Hi there!

    So my tube change last Tuesday went very well!  The burning pain at the tube site is gone, most of the granulation tissue has fallen off, and my hickman is working wonderfully again!  The only negative is that the Mic-Key button tube isn’t draining my stomach very well.  I’m in the process of shuffling around the foods I’m eating to see what will drain and what won’t.  I’m really, really hoping I can figure out an avenue to make this tube work cuz it is sooooo much more comfy than a regular PEG style tube!  Only problem is it doesn’t always even drain stomach fluid and I’m ending up with a lot more bouts of nausea and extreme reflux.  If I don’t soon find a way to get this one working better, I will probably have to give up and go for a swap to a less preferred tube.  BUT it will be a simple switch-a-roo if I do end up having to get it changed because it’s just a deflatable balloon inside holding it in.  We shall see whether or not this stubborn little thing starts working in the near future!  I did learn that getting my old stoma surgically closed is an optional thing and isn’t a requirement if it doesn’t close on its own (which it hasn’t so far).  My GI is still in hopes that it is just taking a bit longer because of the condition it was in before we removed the tube, but it isn’t a big deal if it doesn’t close.  It’s a matter of when (or if) I get to the point of “I can’t deal with this anymore” and want it closed.  Right now it’s just a nuisance and I (and my GI) don’t want to go the surgery route.  Maybe one day I’ll get to where I’m just totally fed up with the messy shirts and embarrassing noises, but for now, I’d rather have this than get the surgery to fix it.  Still hoping it’ll close on its own though!

Our NY trip went fairly well.  The appointments were good...got some useful pointers and some more ideas to try for treatment.  We got to do a little site seeing before we traveled back home.  Thursday evening we got to go on the Staten Island Ferry and see the Statue of Liberty in addition to more of the NY buildings!  It was definitely a gamble with MCAS, but was worth any grief it caused to see those things that I’ve always wanted to see!  We left Friday morning and got home around 1am on Saturday.  I didn’t have too terrible of a 

time out of my MCAS on the trip but after getting home, the traveling, and everything I did, came back to haunt me. :/  I’ve been a little achy, but the main issue has been with my dysautonomia  (heart rate and blood pressure).  My heart rate keeps skyrocketing and my blood pressure keeps plummeting, especially when I try to get up.  My home health nurse came this afternoon to check things out and confirmed the issues so my doctor is getting me some IV fluids ordered for home.  Usually those help a good bit...hopefully they work their magic again this time!  My nurse took my STATS sitting and then had me stand and, within seconds, my blood pressure had dropped quite low and my pulse was picking up speed.  I think my body has just had it with the trip plus my feeding pump for my tube feedings has been acting up and not feeding me correctly, so I’m not getting the whole amount of formula I’m supposed to get, either.  Hoping to get that straightened out soon, too!

Praise the Lord, the pharmacy that mixes my IV diphenhydramine (Benadryl) bags got a big shipment of my Benadryl and said they’ll easily make it through the shortage!  So, sooo happy to hear that news, and I’m very glad they won’t have to take from my bolus supplies to be able to make it through!

Thank you so much to those who have prayed and continue to pray for me and my family!  It really means a lot to me!  And I apologize for not getting this written sooner, but it has just been a rough recovery from the trip, making it a bit difficult to get an update out.

Taking Life One Bag of Fluid at a Time....

Allison
{I’m very sorry about how sporadic the pictures are and the fact that they don’t have any discriptions...my phone is not cooperating with blogspot so if you want to see the discriptions for the photos you can do so HERE}

Howdy!

     I feel like I'm constantly apologizing for the lack of updating, so I'll just skip that step this time! ;)

I had a bit of a rough spot soon after I got home from the hospital after my latest G tube placement.  I struggled with keeping my glucose stable which is one of my symptoms of a reaction and benadryl normally brings it back up or down, whichever the case may be.  They started me on MiraLax while I was inpatient and then had me continue after discharge.....I finally put two and two together, and upon discussing it with my doctor, decided to stop it to see what happened.  Sure enough, my glucose instability straightened out once the MiraLax was out of my system.  Definitely not doing that again!  Soon after the procedure, my Hickman line in my chest began giving me a fit.  It has been having issues with giving blood return and such whereas it was working beautifully from the time I first got it to right after the G tube procedure.  This is a signal for a reaction to something, as well, because it seems when my mast cells get mad, they automatically go for the "foreign objects" in my body, thus causing malfunctioning lines.  Since coming home, I've also had some breakdown, burning pain, and granulation at my new tube site.  All of this makes me lean more towards the idea that I may be reacting to this new tube.  It is a totally different brand tube than I've ever had, and it wouldn't be far fetched for this body of mine.  I've had a reaction to a tube before which caused my stomach to way overproduce bile and my liver counts to go up.  I was literally draining 7 to 9 liters of bile a day from my stomach.  Once all possibilities (blockages, etc) were ruled out, we opted to take the leap and change the tube to see if maybe I was reacting to the tube..... sure enough, once the tube was changed everything returned to its normal state.  So yeah, it wouldn't be out of the ordinary for my body to be rejecting this new tube in this way.  The good news...I have less than 24hrs to go until I get my tube changed to a low profile tube that I know my body does well with.  I have an endoscopy scheduled tomorrow afternoon at 1:30 (arrive at 12:30) to remove this tube and replace it with the new one.  The G tube I have currently has a mushroom type disc holding it in instead of a deflatable balloon and normal procedure is to yank it out with 15lbs of force (totally serious!!) but I have a connective tissue disorder that makes my joints extra loose and the jolt it obviously sends through the body (when they yank the tube) makes my joints come out of place, causing me to be laid up for at least five days, if not longer.  I've only had 1 disc tube yanked out and it was horrible....I could hardly move.  So my GI is going in endoscopically and removing it from the inside instead of yanking it through.  That way I won't have the horrible aftermath.

Now to the matter of my old stoma (hole that housed my old G tube for about 3yrs).... it was closed for the initial placement of the new tube.  However, it has since been super annoying!!  It acts like its closed and then, suddenly, stomach content comes spewing out or sometimes just air which is loud and totally embarrassing because there is no way to control it!  And I'm talking loud...I was watching a movie with my family and they heard it over the noise of the movie!  The nitty gritty of this situation is if it doesn't soon seal off and stay that way, I will have to have it surgically closed.  Technically it should be closed on its own within 24hrs of removing the tube, and it has been about a month and a half at least since I removed mine!  I'm wondering if possibly it could be part of the reaction to this new tube since it was sealed off for him to place the new one and then opened back up.  I have healing issues due to MCAS, and I can't help but wonder if it could've reopened because of the new tube flaring things up.  We'll see how it heals once I get this tube swapped out for a tube I know my body does well with.

Lord willing, I will be home from the hospital tomorrow evening after the tube change and just in time to load up the car so we can leave for New York early Wednesday morning.  Two of my sisters and I have appointments with our mast cell specialist who has moved from MN to NY.  Hey, an 11hr drive is better than a 24hr drive...plus I've never been to NY, so that'll be kinda neat.  The plan is to travel there on Wednesday, have appointments on Thursday morning, maybe do a little looking around for the rest of Thursday, and then travel home on Friday.  A quick, and no doubt tiring trip, so we would appreciate your prayers!

We were just informed the other day about a national shortage of IV diphenhydramine (benadryl).  This is a pretty scary thing because this medicine is a lifeline for me (and 2 of my sisters).  I'm on a continuous pump (as well as the 2 sisters) to keep me stable and alive.  The pharmacy is in a pinch and can't get any from anywhere to do our infusion bags.  It will most likely soon be to where they have to take back some of my bolus doses in order to mix my bags for the continuous pump.  They expect this shortage to last until mid September.  Please pray that the Lord will keep us safe and intervene if He sees fit!  This is a very serious issue for my family along with many, many other MCAS patients!

I can't believe my precious Medical Alert Dog, Ezra will be five on the 8th of this month!  Time has sure flown by.  It just doesn't seem possible.  The Lord sure did give me a huge blessing that I could never deserve when He gave me Ezra!  My Ezra Hudson is so much more than a dog...a caregiver, psychologist, companion, physical therapist (he loves to play tug!), comedian, and, most of all, the most patient, loving friend in the world!  He has changed my life in so many ways.  Its only by God's grace that my precious Little Man survived being attacked by a pit bull mastiff!  I could've easily lost him that day, but Jesus knew I couldn't live without him!  I love you, Roo Bug, and I hope you have the best birthday ever!  {View Ezra's life story HERE}

Prayer requests

• Tube change will go smoothly
• Old stoma will decide to go ahead and seal off soon
• Safe travels for our NY trip
• Safety and provision through the diphenhydramine shortage

Thank you so much for your faithful prayers and encouragement!

Taking Life One Tube at a Time,

                                             Allison