Hi, Harlie had a "good" night last night. They said she slept all night long, which is great. She seems really unhappy and quiet this morning. They said they gave her Oxy earlier, so maybe that has something to do with it. We are shocked at the small amount of swelling and bruising. She looks "great" compared to the last time and this one he did more manipulation than the last time. Crazy! Must be that med - which has us wondering where the hell that med was for her last few surgeries?
Plastics is supposed to come soon and remove the dressings from her incisions. It sounds like they are going to say we can take her home soon. We are hoping for tomorrow (which was the original "plan"). Tomorrow would be good because we only have our hotel room for tonight. They are at full capacity, so it isn't looking good for us to stay there tomorrow night if we can't leave tomorrow. We already checked another local hotel and the rate was over $500! Tom has been looking at flights and they are ridiculous! It would cost us $500 per person - and the times weren't really workable for being discharged from the hospital and getting to the airport and through security. So, we are going to rent a car and drive the 550 miles/10 hours. Tom has already driven 10,000+ miles since June. So, not ideal. But, we don't really have a choice. I don't know how people can afford to travel!
On surgery day, we met another couple with a young child. They said they live in Idaho and have spent most of the last six months here in Boston for his medical care! He looked to be about one - so probably half his life! It just makes me sad that so many families have to live like this. Most people don't ever see them - but I promise you - there are so many of us! This is exactly how We Heart Harlie & Friends came to be. I know most people can't relate to our cause - once you have healthy children, you are unlikely to ever experience this kind of life. You lucky people! Haha! Anyway, if you're local and want to support us - you can sign up for the Turkey Trot here. There is an early bird discount (EB23) good through 10/15.
Harlie has been super quiet so far today and seems pretty unhappy. I don't know if it is because she's just ticked about it all (totally understandable) or if it is the pain meds. Right now, she is sacked out and we are waiting for Dr. Resnick to come. So, I'll write more after that.
Dr. Resnick came by and tried to remove the dressings. Harlie was uncooperative. He told her she could take them off if she wanted. She didn't want to, but she did it anyway. The incisions (four of them) look good. There are lots of sutures, which will be so fun to remove. It is so crazy, Dr. Resnick was explaining to us after her surgery that there are layers of sutures. There are clear ones underneath, and they dissolve. The black ones on top need to come out in about eight or nine days. This came up because Caylee found a clear suture that was working it's way out just a few weeks ago. That was from her surgery in March. Even crazier - a suture came out of her trach stoma earlier this year. That suture was put there during her LTR in FEBRUARY of 2018!!! Isn't that nuts?!
Anyway, looks like we are going to take her home tomorrow. So, that's great! After her dressings came off and we said goodbye to Dr. Resnick (I should've grabbed a pic of them together - but Harlie was less than thrilled) I got her up and did a little wash, brushed her hair, changed her trach (they put in a cuffed Bivona for surgery and even though it was uncuffed after, she was not a fan and asked me to put her normal Shiley in), and put on clean pjs. She looked like she felt a little better after. Then we took her for a little walk to some spots in the hospital.
Oh, we talked about how she has WAY less bruising and swelling than last time - which is crazy considering this surgery was more work than the last one. I asked him about that med and he said she was on it last time, too. So, he doesn't really know why she looks better. Haha! We'll see how she looks tomorrow...
She took a nap and we went to lunch. I went to Target and got her a new pair of pjs for the trip home tomorrow. When we got back, we took her to the outdoor garden on the 12th floor.
Then we stopped in the playroom and did a puzzle together.
She is definitely tired now. It is 7pm and I am getting hangry. So, I have to sign off and we have to go eat dinner. Please forgive typos, I don't have time to proofread right now. We have another very long day of traveling in front of us tomorrow. I feel so bad making Harlie travel so much on post-op day 3! Plus, I am so afraid that all that moving around is going to make her start to bleed. She had stopped bleeding in April 2021, but started to bleed either during the drive home or within just a day or two of getting home (I can't remember). She didn't stop bleeding for what felt like weeks and we ended up back in our local ER. Ugh, my PTSD is going bananas this stay.
Okay, thanks for all the love!
Christy xo
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