Hi!
Well, we got moved to the cardiac floor last night. Usually, my take on being on the floor is that we are better off at home. But, being so far away makes that impossible, well and the drain line, too. There is NO way she is ready to go home. Hopefully things have progressed in her health that her lungs seem to not take as much of a hit post operatively as they have in the past. It has always been her lungs that have prolonged her ICU stays, so by the time she was ready to leave an ICU, she was essentially ready to go home and have one on one care by us and/or home nursing vs. one to three or four or whatever ratio that particular floor has (depending on which hospital we are in at the time and how busy they are).
Anyway, the new room is super small (but private, so that's good). When Harlie got over here, she was really complaining of pain. Turns out she had not gotten Dilaudid in like 8 hours! So much for pain control. So, I told the night nurse (who was awesome) to please put her on a schedule and not to count on Harlie to tell them when she hurts. It is really frustrating to have to constantly repeat yourself. Harlie already has a high tolerance for pain/discomfort and if you wait till she's crying, then you pushed her too far. So, they took care of that and she seemed to get some sleep over night.
Here's what she looked like when we got in this morning...
Oh, my sweet girl! I feel SO bad for her!
Her ear is still bleeding (from inside), so she still cannot wear her hearing aid on that side. The BAHA can be cumbersome in bed, so she keeps taking it off. At any rate, I told her nurse that she might have to pull her mask down when she's talking to Harlie so that Harlie can have a chance to hear her or read her lips. That muffled sound when you talk behind a mask is impossible for her to hear. Oh, I feel so bad for the hearing impaired right now!
Anyway, the team here said pain management is their priority for her. So, now she is on a schedule of all kinds of stuff. Hopefully that will help.
Her surgeon came by to check on her. We talked about what needs to happen to get her home. That drain line has to come out, all of her IV meds have to be changed to oral meds (through her g-tube) and we have to be able to manage her pain on oral meds.
I haven't even told you about our logistical challenges for this stay...
The last few times we've come up here, we've been able to get the same Air B&B. It is a mile from the hospital. And it is super cute and comfy for us. And being able to know what to expect is really nice when you're going through a stressful time.
Well, we had our virtual pre-op appointment with her surgeon in February to get more details about pre-ops, surgery, post-op, etc. As soon as we talked with him and got more info about how long we'd be in Boston, we scheduled our Air B&B. But, it was only available Sunday through Wednesday. So, we had to find a different place to stay from Thursday on. We tried to find a different Air B&B for the whole time, but that wasn't as simple as you'd think. Everything is harder (and less available) with so many people having to change their way of life because of Covid precautions. So, we got a different place Thursday to Monday.
Of course, we had to get out of our favorite Air B&B by 11am and we couldn't get into the next one till after noon. So, we packed up and left our stuff ready to go and came to the hospital early. Then Tom left to go get our stuff and move it to the the new place. He called me to say that we didn't read the fine print. It was terrible and dirty. And the bathroom was down the hall, shared by who knows how many people.
Well, I've been there, done that. After I had Harlie, I had to leave the hospital and go to the Ronald McDonald House and share a bathroom there - postpartum! Um, never again. Life is too hard right now to deal with that on top of everything else. So, he left and checked into a hotel.
He's also trying to figure out how we are going to get home. There used to be several direct flights per day between Boston/Richmond. Now there's one flight per day. Some days there are none! Some days the flights are only at 6am. There is no way we can make that work. On Sunday, there is one flight at 5:45pm. So, maybe, if the stars were to align, she could be discharged that afternoon, and we could do that. Of course, he can't book the tickets until we know for sure. And it was a full flight on the way up here, so who knows if we could get on that flight.
So, we thought maybe driving home would be less stressful. Plus, it is awful having to fly and go through all that airport crap post-op from craniofacial surgery. People are already afraid of people. Even if you look perfectly healthy, you are treated like you have the plague. Then they see us with our swollen, bruised faced kid... it is just hard. I'd really rather not deal with all of that.
Anyway, renting a car - not a big deal, right? Haha, not so fast. We started looking and even at the airport, most of the carriers said they had NOTHING available. Nothing. WTH? I guess when you select one way rentals, maybe that makes it more difficult? He found one, but we can't even reserve it because we really don't know when we are leaving. So, we are just going to have to wait and see and hope that it works out. After all the trips up here through the years, none have ever been this stressful with logistics.
So, back to Harlie... she is getting more swollen and bruised by the hour. I swear to you - the pictures do not do her justice. I see her face, I wince, I take a picture, I look at it and I'm like, nope. That's not what she looks like. She looks worse!
You can see more blue coming in...
Okay, well that's it for now. I'm tired. And I just had a conversation with respiratory therapy about their humidity system for Harlie's trach (it isn't working for her) and I'm feeling frustrated. I don't have the energy to explain that right now. What I'm feeling is a lot of frustration over trying to make it easier for Harlie to breathe. How is it right in the Universe that we should have to fight for that? Over and over. Fuckin' A.
Sorry. I wish I could be more positive right now. Maybe tomorrow.
Thank you for the love, the support, and all the kind words. We appreciate it more than you know.
Much love,
Christy xo
1 comment:
This is Ur cousin Donna In Florida YOU all are in our prayers every day
Post a Comment