Tulla's first button change!

I swear that yesterday was Tuesday, I blinked, and it's Saturday night. Last weekend, we caught up on the camp laundry on Saturday, celebrated my wonderful husband's and sweet grandma's birthdays on Sunday, and planned on leaving Monday once my hubby finished work. I teased late last week about updating you on Tulla's first G-tube button change, so I wanted to get it written before the end of the week! I am not a fan of needles or anything that goes under the skin. It freaks me out, so I was nervous.

For her first change, we had to drive over three hours from home. I don't know how familiar you are with the Ronald McDonald House charity. I used to brush past the "Do you want to round up?" questions at check-outs and didn't think much about them. Not that I don't support them, but I never made that the time I contributed to them.

I have a whole new appreciation for Ronald McDonald House. Did you know that they often have a fridge on the inpatient floor of the children's wing, where they provide free meals for families? They also have houses where families can stay and utilize their resources without cost. They provide toiletries, rooms with bathrooms and showers, meals, activities, and passes to nearby attractions for families to borrow when they're staying near their child in the hospital.

When I stay with Tulla in the hospital, my meals aren't covered. If I need to leave the day before because of her appointment time and travel distance, that all comes out of my pocket. Having access to their house has saved our family so much money and provided comforts I would have had to go without otherwise.

With the long drive and early morning appointment, we planned to take the whole family and leave the day before, and stay at the Ronald McDonald House. After her appointment, we planned to spend the day at the nearby zoo before going home. It was going to be a fun family trip... But nothing ever seems to go as planned with my family.

We started excited! I had a list of things to do and pack before my better half finished work. Then he called on his break and told me he would be working late. Well, leaving later wasn't ideal, but it didn't mean the whole plan had to change. Then we looked at the weather - storms and possible tornadoes. I started to feel like we might have to change our plans. That didn't exactly sound like weather for a fun summer zoo trip. When I got the message he wouldn't be finished until after dinner, I realized we wouldn't make it before check-in time, and the zoo would have to be postponed.

So I called to let them know we wouldn't have as many people as I had originally put in the request. They told me they didn't have any record of my room request and that they didn't have any rooms available at that time. Apparently, my reservation never went through! So, we wouldn't be going to the zoo. We didn't have a room. And we had an early morning appointment. It was starting to feel a little cursed.

I started thinking I would have to get a hotel, and we would have to divide and conquer with the boys staying home. This was becoming another girls' trip. The sweet lady put me on a wait list and said I would get a call between 2-3 pm if a room became available. I had planned on leaving right around the same time.

It was grandmas to the rescue. My mother-in-law came to watch the boys until their dad finished work. My mom was able to rearrange her schedule so she could come with and I could manage Tulla's feeds while she drove. We didn't have a place to stay lined up, but we were going to figure it out. I changed gears and packed up just Tulla and me instead of the whole family, and I tried to pick up a bit before I left. It was a bit of a mad dash, and I was tempted to cancel the whole appointment. Anything for Tulla, though.

Before I knew it, it was after 2, and I was getting a phone call. A room had become available! Praise the Lord! Something went right, and maybe our luck was changing. It wasn't the family trip we had hoped for, but maybe it wasn't cursed as I had felt before. Somehow, we made it before dinner and without incident.

We went to Tulla's appointment the next morning. We talked with the dietician, and I questioned adding more practice with solids for her. I realized I should have added an appointment with speech therapy too while we were there, since the dietician basically defers to the aerodigestive team. They also made notes about starting speech therapy and maybe changing her reflux medication. Overall, she's growing well. We want to continue that trajectory and keep her moving with the curve.

I finally got some real instruction on her G-tube care. The nurse answered all of my questions and went through everything step-by-step as she showed me how to change the button. I wasn't sure how I would do with that part. The actual part where they pull it out and put in the new one was the most uncomfortable part to watch. It doesn't hurt Tulla at all, but seeing the hole in her belly made me want to look away.

I didn't, though! I watched the whole thing, so that next time, when I do it myself, I know exactly what to do (in theory at least). There wasn't a lot to it. The journey getting out there was much crazier than the actual appointment itself. I'm so grateful for the ability to be flexible and the family who make it possible for us to get Tulla the care she needs. Next time, I'll make sure we're on the list before the day of the trip! I have a feeling we'll be doing more with speech therapies and feeding plans next.