Our SBS Story

The Medical Move

It’s the easiest tough decision that you’ll ever make. Your heart and mind are in sinc and know exactly what needs to happen but the logistics can be all over the board.

We are 3-weeks into our second medical move.

The first Raleigh —> Boston.
Our first medical move was a different animal because it was a hospital to hospital transfer, meaning the actual logistics were out of our control. Insurance and medical facilities made the arrangements via private medical jet and the details for Camden were fully arranged- thank goodness. We had so many other things to plan for- how often and how would Eddie and I see each other? Who was coming to stay in Boston with me (my mom), where would we stay (in the hospital room until discharge and then a medical apartment= 6.5 months) BUT we didn’t have to buy and sell homes, move everything etc… until Eddie got a promotion (a blessing) and was transferred to GA for work- sold and bought/renovated our ‘forever’ home while Camden was still in Boston. FINALLY we settled in when we brought Camden home for the first time (at 10.5 months of age). We.were.home. ahhhh

UNTIL

We needed our local hospital and realized that they didn’t have the level of care to oversee Camden’s needs. 3+ medical emergencies/chances for our hospital to prove to us their expertise….most of the hospital stays were the result of something life-threatening and things ‘weren’t good.’ We knew it was time to move again. We fought too hard up in Boston to let everything fall apart. We knew it in our gut when we needed to move to Boston. We felt that same pit and we knew again in our guts that we needed desperately to move again to a town with a local hospital to support Camden’s needs.

So, up went the sign, sold went the house (the one that was meant to be our forever home) and two months later we are in and settled into our new home in our new town.

Today- Our first Boston trip is under our belt since the move. The Boston team- has said that our local hospital has been very good to work with. It was right. All around-right.

So is it unheard of to move for medical care? No. Is it drastic? Nope. If you can see an alternative to better care and find a way to make that happen- then all can be well. Sleep can be had and life can be so good.

If you love and trust your local hospital, consider yourself so fortunate-what a blessing. There are families that love the hospital that we just left- and I am so happy for them-that they have wonderful experiences there- I wish we did too.

If you don’t love your hospital, there may be options for you. You can work with it and fiercely advocate (which we tried) or if it’s a great concern, you can try to go somewhere new… We aren’t the only family who has done this- I know SEVERAL who have moved across the country for their own or their child’s needs.

Here are the factors that made our decision:

1. We didn’t ever have a ‘good’ feeling at our local hospital (morale, communication, bedside manner, cooperation, GI expertise)
2. Some other families shared their same concerns with us about the facility
3. They didn’t believe in the drug saving Camden’s liver
4. 3 solid inpatient experiences couldn’t get the job done (transfers were required for 2/3 stays)
5. We held a higher standard of care than what we were receiving
6. Camden’s hospital stays are often emergent and we are required for reasons that are life-threatening- so we don’t have time to drive to a hospital for better care- it isn’t safe
7. Camden’s condition is chronic- meaning he will always have it. There is no cure for short bowel syndrome and he will always need a highly specialized medical team
8. We read the reviews and we had first hand experience
9. We needed a place that cooperated with our core team and that was in close (enough) proximity to our support system- because we don’t have nursing support… we couldn’t do it without them
10. We considered non-emergent needs..like therapy
11. We relied heavily on organizations around us for support- employers/non-profit organizations
12. We ignored the banter of the peanut gallery
13. WE made a deliberate decision with whom we were going to trust Camden’s life
14. Above all, we trusted our gut

We’re lived in 4 States in 18 months- 2 of which were for medical reasons…for us, it’s been worth the ride❤️

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