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Rough Patch, Part Four

Rough Patch, Part Four

Start here to read from the beginning.

We settled in to KKI but the vomiting didn’t stop. Our son stopped being able to keep anything down at all, even water. The nurses were insistent that he was keeping some down, but they weren’t with him all day. I was adamant they needed to do something but wasn’t sure what exactly that something would be. After the weekend the senior doctor returned and checked on us early in her rounds. She told us he looked OK but she was going to draw labs just in case. Once she received the results that would inform whatever our next steps would be. I settled down with my son for a nap and did my best to keep him comfortable while they worked out a plan.

Within an hour a skittish looking nurse came and woke me up. When I say skittish, her face was completely calm. Her eyes looked terrified. She told me we were being transported. “OK… can I take care of this when my son wakes up?”
“No,” she said. “They’ll be here any minute.”
“Oh… OK,” and I started packing things as quickly as I could. The nurse reassured me that they’d figure something out as far as the items we had to leave behind. I barely got everything shoved into a bag before our son was being woken and loaded up onto the stretcher for transport. Apparently his labs had shown a significant amount of dehydration, even though he didn’t appear dehydrated when examined.

They settled us back into a hospital room after transport and ran more tests. He had bruised during the upper endoscopy and his system was blocked. He needed to be on gut rest which meant IV nutrition. We spent another week in the hospital with a PICC line and TPN, his g-tube set up to drain. It was a huge blessing that the bruising healed quickly, it only took the planned week and not any longer, and we were able to once again plan for beginning our son’s feeding therapy. At this point there had to be a serious discussion about whether or not we could even still do feeding therapy for our son. The planned start of therapy had been delayed by over a month at this point. I wasn’t getting any less pregnant and I was concerned the stress of being in the hospital with my son this long was going to cause health issues for the baby and me.

We discussed the issues with the point of contact for KKI at the hospital. I explained to them if they could get me near enough to a bathroom I could make it without risking an accident then I should be able to manage (the first rooming arrangement we had was a long walk from the bathroom). The nurses would be able to help with my son who did need carried a lot and rehabilitated from his two weeks in the ICU. Knowing the situation, the therapists could come and get my son from the room. This would significantly reduce the amount of lifting and pushing I needed to do. My husband would plan to come up on weekends and stay, leaving me to rest on the weekends in my own bed at home. We agreed to take him back to feeding therapy and continue with his rehabilitation in patient at KKI.

Finally, after everything that happened in the hospital, we were able to settle in at KKI and make some real progress. It was intense but manageable. I had other parents to talk to and most of them were supportive. All-in-all it would’ve been preferable to have done the feeding therapy outpatient, it just wasn’t practical for us. There were additional things we needed to have I’m not mentioning here. Getting them done would’ve been impossible with the intensive feeding program’s all day every weekday schedule. Being inpatient allowed them to be done in the morning, evening, or even sometimes overnight when they wouldn’t interfere with our son’s ability to sleep. We didn’t take advantage of them because of our situation, but there are many resources to help families who are coming in from out of town including the Ronald McDonald House. KKI has a list of resources they can share with you if you’re considering treatment with them.

So, that’s where I’ve been and why I haven’t been writing. After we finished our treatment at KKI the baby was due within a month. It took everything I had to keep up with our son and not overwork myself. I’m just now getting back on my feet. Our son is doing well. I’ll keep working on writing about all the major things that happened while I was away. I look forward to sharing more with you. I’m so excited to be back!

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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

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Deadline Changes for the Affordable Care Act

Deadline Changes for the Affordable Care Act

If you’re considering signing up for the Affordable Care Act (ACA) this year there are some important policy changes that have not been widely announced. The changes with the highest impact on the average family are unexpected deadline changes. Open enrollment for 2018 begins on Nov 1, 2017, and ends Dec 15, 2017. This only leaves a window of a month and a half to sign up for ACA coverage.

Tips to get started with obtaining coverage are available through Healthcare.gov. In previous years a public campaign has been launched through many avenues providing information to people who need it most. Do not expect the same outreach this year. The responsibility of knowing the deadlines and getting your application done in the brief window of time provided will be entirely your responsibility. More policy changes which make it difficult to sign up for the ACA may surface as the sign-up period comes closer thanks to the current administration’s dislike for the law.

Please, if you know someone who needs to sign up this year make sure they know about the deadline change. Outreach this year will be minimal compared to the information that’s been provided in previous years. The shorter deadline and lack of information provided will have a very real negative impact on the ability of people who desperately need coverage to sign up.

Dealing with, What if?

This is a fairly typical problem, but takes on a whole different form when applied to the health difficulties of a loved one. When it’s your child, it can be completely overwhelming to think about all the different possible scenarios that could happen. Every procedure has risks. Every time your child goes into the doctor’s office they could get sick (and for many special needs kids, that’s no minor thing).

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