Made of Gray

Taking Special Needs Families on a Journey

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. 

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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. 


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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. 

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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.

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The Family That Stays Together Gets The Flu Together

Raising the Rare ChildHolly D. GrayComment

By Monday evening we knew Caleigh had tested positive for Flu B. It was too late for her to get any preventive antiviral medications. IV fluids, gut rest, tylenol and sleep got her through the worst of it.

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I had woken up that morning with a little tickle in my throat and I knew what was coming. It's not fun to know you're about to get the flu and there's nothing you can do about it. By the end of the day I was worried about who would care for, sit with and advocate for Caleigh when Eric and I were down.

Monday was the Boston Marathon, but it was also Patriot's Day... a state holiday. Nothing was open and even the pharmacies near us closed at 8pm. We planned on hitting up an urgent care the next morning. Out of nowhere I remembered Eric telling me about an online doctor service that our insurance does a few months ago. So from the bathroom of Caleigh's hospital room, at 9pm, we were taking turns getting a prescription for Tamiflu from a very nice doctor on our laptop. 

I went back to the family house late that night because I was feeling worse. Eric stayed with Caleigh and the next morning I was first in line at the CVS down the street. An hour after I made it to Caleigh's room I was in full blown flu mode and I definitely had more symptoms than Caleigh did. Eric held down the fort while feeling not so great himself. He's awesome in my book. The hospital brought in infection control, asked us not to leave Caleigh's room and set up food we could order through the cafeteria to be delivered to the room. They've brought us everything we could need and have been very nice. Again, what are the dang chances? This is crazy. 

Caleigh is feeling much better today. Even sitting in her wheelchair for an hour. She's lost two pounds with the flu, but the team isn't too worried at this point. Yesterday afternoon they started her on Pedialyte and by the evening had moved her up to a half strength version of her formula. We just turned on full strength formula on a continuous, 70ml drip, and by this evening we will try her normal rate and volume to see how it goes. So far she is tolerating it. She could potentially be discharged tomorrow or Friday. 

Eric and I are doing a little bit better today. We've all had a shower, cleaned up the room and watched a Tinkerbell movie in the process. Eric is going back to the house later today (wearing a mask) to get things packed up and ready to go. We have to be out of family housing tomorrow morning so we're looking at hotels in the area depending on when we leave the hospital. The flights out for Friday and Saturday are pretty full, but I think we will get one ok if we end up leaving then. 

I'm glad we're on the mend and that there seems to be a clearing in the future. We're all wishing to be home in our own beds very very soon. 

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