Philippians 4:7
"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."
Hi Friends!
I had quite a big disappointment last week. I had been counting down the days and hours until I would hopefully get my tube fixed for good with the super long tube my surgeon was planning to put in. Wednesday morning (1/24), when I showed up to my pre op appointment for my feeding tube procedure, I was informed that both my pre op and procedure in the OR had unbeknownst to me been canceled the Sunday before (1/21) but they didn't know why. All they found out at the pre op office was that it was canceled by my surgeon, but he was in surgery, so they couldn't find out any information. We did some calling around to finally find out that my surgeon had canceled it because he couldn't find a longer tube to put in, and he turned me back over to my GI for a J tube. This was shattering to say the least. I would've appreciated it if someone would've at least had the decency to call me and explain the situation. I kinda felt like someone had just snuck up on me and shoved me off a bridge. I think I felt every negative emotion in the book at that point. I just wish the option of a longer tube was never brought up because it just makes getting a surgical J tube a lot harder. After my surgeon drills all this absolutely horrific stuff into me about what can happen with the J tube, I'm going to have to get one. I've been wanting a new GI for a while now but no one could ever get me into one for some reason or another. So my sister called my nutritionist about the situation and she has given us a name of an office that has worked well for them. I now have an appointment on Wednesday morning at 10:30 with a new GI. I'm actually already pleased with him.....my PCP sent him the referral and my other GI's notes for a second opinion one afternoon and by the next morning, he had seen my notes and called my PCP to let them know that he would agree with my GI about the J tube being the next step so I didn't have to come if I was only coming for his opinion, but I was still welcome to come. WOW! My current GI would've never done that. She still hasn't informed me that my OR procedure for tomorrow is canceled! I said if I just had money to throw away for gas I'd show up in the morning like I didn't know! LOL! Yeah, I know...rotten of me! ;) My nutritionist gave her opinion that I should go ahead with a J tube, and she shared her experience with J tube patients and that the biggest issue that the majority have had is the tube clogging, but as long as I keep it flushed, it should be fine. This calmed my nerves a bit. She also said that my surgeon would've never found that longer tube because the farther down in the intestines you go, the less absorption you have. SO, I've been waiting for a month on a procedure that would never happen. This was a huge let down, but I know the Lord has a reason, and I've just gotta trust Him. I'm hoping this new GI is as good as he seems and we can quickly get the ball rolling to get J tube surgery done. At least I have exhausted all other resources, so if something happens to cause complications, I won't regret not trying such and such before going for the J tube.
As for my current situation... my GJ tube has been out of place since the 19th or 20th which means no formula since then. I'm continuously hooked to a drain bag to drain my stomach so the water and kefir ("drinkable yogurt") I'm drinking, and the organic hard candy that I am eating, are all draining right back out of my stomach, doing my body no good. My potassium had dropped in my labs on Tuesday so I got 2 bags of IV potassium infused on Wednesday afternoon and I felt much better afterwards, but I'm beginning to feel like that has run out. Achy and quite fatigued. I've been losing one to three pounds a day. Thirst has become misery and started waking me up multiple times a night. While my other family members take a small personal sized bottle of water, I literally take a gallon to bed with me! But, my thirst will never be truly quenched because my body isn't able to absorb it before it is drained right out. I can't unhook from my drain because I become so nauseated. Pretty much everything I'm putting in my mouth is just to make my mouth feel better and to slightly curb hunger for a few minutes. Anything eaten that won't drain out my tube properly, isn't repeated.
I leave a week from tomorrow (Monday) for my oral surgery at UNC Chapel Hill on Tuesday, February 6th. At my pre op, they drilled in how important it is to be hydrated.... they weren't happy when I explained my current situation, but were glad I would have my tube fixed by then. However, with the latest developments, it won't be fixed beforehand. We plan to contact them to let them know and see if they want to do IV fluid infusions the day before since I'm coming a day early anyways. I have to arrive at the hospital at 6:00 am and we have about a 3 hour drive.
This has been quite the trying time, but I know that my sweet Jesus will take care of me and knows exactly what I need. He will indeed provide the strength and peace I need to pull through. And oh how grateful I am for His peace that passeth all understanding!
Taking Life One Moment at a Time....
Allison
