Day 7

Monday, June 20

Last night Harlie started to complain about pain in her jaw on her left side. Ugh. She's been on Doxycycline (an antibiotic) since August/September 2021 for an infection in her jaw. We attempted to go off of it once back in early April. But, after a few days, she spiked a fever and we got nervous and put her back on it. Since she was scheduled to get her pacemaker generator replaced May 6, her ID doc said we should try again after she recovers from that surgery. 

So, when she got so sick last weekend, I was a little worried that she got C-Diff from being on an antibiotic for the past 10 months. Since last Monday was so horrible, I didn't give her Doxy that day. And with all the stomach issues, I told them to not give it to her. Might as well try to go off of it again. 

So, she has now been off of it for one week. Late Sunday night, she complained about jaw pain on her left side. Ugh. The nurse gave her Tylenol. Then, this morning, when she woke up, she immediately started to complain of pain and I can totally see that the left side of her jaw is swollen and red. Darn it! How could this be?!  It has been 10 months! I can't believe we haven't killed whatever is living on those prosthetic TMJs. It is so weird, too, because it is not presenting the way it did in the past. So, now I have to start worrying about this battle again. I really can't imagine having to take those TMJs out. Ugh! So, I told the team this morning that I think we should restart her Doxy asap and that I'll just follow up with her ID doc about that when we get out of here. That ID doc is at CNMC in DC. They agreed. So, now she's back on it. 

The GI docs came in this morning and told me that Harlie has been transferred to cardiology service instead of GI service. Cardiology is calling the shots when it comes to her fluid balances anyway, so I guess that makes sense. GI will still be involved as far as her nutrition goes. But, at this point, we just wait for her belly to tolerate Pedialyte and then formula. The GI docs did say that this hit her surprisingly hard. This is not the normal course for the average kiddo. Typical. 

Cardiology came by twice today. They have been so attentive this stay, which I love. Makes me feel like I have less to worry about, I guess. They started her back on Pedialyte through her G-tube today. She's been at 30mls/hr most of the day and she has been tolerating it okay so far. They said they wanted 24 hours of Pedialyte, then we will start introducing formula in some fashion. 

Over the weekend she started having a high output of urine. This continued over night Sunday into Monday morning. Many times she peed over 800mls (which is almost a liter)! So, Monday morning they said that she was negative two liters. That is just crazy. They didn't even give her a diuretic to help that happen.  

Tom brought Cooper down and picked me up to take me to dinner. Unfortunately, they said no children can visit (Covid) so Cooper couldn't come up and see her. 

It is now 9pm on Monday and she has been on Pedialyte all day at 30mls/hr. She's also still on TPN. I would say she has tolerated the Pedialyte well. She hasn't complained of any belly pain all day. She hasn't wanted to drink anything, but I think that's okay. Assuming all stays the course through the night, we should start half strength formula/Pedialyte tomorrow.  Honestly, I have high hopes that she is on the upswing. Thursday/Friday of last week she couldn't tolerate Pedialyte at all. So, you can see what a difference a few days makes. Also, she has been pretty content all day and in pretty good spirits. Although I asked her if she wanted to go outside and she said, "No thank you."

So, hopefully tomorrow will bring more good news. Also, hopefully her jaw will appear less swollen and she won't complain of pain there. I really don't want that to become more of an issue right now (or anytime, really).  

Thank you for all your love and support!

Much love,

Christy xo