Archives for posts with tag: Doctor

img_0955I hesitate to even write this. I hesitate to even begin. I’m not one to post on politics. I choose more often to focus on the less controversial topics that we deal with as a special needs family. My hesitation is also based on me finding myself trying really hard not to judge based on political views. I don’t want to be judged for mine.

But the truth is I am struggling. In large part, we write this blog to serve as a record of our journey with Grace. I forget. I move from one thing to the next and details get foggy.   At this time, I can’t ignore the weight of the outcomes of state and national elections on Grace or our family. It’s worth including here as part of the story.

If I boil it down to what I think might be the root of the struggle it’s the possibility that the affordable care act could be repealed and more specifically that insurance companies could again elect not to cover someone with a pre-existing condition.

When Grace was born we made all the calls and filled out all the paperwork to get her covered by my health insurance company. When Grace was 15 days old we got life insurance for her. She was diagnosed at around 5 months of age.

The life insurance agent has told us in the past we were smart to get the insurance when we did if we had waited until after she was diagnosed her policy would have been denied.

When she was diagnosed there was no such thing as the Affordable Care Act. That’s when pre-existing conditions became part of our vocabulary. We looked at changing insurance at one point but because of her diagnosis, Grace wouldn’t have been covered. Do you remember those stories about families who went bankrupt and were homeless because they were caring for the medical needs of someone they loved? Those stories have haunted me. The very first medication we gave Grace cost thousands of dollars.  A month’s supply of the medication was more than I paid for a brand new car.

Grace is expensive.   There is no getting around it. She’s also evolving, growing up. Her needs will change. It’s not just epilepsy we are dealing with. Sure that might be the first thing we say but she has more than 10 doctors. She receives physical therapy, occupational therapy, and speech therapy privately. Yes, she can get those things at school, but in reality what we get are consults from those professionals, not the intense work we are able to get through private therapy services.

Insurance makes it possible for her to have those therapies. Those therapies have helped her walk, made her stronger, addressed sensory defensiveness, allowed her to find a means of communication.

Insurance also means we can take her out of state to doctors who can care for her. Often, even living in the Des Moines area, Grace’s needs require a level of specialty not available here.

Insurance pays for the supplies she needs. Boxes of supplies show up at our home on a regular basis.

There’s also a wheelchair, braces, her talker, etc.

Yes, there’s Medicaid, but it has its limits. It’s also under fire.

Neither pays for many things she needs.  Neither pays for some of her meds. Many of the special needs adaptations that she needs or that add to her quality of life are incredibly pricey. We pay for them. We also pay for the trips out of state, for gas, hotels, food. It quickly adds up.

So my fear is that we would somehow lose insurance for her and have no means to get it back.

I wake up from dreams about losing our home because we had to care for her.

I wake up wondering what opportunities we would have to withhold from Graham because we are taking care of Grace.

I wake up feeling trapped in my job with no way of leaving because I have to care for Grace.

I also wake up knowing that there is no choice in the matter – we have to care for Grace. She’s ours. She has needs that we have to meet. However, we can. I feel the weight of that deeper somehow. It is a legitimate weight.

I have campaigned for Grace’s rights rather privately thus far. Advocating for her primarily in our church and her school. Believe it or not, that’s a lot. Plus advocating is just part of the special needs parent role. It’s separate from the paperwork, the appointments, the meetings, the actual hands-on care. The first time I advocated for her formally I was at a meeting where a county group was discussing cutting funds to her special needs daycare. The two parents before me had these incredibly powerful presentations with visual aids. I hadn’t thought about that at all. All I had was my planner. It had a huge pocket in the front and in that pocket I had a picture of Grace. When it was my turn I sat at the table, showed them my picture, apologized that I didn’t have a more polished presentation, and then told them our story. I told them about how no other daycare would take Grace. I told them how helpless it made us feel.

I feel a little of that helplessness now. Time has made me more polished I like to think. I can better describe how Grace is a whole person, worthy of what it takes to make her the best she can be. She has potential. She has character.   She is not less. She is not a liability. She is a person more the same than different.

And in reality, any of us is seconds away from being in a situation where we could be very sick or very injured and need significant help.

So I’m afraid. But life continues. I’m working on my next blog post where Graham tap dances by a singing rock…

Joy

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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_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

img_3898This week started out to be the first regularly scheduled week we’ve had in some time; Monday morning it quickly changed.  Shortly before taking Grace to her morning therapies and then school she was showing signs of discomfort and then had a tonic clonic seizure.  We gave her some diazepam (valium) to stop the seizure and called 911.  Her seizure stopped and when the paramedics arrive her oxygen level was low so they started on oxygen.  Grace was still pretty out of it and her temp was up, by the time we reached the hospital it reached 104.5.

In the ER they started checking for infection running blood and urine cultures.  She was started on an antibiotic proactively and the blood culture came back positive for MRSA.  MRSA is a staph infection that is difficult to treat, while it can be a skin infection Grace shows no signs.  MRSA is easily spread in hospitals, nursing homes, etc and considering how much time she has been inpatient these past two months she could have easily acquired it.  MRSA can live on your skin and you will be just fine but when it colonizes the infection occurs; in Grace’s case it could have come in through her central line port when the needle was inserted, but there is no way to verify.

There is a chance that Grace’s port may have to be removed if they infection does not resolve with the antibiotics.  Daily blood cultures are taken and if results are negative two days in a row she could go home and continue with two weeks on IV antibiotics.

We have been having extensive conversations with infectious disease, interventional radiology (who put in Grace’s port) and nursing supervisors as there has not been a clearly documented, communicated, or followed port protocol for Grace.  We have found that health organizations have different port protocols and there can be differences within one organization.  We continued to push for clarification so we know when to ask or question if we feel that the protocol is not being followed.  All parties are now in agreeance that Grace should follow the same hematology/oncology protocols used with other children at Blank and we should defer to hematology/oncology or the Blank Infusion Center for her port cares at any time we desire.  Grace again falls in her own category and without standards to base her treatment on we have to push the envelope to establish our own protocols.

Between the home and work needs, port issues, learning about MRSA and conversations around the potential removal of her port that was put in just two months ago we have been a bit overwhelmed.

Grace has been showing signs of more energy and is sitting up and playing on her own.  Based on past sicknesses this is a really good sign.  Now we just wait for the culture results.

Grimes/Johnston EMT staff were excellent and took great care of Grace and we got to meet one of our neighbors who is an EMT.

Kevin

UPDATE 9/29 11:10 – Blood cultures drawn on yesterday are negative!  It will continue to be cultured as will the draws from this morning; if they come back negative tomorrow Grace will likely be discharged Friday.

IMG_3615The four of us are together. We are working to enact Graham’s “when Gracie is home plan”. Tonight that means watching the Odd Squad movie as a family.

It feels like she’s home just in time. This morning on the way to school Graham told me that he didn’t want there to be any more switching and no more visiting Grace. Kevin and I are beyond tired and need to be able to sleep for a whole night. Whether we were with Grace at the hospital or with Graham at home both of us have had a hard time sleeping. The world is moving on and we have to hustle to get caught back up. The van needs to be serviced, the new parts to grow Grace’s wheelchair are in, her new braces and shoes have arrived, registration for dance is coming up, Graham is moving to the pre-K room at daycare and Grace is starting 4th grade. Plus we need to get back to work full-time.

Grace isn’t 100%. She is going to need extra help and extra encouragement to get back her strength and stamina. We need to take her back to Minnesota to see the surgeon who is anxious to “lay eyes on her”. Our pediatrician wants to see her the week after that. We’ll be watching her closely to make sure she maintains weight, gains strength, and shows no further signs of blockage. Plus we have to learn how to use the Mitrofanoff.

There are also still things to process from our experience the last few weeks. People to thank. This has been draining but we have to keep going.

One of the first things we did when we got home was take off all of our hospital bracelets. We have been wearing the bracelets for 14 days. It was a constant itchy plastic reminder and symbol that Grace was in the hospital. She even scratched her face with hers. Early on when Graham asked me what it was for I told him that it showed the hospital that I was Grace’s mommy. He asked me to take it off a few days after that so that I could be his mommy again too.     They are all off now. We belong to each other – no bracelet necessary.

Joy