Made of Gray

Taking Special Needs Families on a Journey

Summer Plans for Intestinal Surgery

Raising the Rare ChildHolly D. Gray2 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. 
 Processed with VSCO with p5 preset

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. 


CONNECT WITH ME!


Related Posts Plugin for WordPress, Blogger...

Texas Sweet Texas

Raising the Rare ChildHolly D. GrayComment

We're now home from our impromptu adventures at Boston Children's Hospital. Over the weekend Caleigh's intestines woke up properly and she was able to tolerate the 24 hour continuous feeds without major pain again. 

 Processed with VSCO with 3 preset

Behavior wise, she was very angry and screamed all weekend, but I completely understand. Honestly, I wanted to scream a little too. Being on lock down in maybe 300 square feet of space, for over a week, while having the flu wouldn't be anyone's idea of a good time. We tried to make the best of it though.

I ended up getting to an urgent care for steroids and cough medicine. Eric is back to normal and Caleigh has an occasional cough. Overall, we're feeling better. 

We have a serious need to sleep in our own beds, not be woken up every 2-4 hours and sleep in past 5:30am without the sun rising through the curtain-less windows. 

Over the next week we will try to get Caleigh back to her regular 18 hour a day feeds and follow-up with the CAIR team regarding the biopsies, future elective surgery and any changes that they want to make. We have a couple of non urgent options that Eric and I will want to think over once we are back to our routine and settled. 

Texas Sweet Texas via madeofgray.com

I know in my heart that we were in the right place for Caleigh to get the flu if it was going to happen. For the incubation period, the idea is that she had the flu either getting on the plane or got it while we were traveling that day. If we had been at our home hospital things would have been complicated with her not eating for over a week. They would have pushed IV nutrition a lot sooner. Boston was willing to wait and see. They know short gut and it made us feel more comfortable overall. The ER, IV teams, floor nurses, doctors, surgeons and staff were wonderful and they all kept saying "what are the chances" with a big joking smile. 

For me, I was so much calmer than I thought I would be. Six years is a long time to take care of someone without the support or interference of hospital red tape. It's crazy how long it has been. With PTSD, I've learned that returning to the same situation, building and familiar faces are all triggers for me. Anger, attitude and the general feeling of wanting lay down, curl up in a ball and sleep forever are all very real. Moving Caleigh's care to Boston has not only helped her grow stronger; the move has helped us as well. 


CONNECT WITH ME!


Related Posts Plugin for WordPress, Blogger...

Day 7 - Weekend Plans

Raising the Rare ChildHolly D. Gray1 Comment

Caleigh's pain has improved a lot since we stopped feeds last night. She transitioned from being on IV fluids overnight to full pedialyte through her g-button today. We're hoping to take things slower this time.

The weekend plan...

24 hours of pedialyte. Today.

24 hours of half strength formula. Saturday.

24 hours of full strength formula. Sunday. 

That would bring us to Monday morning. At that point we will see how she is doing. She will be on continuous feeds 24 hours a day and hopefully, once home, we'll be able to slowly get back to her 18 hour a day schedule. 

Day 7 - Weekend Plans via madeofgray.com

We are fortunate that Caleigh has had some nutrition on and off over the past week. We are nearing the end of the wait and see period though. Her guts need to do their thing or we're looking at a nutrition alternative that we haven't seen since 2010. I'm not even going to speak of it here. 

We were able to stay in family housing on Friday, after Eric did laundry, packed up and stored our luggage in their basement that morning. We are supposed to be out again on Sunday morning, but we'll see if something opens up. We can both stay in the hospital room if need be. We've still been taking turns sleeping at the house each night and it's good to leave the hospital noises and room behind. 

Tomorrow will be a week in the hospital and we're all feeling it in one way or another especially because we can't leave the room with Caleigh. She's cried, screamed and complained the majority of today. Not in pain, but in anger. In fact, she told me she was angry on her iPad. I fear that our progress with behaviors over the past six months has taken a big step back. Draining, but it is what it is. Hospitals are scary, intrusive and not the environment to raise a child. It's something we'll have to support, day to day, until we're home. 

A lot is riding on this weekend and the plans we have for progressing feeds. We are hoping with all of our tired hearts that this goes well. 

Related Posts Plugin for WordPress, Blogger...

Day 6 Setback

Raising the Rare ChildHolly D. GrayComment

Caleigh had a rough setback today. Talk of us going home quickly changed this morning. After a night of full strength formula at her regular rate she started having bad abdominal pain. This pain lasted all day. By this evening she was back on IV fluids and tiny amounts of pedialyte through her g-button.

Setback via madeofgray.com

Eric is feeling a lot better today. I'm still very sick, most likely with a sinus infection now. It's my body's go to thing over the past year. This makes number 9. I'm hoping to head to urgent care in the morning.

We are asking for your prayers and positive thoughts tonight. For Caleigh's pain to get better and her guts to wake up from one heck of an unlucky week. For Eric and I, because we need every ounce of strength we can find.

Related Posts Plugin for WordPress, Blogger...