Archives for posts with tag: nurse

IMG_2292National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan.   We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck.   They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other.   We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

Joy

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img_1506As I write this Grace is sleeping in the tent we use for traveling. We are in a hotel room in Minnesota in December. It turns out all the tricks in the world couldn’t keep Grace from having to have one more surgery in 2016.

We had this really normal weekend at home; birthday cake for Graham, Christmas program practice at church for Grace and Graham, Kevin and I at the Civic Center to see the Carole King Musical, the actual Christmas program at church, and seeing the Nutcracker at Hoyt Sherman, complete with an intermission visit from some of our very favorite dancers.

The second we got home from the Nutcracker it changed a bit. We had to get Graham packed to go home with my mom and dad for a few days because Grace was having surgery. I’m very thankful that Graham hasn’t had to be there the day of any of Grace’s surgeries this year. The rooms where you wait with her before and with her after are small. Waiting rooms are hushed. There is a multitude of instructions. I have a hard enough time with my own feelings- as we wash her with the special soap, get her in the gown, answer the questions, sign the forms, talk to the doctor, the anesthesiologist, the nurse, try to get her to be still enough for the blood pressure machine to work, it’s so much.

While we were doing all of that Graham was building a sled for his Curious George and playing outside in the snow. He was hanging out with his cousins.  He was experiencing five-year-old boy perfection.

We drove north yesterday morning. The roads had been plowed pretty well, the trees were beautiful all covered with snow, the sky bright blue. It was crazy cold when we started and just got colder as got closer to Minnesota. So cold that we drove straight through not giving Grace her customary breaks to stretch her legs along the way. Our girl hates cold. Hates it. We did everything in our power to get her somewhere warm quickly.

When we arrived we hadn’t even checked in yet when Grace’s doctor – all dressed in her surgery garb- greeted us. She greeted us so warmly and told us she wanted to get Grace going early so she could get us home. We’d talk with her two more times – once more before the surgery where we showed her the pictures of everything that’s been going on with Grace’s mitrofanoff and we talked through how Kevin and I would take care of Grace for the next 7-10 days as she healed. We saw her again when it was all done when she explained to us what she’d found and confirmed that we were right to not wait to get the mitrofanoff revised now. It wasn’t going to get any better without a surgical intervention.

Grace took her sweet time waking up. The first time she woke she complained a lot. We asked that she be given some more pain medication. With that on board she slept a bit longer, and the second time she woke up she was pretty good. A bit groggy, but she made an attempt to grab some tubing and play. We got her dressed. Got her some formula in her stomach. Got her in her wheelchair and got her to the hotel. She played for a bit. Then we snuggled. She played a bit longer and then we got her to bed.

We have pain meds to get her home. There are antibiotics we will give her for six more days. There’s a catheter in her that we pray she doesn’t pull out. When everything’s had time to heal (it could take about 10 days) Kevin and I have a special syringe that we’ll use to take the catheter out of her and we will go about our normal business.

So for anyone who’s counting – that’s 4 surgeries in 6 months for our girl. That is way too many.   I for one am hopeful for 2017 that brings: health and strength to our girl, less worry and more together time for our boy, and energy, inspiration, and courage for Kevin and I to take our family out in the world and enjoy it.

Joy

 

 

 

img_4046Today Grace had surgery to lift her eyelids. They’ve been drooping, the right more than the left. Her brain and the muscles in her eyelids just weren’t working together. We were supposed to have the surgery done this summer, but if you’ve been reading along you know that this summer didn’t exactly go the way we planned.

We’d noticed almost two years ago that her eyes seemed a little more closed. We’ve been watching it with her eye doctor since then. We’ve watched her lift her head up less and less when she walks because she can’t see as well with her head up. We’ve watched her with her eye-gaze communication system. There are areas of the board she doesn’t look at as much, probably because she couldn’t lift her eyelids. We went through pictures from over the past few years with her ophthalmic plastic surgeon (still can’t believe she has a plastic surgeon on her team) and the progression was clear. It was time to do something about it.

The surgery was pretty quick – all the pre-op and post-op was what took time.

When I talked to the surgeon when it was all over he warned me that she would look rough for a few days. He told me there would be swelling, possible black eyes, and bloody tears. The only thing we can do is give pain meds, try and put ice over her eyes (not Grace’s favorite by any stretch of the imagination), keep her from rubbing her eyes too much (also not Grace’s favorite), and carefully wipe the bloody tears away to keep everything clean.

As they were putting in the IV this morning to give her anesthesia Grace looked me right in the eye. I promised her this was it – the last surgery we have planned.

We need this to be it. We all do. Months have gone by with us barely noticing. Graham yelled at me tonight for leaving him again. We were gone for 25 hours – and he had an absolute blast without us. Once he got over being mad he told me all about it. He needs us to not leave him. Grace needs to be in school. We need to be at work. The world is only forgiving of absence to a point.

I get that in the grand scheme of things this has been a small window of time.  But this small window of time has beat us up a bit. Physically, emotionally, spiritually, we’ve taken some blows. How to recover isn’t quite as easy as ice and pain meds.

The nurse in pre-op today called Grace a tough cookie. I told her she had no idea how tough a cookie Grace is.  The nurse in post op commented on Grace’s shirt. The word “Awesome” is printed over and over. “That’s a big statement for someone who’s gone through as much as she has,” he said.

“She never quits,” I told him. “She just keeps going.”

In the coming weeks (and maybe months) we’ll do our best to find our family some rest and recovery, so we can keep up.

Grace’s face will remind me of the need for rest the next few days I’m sure. When I put her to bed tonight I noticed the beginnings of what looks to be a black eye and I wiped up the bloody tears as carefully as I could.

But when her face has healed – she will be able to look up.

Joy

 

 

IMG_9509We aren’t out of the woods yet – but we can see daylight.

Our visit to see the surgeon in Minnesota this past Thursday didn’t exactly go as we’d planned. The surgeon ended up being stuck in an operating room and not able to see us. Grace had a few x-rays and a test of her bladder while we were there. Two other doctors and a team of nurses all ended up weighing in on Grace’s care.

The good news is we can use the mitrofanoff. We are able to stick a catheter through a small hole in her belly button, have it travel through Grace’s appendix, into her bladder and pee comes out. It is wondrous. It will most definitely change our lives (Kevin’s, mine, Graham’s and Grace’s) and make it easier to care for her.

The not being out of the woods is a combination of a lot of air still in Grace’s abdomen, a slight urine reflux to her kidneys when her bladder is full, and a small pea sized polyp that has developed on her belly button. The surgeon called on Friday, apologized for missing us, and we hatched a plan for each of those things still lingering. We are adding a medication for five days to see if we can get rid of some of the excess air to make Grace more comfortable; this will give her bladder more time getting used to having to work again and then we will retest. Her kidneys are not at a significant risk – we can afford to wait. We will watch the polyp as there is a chance it will go away on its own. When we’d left on Thursday they said we’d see the surgeon in November. When she called me on Friday she said she’d arrange for us to see her in September.

We continue to watch for any distention, monitor Grace and note times she is uncomfortable, monitor her energy level, and watch for fevers. We are not out of the woods.

The surprise of the trip, which perhaps threw us more, was the instruction for us to cath Grace using the mitrofanoff for the next three weeks, every three hours…around the clock. They explained that in some ways its like a pierced ear and the body would try to close the hole; we have to remind it to stay open. We were sleep deprived from the past three weeks – what’s three weeks more right? We took it in stride I think when the nurse was in the room who gave us the news.   After she left we both just looked at each other and remarked that perhaps someone should have told us this part a long time ago. We thought we’d rest easier after having visited the surgeon, and it just wasn’t going to be the case. We have settled on cathing her at 11 pm, 2 am, and 5 am. Three days down, 18 more to go. Had we known in advance it wouldn’t have changed our mind on whether or not to do the surgery but we would have been prepared mentally that this would be a necessary step.

Grace overall has had good energy and continues to improve in her steadiness.

The ultimate test of her stamina will come on Monday when she starts 4th grade.   The first few weeks of school tend to really wear her out when she hasn’t had a small bowel blockage and major abdominal surgery the last month of summer vacation. We will be communicating a lot with her school team to be sure that we are all pushing her just the right amount. They too understand that we are not out of the woods yet. It will be strange to not be right with her as we have been most of the last month but we will let her go because we can see some daylight.

Joy

waiting for hayrackFall has been hectic – I’ve started several blog entries in the past few months. None of them have actually been developed fully. In an effort though to keep these pieces of our story in one place I’ve decided to upload some of what I’ve written this fall. It doesn’t flow from piece to piece – I’ve given you fair warning.

 

Dress up days

Today was mismatch day at school. It’s a really hard day for me, which I know sounds incredibly stupid, but there is very little that I can control about Grace. I try to always make sure that she looks put together, cared-for, loved. To purposely lay out a horrible outfit just kills me.

Yesterday was worse, the theme was to dress as what you want to be when you grow up. First off, I don’t even really like to think much about Grace grown up. When I do what I want for her is community, people who will appreciate her, love her. I want there to be music, dancing, painting, outside time, sensory activities, movement! Costuming that wish is difficult.

 

Smiling while being stared at

It’s been a little rough lately. It feels like everyone stares and not in a friendly way. At the pumpkin farm adults held their kids back from getting on the tractor ride before us, which is nice, but they seemed not happy about it. Graham not understanding that we were supposed to sit in the handicapped section of the wagon meant another family with a wiggly little one had to wait. A girl on the wagon who said she was 10, looked at Grace, looked at me, and said “special needs child?” “Yes” I responded, “Her name is Grace.” I wanted the label quickly replaced with a name.

The little boy in the row in front of us at church looked at Grace with what looked like fear. When Grace got too close (she wanted a bulletin) he backed away as far as he could in the confines of the rows.

“Stop looking at her like that!” I’ve wanted to yell. “Stop looking at us!

We are a family- we are doing this life too. I don’t stare at you, please stop staring at us!!

But instead I smile. If you are going to be stared at you might as well smile, and in as real a way as you can. If I can’t smile I put my head down.   It seems better to pretend you don’t see than to frown back.

 

Love means you wear drool on your shirt

I caught a glimpse of myself in the mirror – my ponytail was half pulled out, my shirt had a big drool strain, my eye make up was smudged, and I looked tired- a real mess. I’d walked around like this. Gone to get food downstairs before I’d hurried back to Grace. No one had even looked at me funny. Evidently a hospital is a safe place to walk around looking like a wreck. “Sheesh” I thought to myself – “I look the wreck people must imagine special needs parents are”. I try so hard to always seem like I’m pulled together. When I was a new special needs mom I look at those people and they gave me hope. But today, today I’d gotten Grace up, got her ready and the nurse and I had taken her to the hospital for an infusion. We’d waited almost 45 minutes to see a cancer doctor – because even though it’s not cancer we are dealing with we still have to follow protocol. A nurse tried and failed to insert an IV. We waited for the medication to come up. We got the IV in. We gave ibuprofen to make her comfortable. She had a shot of a different med in her leg. I made sure the infusion med was the right med and I had snuggled her in a chair, where she had drooled on my shoulder while she slept. I tried not to move so as not to disturb her. She slept through her blood pressure being taken – this was a huge thing because normally she hates it and the machine just squeezes her arm repeatedly. When she woke up and was settled with her nurse I went and got a sandwich. After I’d eaten I went to the bathroom to wash my hands and that is when I saw myself. I fixed my ponytail and make up as best I could after silently chewing myself out for looking that way. But then I told myself that I’d done what I needed to do to take care of Grace and that motherhood- any kind of motherhood- sometimes is so consuming that you don’t take time to see yourself. The drool I couldn’t do much about. I’d earned it I decided and I would not be ashamed. It meant my girl had been snuggled on me for an hour and a half. It meant I’d kept her comfortable. It is what it is and that day I was just wearing love on my shirt.

 

Epilepsy Awareness Month

Today I saw this on Facebook related to epilepsy awareness month – “You learn how long 30 seconds really is when you are watching your child have a seizure.”

It’s true. I hate having to watch Grace have a seizure. The sounds she makes. The way the seizures contort her body. I wish she wouldn’t hold her breath or put her hand in her mouth. I hate how quick they come on.

 

Dance

I was talking today with two people that I work with.   I don’t work with them everyday, they aren’t in the cube next to me, but they know me and always are checking in on our family. When I mentioned today that I was anxious about changes to Grace’s dance program they both jumped in without hesitation to talk about how the program could evolve and be funded. They’ve seen the pics of Grace. They know how much it means. I was so thankful today for their support, ideas, and quick passion that Grace and others have a place to dance.

Joy