We recently went on our first family vacation. This was supposed to be the "meet the mouse" year but we decided to change course after Lockelan's hemophilia diagnosis. The initial learning curve was too steep. Instead, we chose to visit St. Louis. The city offered a lot but it wasn't too far away.
The process of planning and prepping for our week long excursion began weeks prior. While I’m typically an over-planner anyway, attempting to meet high medical needs and extreme allergies on the road is a marathon event. Given the circumstances, it would be necessary for me to bring and prepare every meal the Lockelan and I consumed, down to the last detail.
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| Thank goodness for stow and go so I had somewhere to put all the food. |
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| Not an inch to spare. |
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| He's probably right to look concerned. |
The drive was easy and our 2 bedroom/2 bathroom unit was perfect. Or at least it seemed that way until I realized that nothing was child proofed. In an attempt to prove my fears well founded, Lockelan immediately climbed in a dining chair and managed to knock it over, taking himself along for the ride. I don’t know how he didn’t get injured but I was thankful that the first question I asked at registration was the location of the nearest ER.
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| This can't possibly go bad. |
All three children shared a room. Elora and William couldn't have been more exited and I adored seeing them unpack and setup the room the way they wanted. While I’ll admit that I was thrilled to hear the two of them giggling under the covers with their flashlights amid whispered secrets; as time wore on, we ended up separating them until they were both asleep.
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| The kid's room. Yes, I move the gigantic "crush a toddler" television. |
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| Did I mention that was a whirlpool tub in the middle of the master bedroom? |
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| All I could think when I saw this coffee table was how I would end up in some ER explaining how my son got hurt by a sled in April. |
Even though it was very late before we finished unpacking, it was relaxing to finally be there. Our unit was large enough to accommodate our endless supply of stuff. While the children were a bit over excited, they eventually fell asleep. Matt and I tried to loosely plan the week which was an interesting task since we did not have Internet access. We also don't have smart phones like all the cool kids.
The first full day started off well. We decided to visit the Science Museum. Spirits were high as everyone got ready and ate breakfast.
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| It's amazing what we can do to a nice place in less than 12 hours. |
We were minutes from walking out the door when Lockelan tripped over his feet and smacked his head on the doorway to the bedroom. And here I was worried about the sled shaped coffee table…
The hit wasn't hard enough for me to consider an intracranial bleed. However, as soon as he stood up, I knew we were in trouble. The area began to swell immediately. Matt called the emergency answering service for his hemophilia treatment center while I began to setup for an infusion of factor. While our phlebotomy skills have increased, his veins were not cooperating. Matt and I took turns torturing Lockelan until we finally had to admit that we needed professional help. It wasn't the best moment for either of us.
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| We managed to squeeze lunch in on the balcony in between attempts. |
Much to my dismay, the policies at the closest ER for treating hemophilia patients was very unusual. All we needed was someone else to stick. However, they were going to require a CT scan followed by an ambulance ride to the nearest children’s hospital. He would then need a minimum of a four hour observation window. Despite our hematologists vast experience at one of the nation’s leading hemophilia treatment centers, they weren't budging. Thankfully our HTC is amazing and they were able to direct us to St. Louis Children's which was about an hour away. They even called ahead to escalate our case.
While our ER experience lasted nearly two hours, I can’t complain given the exceptional care we received. They were expecting us and followed the requests of our HTC. Obviously, his veins were bad for everyone because the pros blew one in each hand. We had to wait for the IV specialists. I pointed out a good vein on the side of his head and it was a first time hit. To my surprise, they used the factor I had already mixed. Anti-hemophilic factor is stored as a powder that is reconstituted to a liquid form using sterile water. Once it is mixed, the time frame for using it is limited. Then it must be discarded, which is hard to swallow when you understand the substantial cost of each dose. It’s common for hospitals to require you to mix a new dose. And in case you are curious, yes, it is a medication that we bring with us and is constantly kept wherever Lockelan goes.
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| IV in the head. It looks scary but I think head veins are much less traumatic for him. |
The rest was a breeze and they discharged us as quickly as possible. It was already 5:00 PM. The hour long drive home seemed like an eternity. And obviously, this meant any plans we had for the day were shot.
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| Loved the speed limit sign in the garage. |
The rest of the night was a blur. I was thrilled to hear that the older two had a blast around the resort. Matt took them to the playground and the arcade. He purchased plastic bats from the gift shop and they took turns trying to hit the ball.
It certainly wasn't the day we planned, nor was it the best way to kick off our vacation. But still, we did our best to give the kids a fun experience.
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| The kids enjoyed ring pops at their table. |
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| What am I going to do with that boy? |
