Archives for posts with tag: ICU

IMG_6440When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to take a minute to say that I’m crazy grateful for how far she has come in the last year.   Our girl – the one with spunk- has fully returned!   Having the mitrofanoff has made it much easier to care for her- allowing us a flexibility I never even really dreamed possible.   We can be spontaneous with less planning!

Even though she’s been out of the hospital this summer she’s never really settled.   We are constantly tweaking things or watching something. As of this writing, one of the things I feel like we are chasing is the noise that Grace has been making. Our normally quiet girl has taken to being very noisy. Sometimes I think she’s just “talking”. Other times it seems to be a sign of distress. We’ve been trying to figure out why this is. The school year rapidly approaching adds a bit of pressure as even after doctor visits, x-rays, changes in meds, even a dentist check, we still don’t know what is causing her discomfort. We snuggle her at home when she gets to sounding distressed and that calms her. I can’t see that working at school in the same way. I have fears of her being ushered out of classrooms because she’s interrupting others learning. Next week she will be in her last year of elementary school. I’m increasingly aware that opportunities for integration will only become fewer and I want her to soak up every last drop this coming year.

Yesterday I was at Hy-Vee picking up Pedialyte. It had been decided that we needed to give her stomach a break and see if that would perhaps bring her more comfort. I left work 10 minutes earlier than I regularly do and found myself standing in front of several kinds of Pedialyte. Most had prebiotics. I have no idea what prebiotics are and didn’t have time to do any googling. (Grace is not allowed probiotics because of her port so my hunch was that prebiotics maybe shouldn’t be in her wheelhouse either.) So anyhow I found a bottle that didn’t say the word prebiotics on it and went to check out. Luckily there was someone at the express checkout and no line because I was pushing my time. I had to be to daycare to get Graham (who doesn’t always want to leave right away) and be home for Grace’s nurse to be able to go home. Anyhow, I found myself in the express line face to face with this very young looking man and to my horror, I start hearing the music playing in the store and my eyes tear up.

It was Miley Cyrus…It’s the Climb. The part I began listening in on goes like this…

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waiting on the other side
It’s the climb”

So anyhow I start tearing up.   The chasing the noise to no avail. The weight of the past year. The fear. The constantly trying to get caught up. The advocating. The defending her. The unknown.

It all takes a toll. A really real one.

So much about Grace feels like an uphill battle. I wish sometimes it weren’t a battle just a slow and steady climb. But the battle sometimes is a war within ourselves trying to decide the right thing to do. Sometimes the battle is getting what we think she needs. Sometimes it’s about deciding what fights to fight and which ones to let go.

We want Grace to keep growing and learning and getting stronger. That’s the wanting to make the mountain move. She’s got crazy tough epilepsy that affects so much. Growing Grace is slow, long work that requires much perseverance and so much patience.   More perseverance and patience than I have some days.

We don’t know what’s on the other side for Grace. We are taking this one day at a time. That journey – that’s the climb if the song holds true.

So I realized it was a bit much – me getting all teary eyed in a store. I tried to put it in perspective. The tears receded. I was doing what I could for that day. I’d been on the phone with three of her doctors’ primary nurses. I’d been with Grace when she had a hard seizure that morning before I left her. I’d taken her to speech therapy. I’d given her meds, cathed her, dressed her, kissed her cheek, and handed her toys. I’d held her hand. And now I was going to give her Pedialyte and report to the doctor the next day.

I walked out of the store and away from the song.  I was, however, grateful that I had heard it play. Somehow it encouraged me to keep going.



IMG_3496Today Grace was transferred off of the PICU to a general floor. While she no longer requires the care of the PICU staff it should be a good thing to celebrate but it was more of an upside down, crazy train commotion than it really seemed that it needed to be. We have found ourselves training nursing staff of Grace’s seizure types, lobbying for a seizure bed that had to be trucked in from Iowa City and working out all the kinks in medication protocols. It was far from smooth transfer to just one floor down. Thankfully both the PICU doctor and resident have personally checked on us to help smooth out the wrinkles. On the plus side, Grace now has a room that is technically a double, which is nice since Grace does not pack light.

We have a new plan worked out and if everything goes to schedule Grace will be discharged Thursday or Friday.

Graham has been a real trooper through all of this; we don’t give him enough credit. For the past two and a half weeks, his life and day-to-day routines have been thrown out the window and he just wants a regular “Mommy and Daddy Day with no hospitals or surgeries” as he puts it. We are rotating every other night at the hospital so he has contact with one of us every other night. He has requested several times to come to the hospital but in general, I think he likes Minnesota hospital stays better since it involves staying in a hotel with a pool and a shuttle bus ride to and from the hotel and hospital.

It’s interesting how Graham interprets being in a hospital, for him, there are toy rooms, books, and even an outside play areas. Today we pressed the nurse call button to request some new bedding for Grace while we were finishing up some of her cares. When a voice came over the intercom, Joy asked for some bedding and then Graham shouted out “and some cookies too!”



Grace and I have had a quiet day in ICU. Technically she wouldn’t have to be in the ICU anymore – but because they know her, and are looking at continuity of care, they are keeping her here rather than moving her to a floor. I am very grateful for this. I would hate to have to start at the beginning explaining all of this to a new team.
Grace has been up playing in bed with some assistance. She is having fewer seizures. She’s rested some, but not really napped. She looks longingly out the window from her bed. I let her know several times that her swing is waiting for her at home. We watched Tinkerbell on TV.

Our big news – she is tolerating one ounce of pedialyte in her stomach per hour. As long as this continues later tonight we will move her up to an ounce and a half per hour. Slow and steady – that’s the plan. I’m fighting so hard not to be anxious. We’ve been here a week, we are in the home stretch. Our girl is coming back.


IMG_9257Grace is still in the ICU. The ICU has been an interesting place to be. I’m grateful that this is the first time that Grace has needed this level of care.   She is constantly being monitored. I feel like we are relearning things about her as we work to get her back to where she was. There is so much I take for granted about her and what she can do – but as you explain it to others you kind of have to think to yourself about how absolutely far she has come. You always want more, though. This is making me realize that what we had was really quite a lot.

We aren’t able to give her any food or medicine in her stomach at this point. She is being maintained by only IV fluids and meds. The majority of her seizure meds are not available by IV so she’s had some tougher seizures to contend with. Today we will begin giving her a little nutrition through her IV.

When we came in her belly was really bloated and hard, like a tight drum. It’s much softer now. They are taking measurements so we know for sure it is going down.

They are actually tracking quite a bit about her. Everything about Grace is trending in the right direction to allow us to take her home. But, it’s slow. This morning we learned that we should plan on being here all week.

She’s comfortable. She’s getting better. We need to be patient.


IMG_3495Grace has in the ICU tonight. I was with her today during her monthly infusion that she practically slept through. Her abdomen has been a bit distended but that was attributed to some gas that we have been able to mitigate through venting of her G-tube and with gas drops but today it just seemed like it was getting larger but I kept telling myself no it’s just the really uncomfortable hospital bed/recliner I had her positioned in during her infusion. When we got ready to go home I was buckling her into her specialized harness in the van and the preset strap no longer fit like it did just five hours earlier and I had to extend it two inches to fit.

Before leaving the parking ramp I called Grace’s pediatrician and he advised we go straight to the ER as we would need an X-ray. So we got out of the van and made the trek to the ER. While we were triaged immediately no one knew what a Mitrofanoff was which makes me seriously consider how fast I could drive Grace to her doctors in Minnesota. At first, we were not getting the needed momentum due to significant delays in radiology but once the results came back and due to calls we made to our surgeon’s office in the Minneapolis things were quickly set into motion.

It’s not a big secret that we are often leery about the capabilities of local medical care which have been in part to providers transferring care out as Grace is so complex, the complete lack of subspecialty in the area or even the entire state (in some aspects we just don’t have the population needed to recruit the subspecialties), and often times unwillingness to work as part of the overall team with Joy and I as captains of the ship (after all we are the only two people in the world that fully understand Grace’s complexities and interworkings). We were pleased that the pediatric surgeon that was called in was more than willing to work with us and with our doctors in Minnesota.

Based on the local surgeon’s consultation with our surgeon’s office Grace was admitted to the ICU, not because of sickness but due to her complexity. Second, they began pumping her full of IV fluids which we were able to see some immediate impact, third, they started an NG-tube (a tube through the nose to the stomach) to pump out excess gas. The radiology tests showed occlusions in her bowels a risk of this type of surgery. This is the third surgery she has had in her abdomen over the last 10 years and with each surgery the greater the chances of complication. An occlusion is an obstruction in her bowels that is can be caused by any change to them.

The plan right now is to limit all volume by mouth and move everything to IV, she will be in for at least 24 to 48 hours and hopefully, we’ll be able to avoid surgical intervention.

As we waited in the ER Gene Autry singing Back in the Saddle Again played over and over in my head.  We pretty much have saddle soars now I would just as soon not to be riding but here we go again.

This would be a really good time for anyone to pray or think good thoughts…you decide which. The next 24 hours will be crucial.