Archives for posts with tag: home health nurse

2B692091-A0AD-4844-AFD3-6755D0873689Summer has officially begun. Grace and Graham were done with school last Wednesday. I’ve unpacked a lot of the school stuff. Communication book, drumsticks, catheters, formula, diapers and unused pencils for Grace. For Graham a video showing kindergarten highlights, and so much of evidence of all he learned over the last year. We puzzled through some of the spellings in his work and marveled at his drawings, letters, and numbers. He learned so much in kindergarten!

I’d say their only year together in the same school turned out to be a success. Both of Grace’s teachers mentioned that Graham frequently sought them out to say hello. On the day he used his dragon tracks to be principal for a half a day he came home and reported to us that he’d been able to choose some classrooms to go to with the principal. He went to his own kindergarten room, but he also asked to go to Grace’s general ed room. When Grace wasn’t in that room the principal took him to the special ed room. And when she wasn’t there they went to the band room where Grace’s class was hanging out because the air conditioning in the special ed room was broken. I thought it was very cool that Graham used the opportunity to look for Grace.

For her part as a 5th grader, Grace got the chance to make afternoon deliveries to all classrooms. Evidently, they frequently peeked in on Graham.

There was one day this year when I dropped Grace off at school after therapy and was stopped by the school nurse asking for me to come to her office as soon as I had Grace settled. And then she winked at me. After another trip to the van to get the rest of Grace’s stuff and a kiss on her cheek goodbye, I reported to the nurse’s office to find Graham there. His stomach was hurting. But after a few hugs and a snuggle, he skipped off to kindergarten. I waited for the nurse to call me that day but she never did. He was fine. I was so grateful to have had the chance to be there for both of them that morning.

On Wednesday I attended the end of the year assembly. After songs to make me cry the siblings of 5th graders were offered a chance to line up in the middle of the gym. I saw Graham’s kindergarten teacher help him get into place. Once everyone was lined up the fifth graders “left the building” through a tunnel of high fives. This is what I’ve come to understand is the 5th grade clap out. Grace went second. It all happened so fast I got zero pictures. Graham told me later he got tons of high fives but none from Grace or her nurse Garrett. He was a little sad about it –but glad he got to be right up front.

As I left the gym after her in a hurry I walked by and made eye contact with Grace’s third-grade teacher and then her kindergarten teacher. Obviously tearful I only managed quick greetings–torn between getting to my girl and telling them one last time how much I was thankful for them I ended up following my girl.

And when I got to Grace her nurse and her aide were in hurry to get her water and get her cathed and get her to the park.   This huge moment was done. Life was going on. I walked out of the building crying and cried most of the way home. I swear a few trees cried with me as the wind blew and small leaves blew down around me.

Grace was done with the school she’d been at six years. “We have them the longest” her special ed teacher had said when we had Grace’s transition meeting to middle school. “It makes it harder to let them go” the speech therapist continued.

I’d been up to 11 the night before her last day trying to find words to thank so many people on Grace’s team the past six years. People who have loved her, cared for her, spoken for her, assured she wasn’t passed over. They’ve been with her literally half of her life. How do you thank people for that? And the thing is…the thing that makes me feel so helpless is that I imagine I only have an inkling of what she experienced there. That longing for communication, for knowing what it meant for Grace to be loved by them in what I’m sure were a million small and big ways escape me.   I’m sure that I’m not yet done processing what it means for Grace to be moving on from them. I’m sure there is more crying in my future on the topic.

But to bring this to an end I’d just say that on their last day of school in the same building I missed the opportunity to get a picture of them together. It didn’t work in the morning because they don’t get ready at the same time. After school Grace had a wheelchair appointment, Graham had taekwondo and that was that.

I’m so grateful they had their year- that they experienced sharing in this way this one time. I’m grateful for all the people who were in each of their stories their kindergarten and fifth-grade years.

And now we begin summer stories…

Joy

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FullSizeRenderGrace will be undergoing a surgery to have a Mitrofanoff that will create a tunnel using her appendix between the bladder and outside of her abdomen. This will allow for us to easily empty her bladder with a catheter making her personal cares easier as she continues to grow and will help prevent UTIs which she has been prone to over the years.

This week was meticulously planned in prep for Grace to have the surgery tomorrow.   Joy was traveling for work and we worked out the details of managing everything that needed to be done in prep. All systems were go. I was wrapping up my time at work yesterday and ready to be off for a week and a half when I got the call. The surgeon’s office called to tell us that bacteria showed up in Grace’s urine culture on the sixth day and we need to treat it ASAP along with getting another urine culture if there was any hope of still having the surgery.

I raced home to meet Grace and her nurse, collected the sample and headed off to the lab. Dropped off the sample and stopped by two pharmacies on the way home to pick up prescriptions we would need for our time away and the antibiotic she needed to start. In between numerous text messages with Joy and Grace’s nurse along with phone calls with Joy, the surgical clinic and the pediatrician’s office we seemed to be back on track.   Although peculiar questions were asked like has ‘Grace been to Wisconsin?’ and there appeared to be disbelief that she was content and her health status was normal.

The bacteria found is named Elizabethkingia Anophelis a bacteria string recently discovered where 69 people in three states have confirmed cases, 26 that have been fatal. According to the Center of Disease Control (CDC) most of the patients were over 65, had serious health conditions and it is has not been determined if the bacteria or the other health conditions were the cause of the deaths. Grace would be the first documented case in Iowa and we joke that she now is the dot in Iowa on a CDC map. We have to laugh as Grace continues to teach us new things.

This bacterium can be found in the earth and water worldwide and transmission is unknown. No need to worry there are no men in black suits outside or an ET bubble tent going up over our house. The bacteria could very well be living in many of us but without other health issues be inert and there is so little known about it that the infectious disease department at the hospital canceled the surgery as a precaution.

We have started Grace on an antibiotic that is the preferred treatment option and will be following up with two additional urine cultures on top of the one currently in process. Surgery has been rescheduled, nursing schedules are being adjusted to cover the some of days we planned to be away, life has shifted and we have regained the next week and a half that we essentially carved out from all existence. In my mind time stopped today and would not resume until for another week and a half, everything would halt.

The strangest thing that I had to do today was to go to daycare, still in disbelief myself and tell Graham that Grace was not going to have her surgery. Graham was painting and was not expecting me; he was expecting Grandma Choo Choo to pick him up and didn’t understand why I was there. I told him that I needed to talk to him and tell his 4-year-old brain that Grace was not going to have her surgery and we would not be going to the hospital. I felt like I was telling him someone died, perhaps because that was the mental state that I was in. He thought it would still be a good idea if he went to Grandma and Grandpas “for four days.” Turns out he really just wanted to convince Grandma to take him to ‘Old McDonalds’ on the way. Graham is always thinking, making lemonade out of lemons and he loves lemonade.

So far we know that the preliminary culture is negative of the second sample prior to starting antibiotics. Now we wait.

Kevin

EEG at NightA few weekends ago Netflix recommended that Grace watch “High School Musical”.

I was introduced to the movie when Grace was one. She was hospitalized for something like fifteen days as she began the ketogenic diet. The keto diet is a high fat diet that changes how things work in your brain because your body is getting its energy from fat.

It didn’t go well. It threw Grace’s body off. I was with her by myself for a lot of it because Kevin had started a new job. I watched the movie a zillion times it felt like. It was oddly comforting. The words to some songs really got me.

“This is not what I want, this is not what I planned and I just got to say I do not understand. Something is really not right. Something is really wrong and we’ve got to get things back where they belong”

“This is the start of something new”

And the ending song “We are all in this together.” I cried a few times listening to that one.

It wasn’t just the songs. The whole concept that you don’t have to be defined by any one thing is in there.

That movie takes me back to that time in a powerful way. My love for a little Grace, the desperation to do whatever we could, all the cuts on her feet to check blood sugars, my panic that this would be an option that would fail, the absolute wonder I felt when it turned out that if we added 1/16th of a teaspoon of Morton Lite Salt to the formula that she would be able to do it. That’s not much salt – but it had a huge impact. I remember how tired I was from fighting my own emotions. I spent so much time holding her on a hard plastic couch watching that movie where a happy ending was shared by all. It helped me keep going in some way.

We were back on the epilepsy unit this week with Grace. They’ve built a new unit since we’ve been there last. It’s beautiful. There are pictures of dancing all around. In our mind it is the place to be if you’ve got a tough kind of epilepsy. Things for Grace didn’t go as well as we’d hoped. Almost nine years after that keto diet visit I found myself again thinking…this is not what I want, this is not what I planned, and I just got to say I do not understand.

There is so much about Grace’s brain that is complicated. It’s easy to get caught up in that especially when things aren’t going the way that you want. It’s easy to feel like we are helpless and only able to guess at what may work because there are no answers.   Unlike the movie this won’t be quickly resolved, but we have a plan.

We won’t let her be defined by one thing. Kevin, I, her doctor, her nurse, her team at school, we are in this together. And there is a whole team of people who make sure there is music and dancing in her life. It’s not exactly a Disney movie, but it’s our story.

Joy

calendarTwo weeks ago I wrote an email to my boss telling her that our home health nurse was leaving and that the nursing agency had told us there’d be no one to care for Grace until at least July.  We were going to be on our own for at least two weeks.

“That’s the last thing you need Joy” came the reply.

She was the first person I’d told who hadn’t said something about how good things will come out of this.  In a way it felt like she was the first person who’d really heard what I said.

A home health nurse – a really good one anyways – is an amazing creature.  Capable of coming into your home, caring for your child, speaking for your child (in our case), doesn’t notice the dishes in the sink, and doesn’t mind that there is a little brother who needs attention too.  That nurse sees you when you are sick, knows when you are behind on laundry, and gently tells you that Grace needs more bibs or extra clothes at school.  That nurse sends you pictures now and then so you can see what Grace is up to.  That nurse never minds that you call to check in because something about Grace just wasn’t quite right the night before.  That nurse takes care of Grace with such a combination of gentleness, enthusiasm, caring, attentiveness, and love that you never question Grace is being cared for.

We are having to give that up.  There’s a loss there.

A new nurse is a new nurse.  There will be lots of things to figure out.  Someone else will need to learn all the ways a seizure can look in Grace.  Someone else will have to learn the differences in her vocalizations.  Someone else will have to learn to let her go so she can walk on her own.  Someone else will have to learn the cues Grace gives us when she’s not well.  Someone else will give her medicine, feed her, diaper her, and all that goes with that.

Selfishly there’s also a loss of vacation time that I’ve been mourning.  The only time I’ve taken off in quite awhile has been to take Grace to doctor’s appointments.  We go to Minnesota a lot for those appointments but I wouldn’t exactly call it fun or relaxing.  My hopes of a few days just to get away will have to be delayed.

And in one moment of grief I thought to myself that maybe this was the universe telling us that we can’t take care of her.

My mom and dad are coming in, saving the day in the amazing way that they do.  They have graciously worked it into their retirement (which is incredibly busy and sounds wonderful).  I hate to take them away from it.

We will make it.

A new nurse will learn.

It won’t be the same.

Graham is really struggling with the change.  He’s asked for the nurse each night.  He’s been very concerned that no one else would be able to find his favorite episode of the show “Super Why”.  He likes “the puppy one.”

The thing is the nurse knew that and before we’d be there she’d have the puppy one all ready to go on Netflix.

Such a thoughtful thing that made life easier.

Joy