It’s been a little while. I hope everyone had a wonderful Thanksgiving! My family actually got to celebrate on Thanksgiving day unlike last year when I was in the hospital.
My J tube was indeed infected so I was started on yet another round of a strong IV antibiotic. The drainage cleared up on Thanksgiving day and hasn’t returned since. I’m supposed to finish the antibiotic tomorrow.
I lost my precious Labrador retriever, Lickerish Lucy on the 22nd. I’d had her since she was 3 months and it breaks my heart not to have her anymore, but I’m glad she’s no longer suffering. Thankfully, despite being allergic to her, I got to spend over an hour with her the day before she passed away and I’ll always treasure that special time.
I had my Christmas photoshoot done Friday (day after thanksgiving) and I’m so excited with how they turned out! Can’t wait to get my Christmas cards made!....that’s one of my favorite “tradition” that I’ve made!
Saturday I made the trek to chapel hill to get my pre procedure covid test for my oral surgery. After coming back home, we all headed out to go to the Festival Of Lights at Tanglewood park. We left the house around 6ish and we learned that it is NOT smart to go on the weekend in the evening... we waited and waited and waited some more before finally getting to see the lights and didn’t get back home until 4:30am! We were absolutely exhausted but had fun anyways!
We had Sunday afternoon/evening to get everything packed and loaded for UNC Chapel Hill. We (Me, Mom, Dad, and a sister) left this morning around 10 and are now comfortably settled in our hotel/home away from home for the next 2 days. I had my pre care (anesthesiology) appointment this afternoon and all is a go for tomorrow. I’m supposed to arrive at 10:30am to get registered and it’ll probably be somewhere around noon when they get started and who knows how long it’ll take. Lots of work to be done! I’m very prepared though....comfy pjs and slippers are packed in my hospital bag so I can change into those to leave the hospital, head back to the hotel, and hit the sack. Hopefully nothing happens to require me to stay in the hospital! This will most likely be by far the most traumatic oral surgery I’ve had so far seeing as how there are a lot more teeth going to have to be removed whereas before I think the most I had pulled at once was 2. Fun, fun! Looking forward to getting out of pain...even if it means going through a lot more pain to achieve that. Prayers are much appreciated!
I have an appointment to get my yucky (most likely mildewed) J tube exchanged on the 8th of December and another pre procedure covid test on the 5th.
Well, I’m off to finish this movie and get in bed. Have an early morning for a shower and to get out of the hotel in time! Thank y’all so much for your continued prayers and encouragement!
“Every mountain top is within reach if you just keep climbing.” – Barry Finlay
Hi Friends!
Let me start off by apologizing for the greatly delayed update. Frankly, it has been really difficult to gather my thoughts much less write them. On top of that, I feared I wouldn’t reflect a very positive attitude as I had been greatly struggling in that department. However, it is time for an update and that is that.
I want to start off with some encouraging news... I officially have an appointment to get my teeth done under general anesthesia! I go in on Saturday, November 28th for a covid test, have my pre op on the 30th, and the procedure on the 1st of December! Sadly, its looking like I will lose at least a couple of my top front teeth if not all 6 plus multiple others. The dentist said with my teeth beginning to break off again despite them being built up there is not much hope of saving them. Like she said, you have to have a good anchor of tooth in order to do crowns or anything of the sort and I have very little that isn’t synthetic. She’s even questioning how strong the roots and jaw bone are at this point. It’s crazy to think of having partials/dentures at 26 years old but that’s just how life rolls I guess. Right now it’s so painful I really don’t care what they do - just so long as they fix it!
I’m at a standstill with my tube issues. My J tube continues to lie dormant and hurt. However, the pain has decreased some since discharge mainly because I can now take my regular and rescue mast cell medicine that the hospitalist was withholding from me while I was inpatient. It is proven that mast cells cause increased pain and I know from past experience that there are many times that has happened to me. And we told the hospitalist that, but she refused to give me Benadryl and instead chose to give me narcotics and then put me down in the record, making it look like I wanted the pain meds. I’ve lost count of how many times I’ve just wanted to yank this tube out but I know that certainly wouldn’t be a good idea especially right now! My G tube continues to give me issues and is showing signs of breakdown of the stoma (hole for tube) but thankfully the infection seems to have cleared after an extended round of IV antibiotic. I’m still having the pain, periodic bleeding, and discharge of what appears to be pieces of flesh out of the stoma. I saw my GI on the 11th about it and his latest decision was to have me not put any dressing underneath the bumper and leave my tube super loose to try to get it to heal. He also doubled one of my stomach medicines that helps heal ulcers. My J tube appears to be growing fungus inside the tube itself so my GI put in an order to get it changed. For now the plan for my J tube is still just waiting in hopes it will heal. I still can’t get my formula rate up even through my NJ tube. I’m doing concentrated formula now instead of diluting it. That way I maximize the amount of nutrition I can get out of the small amount of formula I can do. My GI is slightly perturbed at surgery for being so hard to get along with (saying they’ll NEVER put another J tube in if this one is removed) and he informed me of a physical reason for my J tube pain....I have chronic inflammation around my J tube and he also mentioned the fistulas as if they could very likely be causing pain....duh!! It’s looking to me like a certain hospitalist ignored obvious physical issues that could easily be causing this pain and decided just to put all the blame on me, saying I was lying. Anyhow, enough about that...Yesterday morning when I went to change my J tube dressing I noticed a little bit of the bright green drainage again (like I had with the 2 previous J tube infections) so I notified my infectious disease doctor. I got a call this morning asking me to come into the office for a nurse visit. So I went and they did a swab for a culture of my J tube to see if there’s presence of infection again. The swab itself made my J tube MAD - super painful! Thankfully it is calming back down to status quo after IV Tylenol!
I’ve been doing anything and everything I can to keep myself busy and distract myself from the constant pain....getting out of the house as often as I possibly can, crocheting, practicing with Ezra in safe(ish) stores, decorating the house for fall/Thanksgiving, etc. I went ahead and decorated the front of the house for Christmas since I’ll be dealing with the dental procedure around the time I normally would decorate. I plan to decorate the inside for Christmas either Thanksgiving night or the day after. I’m just trying to focus an anything other than my current predicament. ;)
On the 8th, our whole family went to the Asheville farmers market for some apples and veggies. We met my brother, SIL, and my two youngest nieces there for a packed/picnic lunch at/in our van and then had some family fun just perusing through the different vendors. It was sad to see just how empty it was this year. It was the emptiest I have ever seen it even in December! We still enjoyed ourselves and despite being absolutely drained of energy and my pain escalating, it was very good therapy for me!
Life is discouraging and frustrating and I could really use your prayers and encouragement right now. My body and soul are very weary and it’s just been difficult to push through each day without completely giving up. I’m very grateful for the Lord’s strength because I would definitely not get through this without Him!
