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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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Finding Resources

Having a child with medical or other special needs can be overwhelming and expensive. Not knowing where to find resources is a common reason children and parents don’t get the support they require. I wish I could transfer everything I’ve learned over the past few years to you. My book is a great resource, but even it doesn’t cover everything exhaustively. Trying to address every challenge all in one place would have made it so vast and unwieldy it would’ve been unreadable.

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Making Blood Draws Easier for Kids

Making Blood Draws Easier for Kids

No one likes having their blood drawn. Trying to explain to most children why someone absolutely must poke them with a needle isn’t realistic. It comes down to “no ouchies” which, frankly, is an argument I have a difficult time winning. With kids, you can’t exactly have a thorough discussion on the merits of whether or not these specific tests will provide adequate insight into their current medical problem.

I’m going to share what has worked for us. I hope it works for you. There’s no judgement if it doesn’t. Every kid is different! First, infants and toddlers under two. You really can’t do much for them except hold them down firmly with cuddles to minimize the stress and discomfort. Your focus will be more on the nurse. Ask yourself:

  1. Does the nurse have all of their supplies ready and accessible, while still having them outside of your child’s reach?
  2. Is the needle your nurse has pulled uncomplicated? It should look like a sewing needle, except it’ll be hollow.
  3. Are the test vials present? Sometimes nurses pull blood by syringe. That’s also fine as long as the syringe is ready to go.
  4. A second nurse will usually be present. While you hold your child down, the second nurse will either perform the blood draw or ensure the site they’re using stays completely still. I recommend highly to ask for a second nurse if there isn’t a plan for one to assist. It’s worth the wait.

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Packing for Vacation

Packing for Vacation

First, congratulations deciding you’re willing and able to take on a vacation. I personally find the idea of going to some other place foreign to our toddler and trying to stay there for more than just a few hours terrifying. Staying the night is quite an undertaking. We’re planning to do it for the first time this summer. Anyway, the whole process is scary enough without forgetting something so here’s some helpful information on how to pack for your adventure.

If you touch it on a normal day for your child it needs to go with you. Find a way to mark items with brightly colored tape or maybe placing them in a certain place. The last use of the day means the item gets packed up. This does make packing an all-day process, however, it makes you much less likely to forget things. When I pack myself I do it a few days before we leave. That way I don’t forget anything I need to be comfortable in the process of making sure my son has everything he needs to eat and stay healthy.

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Cleaning the Inside of Your Vehicle

Cleaning the Inside of Your Vehicle

It’s pretty common to see parents of kids who vomit frequently in the car armed with a bottle or canister of scent removal spray. After all, we spend so much time cleaning everything else it’s sometimes tough to justify spending a whole lot of time cleaning one of the places we spend the least amount of time. You spray the right product and the smell goes away. Everyone’s happy!

Every once in a while, it’s good to get in there and really clean up all of the things that didn’t quite get clean when you wiped them down with a rag right after the vomit episode. There are also ways to protect your vehicle and make it so most of the mess can be drug out of the car and banished with a hose. Let’s talk about those first because, frankly, preventing a tough mess in the first place is really the only way things are going to stay somewhat clean.

  1. Auto Seat Protector – This handy device will sit under the car seat and make sure any vomit which overflows from the car seat’s undercarriage won’t lie around and keep the seat underneath wet. Yes, some of them will claim to completely protect your car’s interior. For most children this is probably true. Our son overflows ours from time to time.
  2. Rubber Floor Mats – These are a must have for many, many situations. We have the heavy-duty grooved rubber mats which cover a wider area than your traditional cloth mats. We use them to pile soiled clothes, diapers, and rags until we can get home. This keeps the soiled cloth from seeping out into the vehicle’s upholstery.
  3. Car Seat with a Machine Washable Liner – Not all car seats have this feature. I consider it a must have since children make messes regardless of whether or not there are medical reasons involved. Our He machine does an excellent job of scrubbing our seat’s liner as long as it’s pressed down into the bottom so the water will cover it. You’ll need to wash after you’re in for the day. I’ve yet to find a car seat liner which permits machine drying.

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Car Rides with Vomiters

Car Rides with Vomiters

There are a lot of kids who vomit in the car and it’s mostly an annoyance. For our son with Noonan’s Syndrome every bit of food counts. He has difficulty gaining weight under normal circumstances and getting car sick makes it that much worse. If you find yourself thinking, “It’s not that big of a deal,” please remember it is a big deal for our son.

One of the first things we were told to do with our son to soothe him was to toss him in a car seat and drive him around. Our first pediatrician even recommended sleeping in a car seat as a way to lessen the discomfort of his reflux. We did try these things before writing them off but they weren’t helpful for us. The angle of the car seat seemed to guarantee our son would puke all over himself, in the car or out of it.

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Prior Authorization for Medications

Prior Authorization for Medications

If you’ve dealt with getting a prescription filled at a pharmacy you may have come across this term at some point. When something requires prior authorization it means the insurance company must approve coverage for it before it can be purchased. Many children with feeding tubes run into this for acid reflux medications but there are other types of medications which also have these sorts of restrictions.

The mechanics for prior authorization can be extremely confusing because policies between insurance companies differ significantly. One company may approve a brand without any objection while it might be nearly impossible to get approval for anything else. If you switched insurance companies you might well find that one brand which was preferred before is almost impossible to get approval for once companies change.

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4 Tips for Dealing with Case Management

4 Tips for Dealing with Case Management

This week the case for our son’s feeding supplies and his formula was approved by the insurance company. We changed companies the first of the year and I began working to get the case set up with the new insurance company prior to the swap. Approval came almost exactly three months to the day after beginning the process.

Why did it take three months? Many, as in more than four or five, well-intentioned people thought they knew how to take care of the case and it turns out they were wrong. How could so many people be wrong? Some were new and simply didn’t know the answer. Most had been at their job for a while but things had changed and no one bothered to inform them. Everyone I spoke to was trying their best to help.

If you’ve never gone through this process before it may come as a surprise. Three months is actually not that bad to get everything in place if you’re changing insurance companies. Having a child with medical needs which require case management approval makes changing insurance companies complicated. Now that we’ve gotten through the process I feel comfortable sharing some tips on managing insurance companies, case management companies, supply companies, and frankly any large organization.

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Transitioning Formulas

Transitioning Formulas

The process of transitioning from one formula to another should be done under the guidance of your child’s pediatrician.

There are many reasons you might change your child’s formula. Some of them aren’t medical at all. The price may simply go up on the one you’re using and you decide to switch to a less expensive brand. For the purpose of this discussion, I’m going to focus on the medical reasons. I’ve listed some common medical reasons below.

  1. Gas / Fussiness
  2. Mucousy stool
  3. Bloody stool
  4. Vomiting / Poor weight gain
  5. Constipation
  6. Diarrhea

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5 Tips for Transitioning Insurance Companies

This is never fun for anyone but it can be especially difficult for medically complex children. Instead of a doctor’s office or two, there’s a medical supply company, the pediatrician, and all of their specialists. Prior authorizations have to be submitted to the correct insurance, so you may need to update insurance information with doctors you haven’t even seen yet!

Tip #1 – Call the new insurance company. They won’t be able to tell you much until the insurance activates, however, you can request a case manager be assigned before the transition. This gives you an advocate on the inside that already knows your situation before the paperwork starts flowing.

Tip #2 – Call and update insurance info with all of the doctors who write a perscription for your child. That way if there are any issues at the pharmacy which require additional paperwork from the doctor’s office the responses get sent to the correct location.

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