I am so sorry for not updating sooner!
I had my J tube surgery on Thursday the 22nd of February. Things went well with the surgery, and I now have two holes with tubes coming out of them, one in my stomach and the other in my intestines. So...without further ado...meet Calamity the G tube and Jane the J tube! :)
I came out of J tube surgery sometime early Thursday evening and had the rest of the evening to recuperate (ha!) before being whisked away to radiology early Friday morning to get a Hickman placed in my chest. Lovely! Thankfully I got a sweet anesthesia team who very graciously “knocked me out” quickly and didn’t make me lay flat on the table before going under! I was in SO much pain from them butchering my gut the afternoon before and laying flat just was NOT an option! I’m very glad I expected a lot of pain despite the surgeon saying about not being very painful. I came to the conclusion that he has never had J tube surgery done on him before! ;) Yeah....it hurt (and still does)....like, a lot! Anyways, I got Henrietta the Hickman on Friday the 23rd of February. I actually didn’t have all that much pain/soreness from the Hickman placement. I told them it probably was kinda like the saying “when you have a headache hit your big toe with a hammer and your head won’t hurt anymore”....my gut hurt so bad my brain didn’t care about the Hickman! ;) Once the Hickman was in place, my nurse removed the 2 midlines they had placed while I didn’t have a central line. I was very grateful to only have IV lines coming from one source instead of a midline in each arm...that makes everything complicated! :) They had taken me off my Lovenox (blood thinner) the morning of my J tube surgery because they didn’t want me to bleed extra during the surgery nor did they want me bleeding into my abdomen afterwards.
Well, the morning after they removed the midlines, I noticed a very large knot (nearly baseball size) in my upper right arm where one of my midlines had been. I recognized it from the get go and showed it to my nurse. The nurse got in touch with the doctor and upon seeing it, she ordered an ultrasound. Yep, you may have guessed it by now...I had a clot. Thankfully it was only superficial and wasn’t a serious clot. I was then started back on my full dose of Lovenox to prevent that happening with my Hickman!
After 13 days in the hospital, I was finally discharged on Monday! I am still in quite a bit of pain at the J tube site. My 5 small incisions are healing very nicely. I ended up in the ER on Thursday because my J tube site had begun to bleed on Wednesday afternoon. We contacted the surgeon’s office to see what I should do or if it was something normal. They wanted me to go to the ER due to the bleeding, pain, and me being lightheaded when I was up. My hemoglobin was quite low in the hospital, so I think that made them a bit more concerned about it. SO, as I said, I went to the ER on Thursday. They did some blood tests and a CT scan. I had low potassium and the CT scan showed a hematoma right at the J tube stoma. They said the bleeding and pain are probably coming from the hematoma. Yesterday, I got yet another IV infusion of potassium. My potassium was low in the hospital and I was given 4 bags of IV potassium. When I was discharged from the hospital it was still low. Then the ER tested it on Thursday and it had dropped a little farther. So I got 3 more bags yesterday. I’m low on magnesium as well only they can’t really replenish it because I’m allergic to the solution they use. That’s MCAS life for ya!
I’m very grateful to be home from the hospital with a reliable feeding tube! I’m hoping soon this J tube will be healed and the pain will leave. At least I can get formula every day and I don’t have to starve for weeks waiting to get my tube put back in place!
Thank you so much for your prayers and support throughout this difficult journey!