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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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Rough Patch, Part Three

Rough Patch, Part Three

If you haven’t read the rest of the story yet, start here.

We loaded our son into the car and left for the hospital. It was dark and rain was pouring down throughout the drive to the emergency department. Check-in went quickly. Our son was exhausted and still showing signs of difficulty breathing so it didn’t take very long to be seen. A chest x-ray was ordered immediately and we were settled in to wait for the results. No one seemed particularly concerned so we did our best to relax and wait. We expected to be given antibiotics and sent home.

The nurse came into our room and asked in an unusually timid manner if our son had been seen at one of the other hospitals downtown. We explained a consult we had at one point with an interventional cardiologist, but that we only went once and that doctor recommended against running any tests. I mentioned to her off-hand that we had also done several second opinions at Hopkins. “Why do you ask?” was the next obvious question. Micro expressions danced across her face, all showing signs of discomfort, and she pointedly avoided eye contact. We were to be transferred and they were deciding where. The doctor would be in shortly to answer any other questions. With that she ducked out, having not made any additional eye contact.

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Rough Patch, Part Two

Rough Patch, Part Two

If you didn’t catch the first part, read it first.

We were waiting for many months for a call from Kennedy Krieger’s Outpatient Feeding Program. It’s not something I had mentioned previously; I wasn’t sure how helpful it would be. When the call finally came we were so excited. There was, however, a massive “but.” Our son had begun struggling with a new medical issue, ITP (Idiopathic Thrombocytic Purpora), and we weren’t sure how well he would do in the outpatient program given the need for weekly blood draws and hematologist visits. After speaking with the program’s nurse we concluded that, while difficult, managing his care on an outpatient basis was possible. If we were already actively in the outpatient program and he needed to be transitioned to inpatient they would do their best to have us transitioned to inpatient as quickly as possible.

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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.

Happy Mother’s Day

It’s Mother’s Day! Happy Mother’s Day to all the mother’s out there. I hope you’re having an awesome day celebrating how important you are! Without women willing to take the risks and put in the time and energy to raise children, we wouldn’t have the friends and family with us we enjoy each and every day.

There are two categories of Mom that deserve a special mention. To Moms who aren’t off today because they have to work, their child has medical needs that never take a day off, or they’re just plain overwhelmed, I see you. I’m thankful for the work you put in each and every day. Your kids may not be old enough to thank you yet. They’ll get there. I hope your spouse, significant other, or another family member has a chance to give you the love and attention you deserve today. Even if they don’t, you’re still amazing and wonderful.

To the Moms with a child that’s earned their wings, they’re looking down on you today wishing you a Happy Mother’s Day from above. Grief is a perplexing thing. You may feel a hundred different ways today, more if the loss is recent. I’m wishing you a special Happy Mother’s Day. You’ve been through something no one can possibly understand without experiencing it themselves.

Enjoy yourselves! Eat all the food, get lots of presents, and don’t do an ounce of work more than absolutely necessary. HAPPY MOTHER’S DAY!

4 Spring-Inspired Stress Relievers for Caregivers

This is a sponsored post for Vive Health. I have been compensated for sharing it with you. All opinions remain my own and I was in no way influenced by the company.

Don’t worry, this post isn’t an ambiguous guide to caregiver stress relief with vague tips like “Try not to stress so much.” Caregivers know that fighting stress and anxiety is key to maintaining mental and physical health – so you can stay in tip-top shape to take care of your loved one. It’s easier said than done, however. Get inspired with these 4 real-world, practical ideas that can truly get your spring off to a bright and stress-free start:

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ObamaCare vs. Affordable Care Act

ObamaCare vs. Affordable Care Act

There has been a lot of discussion in the news lately about repealing and replacing Obamacare. The Affordable Care Act has also come up a lot in those discussions. Unfortunately, it’s not always clear during the discussions that these are the exact same law. It’s important to raise awareness of this issue, especially among people who don’t frequently follow politics or news “inside the beltway.” The main reason is the Affordable Care Act, hereafter referred to as ACA, is known for a lot of things people like while “Obamacare” tends to be associated with all the things people don’t.

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Before I Had My Son, I Wish I Had Known…

The biggest surprise for me after having my son was how much control other people wanted over decisions involving him. This came up quickly as he struggled with gaining enough weight from the day he came home from the hospital. Family members wanted to attend doctor’s appointments. Everyone seemed to have an opinion on how we could fix the problem. Some of them were insistent we created the problem ourselves by not following their “expert” advice. None of this was true of course. He was eventually diagnosed with Noonan’s Syndrome which is known to cause all sorts of growth difficulties and not just poor weight gain.

Looking back, if I had known going into it others would be so pushy and insistent to the point of blaming I would have more resistant about having outside involvement in our son’s health concerns. Though, I’m not sure that would have even helped long-term. After all, they probably would’ve tried to exert their influence in other ways if they hadn’t been using all of their energy they way they did. I recommend first-time parents set boundaries early and often. It’s your child. Don’t let anyone else tell you how to raise them.

What do you wish someone had told you before you began having children?

PTSD Symptoms and Support Organizations

After airing my podcast reading of a previous post about PTSD I was asked to gather and provide more information about PTSD symptoms and support organizations. I’ve thought long and hard about how best to cover this information. After all, people who are suffering from PTSD need professional help. Self-diagnosis isn’t reliable and it’s difficult to comprehensively describe any medical issue, much less a mental health issue, on a website with such a broad international audience. The approach I’ve decided upon is to aggregate the information as concisely as possible. I strongly advise anyone who believes they might have PTSD to seek the assistance of a therapist who has experience treating someone with PTSD.

If you are in need of immediate assistance call 911 or go to an emergency room. This post is for informational purposes only and is not a substitute for medical care.

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