Archives for posts with tag: blood pressure

img_0007Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear.   We like him – he’s been amazing to work with. It sounds like we’ve actually been lucky. Only the culture from the ER showed MRSA, the one from Tuesday showed plain old Staph, and from Wednesday on nothing showed up. We caught it early. The seizure on Monday morning that made her fingers start turning blue was a blessing in disguise.

The good news/bad news, depending on how you want to look at – is that the infectious disease doctor is the guy we call if this happens again. The chance is real it could happen again. Sigh.

I’ve been thinking a lot about the book The Velveteen Rabbit this week as we’ve gone through all of this. There’s this scene towards the end of the book where the stuffed rabbit is old and worn and another old and worn toy explains to the rabbit that this is what it means to be real. To be made real by love. He explains that to become real happens over a long time.

I have felt really old and worn out this week.   Incapable of keeping all my stuffing inside. I also recognize it’s because of love that I feel this way. I recounted almost every day of the last week to the nurses taking care of Grace in the hospital that she had a normal birth, that we didn’t know anything was different about her until she started having seizures at about 4 ½ months. That since then we’ve been taking care of her in whatever direction she’d gone. My love for her has had to grow and change as she’s evolved to incorporate advocacy, medical skills, disappointments, risk-taking, research, wonder, and this crazy optimism that comes with special needs parenting. It’s real. Our last few months have shown me over and over how real it is.

It’s not just the love for Grace that’s made me feel that way this week. Graham has struggled. I was the one to give him the news that Grace was back in the hospital. His little face was just so sad. He told me one night this week that he hoped to wake up with germs in the morning so that I could stay with him all day. Killer.

In the midst of all of this, we have had crazy real loving moments.  Grace was complaining one night I was at the hospital with her, I unzipped all the zippers on her bed and climbed in with her. She calmed down immediately – we stayed like that for a good 45 minutes – no one came in to poke her or take her blood pressure – and when I got out to get meds going she was better. I took Graham to VanDees for his last ice cream with eyes for the year. It was chilly that night, so we were the only people there. Three people waited to take our order.   Graham was super nervous to order on his own with all of them looking at him, and so he whispered his order in my ear. Graham whispering is an experience. He puts his mouth so close to your ear you can feel his lips moving on your ear. It’s hushed, fast, so hard to understand, and it tickles. I couldn’t help but grin as he gave me his order. Luckily I know his order. Chocolate and white ice cream (twist) with m&m’s and eyes. Every time.

In the story, once you are real the rabbit learns you can never go back. The same is true with parenting once you become a parent it’s just not the same.

Grace is free to go back to all activities. We are watching her for cues that she’s ready to re-engage. Ready for therapies, school, baseball, dance, church, etc. It’s not just her cues we are watching – we are also dealing with our own readiness to put her back in the world with such a dramatic demonstration of her vulnerability fresh in our minds. Today she’s played some and rested some so far.     She is moving in the right direction. When she’s ready we will let her go back – because we love her. We really do.

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