First of all, we are HOME! All is well, except that Harlie still needs oxygen support. I find this rather unusual, given her history of surgeries and how her recovery has gone. We're on post-op day 9, you'd think she would be back to normal by now. I guess we'll see how she does in the next few days. If she's not better by mid-week, I might have to go and get another x-ray or something.
Anyway, our trip home was full of adventure (aka stress, to me). My daily life is adventurous enough, I really don't need any more.
We were ready to go on Saturday. But we had to wait for the guy to deliver the portable oxygen concentrator. He was due to arrive at the hospital around 2pm.
He arrived a little after 2pm and went over the instructions. It is a small machine on wheels (like a piece of luggage). And it came with a black neoprene-like material bag that holds two back-up batteries and the power cord for the concentrator if you have access to power. Each battery lasts several hours (+/-) depending on how much oxygen it's churning out. So, we knew we'd go through at least two batteries to get home.
We packed up, signed all discharge paperwork, got prescriptions and left. We had to take a cab back to the hotel. I had already checked us out, but I had them store our luggage there, since we were still at the hospital. There is a phone out there that when you pick it up it automatically connects you to some cab dispatch place. We were in a cab in just a few minutes.
The hotel is .9 miles from the hospital. And we had been walking, biking or running between, so we knew how long it took to get there. However, Labor Day weekend is move-in day for all the area colleges and so it is a BUSY day, with tons of moving trucks double parked, and furniture all over the place. Traffic on the way to the hotel was at a standstill. We should have walked. But, it would have been cumbersome with her chair, and the oxygen concentrator, both on wheels and needing to stay close together. And we just didn't realize how bad the traffic was going to be near the hotel. Plus, when you walk it/run it, you can go directly there and not worry about the one way streets or the "no left turn" signs apparently placed at every corner on the way to the hotel. Seriously. We could see the freaking hotel and couldn't get there. It was agony! And it was expensive! Lesson learned there. We should have loaded the luggage in the complimentary shuttle and brought it to the hospital. Especially since the hotel was in the complete opposite direction from the airport. So, after Tom ran in to the hotel to get the luggage, we had to turn around and go back past the hospital to get to the airport.
So, FINALLY we arrive at the airport. It is now 4pm. Our flight leaves at 8pm. PLENTY of time to get through security and relax a bit before getting on the plane. Right???
We tried curbside check-in, but the guy told us that we couldn't do it there because of the oxygen. So, we walked in and went to Jet Blue full service. No line. Sweet! As we start walking with our luggage, my luggage wheels break. One wheel falls apart and it magically turns into a square shape, which doesn't roll easily. Awesome. We go to the open counter and start the process. The guy says, "Do you have a letter from the physician for the oxygen?" Um, no.
Oh wait! No problem! I'll just call Shanda (our nurse that day) and ask her to fax one over. Easy. I use my smart phone (couldn't live without one) to look up the number. I think it was right about that time that I look around and say, "Tom, where's the bag of batteries?"
Shit. They are in the cab. Which is far, far away by now.
So, he says, "Do you remember the cab company?" Um, no. He said, "I think it was Boston Cab Company." Okay, great. Call it. I think back and remember that at one point, the TV screen in the back of the cab flashed, "You are in cab number 1222." Or something like that. I know it had three 2's in it.
Tom looks up the number and calls. Someone answers and he asks, "Is this Boston Cab Company?" The person says, "Yes" and Tom proceeds to tell him we left something in the back of a cab. Then they guy confesses that it is not, in fact, Boston Cab Company. Ugh! We don't have time for this!
So, Tom tries again and gets the right company and tries to explain the situation to the woman who answered. I hear him say, "We left a piece of luggage in the cab that just dropped us off at the airport." I raise a brow at his choice of words for seriously needed medical equipment, but don't say anything.
While he's doing that, I'm on the phone with the nurse asking her to write me a letter and prescription and fax it to this obviously newer employee, Brian. Brian gets me his fax number. All is well. It will be taken care of. Easy. No worries. Although Brian is clearly nervous, and keeps shifting his weight from one foot to the other. Left foot. Right foot. Left foot. Right foot. ARGH!!!
Except something is wrong with their fax machine. They bring me several pages of garbled up text (clearly from Boston Children's). They hand it to me like, okay, ball's in your court people. WHAT?! I mean, did they seriously expect us to be like, well, okay, we tried. We'll just have to fly home another day....
Give us another solution, people!!! So, I ask if they have a different fax machine. Like, one in security, by chance, who might know what to do in this case??? Somewhere further than the freaking front door of the airport!!!!!
In the meantime, Harlie is drooling like crazy. The poor girl can't swallow her own secretions. So her shirt is soaking wet. And we have nothing to wipe her mouth with. Luckily, they had not checked in our luggage yet, so I opened it up and got her a couple of extra shirts.
Oh, and there was a family at the counter next to us and the little girl was looking at Harlie and back at her mom (repeatedly) like she was really stressed about something - and she was crying. Under normal circumstances I probably would have thought that meant she was a sensitive person, but at this particular time, it was pissing me off.
After concentrating on the fax machine problem for a couple of minutes, I look at Tom and say, "So, what did she say? Did she find the driver?" He says, "She's working on it. She's calling him and she'll have him call us." Yeah, right. Would you be confident in that kind of communication chain????
Keep in mind that Harlie's been on this battery since around 2pm and we are watching the battery bars decrease. ARRRGGHHH!!!!
So, we continue with the fax machine problems. I swear, no exaggeration, that poor nurse had to have faxed those pages AT LEAST 15 separate times. I'm feeling terrible about that. I'm mad that the case manager that arranged the oxygen concentrator didn't know that we needed this paperwork, and I'm pissed that the cab company doesn't understand the gravity of the freaking situation.
The Jet Blue guy tells us that we can't have our seats in the front row (that we paid extra for) because we have to put the oxygen concentrator under the seat in front of us. And there's no seat in front of the front row. So, he bumps the people in the second row and puts us there.
Harlie has to go potty. This should be fun. I leave Tom with our luggage at the ticket counter, and head to the potty with Harlie in the chair and the oxygen concentrator in tow. Taking her potty was no easy, task, let me tell you. But, after 15 minutes, we got it done, and returned to the ticket counter fiasco.
In the middle of the Jet Blue employees giving us at least five different fax numbers, I ask Tom, again, where we are with the battery/cab situation.
Me: "Did she find the right cab?"
Tom: "Yes. You had the cab number wrong. It was 2221."
Me: "Whatever." "Did you tell her it was medical equipment?"
Tom: "YESSSS CHRISSSSTY."
Me: "Okay, I just didn't know. If she understands how important it is why haven't they called yet?"
Tom: To the Jet Blue employees, "What? ANOTHER fax number?!? What freaking century is this??!?!?"
Me: "Harlie's soaking wet. Again."
Then Tom's phone rings and he walks away. I hear him explain the situation, again. Then I hear him say (with a raised voice, which NEVER happens when he's talking to someone other than me or the kids), "Ma'am, STOP TALKING. STOP. TALKING. LET. ME. FINISH. It is in a black bag, near the spare tire. It might have gone up under something." Time passes. Then he gives me the thumbs up.
YESSSSS!!! THEY FOUND IT!!! HALLELUJAH!!!
In the meantime, the Jet Blue employees are still struggling with the fax machine. I finally break. I say, "We aren't going to need this letter if that cab doesn't get that battery here soon, because I'll have to call 911 and have to have her taken back to the hospital!!!" They perk up. All of a sudden they are very attentive.
Then I finally come up the brilliant solution to plug the concentrator in. I'm a freaking genius!!! So, as soon as he's off the phone, I say to Tom, "Hey, where's the plug?" And he says, "In the bag with the batteries."
I'm completely deflated.
Tom: "The driver found the bag but he has a person in the cab that he has to drop off, then he'll come back to the airport."
Me: "Great. So, where is he?" (as in, how long till he gets here?)
Tom: "I don't know."
Then the Jet Blue employees say, "We got it!" And a new guy (to the situation, I mean) says, "Normally, we require the letter explain the beeps from the machine. So, do you know if it beeps when the battery dies?"
Me: (with a look that says are you effing kidding me?) "I don't know. We've never used this before."
Him: "Well, we're going to let it pass this time."
Me: "Thank you. Thank you very much."
We head to the only place on this side of security that sells beer. And wait for the cab to return and save us.
Now, I have to admit that most of this was our fault. We should have called to check on the requirements. Heck, I could have posted on Facebook to all my special needs moms and would have probably received several answers that could have saved us all a bunch of stress.
But, we are not perfect. And we were tired. It happens.
We ordered drinks and some food and waited. Tom's phone rang and he ran to the front door to get the beloved batteries. WHEW! There was one bar left on the machine.
Now, to security! OMG. It's now 6pm.
Thankfully, we get to go through the priority line. And everyone in security (as has been the case, every single time) was super nice and understanding. And we get through with little fuss.
On towards the gate. And I breathe a HUGE sigh of relief. There is a kid play area (scary germs, oh no). But how in the world do I tell Harlie no???? Seriously? I would challenge anyone to tell that girl no in this instance. We make it work. Tom helps her from thing to thing and plays with her while I sit and gather myself.
Then I have to take her potty again. Oh, give me strength.
All through everything - Harlie has not complained. Not. One. Little. Bit.
She is my hero.
We go to the Life is Good store in the airport and buy her a t-shirt. I change her shirt. Again. And we buy her a little Jet Blue plane that pulls back and goes forward and makes noise and blinks lights. I'd buy her anything if she wanted it. But she rarely wants anything. She loves the plane.
We head to another restaurant and order more drinks. Harlie plays with her plane and we sit by the window to watch the real planes. Her oxygen concentrator beeps. Time to change the battery!
It's finally 7:30pm, and we head to board the plane. We get on and get settled. We take off. We are in the air. And I crash.
I mean, I was DONE.
Whatever was getting me through the last two weeks, and was allowing me to be energetic and positive, and allowing me to run 6 miles (and say they were enjoyable) was gone. GONE! And I was left as a shell of my former self.
I closed my eyes and fell asleep. Until Harlie woke me up to tell me she had to go potty. Again. That was fun, too. Then I fell asleep again. Until Harlie couldn't find anything on TV to watch. So, I gave her the iPad and put a movie on for her. Then I couldn't get the icom thing to work (the thing that allows the sound to go directly into her hearing aid - like headphones). So I gave it to Tom to fix. Because he can pretty much fix anything. Which he does. So, I give it to her and fall asleep. Again. Until Harlie wakes me up to tell me she has to go potty again.
Tom takes her. And I want to die. Seriously. I am being tortured here on earth and don't know what the hell I did to get such a challenging life. Being that tired will make you think some crazy things.
We land in Richmond at 9:15pm. Home. Sweet. Home.
We get our bags and Tom's luggage wheels break. For real. One of his wheels falls apart, and now it is square as well.
Seriously, I couldn't make this stuff up. How I haven't completely fallen apart is a mystery to me.
We walk like zombies to the car. Now, I understand that 9:30pm isn't that late. Heck, on a normal night, it's early! But, like I said, I had no life left in me. It might has well been 4am.
We load the car, back out and leave. Tom told me to close my eyes and sleep and he would be fine driving home. So I did. I can't tell you how rare that is.
We got home around 10:30pm, Murphy was up waiting for us. We unload the car and get Harlie's room set up for her. We haven't had to use her oxygen or humidifier in months. I could barely function. But we got her in bed, and left everything else for the morning. As I was falling asleep in my own bed (paradise!) I tried to ask Tom if the baby monitor was on. It came out all garbled. I really wasn't myself. I can honestly say that I don't remember ever being that tired. That spent. The worry and stress over the oxygen wiped me out.
None of our nurses could work that night, which sucked. I was very concerned that I wouldn't wake up if Harlie needed me. Apparently, that was true because Tom said he got up to suction her once. I had no idea.
The next morning, Tom couldn't find the suction machine. Huh. That's super weird. That machine is always with us. We all look everywhere. NO suction machine. FOR REAL.
As I try to think back, I know I had it at baggage claim, because I had to suction her. So, we had it after we got off the plane. Then I vaguely remember as we were loading the car, Tom saying, "the suction machine is behind you." That means that it's on the ground, at my feet, so I need to get it and put it in the car. He couldn't put it in the car, because I was standing in the way. We put it on the floor, at Harlie's feet. Since I was getting her in her car seat, he put it on the ground. This is normal for us. Except I was in a walking coma, and shut her door, then opened my door and got in and never gave it another thought.
So, the suction machine was in the parking lot at the airport. Awesome.
I seriously can't believe it wasn't on the news that there was a suspicious machine found in the parking lot of the Richmond airport.
It rained overnight. Of course.
Tom called and they had found it. Can we relax now?
Harlie woke up crying in pain, holding the right side of her head (not the side of the BAHA implant). I'm guessing it's her TMJ on the right side that hurts. It was then that I realized those were her first tears from pain. She had not cried tears since the surgery - except when she was scared to go into the OR the second time. Isn't she amazing?!
And she is already up walking (limping) with her cast. I started this post on Sunday, but it is now Monday night and I'm finally finishing it. She was able to come off the oxygen for a few hours today. But when I spot checked her, her sats were in the 70s again. So, she had to go back on. She doesn't like it. But, she has no choice.
Tomorrow Murphy starts third grade. And Harlie would be starting kindergarten again. But, clearly, I'm keeping her home for a few days. At least until her incisions aren't so fresh and scary looking. And she's off oxygen.
I have pictures to go with this post - but I just can't upload them and attach them now. So, no photos, sorry!
Thanks for reading this and for all your love and support. It drove my energy. And I never felt alone. Not once. Thank you for that.
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