Made of Gray

Summer Plans for Intestinal Surgery

Raising the Rare ChildHolly D. Gray4 Comments

I've been quiet since we made it home from Boston. We've tried desperately to fall back into a routine, but nothing is meshing. I feel like I'm floundering and running from place to place everyday. Hence the lack of sharing and indulging in social media. 

  • Stress number one... Caleigh's nanny had to resign due to injury when we returned home in April. Out of exhaustion, we started nursing services knowing that it would never be the same. The past few weeks with nursing have gone better than I expected, not great, but ok. Caleigh's nanny will be dearly missed. 
Summer Plans for Intestinal Surgery
  • Stress number two... Caleigh's medical team in Boston scheduled a conference call with Eric and I the week after we made it home. The decision for Caleigh to have surgery was made based on what they found during her upper and lower scopes, and the way that her intestines shut down when she had the flu. We agreed on scheduling the surgery this summer. 

The problem area in the photo above is a narrowing about 3mm in width. Everything that Caleigh digests has to squeeze through this opening to exit her colon. It's painful, full of inflammation and could potentially close off at anytime. 

Flash forward two weeks and we have June 10th as the admit date and June 13th as the scheduled surgery date. We will see the team in clinic on the 9th. Best case scenario we will be in Boston for a month. Two weeks inpatient and two weeks out. 

The plan is to do a fibroscan and ultrasounds on Caleigh's liver, labwork and possibly CTs while she is inpatient before the procedure. With her history of compartment syndrome and very near death after her last surgery they are being very proactive with her liver status, fluid and bloodwork. I'm not going to talk about the past, but you can read about her last surgery here if you want to. I didn't, but you can. Surgically they will open Caleigh's abdomen, remove scar adhesions, lay out the intestines, cut out any visible narrowings and preform scopes both upper and lower. This could be an 8-12 hour procedure and I've definitely dumbed down the details here. 

  • Stress number three... Besides setting up all the appointments, dates and procedures, We've been trying to tie a bow around everything here at home. The dog, the house, the pool, mail, therapy, bills, FMLA, appointments, work, insurance and current photo shoots. All of this while trying to enjoy life as a family before our world is flipped. 
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Please know that I'm venting below and feel free to skip ahead a paragraph.... 

Boston in the summer is outrageously expensive. I've called around for short term rentals in the Longwood/Brookline area and the cost is $6-8K for the month. I've had a women with corporate, short term housing laugh at me. I've looked at subletting a college kid's dirty futon, and it was still $6k for the whole required summer. Hotels are $200-300 a night and don't have a kitchen. I've even used the patient services of other local Boston hospitals with no luck. Family housing has us booked for three days out of the entire stay at $30 a day. While Caleigh is in the ICU and hospital we would like to stay close just in case something happens. Only one family member is allowed to stay bedside while in the ICU and we may be able to bend the rules for both parents to stay in the regular inpatient room. If all else fails we can stay in the hospital somehow. When Caleigh is out of the hospital we can stay further out in the suburbs with no issue. Still expensive, but better. It's tricky and I'm almost out of ideas. It's summer in Boston and it looks like everyone is bringing their child in for a procedure. I have a call in to hospitality homes and I'm waiting to hear back. This is where families offer a part of their home and they are generally close in the medical area. Hopefully I will have better luck with them. We are planning to drive up so that leaves our car to sleep in if we have to. I'm just kidding, sort of, but don't think it's not a viable option in my mind. We have to pay $10 a day to park at the hospital anyway. The whole housing situation seems asinine with the combo of amazing doctors, too many families and not enough space. Ending this vent on a positive note... we'll figure it out, something will come up and it will be amazing.

Why Boston? Because the doctors, surgeons and the entire CAIR team are amazing. The surgeons that will be doing Caleigh's surgery only work with kids who have short bowel syndrome. They are the best and it just so happens to be the number one children's hospital in the country. No doubt this will be hard on us being away from our home, family and friends and it will be difficult for everyone that supports us here locally. We know this going in, but it feels right in our gut. So all of the hassle, tears and exhaustion is worth it. 

  • Stress number four... Caleigh is having a very hard time with all of the changes. She had a cold virus last week that she took pretty hard. Any talk of surgery or Boston seems to set her off into a crying heaving fit. She has several melt downs each day. At this point, any side conversations with therapist, doctors or planning happens away from her ears. Add in that someone new is taking care of her and not knowing every little nuance right away and you have a nonverbal, eight year old that is scared, nervous and wants nothing to do with anything outside of Mom, Dad and Home. 

We've done a fairly good job with explaining a little bit about why we are going to Boston. We've talked about the surgery in a very basic way by mostly relating it to her leg and hip procedure she had in March. Caleigh seems to understand and talking about it this way helps calm her down when she's really upset. Since we're fresh coming off of our inpatient stay in April; I'm pretty sure Caleigh is resisting the hospital on a whole new personal level. As soon as we are admitted on June 10th, we plan on calling in ChildLife to see what they can help with. This will be the first surgery that Caleigh remembers and the first central line for TPN that she will remember having. This will be the most painful thing that she will experience and remember and I'm having a very hard time dealing with this point. My heart aches everyday. 

Eleven days and counting until we leave on our road trip and still so much to do. 


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