Hi! Long time, no see! I've been working on a few different posts, but I'm going to have to continue to wait on those. Since Harlie is in the hospital, I'll start there. I have been working on this post all week. It has just been way too busy for me to be able to sit down and stay focused long enough to make much progress.
Sunday, June12
Sunday morning she woke up with a fever of 103. She held on to a fever all Sunday. When she isn't feeling well, it is hard to get all of her feedings in. Sometimes you just don't want food, you know? So, I need to balance her wishes with keeping her hydrated. That can be really difficult. Needless to say, she didn't get all of her feedings that day.
Monday, June 13
Something woke me up around 2:30am on Monday, so I went in and checked her temp. I don't remember what it was now. I got back in bed and started thinking about how much fluid (or how little, rather) she had gotten on Sunday. I started to worry about it, so I got back up and went and tubed her some. She retched a little, which was odd, because she hasn't done that in forever. After that, I couldn't get back to sleep. I just kept thinking about how she was going to miss her 8th grade celebration that day and her 8th grade moving up ceremony that night. I hate to sound like a baby, but it just seems that she has to deal with so many more disappointments than her fair share. She's missed so much, it just breaks my heart.
Our nurse couldn't work that day, so I was on my own. Not far into the morning, Harlie started having diarrhea. She was miserable, and so was I. Feeding her/giving her water was VERY challenging. I mixed two ounces of water with two ounces of formula and tubed her only four ounces at a time. It took me all day to give her one bottle of formula. As the day went on, at each tube feeding, she started to retch more and more. She hasn't retched in years and years. She got a nissen when she was very young. Back then, she was throwing up 30 times a day. The nissen makes it almost impossible to throw up. But, it doesn't stop the feeling that you want to throw up.
I made a few calls (to her pediatrician and her GI doc) and they told me to try a slow continuous drip of Pedialyte via her feeding pump and/or go to the emergency room. Well, if you know me, you know I don't want to ever take her to the emergency room. So, I pushed it and tried everything I could to keep her home. We started with 60 mls per hour (two ounces). But, she retched like crazy and complained of pain. So, I took it down to 30 mls per hour. She still retched, so I took it down to 15 mls per hour. But, with all that was coming out of her body, there was NO way I was going to keep her hydrated. She was losing 100s more mls of fluid than I could give her per hour.
At midnight, I looked at Tom and said, "I made a mistake. I should've taken her to the emergency room." It has been a long time since she had any kind of GI bug. I am much more used to dealing with respiratory issues, and I have a lot more in my arsenal for that kind of fight. There was nothing I could give her to help her. At that point, I knew she was losing way too much fluid - way more than I could replace, even with her g-tube. She went downhill so fast!
So, we packed her up and Tom took us down there. Wow, it is a lot easier now that the boys are older. That was a new experience. Every other time, I had to take Harlie alone so Tom could stay with them. This is the first time I made him come with me to take her. We got there and as we were getting out of the car, Tom said, "Crap, the van is overheating." Ugh! I totally forgot that we still had that problem! I went in and got Harlie checked in and Tom took care of the car.
Tuesday , June 14
They got an IV and started fluids.
She continued to retch and have diarrhea. It was awful. We got a room upstairs at about 5am. Docs/nurses came by to get some stuff straight. I probably fell asleep a little before 6am. Shortly thereafter, the fire alarm went off. It went on for well over 20 minutes. I thought to myself the whole hospital could be out on the street and I wouldn't know (never heard from the nurse or any staff). Honestly, I didn't even care anymore. I joked with a nurse friend that that fire alarm makes you wanna die. I finally fell back asleep - while it was still alarming. I had been up since 2:30am the previous morning (28 hours) - I was SO tired.
I honestly don't remember many details about Tuesday. It was a busy day because it was her first full day of admission and there are so many people you have to talk to and say the same things over and over again. Plus I was living on so little sleep.
Here is what I shared on Facebook Tuesday night...
Thank you all for your love and support today! Unfortunately she made no progress today. She just had a bad episode (6:30pm) and was complaining of a lot of belly pain. She said it had too much water in it. She's been on ONE ounce of Pedialyte per HOUR for a couple of hours. So, her nurse is giving her belly a break and holding Pedialyte for a bit. She's been on IV fluids since 1am and she is still dehydrated.
The nurse just came in and is trying 10mls/hr of formula. Hello whiplash! That is just two teaspoons giving over an hour. I'm bracing for another horrible episode. Poor girl. She said she is a ticking time bomb. I think it is safe to say we are not going out to dinner tomorrow night for Murphy's graduation. I think she has to be tolerating at least 75mls/hr of Pedialyte before they will let her go home.
Oh, this morning when I returned with a cup of coffee, she was busy telling the respiratory therapist that I'm picky about her clothes. I'll have you know that she said that as if I wasn't there, and like it is a bad thing. Geez. No respect. I don't wanna know what she was saying about me when I wasn't there.
Update: at 7:30pm she had the worst episode yet. Poor thing! So, now she's NPO (nothing in her belly). They are increasing her IV fluids. This is definitely a step backwards. I hope she has a better day tomorrow. Thanks for the love, good people! xo
On Tuesday night, after her horrible episode, I asked her nurse if cardiology has looked at her labs and stuff. I really think they should be aware. Harlie was definitely still struggling with hydration and her heart physiology needs proper hydration.
Not to be gross, but just to explain why I've been so concerned about her hydration - if she is getting 75mls/hr of fluids total (30 mls/hr of Pedialyte through her g-tube plus 45mls/hr of IV fluids) and then has an episode of diarrhea with a volume of 500mls, you can see how quickly things can go downhill.
Wednesday, June 15
Cardiology came to see me on Wednesday morning. She said that they were not notified that Harlie was in patient. This has been an issue before at this hospital. I don't have this issue at the other two children's hospitals where she is a patient. Back in 2019 when she was really sick with the flu, the doctor did not want to call cardiology in. In fact, I remember having a conversation with him about it and me not understanding that line of thinking. I got so much kick back from him that I had to go and email her cardiologist myself.
Anyway, the reason I'm telling you this (because I want to vent for a sec) is because everyone keeps telling me that "they didn't know" and that I need to tell them to contact cardiology. Um, didn't I do that this time, too? It is so frustrating. Honestly, when we tell the ER doc that she is post-op 6 weeks from pacemaker surgery, shouldn't that clue someone in to contact cardiology? I mean, who the hell is getting paid here? Whatever. They are involved now, so moving on.
GI wanted to change Harlie's G-tube to a GJ-tube. A G-tube allows you to put stuff directly into the stomach. A GJ-tube allows you to put stuff directly into the jejunum (small intestine). They were thinking that her stomach was so irritated and likely had delayed emptying, so putting nutrition in the jejunum might allow some absorption. But, that wouldn't change the diarrhea. Cardiology said they didn't want her having anesthesia, so she would have to get it while awake. Ultimately, you really don't want to add more "stuff" unless you really have to. So, we decided against it and to just give her more time.
Brooke is a music therapist and works here on Wednesdays. We met her here last year when she was in the hospital with her bleeding issue post-op from her TMJ replacement surgery in April 2021. Brooke came to see her then, too. Then later she heard that we were looking for a guitar teacher. She's been teaching Harlie for a few months now. I meant to text her that we were here - but totally forgot. She got in on Wednesday and saw Harlie's name. So, she came to see her.
My friend Michelle picked me up and drove me home so I could have dinner with the boys and shower and get a change of clothes. My van is still in the shop, so I have been without my own transportation. Caylee went to the hospital to hang with Harlie that night. Caylee said she had a good night nurse and that they got her all ready for sleep. Caylee asked Harlie if it was okay if she stayed in the room by herself that night, so I could stay home. Harlie said yes. Not surprised - she is desperate to be more independent and treated as such.
Thursday, June 16
Michelle picked me up (with coffee and breakfast for me 😊) and took me back to the hospital. At rounds that morning, the GI team wanted to reintroduce formula and send her home by early afternoon. WHAT?! I thought that was crazy. When you start talking about discharge, you are getting closer to your goals of getting out. We hadn't even discussed our goals yet! Basically, they were 1) making a change (transitioning her from straight Pedialyte to full formula - a BIG change) and 2) without knowing the result. How can you schedule a discharge under those circumstances? That makes NO sense.
I spoke with the cardiology team and told them I felt like we were being rushed out of the hospital (likely because they need the bed). Harlie started retching and complaining of belly pain soon after they started the formula. We cut the formula in half (mixed it with Pedialyte) and tried that.
I said I was in no way comfortable taking her home already. She needs to be able to get enough fluids through her G-tube to maintain hydration - and we are no where close to that. They agreed, so that was the end of that conversation. Later in the afternoon, my friend Carol picked me up from the hospital and took me home to get ready for Murphy's high school graduation.
I gotta tell you - it is SUPER hard to have one child in the hospital and be happy/focus on another child's life event. Especially when one child is Harlie and she's so complicated. While we were at the graduation venue, a doctor called me and I had to chat with her about medical stuff. It is so hard to switch gears like that.
Anyway, obviously I am very happy for Murphy. My gut tells me he is going to like being an adult a lot more than he liked being a high school student. Maybe that's normal. Its just that he wasn't the most enthusiastic student.
After graduation I had Tom drop me off at the hospital. Harlie was so upset. She cried and said, "I missed Murphy's graduation." While I was so sad for her - I was happy that she was sad she missed it. Every now and then it is good to see that your kids love each other and want to be there for the big things. Harlie doesn't show that side of herself often. I need to soak up the times when she does.
I had packed some clothes for me to change into at the hospital - but totally forgot other shoes. UGH! There was no way I was going to wear my sandals with my leggings. Haha! So, I just slept in my dress. This night was the worst. She really went backwards. She was up so many times and her poor body was in turmoil. Her night nurse was great, thankfully. She was the same one from the night before. She stopped her half Pedialyte/formula feeding and changed her back to just Pedialyte.
They also grew concerned about her urine. It had turned orange. So they ran a urinalysis earlier that day, but needed a clean sample. So they had to cath her late that night. It was awful. I hate holding her down for stuff like that.
Friday, June 17
The night moved into morning and she was in agony, crying and oh, so miserable.
The good thing is that several people got to see her like that - not just me. So, her nurse and some docs got to talking. I heard, "Its a good thing we didn't discharge you yesterday!" by several people. I do love when I my instincts are right.
Meanwhile, my friend Carol went to my house and picked up my shoes and things and brought them to me. Oh, thank you, Carol!
Around 10am the cardiology team and the GI doc passed each other in the hallway coming/going from Harlie's room. They both came to talk to me and the cardiologist said, "I'm in agreement with what she wants to do, FYI." Then the GI doc said that she wants to give Harlie's gut 48 hours of rest (no G-tube feedings/Pedialyte at all). Since we are at five days with no real calories, and are looking towards at least seven days now, she thinks we need to give her TPN (nutrition through IV, that bypasses her GI system).
She was miserable and wanted to hold my hand all day. That is so NOT like her! She is not the most affectionate person.
They didn't take her down to Interventional Radiology until 6ish.
On the way down to IR, the transport person said we had to put a mask on her. It was kinda "funny" to watch the nurse attempt putting a mask on Harlie. 😑 She realized there was no real way to do it when she breathes through her neck and her face. I said, "No. You're not putting anything over her airway. She was Covid negative coming into the hospital." I am SO over the world trying to tell me that my biggest concern should be Covid. It isn't. If it is your biggest concern, I'm not going to tell you it isn't. We are all not the same, therefore we cannot live with the same priorities. She's been hospitalized like 7-8 times since March 2020 - and not once did Covid have anything to do with it (and she has already had Covid). Here we are - hospitalized, miserable - for a virus that no one cares about. Oh, maybe I forgot to tell you that. At some point, they took a sample and said she has Adenovirus. She's had it before (and was hospitalized then, too) but it was the respiratory version. Clearly, she has the GI version this time. Which, in my experience, is way worse. Haha!
Anyway, she got a PICC line (central line) under anesthesia and now she's on TPN.
That night Tom came down and we had dinner downstairs. It was rather depressing. He stayed the night so I could go home and recharge a bit.
Saturday, June 18
Tom took her outside. They had a "good" day.
Sunday, June 19
Happy Father's Day to Tom (our personal fave) and all you other Dad's out there. As a dad, Tom has really been through it. He's extraordinary and I hope he knows that. He did joke that he probably should've changed her pajamas...
Caylee came down at 4pm to sit with Harlie for the evening and I came and got Tom and took him back home. Murphy had to work. Murphy recently kinda/sorta changed jobs and we had not been to his new place yet. So, we took Cooper to dinner there so at least four of us could kinda be together for Father's Day dinner. It was good and I think Tom liked it. It is always good to see Murphy working, haha!
Then, I had to go pack my stuff and head back to the hospital to resume my life there. Ha.
It was a difficult weekend for Tom because we had plans to go for a hard hike on Saturday and the weather was so beautiful for it. To make matters worse, we are scheduled to take Cooper to summer camp in Maine in just 10 days. Tom has worked hard on our plans for that. We are planning to hike the steepest climb on the Appalachian Trail. Last year, we hiked down the 3rd steepest section which was 1,130ft of elevation in .8 miles (900ft of that was in .5 mile), in the rain. It was brutal. It was the last mile of a very long day. We stayed at a hut (slept in a cabin in bunk beds).
Anyway, this year Tom has planned for us to hike Pinkham Notch to Wildcat E in New Hampshire. This section is 2,000ft of elevation in 1.5 miles with 1,000ft of that in just .5 mile. I think the next day or so we are supposed to hike the Baldface Loop Trail (10 miles).
If Harlie doesn't turn around really quickly, I just won't be able to leave her. So, Tom will have to go without me, which blows.
The timing of this sickness was really awful. Not that any time is good to be in the hospital - but geez, she/we are missing a lot of things we were really looking forward to. My calendar keeps giving me reminders of things that we are no longer doing.
Today is Monday and there has been a new development. I will stop here since this post is way too long. I'll start a new one and let you know the plan from here on out.
Thank you all so much for all your kind words, thoughts and prayers. I just can't tell you how much your support means to us.
Much love,
Christy xo
