Friday, March 2, 2018

The Whirlwind

Loop Recorder day! This was right before we sent her back with the nurses.

I finally have a minute to (kind of) catch my breath after the whirlwind we've been trapped in the last few days. *sigh* This is going to be super long, but here goes...

Ramona got her Loop Recorder last week, and that procedure went as well as we could have hoped. It was about an hour and half from the time we sent her back until I could go to recovery to sit with her. The only issue was that she was bright red from head to toe after the procedure and we weren't sure why. We waited around a few hours and the redness eventually went away, so we went home. The next day she acted like nothing had even happened! It was amazing. We were happy, relieved, and thankful that things had gone so well. We were given a transmitter to keep beside her bed that would send any recordings each night and a button to keep in the diaper bag that we could push when we noticed symptoms.

On Saturday, Ramona had a small fall and smaller version of the episodes she had been having where she went limp and it seemed like she almost passed out. Unlike some of the other episodes, this one lasted less than a minute before she was acting like herself again. We pushed the button we had been given to record it and went about the rest of our weekend as normal.

Monday morning, I dropped the girls off at my mom's and went to work. An hour into the work day I received a call from a nurse at the doctor's office asking about the details of what happened when we pushed the button on Saturday. She said she would show the results to the doctor and he would get back to us later. The doctor called back very soon and said that there was irregular heart activity around the time we pushed the button, including a TEN SECOND  PAUSE between beats. That was a punch in the gut. He said he first impression, based on these results, is that she might need a pacemaker rather than defibrillator that had been mentioned before. He said that we should bring her to the Children's Hospital at OSF to be admitted right away, and that she probably would have to stay there until she could get a pacemaker. We went home, packed bags with a few days worth of clothes, and dropped Daisy off at my mom's house.

We checked in at OSF just after lunch, and it wasn't long after that before one of the doctors came by with a print out of the tracing from her loop recorder that showed basically a straight line for 10 seconds. He said that, after further review and talking it over with the other cardiologists, they thought it was best that we be transferred to a hospital with transplant center before anything is done. He said that a pacemaker would help with the pauses in heart rhythm, but it wouldn't help with the underlying problem that she just has a really bad, really thick heart. He said that it didn't make sense for them to start doing procedures in Peoria if she was ultimately going to need something different soon, and he thought a hospital capable of doing transplants should make the call.

She was so excited that her aunts came to visit while we were at OSF.

It puts a knot in my stomach just thinking about that conversation. A transplant has been mentioned before, but always as a last resort kind of thing, which made it seem like it was far away. And now, here we were talking about moving to a different hospital all of a sudden because it might be the best option sooner rather than later. There are just a lot of uncertainties that need to be explored before they can figure out what will be best for her. My parents brought Daisy over that night so we could see her, which was a bit of a boost for us. But, then the rest of the night was rough. They tried to start an IV without success, and then they had to check her vitals every hour, which means neither of us got much sleep. And, Mo has a virus that comes with a nasty cough, which also didn't help. We were already wiped out on Tuesday when they tried the IV again and finally got it to work after couple of miserable tries. Then, we waited to see if Lurie Children's Hospital in Chicago would take her as a patient and if they had a room available for her. They did, and a transport headed down from Chicago to pick up Ramona and me. It all happened so fast. My mom hurried over with Daisy so we could see her again, and we started making arrangements. We found out that we could stay at the Ronald McDonald house and that children are welcome there, so we made plans for Nathan to go home, pack some bags, and then drive up with Daisy later that night. I would ride in the transport with Ramona.

Daisy, Hide and Seek Extraordinaire.

Shortly before our transport arrived, someone from Lurie called to let us know that, while Daisy could stay at the Ronald McDonald house, she couldn't come to the floor of the hospital that Ramona is on. So, she could never see Ramona, and Nathan and I could never both be with Ramona at the same time since someone would always need to stay back with Daisy. Even if there was an emergency, Nathan wouldn't be able to come be with Ramona and me. We had to make the heartbreaking decision to leave Daisy with my parents and have Nathan come up without her. What's a mom supposed to do when she isn't allowed to take care of both of her babies? When she has to choose between the two of them?

On top of that, we were just sitting around waiting for a transport to arrive and take us into a completely new unknown. Waiting for something you're scared of is a horrible feeling. We had been very happy with the experience we had at the Children's Hospital at OSF and at the Congenital Heart Center there, and LOVED the doctors we had there. They had been such a blessing to our family, and it was very hard to leave that for the unknown. Our transport arrived and packed Ramona into a giant stretcher. Following them out of our room, leaving behind both Daisy and our doctors, and heading for who knows what, was one of the hardest things I've ever done.

Watching Toy Story on the way to Chicago.

The transition up to Chicago was a rough one. Not the drive itself, as our transport team was such a blessing at that time. They were kind, compassionate, and even funny. They somehow made the trip itself  be something other than miserable. Ramona was able to watch a cartoon until she fell asleep and slept the rest of the drive. Getting settled into the hospital was very hard. We probably arrived at Lurie around 9 PM. We got checked into our room and Ramona had several tests done and vitals checked and was all around poked and prodded until she was pretty miserable. I told them we hadn't had supper since we were driving during dinner time, but they never offered us anything to eat. I had some graham crackers in my bag that I tried to feed her, but she was too tired to eat anyway. Nathan got in late that night, and my mom rode up with him. I could barely wake myself up enough to say hi to them before they went to find someplace to sleep.

They kept telling us how nice it would be up here. We are in a tiny little room where we have to rearrange furniture every time people come in the room just so you can walk around and get to things. There's no tv or bathroom, we have to pay for food, and parking is $15 a day, which is pretty despicable. We ended up having mom drive our van home so that we don't end up giving the crap-town of Chicago a thousand dollars in parking fees.

Out our window.

Then, Ramona is in isolation because of her cold, and we didn't realize we have to wear the same isolation gowns and masks as the nurses anytime we're in her room (which is basically always) until an angry nurse came and got mad at us. I had taken my shoes off while I was holding Ramona, so I started crying (for like the fourth time so far that day) and went out to the hallway to get gown, where I then slipped and fell right on my bottom and started bawling. Which was awesome. Such a great day. Definitely one for the scrapbook. I spent basically the rest of day crying because I hated it here. And because Daisy is going to think we abandoned her. And because I wished we could somehow just to back to to Peoria and stay with Dr Albaro, Dr Jantzen, and Dr Orcutt. Ramona had various tests, and we met lots of people we didn't know and received too much information to remember.

So tired she fell asleep during her echo. 💓

Then we got a little beam of sunlight. Actually, a great big beam. Mom stayed with Ramona while we took a shuttle to check in to a room a the Ronald McDonald house. It's so much more than we could have hoped for. We have a really nice room with a bathroom, free laundry facilities, 2 free meals a day if we happen to be there at meal times (the ones we've caught have been reeeeally good), and all kinds of fun things for Daisy to do when she comes to visit. I can't wait to show her everything. There's also an open pantry, library, several family rooms with TVs, and a big kitchen we can use. To keep with the day's theme, I cried again while they gave us a tour. At least it was a happy cry for once. So far, Nathan sleeps at RMH during the night and I stay with Ramona, and then I go there in the afternoon to nap for a few hours while Nathan stays with Ramona since I'm up so much in the night. Between vital checks and coughing spells, we haven't been getting a lot of sleep during the night. We're so blessed to have our room at RMH to rest and recharge. I will never skip putting my change in one of those little boxes at McDonalds again.

Our room at RMH. Again, so thankful for this.

The last few days have been full of tests and trying to entertain an active baby who's cooped up in isolation with tangled up wires all over the place. They had to redo her IV today, so hopefully it's in for good this time, because that's the worst. We've had some really great nurses this week, and I'm sure we'll get used to being here and figure out how to "make it work" (said in my Tim Gunn voice). As you've can probably see, I've been a bit of a major complainer since we've been here, and I know that's not how I should be. I've had to apologize to nurses more then once for being grumpy with them when I shouldn't have been. A friend pointed out that I probably just hate it here because of the reason I'm here.

That's the basic overview of this week. I've got some information to share on the medical side of things, too, but I'll have to do that tomorrow. We've been told to expect that it will be a couple of weeks for testing and observation before they start to put a plan together, but I'll try to type up what we know so far sometime tomorrow.

She's been making her monitor alarm go off like crazy tonight with low heart rates, so she's been upgraded to checks every hour or two, which means even less sleep than usual. *sigh*

Here are a couple of prayer requests and extra pictures.

- For this doggone cough to go away!!!
- For all of us to be able to get more rest. It's impossible to get good sleep and we're running on empty.
- For her heart rate to stay up and these alarms to shut up
- For us to figure out how to make it work here
- For her heart to be healed
- For Daisy while she's waiting for us to come home  :(
- For us to find joy somewhere in sadness

And some extra pictures:

Bright red from head to toe after getting her loop recorder last week.
She gobbled up food and gulped down water as soon as she was allowed to eat.

Pretend picnic. Only cookies were served.

Two little cooks.

All of my sisters were home last weekend! I'm so glad
I got to spend some time with all of them then, and we're also
glad we got to visit Nathan's family in Florida before everything.

This garbage truck continues to be one of her favorite toys.
The thing on her arm is to keep her from messing with her IV.

Waiting for them to try to move her IV to the other arm. Not
a great morning for her. Those are hot pads to help get ready for it.

When they moved her IV, they covered it differently so she could still use her
fingers. After having them trapped for a few days, she kept clasping her
hands together and smiling :)

So studious! (last week at Mimi's house)


Yes, my soul, find rest in God;
    my hope comes from him.

Psalm 62:3

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