Life Since Harlie: December 2016

Wow, has it been a long time since I've sat down to write a hospital update!

To give you a little background, shortly before Thanksgiving, Harlie started having issues tolerating her tube feedings (tons of coughing and complaining her stomach hurt). For example, the Tuesday before Thanksgiving, we fed her right before we got on the road to go to Pittsburgh. She coughed and wretched the entire 6+ hours there. It was awful. Ever since then, things have gotten more complicated.

The Monday after Thanksgiving she woke up quite sick, definitely trending downwards. So her pediatrician sent us to the emergency department at VCU. There she had a chest xray and an upper GI. She was such a trooper. This girl who takes so little by mouth, cooperated by swallowing barium for the study. Since she was wretching so much, they wanted to make sure her nissen was still intact and that she wasn't refluxing.

All appeared okay. As usual, no answers. Such is life in medicine. So often, issues just resolve themselves with no explanation. Sometimes, that's the best case, and you just move on. Hopefully that will be the case here. They tested her, and she had parainfluenza, which just means it's a virus that's like the flu. We took her home and she seemed to recover in a few days. And she returned to school.

After that, she had some other issues come up. She had previously scheduled appointments with the dentist at 8am and a pacemaker appointment at 1pm in DC on Dec. 6 (Tuesday). And she had a follow up appointment with GI scheduled for the 7th (Wednesday).

On the morning of December 6, she woke up with the left side of her face swollen. Luckily her first appointment was with the dentist. I had made it the day before because she was complaining about a loose tooth. I just wanted them to make sure all was ok. We saw a partner that we have never seen before. He did not introduce himself. He was kinda rough and very quick in his exam. I asked him about her face and he had to take another look (he had already gotten up to leave). He quickly determined that she had an abscess due to impaction. She has several adult teeth trying to come in, but she has not lost her baby ones yet.

I left there, and called VCU dentistry because there's no way in hell I'm letting her get any anesthesia in a dental office. The only appointment they have available is for the next day at 8:30, which conflicts with her GI appointment. Given her history with infections, I had to bump GI for dentistry. So I call and reschedule GI for the following day.

The dentist at VCU looked and said there was NOT an abscess and nothing in her mouth could be causing the facial swelling. She told me to see her ENT. So we went home, and I took Harlie to school. I called ENT and they said we could come that afternoon. So, after school, we went back downtown to see her. She scoped Harlie's nose and determined that her sinuses are so clogged that fluid is backing into her skin. Crazy! That had to have been so uncomfortable, yet she never complained. She put her on an antibiotic for the next 14 days.

The next day, we went to her GI appointment. We discussed her intolerance of her feedings. By this time we had gone several weeks with not being able to get all of her feedings. She lost two pounds. Which isn't that bad, really. The NP pulled up her xrays from her emergency department visit and said that she was backed up and needed a clean out. So, poor kiddo had to do that over the weekend.

She took it like a champ, though, and was back at school on Monday. Sadly, it was probably unnecessary, as the antibiotics probably could have the done the trick...

On the last day of her antibiotics (Tuesday) she woke up seemingly fine. And just hours later was feeling crappy and was back on oxygen. By that afternoon she spiked a fever - a rare occurrence. Tuesday night was awful. We put her back on her pulse ox and it alarmed all night. If she pulled the oxygen mask away from her face (which she did the whole night) her sats would drop and would drop low - in the 60s!

Wednesday was more of the same. She seemed okay sitting in the chair watching tv. But, she continued to be febrile. Wednesday night she struggled, too. At 1am I had to go and fix her oxygen mask. I could tell she was on fire. And she was working very hard to breathe. I gave her some meds and stayed up for a while to make sure she was okay. I also sent a text to my friend Jennifer who sees sick patients and kids all the time. I just wanted to get her opinion to see if she thought I should take her to the hospital. I never want to rush to the hospital - unless I feel that Harlie needs more than I can give her at home. So, it's not something I take lightly. Jennifer came by on Thursday morning and said she needed a chest xray, and possibly different meds. It also occurred to me that she has not needed breathing assistance since she got her trach out. The trach was great for her because if she needed help, in a matter of mintues, they could just hook her up via the trach tube. She doesn't have that now. So, if she needed help, it would take longer to figure that out. Her mouth doesn't open enough for her to be intubated. So, I probably shouldn't wait too long to seek help for her.

So, I took her in. My flaw was not packing an overnight bag. If I pack a bag, I don't need it. If I don't pack a bag, I need it. And I completely forgot (was in denial?) or thought she was totally going to come home, so I did not pack a bag. Crap. Funny how accurate that has proved to be through the years. Sad that this is a true thing in my life.

So, she turned out to be really sick. The doc that took her under his service said that she has been essentially unwell for a month now and that he was going to take this seriously. In answering the bazillion questions that you get asked in the emergency department, her poop came up. Sorry, TMI, but I told them that I did notice that it had turned black in the last day or two. Interesting (sign of blood)...

So, they tested her for all kinds of stuff. And they admitted her. On Facebook, I had just shared a post about special needs parenting and the trauma and PTSD that goes along with it. I have been "joking" for years that I am brain damaged from the trauma, and this was my proof. I know I'm not as smart as I used to be about certain things. Luckily, I know my shit when it comes to Harlie. So, that's good. But give me a list of stores I need to go to and I can't figure out how to get to them all in an organized manner. I know I can't think through stuff like that and it causes me a great amount of stress. Again, I joke, but I'm really serious.

Anyway, during the whole admit process I felt on the verge of tears. Having to tell Tom that she was being admitted, on the 22nd of December, was no fun at all. I wasn't that upset about Harlie's status. Yes, she was very sick. Sicker than I've seen her in many years. But, I didn't feel as if her life were in danger. And, that my friends, is a wonderful change from the way it was for far too long. Yet, I wanted to cry. As a parent of a medically fragile child, there are way too many times you have to do crap you don't want to do. And this admit was one of them. She wasn't sick enough for the intensive care unit (way to go Harlie!) but she was too sick for the floor. So, she was admitted to the pediatric progressive care unit (PPCU). For those of you who have been reading my blog for years, you might remember that I've talked about this unit before. It is one big room with many beds, separated by curtains. It's not great. And it's Christmas. I wanted to cry. But, I had to hold it together. Harlie is right there and she's watching me. I need to let her know that everything's okay. Plus, there are sicker kids, and sadder situations than her being in the hospital for Christmas. I must keep it in perspective.

The tests indicated that she has RSV and that she's got some bleeding in her stomach. So, they put her on meds for the bleeding and within a day, that appears to be a bit better. RSV is a virus, so all you can do is support the patient and treat the symptoms.

In the emergency department, they didn't want me to feed her. So, she went all day with no feedings. And she appeared to be better, although nothing was done to make that happen. Once she got settled in the PPCU, sometime that evening, I was able to feed her. A few minutes after, she completely fell apart. Coughing a ton, sats dropped and she had an increase in her work of breathing. It was crazy. It took an hour for her to settle down and recover. So, clearly, there's some correlation there.

Unfortunately, that all happened around the time Tom and the boys came to visit us. I could tell Cooper was not liking her being here at all. Tom said that when they got home Cooper asked Murphy if he could sleep with him. Murphy would normally say no. But, he is such a good brother, and could tell Cooper needed some comfort. So he said yes. I give Murphy a hard time a lot, but he really is a good brother when it counts the most.

Thursday night was okay. My friends Bethany and Geoff were out on a date night and were near the hospital. So, they brought me a dinner from Comfort (a restaurant not far away). It was very late, but I was hungry. They were so good to bring it to me. They even sat with me and we got to chat for a while. I got a few hours of sleep. But, I am sitting two feet from a sick baby and he had a hard time a couple of times during the night.

The GI doc came to see her this morning and he said that she can not get a regular feeding. It would be better for her stomach to get small amounts at a time. And if the bleeding doesn't stop, we'll have to not feed her and give her Pedialyte for a day or so to let her stomach heal. So, we had to put her on continuous feedings. This definitely feels like a step backwards. She hasn't been on a feed pump in years. And it's so hard to go backwards. We do not want a new normal. We want our old normal. But, I also can't ignore that she simply cannot tolerate a feeding right now. I don't want to do that to her. So, she's on continuous feedings until she fully recovers.

Her pulmonary doctor came to see her and he said he wants her to have a good day before he will let me take her home. She is still coughing a lot, but overall I can definitely see a difference and that she's feeling a bit better. Her last fever was 103 on Friday morning and she's been good ever since. So, that's a good sign.

Her blood pressures have been low all day. But, they are keeping an eye on it.

Hopefully, we'll be able to take her home tomorrow. We usually go see Santa on Christmas Eve. Not sure if that's going to work out or not...

Child Life came to see me today. She said that she wanted to find out if she's going to be here for Christmas. Carolers are coming tomorrow (Christmas Eve) and on Christmas they deliver a bag of toys to each child. Hopefully she won't be here. But, she made her a bag anyway. She asked me what she liked/didn't like and she put together some stuff. So sweet, it kills me.

It has been really funny to watch Harlie's interactions with everyone. She asks, "What are you doing?" to everyone who walks in her "room". She's very suspicious and she wants to know what they are doing before they do it. If they stand in between her and the TV, she tells them to move, no matter who they are. And she will randomly ask her nurses what their favorite color is or what their favorite animal is. It's really cute. But, she will also yell "NO!" at them when she knows they are headed for her IV. They have to argue and fight to gain access. When they hook up her IV meds she asks "how many minutes" (it's going to be hooked up). And then tries to negotiate for less minutes (which they can't do). She also told her nurse that she doesn't like stickers. Her nurse said, "Why don't you like stickers?" Harlie said, "They are too sticky." Even when she's sick, she is funny.

Tom brought the boys down for dinner. And my brother Bruce and his wife Nancy came to visit, too.

That's it. Hopefully we'll be able to go home tomorrow. Pics from our stay so far...