Rough.
Oh what a week it’s been.. Thankful for my Lord and Savior who is always there for me in these challenging days.
A couple weeks ago, I started dealing with bad spasms in my small intestine and not being able to tolerate j-tube feeds—this is still going on today. The spasms cause my mic-key button to pop out partly over and over again. I haven’t been able to eat solid food without a lot of pain, so I’m currently on a soft food diet. Last week, I also started experiencing dizziness every single day and night…it was horrible and I just felt unwell. Whenever I had doctor appointments, my blood pressure was checked each time and the numbers kept getting lower (my lowest recording was 80/62 and I’m usually 113/80ish). No wonder I didn’t feel well!
Nothing was resolving, and last week, both my GI surgeon and GI specialist were out of town. My GI surgeon’s resident squeezed me in—he thought maybe the “balloon” on the j-tube had too much water in it, but there was only 1 ml in it. So he wasn’t sure what was going on.
This past Monday, the dizziness bothered me so much and I was dehydrated. Two nurses at both GI clinics said I should go to the ER to get IV fluids and labs done. Also, when I finally heard back from my GI dr., he wanted me to get an x-ray with contrast dye to check tube placement. So I spent 9 hours in the ER Monday evening. They gave me a whole liter of IV fluids and pain medication, and that helped a lot.
The ER docs consulted with the blue surgery resident team for the spasms/tube issue. After I had the x-ray, the surgery residents studied the images and came to the conclusion that the j-tube was in the right spot and had not migrated. They believe that the dizziness was from dehydration and not getting enough nutrition. Regarding the spasms issue, they think it’s from small intestinal dysmotility—not good news. But they’re leaving this up to my GI specialist to figure out. We were able to connect with him, and he is not entirely sure—it could be dysmotility or an ulcer near the feeding tube.. He’s starting me on an anti-spasmodic to see if that will help me tolerate solid food and tube feeds. He also mentioned I may need to once again switch formulas. I have a follow-up with him in 2 weeks. I’m also waiting to hear from my GI surgeon if I need to have my mic-key button changed to a different size to see if that could help resolve some of these issues.
Yesterday, I said goodbye to my pain dr. who is leaving OHSU to soon start working at UWMC in December. I wasn’t expecting to cry because I did enough of that when he broke the news back in September. Plus, this isn’t goodbye forever because I’ll be seeing him up there eventually. But he got teary! So me and my mom did, too. :'( He kissed me on the cheek and hugged me tight. We’ve been best buddies. :'(
Today, I slept until 3 pm! 17 whole hours. I’ve been so exhausted. Thankful that I don’t have any more appointments for the week.
Thank you for reading and praying,
kerissa
