Archives for posts with tag: pain

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

 

 

 

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We are home. We made it home last night. Dr. Monkeyology has returned to his spot in Grace’s room. He has once again upheld his responsibility of protecting her and serving as her comfort item during a tough time.

When my dad told Graham that we were headed home he insisted it was time for him to come home too. He did agree to wait until today though since it was a little late. He’s also been, in his own words “exhausted.”

Grace did a great job on the way home. We gave her a pretty big dose of pain meds and went for it. She played a little after we got home, not a lot. I’m encouraged by this but still a bit nervous.   I’m hoping a night in her own bed with no one interrupting her sleep will do her a world of good.

Our last two days in the hospital weren’t exactly smooth. First, we were running out of seizure meds. Grace needs to take name brand seizure meds. Generics can have a varying amount of medicine in them.   The hospital was not able to give name brand medications to her so we were using our home supply. We hadn’t planned on that and didn’t have enough with us to cover the length of a 10-day hospital stay. We actually only had enough to get her through her noon dose yesterday. It didn’t help that we’d been giving her extra meds because of the extra seizures going through what we had faster than we would have normally. I made calls to our pharmacy back here and we had a backup plan if we’d needed to stay. Since we were able to come home our neighbor Julie ended up making a trip to the pharmacy for us.   The meds were on the kitchen table when we got home and we didn’t miss a dose. (Thank you, Julie!)

Next, Grace’s blood pressure went up. Not a lot but it ran high. This was true except when she was sleeping and managed to stay asleep while they took it. The nurses were worried about it. The surgeon and his resident were a little worried about it. The hospitalist was a little worried about it but no one had a reason for it. She wasn’t complaining so I didn’t think it was the pain. It could just have been that she was tired of people messing with her. So, we are thinking that now that we are home we may just run her to her doctor here a few times over the next few days and have them check her blood pressure, just so we make sure we aren’t missing something.

Then there was pooping drama. I promise just to share the highlights! We ended up getting an x-ray to see how much poop was in Grace to make sure there was no blockage. Luckily there wasn’t a lot, so we felt comfortable bringing her home. When we were discussing the possibility of the x-ray the surgeon (not ours, the one covering for the weekend) said that he wouldn’t take the x-ray if it were his daughter because she’d need her ovaries some day and he wouldn’t want her to have the extra radiation.

I looked at him. I actually couldn’t believe he’d said that.

He quickly went on to say. “Your daughter will never use hers. Do you want the x-ray? I will do whatever you say.”   Yes, I told him. I wanted the x-ray.

We live four plus hours from Minnesota. No one in Des Moines could have done the surgery. Is something goes wrong now that we are home we are going to have to drive back to Minnesota. Many of the staff at the hospital, and the surgeon himself had commented to us during her stay that they see kids from a 5 state area with this procedure. Even though they talked about it, it is like they didn’t realize that it’s a really big deal to be that far away from the doctor who just rearranged your child’s insides and was sending you home with a kid still in pain, with holes and tubes in her that weren’t there before. I needed to know exactly what we were dealing with.

I stuffed the feelings I had about the “your daughter won’t use her ovaries” comment somewhere deep inside me because frankly you can’t deal with that stuff in the hospital. I’ll have to flesh that out now that we are home.

It took us forever to get Grace ready for bed last night. She came home with two catheters in her that we need to take care of for the next three weeks. At the end of the three weeks we will drive her to Minnesota and they both will come out. There is a lot to taking care of them that we haven’t done before. Kevin and I got it figured out. Our combined tired brains were able to get it done. I’m confident we will get better at is as we go. What choice do we have?

For those of you that pray, we need those tubes to stay right where they are for the next three weeks and we’d appreciate your prayers.

Starting as early as Sunday nurses started coming into the room at the end of their shift and saying “It has been a pleasure to know you, but I hope to never see you again.” They don’t want Grace to have to be in the hospital again. They don’t want her to have to undergo something this major again. Neither do I. But the reality is I don’t know what the future holds with Grace. We are making it up as we going along.  Following her lead.

Joy

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Amazing views of downtown Minneapolis.

Grace has been sleeping a lot. It turns out that her insides don’t like being moved around too much. We have had issues with both pooping and peeing. I never knew until I became a parent how important pooping and peeing really are. I feel like I could write a book about it sometimes!

Grace has been incredibly tough, hardly a complaint. She doesn’t want to play with toys though. They have offered her some really cool ones, and we’d brought one of her favorites from home. She will watch me play with them – but won’t actually do much to play with them on her own. That is a sure sign that she is not feeling very good.

The doctor is completely willing to let Kevin and I run the show. Evidently a lot of the orders end with “per parent’s direction.” She’s on some extra meds – antibiotics, pain meds, etc. Some of it will go away when we go home, some of which we will keep on board for awhile. We are a little anxious about her comfort on the four-hour drive home since she is tiring so easily.

We had some trouble with seizures early on which isn’t unusual due to the stress she’s been under, but still hard to watch. I called the epileptologist and we’ve made a slight adjustment in meds – just temporary- to try and get her some relief. The seizures pull on the incisions and that has to hurt. The extra med – plus I’m sure rest has helped the seizures calm down.

We have had Graham with us these two days. I was worried about how he would do, but he’s done pretty well. He checked out the sibling play area for a while and was able to hang out with some other kids. My friend Megan and her daughter came for a visit, Graham and she made tents out of the curtains in Grace’s room and sat together in a big rocker watching Disney Jr. and playing apps on phones. He’s enjoyed the pool at the hotel. Kevin has taken him out and about to see a few things around the city.

He takes very seriously the necessary hand washing and hand sanitizer necessary when someone is in the hospital. He has gently approached Grace and gets up on a chair to pat her leg and check on her. The doctor’s and nurses have been great with him. He is always recognized as a member of the team – but also they have asked him questions about what he likes. The walkway into the main part of the hospital is decorated with stars and you can use your hands to have them make music. He loves this – and all the other touches that let you know you are in a children’s hospital. With him, I’ve had the chance to get outside a little. We have sat together in the family area and read books.

He loves Minnesota. I’m not exactly sure how he defines it in his head – but he’s told me a few times in these last few days that he wishes we could be in Minnesota more.

He’s headed to my mom and dad’s today so he can just be a kid and we can give Grace our full attention as we prepare to bring her home. They think maybe we’ll be discharged Tuesday.   We are just going to take it one day at a time.

Thank you for checking in on us.

Joy