It's Been A While! :-O

Well hello there!

     It has been over a month since I updated....again! :-|  Sorry!!

    So, I will start by letting you know that I finished my antibiotics for the staph infection on the 12th of August, got blood cultures on the 21st, and saw the infectious disease doctor on the 28th and was cleared of any infection.  These type of infections are known for their possibility to return so I'm very grateful mine didn't!

Life seemed smooth sailing for a little while and then my body decided I was having too much of a dull life and made it crazy again. ;)  I'd been having some pain at my feeding tube (different than normal) since right before my endoscopy and colonoscopy.  Then more recently started worsening.  I went to my GI to see if maybe she had some ideas.  She came to the conclusion that she thought I had a pressure ulcer in my stomach where the balloon is to hold my tube in.  She loosened my tube a bit and told me to let her know how it was in about 24 to 48hrs.  In the beginning I thought it was helping, but then the pain started to get some worse and the stoma began bleeding which isn't normal so I called my GI to let her know and see if there was something else she knew to try.  I was told to loosen it some more and they called in a prescription for a medicine that would coat my stomach and help the ulcer heal...only both brands had ingredients that I couldn't have and my stomach began dumping acid out my stoma (hole for tube) which made the pain heaps worse because I had the original pain PLUS the acid burning terribly.  I called my GI yet again to see what on earth I could do and this time asked if there was some kind of testing that could be done to figure out if it really was an ulcer and asked for a substitute medication.  I certainly didn't want to take something that I'm known to react to before knowing the exact problem!  Well, I was told that there were no other substitute medications and they could do an endoscopy to see exactly what it was and I should receive a call from the scheduler.

During the time I was waiting on the scheduler to call, I had my regular local hematologist appointment on August 31st which didn't have amazing news.  My slowly worsening anemia has gotten low enough to start concerning my doctor.  He scheduled me to have a blood draw 2 weeks from that day to check my hemoglobin to make sure I don't drop low enough that I need a blood transfusion.  He wondered if the tube situation could be a bleeding ulcer that was the root cause of my anemia and was glad my GI was going to do an endoscopy.

SO, we get a call from my GI's scheduler who could get me in on September 7th but that was at a hospital where I've never done very well with their anesthesia.  Who knows why, whether it's use of things they aren't supposed to or just different brands of the medications which can cause conflict with my mast cells.  They're also the hospital who, for those who remember, bummed up the tube surgery where the balloon ended up blocking the stomach door and then wouldn't help me after the mistake and left me suffering until I could find someone who could help fix the problem they caused.  No, I'm not bitter and I don't hold a grudge -- but I'm not dumb enough to be flippant either!  The next available appointment was 3 weeks later and that still wasn't at "my" hospital.  I was ready to take whatever because I was becoming quite desperate by that point.  When my GI heard why I didn't want to go to the first hospital, she didn't want to do it anywhere but at "my" hospital.  That made the endoscopy be postponed until October 10th.  Eeek! :(  My GI's nurse said she was going to be working to see if she could get it any sooner and watch for cancelations.  I called her to check on things several days later and was informed that she couldn't get me in sooner so I'd have to take the appointment on the....oh, that ones been taken so the next time is October 17th.  I was outraged and in hysterics as soon as I hung up the phone because they hadn't reserved the October 10th slot while they tried to get me sooner.  I couldn't wait any more.  The pain had reached excruciating, it was now bleeding continuously, swollen, and stuck (should freely move in and out when messed with and it wasn't!).

Can't believe Ezra is 4!!  Happy Birthday, Roo!

I hung on until the afternoon of the 8th because that was my sister's and Ezra's birthday and I wanted to be home and Ezra to get to be home this year for the celebration instead of in the hospital like last year.  As soon as presents were opened and their dinner was eaten, I had everything packed and ready to head to the ER.  There was no way I could make it over a month. I literally was in more pain than I've had with any of my 3 feeding tube surgeries!  I couldn't get comfortable, I couldn't hardly sleep (very interrupted by pain and only 4hrs at max).  I didn't know what was wrong, but I knew something was majorly wrong!  I had discontinued feedings for the few days prior to going to the hospital because I was concerned that it might be going to the wrong place (like outside the stomach or intestines) with how much it was hurting...and I'm glad I did as I'll explain in a minute.  I got to the ER and it felt like AGES before they got me back, but that wasn't actually the case.  I wanted to SCREAM when the doctors were examining my belly and feeding tube!!!  Especially when the one doctor tried to push the tube in and twist it...... all the while saying to himself "Huh, it is kinda stuck..."  I really felt like saying " Well DUH, I just told you that!" ;P  Anyways, even after 100mg fentanyl no one could touch it without causing excruciating pain.  They decided to do a CT scan to see if maybe there was an infectious process going on.  They wanted to do contrast, but CT dye is NOT safe for me.  So they gave in to doing a non-contrast CT even though they didn't think they could see as much as they wanted.  When the results came back they had a better idea of the problem... and, in my opinion, found everything they needed to!...  An ulcer which had eaten away causing the balloon to end up in the abdominal wall, inflammation, mesenteric lymphadenitis (inflammation of the lymph nodes in the belly)...among other things.  I'm very glad I stopped feedings when I did because it could have posed quite the danger of putting the formula where it wasn't supposed to be going.  I was in pure misery and VERY thankful that they found the problem!  I was admitted to the hospital Friday evening, had my feeding tube fixed under anesthesia on Saturday, and then they kept me until Wednesday evening to make sure an infection didn't show up and that my pain was under control.  The new feeding tube is really loose and pushed in to keep all pressure off of the ulcer and stoma in hopes they will heal.  I saw wound care while I was in the hospital and I have to pack the stoma with a special super absorbent dressing to prevent leakage and acid from coming out of my stomach and burning my skin.  I tell you...stomach acid on the skin feels like what I imagine it would feel like to pour battery acid over your stomach!  Anyways, for 5 more weeks I have to do dressing changes at least 3 times a day, keep the tube pushed in, and wear an abdominal binder for comfort and to hold the tube steady where it won't move a lot and rub on the stoma, causing granulation tissue.  My pain is decreasing as time goes by and I'm hoping it will go ahead and heal up.  There is a chance it won't heal, but I'm hoping it will!

While I was in the hospital my hemoglobin came up a bit so my hematologist rescheduled my blood draw for this coming Wednesday to give it time to see if it was going to drop again.  I hope by fixing the feeding tube that we fixed the cause of the anemia, but we won't know until Wednesday.  Tomorrow morning I have a hospital follow up appointment with my PCP, Wednesday morning at 8:15 I have an abdominal ultrasound to check up on my liver and hepatic adenoma, and get blood drawn at 11:15.  I'm really dreading the ultrasound...Please pray for comfort during the ultrasound - it could be painful and uncomfortable with all my poor abdomen has been through lately!

1. "Be still, my soul: the hour is hast’ning on
   When we shall be forever with the Lord.
   When disappointment, grief, and fear are gone,
   Sorrow forgot, love’s purest joys restored.
   Be still, my soul: when change and tears are past
   All safe and blessed we shall meet at last."
   
   

Well, hope everyone is having a wonderful September so far!

Taking Life One Crazy Day at a Time,
                                                     Allison