I started this post on Saturday, April 24, but while writing, we were told we could take her home, so I closed my laptop and haven't been able to get back to it. So, here's what I wrote then and I'll write an update soon....
Seriously, are we only on POD 10?! Definitely feels like Boston was longer ago than that!
Anyway, today is actually Day 11 (Saturday), but this is Day 10's update (Friday). Yesterday a music therapist came to visit. She works here, but also volunteers for Jacob's Chance and she knows Harlie from that organization.
Harlie loved it (even though her expression can't show it yet) and was the most playful she's been since surgery.
Harlie was watching the show The Loud House and the episode was about selfies. Clearly, neither one of us have been in the mood for selfies lately. But, I was feeling not as afraid as I was before and honestly, that was a welcome relief. Plus, Harlie's spirit started to show a bit, so I was feeling pretty happy about that.
They gave her plasma in the OR. I haven't been able to tell you about the hematology conversations I've had. Honestly, my sleep has been interrupted so many times, I'm running on empty and just haven't had the energy for it. Basically, some of her labs have come back confusing (clotting factors, vitamin K deficient, antibody something or other, mixing study, etc.). While I understood what she was saying when she said it to me, there is no way I could explain it to you. And, in the end, nothing she said was too alarming or sounded very serious, so that's really all I care about. They took more labs right before she went into the OR, then they gave her plasma in the OR, then they took more labs after the OR. All of those labs take days for results to come back. So, we aren't solving anything this particular stay. Will likely continue to investigate as out patient. Yay. More specialists.
Anyway, this is how she looked after the OR. I definitely can see Harlie coming back and we are thrilled!
Also, Dr. Strauss said she is over the hump - and our trajectory is now pointing in the right direction. That is always such a relief!
Oh, a few negatives I forgot to tell you about - she has not been tolerating her feedings. Really, she hasn't been right in that department since her surgery on the 13th. That is pretty odd for her, for sure. And since she's been on some pretty heavy antibiotics, her GI system is suffering. Poor girl keeps signing that she's sorry. Oh, break my heart. I keep telling her that she doesn't need to be sorry. I am the one that's sorry! But, at the end of the day, she is 14 and she has been pretty embarrassed and uncomfortable. The worst is during the night. That is what has been causing my lack of sleep (and hers, obviously). Having to wake up to get her up and to the bathroom, then clean her up, change whatever linens need to be changed, etc. takes time and it has been like 3-4 times per night. I am up and busy just long enough to really wake up and then it takes time to fall back asleep. I'll sleep more later. But, for now, I'd love some relief for her, because she is miserable.
I also forgot to tell you about Thursday afternoon. I don't know what the heck I DID tell you about Thursday, haha!
I heard that Harlie's pediatrician from years ago (Dr. Keith Derco) was going to come visit. He retired from that practice a few years ago and we have really missed him. He came to visit us at Children's National back in 2018 when she was in the hospital for two months (February - April) after her LTR surgery. We have stayed in touch because he has been a huge advocate for building a stand alone children's hospital in Richmond. And he has been working with the CEO of Children's Hospital of Richmond (Elias Neujahr) in making this happen. Over the past few years, Keith has invited me to several meetings with Elias (along with other lifer or seasoned moms) to discuss a new hospital. And that project is coming along nicely and is currently being built right across from the hospital here. The new stand alone children's hospital is scheduled to open for business in two years. Pretty exciting!
Anyway, so Keith came in followed by Elias Neujahr! What a nice surprise! Like for real! How special do I feel that we had a visit from them?! Elias said a lot of complimentary things to me, which was super nice. He is a very kind hearted person. I am so, so upset with myself that I missed an opportunity to take a picture of them with Harlie. But, Elias did ask me what they could do for me and I told him what would make my life a bit better and he did it!
I was able to have Brandy relieve me at the hospital for a few hours on Thursday night. I cannot leave Harlie alone on the floor at VCU. I wanted to go home and shower and re-pack my bag. Plus, Harlie needed more stuff. Anyway, on the way home I totally missed my exit! I never miss that exit. I knew I was super tired when it took longer than it should've for me to right myself and then take the long way home. Ugh.
We are waiting to talk to hematology. She's been cleared by all her other docs for discharge. If hematology says they are comfortable for us to take her home, then we will.
It is now May 3rd. And we have been so busy since we left the hospital. I will update soon, but for now, yes, hematology came in the afternoon and said we could just be followed out patient. So, we went home. I noticed as we were leaving that there was a spot of blood on one of her bandages. So, clearly the bleeding had restarted.
Harlie HATES getting the IVs taken out. I guess she hates all the tape that keeps it in place. Because removing the actual IV isn't painful. Some things are way more anxiety-based than others, I suppose.
She was home and in the chair for two seconds before Mabel jumped up to hang out with her.
As always, thank you so much for all the love and support!
Much love,
Christy xo
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