I took the trach from her, fixed the ties and changed her trach in about 1.2 seconds and was done.

Anyway, the whole thing just rubs me the wrong way.  I can see someone coming in and checking out her trach and stoma to make sure everything looks good (and looks like I take care of it) once.  But every day?!  That's a little ridiculous, especially when you can see that everything looks great.

Anyway, my whole point is that I didn't have a lot of trust in this person's abilities before this hospital stay.  She said they could give her some stuff that would probably help.  But, at that time, we were about to get in the car for several hours.  So, I told her that I would just do that stuff when I got home.  Had I realized that I wouldn't leave for another FIVE hours, my decision would have been different.  Five hours of a wait equaled seven to eight hours before we got home.  Ugh!!!

I don't believe she's ever been discharged home without having some degree of success in the hospital.  But, I didn't think we were in good hands!  I just wanted to get her out of there.  And, yes, I wanted to make it to Murphy's school musical.  However, had someone I trusted argued that she should stay, I certainly would have.

By 3:30ish I had lost my patience and I packed Harlie up and walked towards the nursing station.  Her nurse (who seemed to be trying her best) was printing out her discharge paperwork.  I signed it, but it didn't have her follow-up appointment on it.  And since we have to go back to DC for that, and be seen by a couple of different departments, I wanted that already coordinated.  The nurse said that she had been trying to get the NP to put it into the computer but she hadn't yet.  So, I walked to her office (the NP's).  I asked her when the appointment was - got it and said thanks.  Then she said, "I'm going to print it out in just a few minutes."  Yeah, right.  I think I've heard that before.  So, I politely said, "Okay!" and then promptly walked to the elevator and left.

I went over to the CICU to say good-bye to Kim and Adelynn.  While there we ran into Heather (our social worker) and Dr. Jonas (our heart surgeon).  So, we chatted and took some photos.

Adelynn, Dr. Jonas and Harlie

Heather, Me, Dr. Jonas and Kim.  And Adelynn and Harlie, of course.

While we were over there, I got a call on my cell from the nurse on the HKU.  Oops.  She said she needed to give me some papers (you don't say?) and that she would run it over to me in the CICU.  Okay, fine.  But, time passed, we were done with our pictures and had said our good-byes.  It was time to go.  But she wasn't there yet.  I waited another several minutes.  And then I left.  

I got to my car and put Harlie in her seat and started to get her movie ready when I heard, "Mrs. Holton!"  Oh geez.  That poor nurse has been running all over looking for me.  I did feel bad, but hey, I had to GO!  And here's the thing about that paperwork - I didn't need it.  It was stuff for her local cardiologist (I doubt he even needs it) and we won't be seeing him until after our follow-up appointment back there, which meant I could pick it up next week and all would be fine.  It wasn't worth missing Murphy's school performance for, that's certain.  

But, the nurse was obviously stressed and in trouble by that stupid NP and started to cry.  I gave her a hug, explained why I left without it and told her to relay that info to the NP.  Then I had to give her a little pep talk to try not to let the NP get to her.  If she takes good care of her patients, she'll do just great.  I think most parents are going to see through this NP, anyway.  

So, finally, at 4pm we got on the road.  Traffic was awful.  And despite my being a pretty good rule-follower (except when it comes to leaving a hospital without "proper" paperwork) I jumped on the HOV (it's 3+ riders from 4 to 6pm).  I figured if I were stopped I had a pretty good excuse.  

I pulled into the driveway at 6pm and was at Murphy's school for the show at 6:45ish.  Whew!  I hated getting home and leaving Harlie so fast.  That was not what I wanted.  But, Brandy came over and Maryann took Cooper to the playground so Tom and I could go watch Murphy.  

I've been meaning to talk about how difficult it is to transition from the intensity of Harlie's medical issues to the "normalcy" of an event.  And going to the spring musical was no different.  It's weird.  It feels awful.  I feel like I haven't even taken a deep breath and I'm somewhere TOTALLY different than where I was just 3 hours ago.  Just 3 short hours ago I was surrounded by sick, hurting, children, some of them chronically (regulars at the children's hospital) to being at this school where most of the kids there have never set foot in a children's hospital.  And most of those parents who have most likely never held their child down to get an IV (or many), change a dressing, or given them an enema.  They don't know what anesthesia or blood smells like.  It's just weird.  Two different worlds.

In moments like that I feel so different and alone.  And then while I'm trying to enjoy watching Murphy be totally typical, I find myself thinking about - and worrying about - Harlie.  How's she doing at home? What could I have done to make that hospital stay better?  Should I have taken her home?  And what is it going to be like when it's her class doing something like this?  Is she going to be able to participate?  Will she be able to sing?  How am I going to watch without crying my eyes out?  

Then I feel guilty that I'm thinking about all that other stuff and not concentrating on Murphy.  It's really awful.  

And then after the performance one of the moms from Murphy's class came up to me to ask me how Harlie and I were doing.  She was so nice and she recognized that pulling into the driveway at 6pm and standing there 45 minutes later was stressful - and weird.  I was so thankful.  She asked me if there was anything she could do for us.  I told her that her just saying something to me was enough for me.  So many people are so uncomfortable saying anything at all.  The fact that she got over her own uncomfortableness to offer me some kindness was all I needed to feel a little bit better.  

We went home, had some ice cream (I fixed a drink for me) and then we hung out for a bit.  Then we all went to bed.  Ahhh, my own bed!  I know Harlie missed her bed, too, because the second Tom put her in bed, she fell sound asleep.  

Here are some pictures of our week's accommodations:

My bed/couch.  Looks comfy, doesn't it?

Harlie's bed (this is in the HKU - not ICU).

Friday

So, Harlie's last meal was sometime Wednesday afternoon.  Her belly was so distended, the thought of feeding her seemed especially cruel.  I asked her if she was hungry and she shook her head no, every time.  By Friday morning, with no progress in her bowels, I was getting worried.  She was clearly in pain and I wanted to make her feel better.  

So, I called her pediatrician, told them all we had done (all the normal things - suppository, enema, colace, miralax, lots of water, etc.).  I wanted something like Go Lightly (the stuff you drink before a colonoscopy) through her g-tube to take the work out of it for Harlie.  He said that would be too hard on her intestines.  So, he suggested mixing 8 ounces of Miralax powder with 32 ounces of Gatorade and giving it to her over 4 hours for a one-day cleanse.  Okay, great!  Started the process at 9:45am.  Had little success with that.  Which was really disappointing!  I thought for sure that would make her all better!

Harlie's teacher sent her a video of her classmates saying hello, telling her they missed her and loved her and that they hope she gets better soon.  One of her friends spelled "I love you" in sign.  It was so cute!  And it made me cry.  Now all of her hospitalizations are affecting her friends, not just her family.  Wow.  She's really growing up!  Then she came by to bring a banner that they made and signed.  

I gave Harlie a bath that night.  Until the steri-strips come off the incision, you can't let it get wet with bath water.  You have to use clean water and drip it on the incision.  Then drip clean soapy water on it.  Then drip clean water on it to rinse it.  Then pat (very lightly because she's super sensitive) it dry.  So far it is still bleeding a little.  It has gotten blood on all her shirts/night gowns.  And when it got wet, it actively bled for a bit.  So, I need to e-mail my contact up there to make sure that's okay.  I've never taken her home so soon after this kind of surgery.  So, maybe she's moving too much (which is unlikely) or her coughing and distended belly are putting some pressure on it internally.  I don't know.  I'll just watch it for infection.  I DO know what that looks like!  

Then with her night meds, I gave her a flush of plum juice and Gatorade.

Saturday

When I went to give her morning meds, the purple color of last night's juice came up the tube.  Now that's strange.  I gave that to her last night - on an empty belly.  It should be long gone by morning!  Then I listened to her bowel sounds and I didn't hear anything.  When Brandy got here I had her listen, too.  She didn't hear anything, either.  

I seriously contemplated taking her to the ER here for abdominal x-rays.  But she told Brandy she was hungry, so Brandy fed her (orally) 4 ounces of formula and about 3 ounces of pureed plums.  That was her first meal since WEDNESDAY!  So our thought was that maybe her belly was empty (even though it looks FULL).  She probably has an ileus, which she's had before.  But, last time not feeding her was the answer.  This time, it looks like feeding her could be the answer.  It probably has something to do with timing of the feeding, discontinuing the narcotics, etc.  

Regardless, she's asked to eat three times so far already and it's 2pm.  So, I think that's a great sign.  She's also gotten up a few more times, asked to play the Wii and she's now sitting in the chair instead of on the couch.  She even got up to fix herself a cup of water and sat at the kitchen table to drink it!  While sitting there, Cooper came up behind her with the stethoscope and listened to her.  Then he said, "I'm going to fix Harlie."  Break my heart!  He is the sweetest, most affectionate child I've met.

Okay, this has been long enough and I need to feed her.  So, I have to go.  I have lots more to talk about (shocker, I know) so I'll try to post another one tomorrow.  

Thank you for all the love and support this past week (and the past 5+ years)!  We really couldn't survive this life without it!  

Much love!

~Christy