Tuesday, August 15, 2017

Post-Op Days 6 and 7

August 14 , Monday

Thankfully, she seems to have settled down and we are starting to see small amounts of improvement.

They took cultures from her trach secretions, blood and urine, and all grew something, meaning she has infections. That explains her really bad night Saturday night.

Infectious disease just came in and they are going to figure out her antibiotics again. They said she has staph aureus in her blood.

Since they put her on Vanc and Zosyn, she has not had a fever. But her WBC were still a little high. So, they are going to take blood cultures every day until they show negative for 48 hours.

Dr. Padwa and Dr. Haas came by. Dr. Haas put some braces on her loose bottom teeth to help them heal and hopefully prevent her from losing them. She will go home with them and our local orthodontist will remove them when its time.

At this point I feel like I have a really good relationship with her docs. They seem to be ok with my sense of humor. So when I saw him I smacked him on his arm and said, "She lost a permanent tooth and I'm mad at you!" Because he was the one that said it would be fine. Of course I had to tell him that I know they don't know all the answers and that Harlie doesn't follow any rules. And that I wasn't really mad at him. Although, I'm pretty sure he knew that.

Dr. Padwa and I joke around that she regrets ever taking Harlie on as a patient and that she will never operate on her again. She told me that Saturday night/Sunday am her and Dr. Resnick were texting about them not being able sleep because they were so worried about Harlie. Harlie is surrounded by such a great group of doctors. Every single one has been so great, caring and compassionate. And Dr. Padwa says she's not going anywhere and that she's committed to Harlie. Which, I already knew.

While headed outside for lunch, I ran into Dr. Mancuso (who was with her on Thursday night when she got the trach). He is wonderful. And he told me that Harlie got the right mom. Which, is always nice to hear. And this morning (Tuesday) he stopped by her room to say hello and see how she was doing. Love him.

We also spoke to the hotel about our stay. They were so nice. We had to move rooms to get a cheaper rate ($210 per night). And they put us just a few doors down so it would be easier to move. And they threw in free breakfast whenever we want it. Which, has been/will be each day. ☺

That night we went to the Red Sox game at Fenway. We have never been. And we didn't have tickets. But, a friend of a friend of a friend... let us in. Shhhh. So, we just walked around and watched the game from different areas. The Red Sox did not have their best game, so there were plenty of empty seats. Honestly, we just enjoyed being there, regardless of who won. It really is beautiful. And we had a great time.

August 15, Tuesday

We were going to wake up early and see if we could pay to do a yoga class down the street. But, when the alarm went off, I just couldn't. The kind of tired you get in a hospital is different than a normal tired. So, we went back to sleep.

After a couple of hours we got up, had breakfast and went to the hospital. We caught rounds and then checked out the gym across the street. When Maggie was here she said she overheard someone talking about how they offer free membership to parents who have children here. So, we went to check that out.

It was good. They didn't have bumpers to do deadlifts, so that was weird. But we managed. And we did a full workout and we both felt like ourselves again. So, that's really good.

As far as how she is today, she's the same, and no worse, which is good. They had to stop her feeds again because her belly was getting really big and her body wasn't digesting it. Since she's on that paralytic, it really slows everything down. They are constantly adjusting her Lasix (direutic) to try and get a good fluid balance. Her belly looks terrible from the fat graft.

Forgot to mention that Dr. Padwa said they were not going to stretch her jaw with that device anymore since that was so hard on her teeth. And they are well aware of my feelings about her teeth. So, they put a soft wedge thing in her mouth today. Its attached to the string in her mouth.

They also pulled her PICC line as it was a potential source of the blood infection.

So, tomorrow is the big day! They will change her trach (hopefully in the morning) and then turn off the paralytics, to let her wake up. We don't know how long it will take for her to wake up. It's different for every person. So, Tom and I will be glued to her side all day. I will be so glad to see her open her eyes again. I feel like I haven't "seen" her in so long. It is so unsettling to see her just lying there like that. Plus, they are having to keep ointment in her eyes because she doesn't close them all the way.

And the bottom line is that we can't see where she is in her recovery until she wakes up. The sooner she can breathe on her own, the better.

Tom is going back home on Thursday. And my sister, Sandy, is flying up Friday afternoon. I think I forgot to mention that the visitor rules are different in the CICU than they are in the Medical/Surgical ICU. In the CICU there are only two people allowed bedside. In the MSICU, they were fine with four of us. Luckily, she didn't get moved to the CICU until after Maggie left.

Okay, that's it for now. Hopefully all will go well tomorrow. While I'm excited to make progress, I'm not looking forward to her finding out she has a trach again. I don't know how she could possibly understand. I feel so bad for her. She loves the pool and getting things off the bottom and she was showering independently (both of which will now be out of the question). While I am more thankful than words could say that she's HERE, I am so, so sad for what she's lost (and for what we've lost), again. One day at a time, I suppose.

I just want to end by trying to thank you all again for all the AMAZING support you've given. You have all been so generous, in monetary support and love. I just don't think I'll ever be able to express how grateful we are. We are feeling the love and it is keeping us strong!! Thank you so much!!

Much love,
Christy xoxo


Robin Kargoll said...

Great to hear the latest updates and that she's so much more stable than a few days ago. Wishing you lots of strength for tomorrow. I hope she wakes up easily but slowly so she has time to comprehend being trached again. Hopefully it is short-lived, but she will continue to make her own advancements even with the trach. Faith can now shower alone even with her trach and does her own trach changes every week, being 10 (almost 11) brings that independence even with their care! I know they are each on their own paths, but share a few steps along the way.
We will keep Harlie and you and Tom in our thoughts tomorrow.

Anonymous said...

Hi there, I'm Jessica I was Harlies school nurse a few times. She instantly left an impression I will never ever forget. I've been doing this for 15 years and I've met so many kids and none as complex or as special and determined as her. She has the kinda spunk that makes you realize she can and will get through anything. Praying all goes well and trusting that Harlie is going to show you guys just what she's made of!!!

Christy said...

Hi Jessica! That is so sweet of you! Thank you so much for the kind words, and for remembering Harlie!! xoxo

Christy said...

Wow! That is great to hear! I remembered the other day that Harlie could suction herself before decann. It is nice to know she could keep some independence. Thanks for writing! xo