Weekends in the hospital are always way more depressing than a weekday. There are way less people walking around. The cafeteria is bare bones - only offering a small portion of what is normally offered. It really has a deserted kind of feel.
And I didn't pack any pants. I packed light and really wished I had my exercise pants to lounge around in while hanging at the hospital. Plus, I needed to get out of here for a bit. So, I walked to Marshall's by Fenway (which is less than a mile walk) and did some shopping. I got some pants, a new running skirt (yes, I still have dreams of running again one day) and a couple little toys for Harlie. I walked back and as I got off the elevator on our floor I heard someone yell, "Mommy!" And when I turned around I saw Tom, Murphy and Cooper standing there wearing their We Heart Harlie shirts!!! HOLY COW!!! It was totally awesome and definitely one of the BEST moments EVER. Tom got it on video and I've watched it so many times. I can't figure out how to post it on my blog. So, when we get home, I'll get Tom to work on it so I can show you.
It was more wonderful than I could ever say to be able to see them and have us all together again! And you can see how healing it was for Harlie, too! Just look at her face in this picture!
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| Happiest Harlie face EVER. |
You'd think that by now the boys would cooperate when getting a photo - but nope. Oh well, we're focusing on Harlie here anyway!
When we all walked in her room Harlie showed no reaction to seeing Tom and the boys. But, just a few seconds later she picked up one of her new toys and started calling Cooper and Murphy over so she could show them everything. And then the nurse was awesome and let her get unhooked so she could hang out in the back of the room with us. We had to leave to go eat and I thought she would be upset. She was really mad about having to get back in bed. And who could blame her? She's been in that bed for ten days straight! But she seemed fine with us leaving. After dinner, we came back and hung out until it was bedtime. Then me, Tom, Murphy and Cooper walked back to the hotel. I can't even begin to tell you how many times Cooper has told me that he loves me. He is so funny. And affectionate.
The boys had never flown before, so when they landed in Boston, Cooper opened the window shade on the plane, looked out and said in a very disappointing tone, "What?! We're back at the airport?"
The boys had never flown before, so when they landed in Boston, Cooper opened the window shade on the plane, looked out and said in a very disappointing tone, "What?! We're back at the airport?"
Anyway, I promise you, since their arrival - she's been a different girl. No more breathing support, her spirits are lifted and she is more than ready to go home. The ICU wanted to put her back on CPAP for the night. But, I asked them to wait until she showed signs of needing it. When I called in the morning, she was fine all night, and never needed it! Woohoo! I was hopeful that after going all night without it that they would move us to the floor and then discharge us home Monday.
Post-Op Day 11 - Sunday
Saturday night went well. When the team rounded, I asked them if there was any way to be able to get her discharged on Monday so we could all go home as a family. They were agreeable. They could see that she was so much better. But, they said that she was being sent to the cardiac floor and it would be up to them. In hindsight, I should haveasked begged them to let her stay in the ICU and discharge her from there. That way, we wouldn't have had to get a new team on board. But, I guess I was thinking that the team that knew her better would have more pull. Especially an ICU team.
So, she went back to the cardiac floor. And they wanted some good x-rays of her chest. So, we went to x-ray (the portable x-ray machine doesn't produce as good images I'm told). We went down with no monitor, no oxygen and in a wheelchair. This girl is ready.
The x-rays are still looking bad. At this point they are saying it's atelectasis (collapsed lung) versus pneumonia. But they also said that clinically, she's great. Which she totally is!
As much as I wanted us all to fly home together (wouldn't that have been so much fun?!) it was not in the cards. The 4pm flight today was booked. And that really was our only obstacle. Total bummer.
Post-Op Day 12 - Monday
After MUCH thought (oh, how I hate logistics!) we decided that it was best to try for discharge today, I will take her back to the hotel to spend the night, and then we take a cab to the airport first thing in the morning to catch the 11am flight HOME!!
They rounded this morning, and there is NO way they could guarantee they could discharge her in time to get us to the airport. And I really don't need that stress. Plus, she will be thrilled to be at the hotel. I asked them to get respiratory in here to see if they can rig up some way for me to give her humidified air with the oxygen. I will have a portable concentrator with us to take home and then we will ship it back here.
Of course we had to say good-bye to the boys...
So, it's now 11am, and I have to run a few errands so I don't have to take Harlie anywhere but straight to the hotel. One of our obstacles (which I totally wish I had thought of sooner) is the crazy amount of drool. She is unable to manage them on her own (by swallowing) so she is drooling a ton. And she hates it. So, I need to go find some bibs or she will go nuts. She hates for her clothes to be wet.
Going home alone with her was definitely not in the plan. But, there's really no way around it. And I really think I'll be fine. It gets us home the soonest. And that's worth it to me. So, this morning, Tom and I went through all our stuff and he took home everything I didn't need. So, I will have one small suitcase, the rolling oxygen concentrator, Harlie's backpack, my bag, the suction machine, and Harlie and the stroller. I can do this! I am SO excited about getting home I can't stand it!
One total bummer thing that happened today is her in-the-ear hearing aid stopped working. I'm guessing there's some dried blood in there somewhere. I tried cleaning it, but I still can't get it to work. Luckily, we have her BAHA, which works great. But, it's still very annoying that she doesn't have optimum hearing. We are going to be very busy with a lot of follow-up appointments when we get home. ugh.
Well, I need to run and get some things straight before discharge. Thank you for all your thoughts and prayers! You all helped make a difference and we are so thankful!
Much Love,
Christy xo
Saturday night went well. When the team rounded, I asked them if there was any way to be able to get her discharged on Monday so we could all go home as a family. They were agreeable. They could see that she was so much better. But, they said that she was being sent to the cardiac floor and it would be up to them. In hindsight, I should have
So, she went back to the cardiac floor. And they wanted some good x-rays of her chest. So, we went to x-ray (the portable x-ray machine doesn't produce as good images I'm told). We went down with no monitor, no oxygen and in a wheelchair. This girl is ready.
The x-rays are still looking bad. At this point they are saying it's atelectasis (collapsed lung) versus pneumonia. But they also said that clinically, she's great. Which she totally is!
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| Up and playing OUT of bed. |
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| Hanging with Daddy, enjoying the view. |
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| I think she reminds me of Tori Spelling. Which, isn't a good thing if you ask me. I'm hoping she starts to look more like herself soon. |
As much as I wanted us all to fly home together (wouldn't that have been so much fun?!) it was not in the cards. The 4pm flight today was booked. And that really was our only obstacle. Total bummer.
Post-Op Day 12 - Monday
After MUCH thought (oh, how I hate logistics!) we decided that it was best to try for discharge today, I will take her back to the hotel to spend the night, and then we take a cab to the airport first thing in the morning to catch the 11am flight HOME!!
They rounded this morning, and there is NO way they could guarantee they could discharge her in time to get us to the airport. And I really don't need that stress. Plus, she will be thrilled to be at the hotel. I asked them to get respiratory in here to see if they can rig up some way for me to give her humidified air with the oxygen. I will have a portable concentrator with us to take home and then we will ship it back here.
Of course we had to say good-bye to the boys...
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| She's not so sure about this brotherly love stuff. |
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| Oh how I miss these crazy boys! |
Going home alone with her was definitely not in the plan. But, there's really no way around it. And I really think I'll be fine. It gets us home the soonest. And that's worth it to me. So, this morning, Tom and I went through all our stuff and he took home everything I didn't need. So, I will have one small suitcase, the rolling oxygen concentrator, Harlie's backpack, my bag, the suction machine, and Harlie and the stroller. I can do this! I am SO excited about getting home I can't stand it!
One total bummer thing that happened today is her in-the-ear hearing aid stopped working. I'm guessing there's some dried blood in there somewhere. I tried cleaning it, but I still can't get it to work. Luckily, we have her BAHA, which works great. But, it's still very annoying that she doesn't have optimum hearing. We are going to be very busy with a lot of follow-up appointments when we get home. ugh.
Back to the boys coming for their surprise visit... Tom told me that so many of our friends back home contributed towards their plane tickets to get them here. Thank you, thank you, thank you! Not only was it GREAT for us to be able to see each other again, I firmly believe that changed the course of Harlie's recovery. Seeing her family lifted her spirits and got her moving, laughing and playing again. All things that caused a quicker progress in her recovery. We would not be discussing discharge today, if it weren't for that wonderful visit. What an incredible gift!!! We are so, so grateful!
Well, I need to run and get some things straight before discharge. Thank you for all your thoughts and prayers! You all helped make a difference and we are so thankful!
Much Love,
Christy xo
4 comments:
You have wonderful friends. I hope they know how important the boys being there meant to both you and Harlie. Thanks to all out there who helped with that surprise! So glad she is doing better! Love you all!
What a WONDERFUL post! I am so happy that things worked out so well! I presume you are home now and it probably feels heavenly. I hope thing continue to go well with the distraction. I'm sure it must be strange to see Harlie's face change bit by bit. I remember that with Ainsley's surgeries. But remember it's about function of her jaw and it's going to be great for her. Also.... Remember the drool last time? Just remember it's temporary even when it feels like it won't ever stop :) XOXO to you, Harlie and the whole family. Soon this will be a memory.
Darn it I lost my comment! We are on vacation, so it's been a couple days since I checked in. I was SO HAPPY to read this fantastic post! Harlie really does look like she feels great! It's wonderful to hear about the visit and to know that you are probably already home. I'm sure it's heavenly!
A few days into being home with the drool just remember the last time and that even if it doesn't seem like it, it's TEMPORARY. As for Harlie's appearance I'm sure it's weird to see her appearance change before your eyes. I remember the feelings from Ainsley's surgeries. But this was for FUNCTION. And I have a good feeling, looking at the pictures that this is going to really help her. Soon this will just be a memory. But I'll be thinking of you these coming weeks, because it's not over yet, even though you are out of the hospital. I hope your support continues and that you can still enjoy what's left of your summer. The whole family looks great! XOXO. October will be here before you know it! :)
Also, is it just me or does she seem to be smiling more? Not just in a "I'm so glad I'm done with surgery and feeling better way" but like the smiles are easier? Like maybe she is more comfortable because the distraction is making it that way?
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