Long story short, her labs were okay enough that they were fine with letting us go home and having me take her for more bloodwork once home.
Tom took as much stuff home as he could carry when he was last here. Then he gave an empty suitcase to my brother to carry back to me. Bruce put an empty back pack in it, just in case we needed it. Which was good thinking, because we totally needed it.
I woke up in the morning to see this.
Oh, what a sight for homesick eyes! That means today is check out day! ACK!!!
I got everything as ready as I could and took the quiet moment before the storm to say goodbye and thank you to everyone who donated money to help me have this home away from home. I just can't tell you how much YOU helped me survive the past 4 weeks of pure scary chaos and upheaval. Please know how thankful I am.
So many doctors and nurses came to visit that last day. And Casey, the occupational therapist, came to help Harlie get a shower, which was fantastic.
There was a slight issue with her tube feeding, which meant it was going to take longer to go in. As I was trying to figure out how to get all our stuff, go to the hotel and pack up, and get lunch, I just couldn't imagine having to drag her around town. I really needed to minimize her sitting up in her wheelchair because of her awful pressure sore. So, Bruce and I ran to get lunch while Harlie finished her feeding.
I just couldn't take another meal in the hospital cafeteria. Nor could I make that be Bruce's only Boston meal. So, we walked over to Sweet Cheeks near Fenway. We ordered our lunch and our nurse called. She wanted us to come back because they were ready to discharge her. So we had them box up our lunch and to try to get there faster, we ubered there. Which was painful, because traffic was so heavy, it felt like it would've been faster to walk! After a month of walking almost every where, it was hard to sit in a car when I wanted to hurry. We were less than a block away and traffic was at a standstill. So I said we will just jump out here and walk. And, of course, we watched the car pass us and drive on by while we walked the rest of the way. So typical.
We got back and started to pack up. The same doctor I ran into while running in the park was there. He asked me if we lived in Glen Allen. It was so nice to hear about home! Turns out he went to MCV and he was Harlie's local cardiologist's student years ago. Pediatric cardiology is a small world!
Anyway, we grabbed all of our stuff, which I tried to organize earlier. It was so crazy, that I didn't even think to take a photo. Which stinks because you should've seen my brother. He looked like a sherpa. It was crazy. Plus, we had Harlie and her wheelchair and the oxygen concentrator, which looks kinda like luggage on wheels.
I did manage to see Alexandra again, and got some photos with her.
Anyway, we hurried out and had to stop at the CVS to pick up one of her prescriptions. Then we requested an Uber. The pick up circle was at a standstill. Crazy traffic day. Anyway, I didn't even think about her wheelchair. Then a Kia Soul pulled up. I'll give it to that driver, he got all of us and her chair in there. It was impressive.
Then we went to the hotel. We got to my room and my key wouldn't work. By this time it was well after check out time. I had talked to them earlier to let them know that we needed a late check out. But, that didn't transfer to the key. The amount of running around was growing very tiresome. Luckily we saw an employee and he ran down to fix the key for us and brought it back.
Then we got Harlie settled for a bit and we sat down to finish our lunch. By this time it was probably close to 3pm.
Just a few minutes later the room phone rang. It was the front desk asking me when I was going to check out. Geez! Can I have just a minute, please? So, I told her Harlie had just been discharged and I was doing my best.
I had already packed everything. But, now I had stuff that I had to have with me during the trip home (for Harlie). So I had to reorganize stuff. There was piles of medical stuff like dressings, a bag of medicines and saline syringes, etc. Then we couldn't fit everything into the large suitcase. And then the hotel cleaning staff knocked on the door! So, we literally just started jamming stuff where ever it would fit. And I threw away what had to be sacrificed and purchased again at home (jars of peanut butter and jelly and detangler, etc.).
It was very crazy and stressful on an already tired, run down version of myself. Then there was poor Harlie who literally just got out of bed after FOUR straight weeks!!! How could I even think about myself?
I requested an Uber and made the same freaking mistake I had just made leaving the hospital! But, I saw that a Ford Escape was coming, so I thought it would be fine. That car should hold us all.
Oh my gosh, it pulled up and it was so battered, I'm pretty sure it had duct tape on it. And it sounded like crap. You should've seen the look on my brother's face. It was laughable by this point. It was after 4pm now and we just wanted to get to the airport.
After getting in and driving away, I asked him to please put on the air conditioning. Ugh! He said it was broken!!! Are you kidding me?! So we had to ride to the airport with all the windows down, in the hot afternoon, hearing his loud muffler (?) the whole way. I felt so bad for Harlie. It really was terrible. But getting out and starting over seemed like too much, too! And that driver was one of the nicest I've had. Ugh. I felt bad complaining. But his car... whew, not Uber or Lyft worthy in my opinion.
Anyway, we got to the airport and I told the lady checking us in that Harlie had just been discharged after a month in the hospital, and that her strength was at an all time low. Anything she could do to help us get through security without waiting in line would be greatly appreciated. She walked us straight to the front of the line. And then that security person took over and walked us through security. It was the best process yet.
Once we got through security, we found a table at a restaurant and sat down, took a breather, and had a beer, or two. Ahhh.
After what felt like a minute, we had to go to the gate. When we got there the lady said she had been calling us to board. Oops!!
Anyway, we got on and and the closer we got to home, the more tired I felt! Whew, it felt like I was hanging on by a thread.
I can't remember what time we landed. Must've been after 9pm. Since we have to gate check Harlie's wheelchair, we didn't rush off the plane. It usually takes a few minutes for them to get it and bring it to the entrance of the plane.
After waiting for most of the plane to unload, we got off and headed out. I was SO tired by now. And as we turned the corner, we saw this crazy group of people cheering and banging cowbells!!
 |
| From left: Sally Young, Kaden Stevens, Michelle Onofrio, Stephanie Anderson, Carol Cousins, Mike Stevens, Aimee Connelly, me, Bruce Staples (my brother), Marcy Stevens, and Harlie, of course. |
Oh, and Harlie punched Kaden (he's nine years old) in the stomach as her greeting to him. He was so tickled and Marcy (his mom) said that he told his friends at the bus stop about it. He got such a kick out of that. It was like she was herself again!
We got home and it was SO good to be there! The boys, dog and Mary Ann came out to greet us. Ahhh! So, so good to be together again!! And strangely enough one of the first things I noticed was the feel of carpet under my feet. Ahhh, I didn't even know I missed it!
Bruce had driven here the night before, got the suitcase and then left his truck and took my van to the airport. So, after unloading everything, he got in his truck and went home.
Harlie went straight upstairs and got in bed. Pediatric Connection delivered all of our supplies earlier that evening and Brandy came over to help set it up.
As we were getting her straight, it hit me. Where is her Go Bag?! A Go bag is a bag that has what you would need in an emergency, should her trach come out. It has two trachs, one the same size as she has in, and one a size smaller, just in case you can't get the same size in. It also has trach ties, lube, scissors, etc., all the stuff you may need.
Well, I left it hanging on the IV pole in Harlie's hospital room!!! It is in this picture!
That means we traveled all the way home with NO trachs. So, if hers came out, it could have been TERRIBLE. I hated myself. How could I do that? What a rookie mistake! And after I told them, "I don't need trach training." Ugh!!!
So, I went through all of the supplies that were delivered and I could only find one trach, a 4.5, the same size she has in now. The 4.0 was back ordered, of course. My stomach hurt so bad. The stress of being responsible for an artificial airway is no joke. And to think we lived two years free from this!! How in the hell did this happen?!?! I feel like I'm in shock. I've been with her for four straight weeks. I've talked to all her doctors. I know medically what happened. Yet I feel like I'm in shock.
I don't really want to talk about that stuff right now. I've actually started a separate post that I wrote Thursday night. Today is Sunday, and it is hard to write about last week, when my head is now in a different place. But, I want to keep things somewhat in order. I'll share that post soon.
The next morning (Wednesday) I called the CICU in Boston and a very nice person (thanks, Dawn!) went and found our go bag and was so incredibly kind to overnight it to me. And Pediatric Connection found some pieces we were missing, including a 4.0 trach and brought it to me. Seriously, if we have to go through this awful time in our lives, at least we have some amazing supportive people right beside us.
I know I say the words "thank you" a lot. I'm afraid they will lose meaning, I say them so much. But, I really don't know how we would survive this without all of you, and every person who cuts us some major slack and gives and gives to us in so many ways.
Thank you.
Much love,
Christy xoxo
No comments:
Post a Comment