That Was A Short Stay At Home

If you follow along with our frequent hospital stays it is no secret our affinity for Riley Hospital. We are thankful to have such a world class facility so close to our home. Speaking of home it often feels like this is our home away from home, which is both good and bad. It’s also my office some days, like today. Heck I’m even typing this in our room while Emme gets some much needed rest.

So after getting discharged from a nearly week long inpatient stay on May 6th we were looking forward to having everyone at our first home. We accomplished that, but not for long.

That’s right the time stamp says Sunday May 8th. Mothers’ Day. Emily had a great Saturday. My mom was in town and it was nice to have a day that was somewhat normal. Then Emme woke up Sunday morning with lots of stomach pain. That is not normal for so soon after a pancreatitis stay, but we know her pancreas is getting progressively worse. She was only awake for two hours before this post. That’s also not normal for her.

“This isn’t like her, I hope it’s not an infection” – Elizabeth Theisen

In case you didn’t already know my wife is basically Superwoman (read to the end for more on that) Some of her super hero skills include basically being the worst paid nurse on the planet. Not taking anything away from nurses since we know how hard their job is, but my wife knows our daughter better than many doctors even. Her words to me at the same time of this picture turned out to be spot on.

Fast forward a few hours. Thankfully I had called my mom to make sure she made it back home to Michigan ok and for Emme to talk to her since she wasn’t feeling well. When I knelt down I could tell she was burning up. After taking two temperatures at 100.5 I had to call Liz. She was at dinner for Mothers’ Day with her mom and that side of the family. She never gets to go out, let alone with her whole family. She didn’t even make it to be seated.

While 100.5 in most kids is worrisome, it’s not scary. When your child has a central line (her port goes right into her jugular) they make you come to the ER the minute the fever reaches 100.5 in case there is an infection in the blood stream. By the time Liz drove the 2 miles home her fever was up to 101.4

We got to the emergency room and while Emme wasn’t feeling good we don’t call her the Warrior Princess for nothing. We went to get x-rays right away and she was holding court. She insisted on everyone in the x-ray suite telling her their names. I mean insisted. Even someone in the adjacent x-ray room who peaked their head in after hearing the laughter had to announce who they were to Emme. When they said they were going to take her picture now she took her pacifier out and smiled. She had them rolling. It always amazes us to see how she acts once we find out how truly sick she was at the time.

We have been through a lot with Emme. We have had some scary moments. This one ranked pretty high, if not the top. What we found later was when they said her white blood count was low, they meant zero. Literally zero. She got the shakes She couldn’t answer more than one question at a time, and even that was a struggle. We have only been in the ICU once with her, so when they start talking ICU it’s no joke.

RANT ALERT: We get listened to much more than normal parents due to our specialists and previous history at the hospital. We have learned long ago that a doctor or nurse isn’t always right. Parents know their kids better than anyone else. If your kid isn’t acting normal, make sure you are heard. While we were listened to this entire ER stay we had to push many times. When the doctor was trying to assure me she was just a little low energy and not to worry I got pretty upset. I insisted this wasn’t normal and they needed to act as such. Liz said if she would’ve heard him say that she would’ve went off. He did listen to us and sure enough that was the time she “flipped” I put in this caveat because you as a parent are your kids advocate. Even if it’s your first time in an ER do not take medical staffs word for things. Question everything you think is questionable. Raise your voice. Make sure you are heard. On to regularly scheduled programming.  END RANT

We/Liz try and keep our support community up to date with Emme. We know how much she means to so many people. With that said we rarely update more than once or twice a day. You can see from the constant updates that this stay was different.

Finally a turn for the better. Even though it was brief, man was it good to see;

And then some great news earlier today, with her fever staying normal for 48 hours and every blood culture after the initial one coming back negative we will likely be heading home in the morning. I hesitate to even post this tonight and jinx anything. She is still having some breakthrough belly pain and diarrhea likely due to the antibiotics. These aren’t enough to keep us in. If you have ever been inpatient you know how tough it is to get discharged on a weekend so getting the word we can leave on a Friday is ideal.

In case you didn’t click See More on one of Liz posts above Emily had her stomach tube replaced today as well. She went back into minor surgery with all the nurses and was waving to me and saying “Bye Daddy” not many 3 year olds are ok with being taken from a parent by nurses but not our little extrovert. While in pre-surgery she was playing games on a tablet and high-fiving the child life specialist. She is one of a kind.

She was even feeling well enough tonight to have a visitor;

For those trying to understand the video she normally says E for Emme. Jonathon was goofing with her and she kept cutting him off. Then she said “E is for ME!”

So about Superwoman.

In the middle of all this Liz’s ankle started bothering her on Monday. Not an abnormal occurence since she busted her leg and ankle in a bad car accident 13 years ago. In fact they had told her by the age of 30 she would likely need reconstructive surgery. Tuesday rolls around and something isn’t right. Her ankle starts hurting worse than it has since the accident. Then all of a sudden she can’t walk. Literally can’t put any weight on it. After being stubborn and trying to see if she could deal with it or it would get better she listens to me and lets me take her to the ER. We are so flustered at this point we fail to remember the big, shiny new hospital right across the street in Eskanazi. We drove to Methodist. That was a poor choice, but going to the ER wasn’t. As I type this she is now in a walking boot and headed for an MRI Friday afternoon. Let’s hope this doesn’t cause major issues with our trip to Minneapolis for Emme’s consultation. Let’s hope it’s not broken in some form like the doctors are guessing it is.

As if you need another reason to solidify the fact that two of the strongest women on the planet reside under the same roof as me.

 

 

4 Responses to “That Was A Short Stay At Home

  • Shirley Ellis
    1 year ago

    That’s great news! Hopefully the next post will be from your living room!

  • Sue Johnson
    1 year ago

    You guys have been through so much, I hope and pray you get a much needed break soon

  • I’ve said this so many times before, but it’s certainly worth repeating, you are all my Heros, Emme is such a Warrior Princess, that’s fought so many battles, you, Elizabeth & the boys are just an amazing family, you keep the rest of us upbeat, we’ve always got to look at the glass as half full

    • chrisjtheisen
      1 year ago

      Thanks Meemaw, glad our fight can have that kind of influence on people

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