Post-Op Day 2

Hi! I'm going to start with last night. I was in my room at the Ronald McDonald House (RMH) when I got a call from the attending doc. He said that her blood pressures had dropped too low for their liking and the typical easier solutions weren't working to bring it up. So, they needed to give her a central line and an arterial line to be able to give her epinephrine. She also spiked a fever, so they took cultures and put her on a few antibiotics (vancomycin, clindamycin and ciprofloxacin, I think).

He said that they were going to put a central line through her femoral veins. So, I told him what I tell every doc who mentions her femoral veins - they are done, scarred down and too curly for access. He said he had already looked via ultrasound and he felt good about it. Okay, then. So, I gave consent over the phone.

They called me about an hour later and told me all went well.

This morning when I called in to check on her, her nurse told me that the central line was unsuccessful. Apparently it drew back once, and then was done. Shocker.

I got up and went to take a shower, and there was no hot water. 😐 There is hot water at the sink, just not in the shower. So, I had to wash at the sink, which is great fun, especially when you have long hair.  And I was chilly, so I pretty much shaved the skin off the top of all my goose bumps on my legs. Awesome. I stopped at the office on my way out and let them know about the hot water (or lack thereof) and he said he was going to call someone, but since it is Friday, it might be Monday before someone could come out. I asked if I could move to a different room, but they are full.

My friend Donna (Alex's mom) texted me and asked how things were going. Alex is still in the hospital in Richmond recovering from spinal fusion surgery on Tuesday. Anyway, I told her about the hot water issue and she said that would've made for a great episode in our special needs reality TV show.  She's so funny. I do love that we have such similar senses of humor. We can always make each other laugh.

The rain let up a little, so I decided to walk to the hospital (two miles away). The walk is really good for me. And halfway is a Starbucks, so I stopped and got some coffee. Since I felt like it was later than when I planned to arrive, I decided to go straight to her room to see if they had already rounded. Then I would go back down to get breakfast.

Luckily they were just about to round! I'm so glad I didn't stop for breakfast!

Edit: I am inserting this picture because when I post my blog on Facebook, the first picture in the post is shown, big as day. And the first picture was Harlie, but I was afraid not everyone could handle how she looks. So, here's a random picture from her room.

So, here's how she looks today. Gotta let people know she's a girly girl, despite her current state.

She's gotten lots of compliments on her Pug bow (Cooper's Christmas gift to her) and her toes. 

So, I'm trying to figure out how to brief you in simple terms, since there was a lot of info given during rounds...

Basically they are calling what happened last night, septic shock. And because they are still trying to get her balanced, she in a rescucitative state. And because of all that, she is not stable enough to move her to the special bed. The bed arrived last night (they had to order it from Baltimore). I'm guessing pressure sores aren't as common in kids.

But, luckily we knew to alert them ahead of time, so they have been proactive by putting a special padding on that area (where she got her last pressure sore - aka sacral ulcer). Her nurse has been checking her regularly and she said she looks good so far.

They had to stop her feeds because of her instability. She is positive on fluids (meaning she is fluid heavy) and that is because her capillaries (??) are leaking, which is a symptom of the septic shock (I think that's what she said). And she will remain on the paralytic. Her lungs look wet in her x-raysand her sats are low, so they increased oxygen and added in nitric oxide, which helps patients with her heart issues (Fontans).

They need to give her a PICC line (peripherally inserted central catheter) to give her the meds she needs (a regular IV can't handle what she needs) and to give her TPN (nutrition intravenously) since she can't be fed. But, interventional radiology has to do the PICC line and they are booked for the day. So, the attending (who is awesome, by the way) said he was going to work on that.

Rounds can be stressful, because it is hard to hear how many issues there are and how few options they have to fix them. Plus, some of the terms just sound scary (septic, rescucitative state). So, I asked him from an overall perspective, on a scale of 1 to 10, how concerned is he about her. And he said 4 (she came in at a 2). So, that's good. I told him I have to minimize things, so I need them to tell me when I need to get really concerned.

Even though I minimize, all of this is sounding exactly like what happened in Boston. So, I was just feeling yucky about it all. Then my nurse said I had visitors. Really? I wasn't expecting anyone. So, I went to go see who was here and it was my friends Carol and Sally!! How awesome is that?! It was perfect timing since I wasn't feeling so great.

Since I hadn't eaten breakfast yet, we went downstairs to get something from the cafeteria. But, it was closed. I don't get how they think parents can function on a regular mealtime schedule while their child is in the hospital! So, we walked to the restaurant where I had dinner last night. It is a one mile walk.

We had a great lunch, and then walked back in the rain. Luckily they stopped and got a bag that Tom packed for me, and he packed my raincoat. We hung out in the room until they had to leave.

They brought a giant balloon for Harlie.

And they brought snacks for me. Even remembered that I miss fresh fruit when we're in the hospital!

ENT came by and said they are working to get her scheduled for the OR to see how things look and see if they can pull the ET tube. Since she has shown she can't be sedated, they would rather not let her stay on the paralytic any more than absolutely necessary. So they are trying to see if they can fit her in on Thursday.  But, the only time is an afternoon slot, and they don't want  her to be a late case. Her ENT can't be here next Friday, so they might be forced to wait till Monday, March 5th, which will be 12 days. I'm nervous for them to rush it on the short side because it is so important that her airway heal as best as it can. I guess there are pros and cons both ways. We will just have to wait and see how it turns out.

So, it is 4:30, and her nurse just said that she's had a good day and that she's stable enough to be moved to the dolphin bed.  So that's great!

And Interventional Radiology came by and she said that they are going to come and give her a PICC line sometime between 5pm and 6pm.

And I just checked my email and got this from the RMH:

A plumber visited your room today and attempted to repair the hot water issue.  Unfortunately, the repair requires them to order parts and shut down water to the building.  They were not able to do so today. 

I’m not able to move you to a different room as the house is completely full (we have a waitlist at the moment).  There is a shower in the restroom near the main office on the 1^st floor that I can offer for you until we are able to make the repair or move you to a different room. 

I know that this is not ideal and I’m very sorry for the inconvenience.  We will let you know as soon as we are able to make a change to your current room.

So, keep your fingers crossed that a room opens up or that the parts come in soon. Hard to complain when I'm lucky I have the room at all. At least there is a shower I can use in the building.

They are now working on figuring out how to safely transport her to the dolphin bed. Waiting on a board, I think. I'm told a lot of people will be involved since they cannot let that trach or ET tube come out.

Tom is going to come up after work, so that's good.

Overall, I think things are better than they were this morning.

It is now 5:37pm and they just moved her to the dolphin bed. Whew! That was pretty amazing to watch. Lots of people (11-12) and coordination. I tried to take pics but they do not do the room justice. I would have loved to have gotten a bird's eye view!

They are still getting her all settled in her new bed. Interventional Radiology hasn't gotten here yet. Or maybe they are waiting outside. I have to leave the room when they do that, so I think I might go see if the cafeteria is still open. 

Okay, I'll finish this one up for tonight. Thank you again for all your love and support! 

Much love to you all!
Christy xo