I’m sorry I really can’t tell you details on the dental stuff yet, but I will soon Lord willing!
I was writing to inform you that I got my J tube placement checked yesterday and they said everything looked in place. However, by this morning I had relapsed with a vengeance. All they did was access my J tube and inject air to follow with an X-ray to make sure of placement and last night I felt feverish but didn’t have a fever. This morning it was 99.5 (I start getting miserable when it hits 99s - just how I am I guess) and rose to 102.4. I took IV tylenol which brought it down to 100.2. It has since risen back to 101.7. I would love for this to disappear again so I feel better, but would you instead pray that they will figure out WHY this is happening? This is NOT a normal J tube thing you just have to deal with sometimes! {{ATTENTION any J tube patients that might read this and have maybe had similar issues and maybe know what’s going on - I would love for you to comment and let me know! - feeling a little alone with this right now.}} I called the surgeon shortly after my tube check to see about getting an appointment because that’s what my GI was wanting if the tube check showed no abnormalities but they said I needed a new referral to get in since it’s been more than 90 days. I received a call back from the surgical nurse who sounded fairly concerned and she was going to talk with the team, see what they wanted to do, and call me back sometime beginning of this next week. When I went for my tube check I talked with the tech and said maybe this (the first episode) was just a weird coincidence.....I no longer think that at all! They are definitely tied somehow - we just don’t know how just yet. I really appreciate your prayers!
I’m just writing a quick note to let you know I heard from the dentist’s nurse at UNC Chapel Hill yesterday and they scheduled me for a virtual visit with the dentist to consult about getting me into the OR to take care of these teeth of mine. That appointment is scheduled for Friday at 10:00am. Please pray that this appointment will go well and they’ll be able to get me in really soon!
Yesterday was really rough with pain. It just gets overwhelming at times...my teeth, my G tube, my J tube... there’s not much I can really do to relieve the pain in my teeth when it comes however when trying to deal with the tube pain it gets complicated because a position that would help my J tube makes my G tube hurt worse and vise versa. So it’s kind of a thing of which tube is hurting the worst at the moment. Thankful for the Lord’s strength and your prayers!
Getting Through One Day at a Time...
Allison
Monday, August 24, 2020
Hello Friends!
First of all, I want to apologize for the time it has taken me to get back on here and give y’all a “proper” update. Life has been a whirlwind of sorts. I was trying to wait until I could give you more definite details and such, but unfortunately it will be several more days before I will get that and I didn’t think it would be right to make y’all wait any longer.
Soooooo.... continuing where I left off. My fever spiked at 101.1 about 2:30am Thursday, but after IV Tylenol, IV Benadryl, and cold IV fluids, it finally broke around 4:30am. My temperature never got above low grade the rest of Thursday and Friday. I was able to get my hickman stitch Thursday afternoon and all went well with that. My fever went away completely Saturday and hasn’t returned. However, the abdominal and J tube pain is still there. I tried to do formula yesterday at a super slow rate and did 8hrs. The feeding worsened the pain which was rather concerning to me because that is not a normal thing and especially at such a slow rate. The pain nearly reached the unbearable point at bedtime last night and the stoma is red and swollen. So I called my GI this morning to inform him of what happened and what is going on and ask if I should keep trying to push the rate up even though it is causing worsening pain or if he wanted to do some type of testing first. He said the tube looked good when they had checked it right after placing it, but with what has gone down since then, he wants to have it rechecked. If it has dislodged he wants them to try maneuvering it back how it’s supposed to be. If the tube placement looks good, I will have to see a surgeon for further evaluation of the stoma and possible surgery to move the tube. They had a rough time getting the tube out when they were exchanging it which could’ve caused significant damage to the actual stoma. I’m hoping for the easiest, best option which would be that the tube rebelled and dislodged, but only God knows what’s going on at this point. I have to go for yet another lovely covid test tomorrow so I can get my tube checked out on Friday at 1:00. My tube feeds have been halted until further notice, I suppose. Thankful for the 80ml of formula I managed to get yesterday — it’s better than none! ;)
I know I said I was going to update you on the earlier part of my week last week, but I don’t think much really happened, so I’m not sure what I planned to tell you! LOL I had a covid test and chiropractic appointment Monday and my home health nurse Tuesday....and then the tube tornado struck! :) I did have a phone appointment with my cardiologist right after my tube exchange Wednesday. It was just a check up and he wants me to get back with him once my nutrition levels out since at least most of my flare up of my heart issues are probably coming from the lack of nutrition.
That’s about all the info I have for you at this point. I have a covid test tomorrow at 12:45, my home health nurse comes Wednesday, chiropractor on Thursday at 5:10, and a J tube check at 1:00 on Friday.
Thank you for praying and for all the support I received on my last post.... it really encouraged me in a very discouraging time!
This isn’t an update I wanted to have to write, but I desperately
Waiting to go in to get my J tube exchanged. Love my Ezra...such a faithful friend!
need your prayers! I had my J tube replaced this morning and it was a rough exchange. The balloon shaft (part of the tube that expands to keep the tubein place) didn’t want to come loose, causing quite the excruciating pain. Once they got it out it wasn’t so bad. I expected to be a little sore because of it, but didn’t expect what has happened. A few hours after the exchange, I was hit (fairly suddenly) with a lot of severe pain and started feeling super crummy like I had a fever. Well, later this afternoon I began running a low grade fever that fluctuates but the peak point is slowly climbing. Please pray! I am miserable and in a LOT of pain plus a bit scared for what might be causing this. I’m hoping it’s a reaction to the trauma and not something more serious but we just don’t know right now. I really don’t want to go to the ER unless I’m dying because 1.) visitor restrictions (I must have a family member with me at all times) and 2.) the risk of being exposed to covid. This feels odd and different than any of the 5 or 6 times I’ve had blood infection/sepsis so that’s pretty much on the bottom of my list of possibilities. I will go ahead and reassure you I have NO symptoms of sickness or covid so that’s not even a possibility in my book. However, if I still have a fever tomorrow, they will 100% not allow me in the door at the hospital to get my hickman stitch no matter why I have the fever (understandably) which means I would have to postpone the stitch and get yet another pre-procedure covid test (4th for me). I REALLY don’t want to have to do that! I’ll fill you in on my week so far, Lord willing later but I can’t write any more right now.....just please, please pray!
...And I will dwell in the house of the LORD for ever.”
Wow, what comfort. As each day passes by, my thoughts get a little sweeter knowing that I’m one day closer to Heaven. One day closer to saying goodbye to this frail body stricken with chronic illness. No more limitations, no more pain.....a truly perfect life with Jesus - what could be sweeter? As things decline and frustrations grow, I’m comforted to know this is all temporary. This life is a hotel and I’m just staying in it awhile until Jesus takes me to my true Home!
I’ll give you the good news first...
I saw the spine specialist on Wednesday. He was very pleased with my progress and released me! I am SO close to having 100% movement in my neck. I only have a little catch when looking up but when it comes to turning my head side to side, I’m pretty much back to normal. He said if things do happen to return (which is possible) that I can go straight to PT and bypass seeing him unless things persist. So that was exciting! And it seems I’m very close to being done with chiropractic as well.
We have officially started the process of getting the conversions on Matilda (our new sprinter van) to make it wheelchair accessible! We put in the first deposit to order the wheelchair lift so once that is in, they will install that and make the other needed adjustments inside to make room for our power wheelchairs and also install the straps, etc to secure the wheelchairs during travel. Super, super excited to get this done soon!
I finished the IV antibiotic for the G tube infection and started the IV Protonix (Proton-Pump Inhibitor) that is supposed to hopefully heal the ulcering at the G tube. It has helped tremendously with my reflux, but my G tube pain continues to escalate which is a bit disappointing to me. I have a gut fear that it isn’t healing my tube, however...maybe I just need a little more patience...? I’ve been on it a little over a week and I was prescribed 3 months of the medication so it’s possible that maybe it takes a little more time. I plan to call Monday, let my GI know, and just ask if that’s to be expected or if I should be seeing more results by now. The encouraging thing is that I seem to be tolerating the medication well without any reactions!
The stitch that had been in my hickman since the day it was placed had gotten to where it was barely in the skin anymore and causing more harm than good. So my doctor gave the go ahead for my home health nurse to remove it as long as I was in agreement that another one be placed as soon as possible just because he feared the line may come out at some point. So I’m scheduled to get it replaced on Thursday. I have not been to this hospital location since this covid mess so please pray that I won’t have any issues getting in with a family member! And talking about covid....did you know that you now have to have a covid test 3-5 days prior to almost any medical procedure? I think my nose will be thoroughly worn out soon! LOL I go Monday to have yet another covid test so I can get this stitch. This will make my 3rd test within not very long! I had one so I could go to the GI about my G tube, one for my upcoming J tube exchange, and now another one to get my stitch replaced. Fun, fun! My nose is tough from having to go through multiple NJ tube placements for over a year...I think I’ll live! ;)
The bad news is I still don’t have a working J tube and I feel as though my body has started the all too familiar downward spiral of malnutrition. I’m absolutely exhausted, my heart starts racing with the slightest movement, feel like I’m going to pass out when I’m up, extremely achy, forgetfulness and frustration, loss of any appetite which is really not a good sign (usually a precursor to having difficulty getting my formula back to a good rate), etc. ... just all together feeling really crummy and like all I can do to push through another day. My heart (in a literal sense) feels SO tired that it could just quit at any moment. My doctor has continued the daily fluids until I can get my tube changed and get back up to an appropriate feeding rate. I’m scheduled to get my J tube changed on Wednesday. My tube came in last Tuesday, but they couldn’t get me in to get it swapped out until this Wednesday. That will make it officially 2 weeks and 5 days since I’ve had any real nourishment.
I have something almost every day this coming week...
Monday
Covid test (2:30pm)
Chiropractor (3:30pm)
Tuesday
HOME (hopefully....;))
Wednesday
J tube exchange (10:00am)
Thursday
Hickman stitch (1:00pm)
Friday
Chiropractor (1:30pm)
Thank you so very much for your continued prayers and support! I really mean that from the bottom of my heart!
So I figured I’d hop on here and update on this past week before the next starts!
I went to my dentist on Tuesday and he was able to get two more of my top front teeth built up and covered for a temporary fix until the more extensive work can be done under anesthesia. I was having HORRID random pain in the back top teeth that had become so bad that it was present the majority of the day and night. The dentist saw an obvious issue on the right side and took x-rays. Sure enough, he nailed it! The wisdom tooth on the right is a goner. I would say at least 98% of the tooth is decayed. He covered it to help with the outrageous amount of pain I was in but said it’s going to have to come out. They have referred me back to UNC Chapel Hill to go in again and have the extensive work done under anesthesia. My dentist waited until he could get the front teeth built up because he wanted to improve their appearance enough so hopefully they will see good potential in fixing them rather than removing those as well. He also built them up so that whatever is destroying the teeth would have synthetic stuff to eat away at before it can reach the real part of the tooth again. I’m still having the rough random pain on the left side but it’s so much better without ALL of it hurting so bad. Just please pray that we can work this out where I can get the big time work done SOON! They aren’t seeing regular everyday cases right now because of the covid stuff but they do make a way for those in pain with more emergent problems. And we won’t just have to make the case for my emergent situation but beyond that, we will have to cross the bridge of visitor restrictions because as I’ve said a bazillion times recently...I HAVE to have a family member with me no matter what!
I was able to start the strong IV antibiotic and the G tube infection is clearing up well. It’s hurting quite severely because of the ulcering and the retention balloon (on the inside) is trying really hard to migrate into the abdominal wall which is not a good thing. We’re hoping that the IV Protonix (proton-pump inhibitor) can be lined up where as soon as I finish the round of antibiotics, I can go ahead and try that. We are having some issues with the pharmacies and such... they can’t seem to decide who is supposed to fill it. The infusion pharmacy thinks it should be the regular pharmacy and the regular pharmacy says it’s supposed to go through the infusion pharmacy. So they’ve been putting their heads together to try to figure it out. You can pray they get that straightened out, I’ll tolerate it, and it’ll work to heal my stoma! The hope of saving this stoma rests on this medicine or a God sent miracle!
My J tube is being ornery now. It is older and has decided to start leaking. I got an order for the tube exchange from my GI but I haven’t been able to get in touch with radiology yet to see when they can order the tube and have it in. Until this gets replaced, my nutrition is nonexistent. I can’t run formula or do any of my meds that go through my J tube. I have it scheduled for Friday but I highly doubt it will get done then due to the fact that they don’t keep my type of tube in stock. My local mast cell doctor has changed my fluids back to daily in hopes of keeping me hydrated and out of the hospital. Usually this type of issue eventually lands me inpatient for malnutrition and we do NOT need to deal with that right now! We are doing our very best to get things done in a safe timeframe so I can remain outpatient. My glucose started to dip yesterday due to the lack of formula. Thankfully I have a few sweet things I can tolerate that will drain through my stomach drain. I suck on them so I can absorb the sugars in my mouth because otherwise nothing does me any good because it has to automatically drain from my stomach or else I get VERY sick. Now as long as I don’t start having the episodes where my glucose starts plummeting into the 40s like I’ve had in the past with formula issues. Let me tell you - that is NOT a comfy spot to be in! Thankfully, if sweet stuff (or Benadryl - depending on the cause) fails to bring my glucose up, I have emergency glucagon...that I hope never to have to use again.
I’m very thankful to still be home despite everything going on in my body. I’m thankful for doctors who are willing to treat me at home instead of insisting I be inpatient. I’m thankful for a family who is more than capable to take care of me and has taken time to learn about all of the crazy stuff that is life for us. I’m thankful for the Lord in Whom I can trust for every hurdle, every climb, every valley, every day - a Lord Who loves me unconditionally and carries me through each struggle I face. I’m thankful for the peace that passeth all understanding! And lastly, I want to thank all of you for rallying around the Throne of Grace to pray for me and uplifting me with your encouragement! I do not take it lightly!
