Test Results & “Surgery”...Again

 Hi friends!

    So, I’ll start with the results from Ezra’s (my medical alert dog) tests...

Ezra conked out from the
sedation and pain killer they
gave him for his exam and tests.

  they were very positive!  His bones look very strong.  The vet didn’t see anything wrong in the X-rays.  He did a very thorough sedated exam of his legs and the only thing he found was that Ezra’s left (problematic) leg is slightly weaker than the right, but his hip joints have very good bone coverage (no hip dysplasia) and none of his joints move more than they’re supposed to (no torn tendons/ligaments).  He sent the X-rays to their veterinary orthopedist to make sure he didn’t miss anything.  His conclusion is that he thinks Ezra may have some tendinitis in his knee that is irritated by him laying still for longer periods of time which makes it hard for him to get going.  He said there is also a possibility that Ezra has the very starts of arthritis that isn’t visible yet.  Either way he wants to get him on a joint supplement that Ezra’s super sensitive stomach, Hyperlipidemia, and allergies hopefully can tolerate.  He had started him on a joint supplement a month or so ago and it started helping but Ezra ended up having an allergic reaction to it...go figure!  He is beginning to sound more and more like a Workman!  I’m supposed to start exercising him more as he tolerates it and doing massage/passive movement in his hips and left leg.  Even though we still don’t have a definitive answer, I’m so very grateful it isn’t progressed arthritis or the starts of bone cancer!  I need my tough little man with me for a long time to come! 💙  The Lord worked things out to where we could keep Ezra out in the van with us until they were ready for him instead of him being crated until they got to him and then we were able to take him home within about 30 minutes so we didn’t have to be separated so long.  For those who aren’t aware of what’s been going on with him...Ezra has been having issues with his back leg for several months.  It’s intermittent and usually happens when he has been lying down for a little while.  When he goes to get up from that position, he limps really bad on that leg for usually 5-7 steps, but once he gets going it rapidly lessens to his normal gait and he is still his energetic, playful self.  He has an anti inflammatory pain reliever (equivalent to ibuprofen) that I can give him before we go out for appointments/church or when he’s having a tougher time and I’m really optimistic about getting him on a joint supplement with the results we were seeing with the previous one.

I no longer have my NJ tube!  If you have a very weak stomach you may want to skip to below the line! ;)  I woke up one morning around 4:15am with extreme nausea.  I took Zofran to no avail and began vomiting at about 5:15am.  I vomited so hard that I threw up my NJ tube.  My worst nightmare came to life...my NJ tube was in my nose and out my mouth.  Thankfully my sister was able to cut it and pull it the rest of the way out.  I thought something I had eaten must’ve gotten stuck in my stomach because that’s what happens if something won’t drain out my stomach drain tube.  But usually I get instant relief once the food is gone...not this time.  I vomited from 5:15am until around 1:30pm.————————————————Once the vomiting stopped, I improved pretty rapidly.  It did not behave like a virus (and no one else got sick) and it also didn’t act like my normal when food gets stuck in my stomach and won’t drain out my stomach drain so we are figuring it was just a miserable mast cell reaction. One positive is that I got rid of my NJ! lol  The technique wasn’t the most comfortable, but I didn’t have to worry about the weighted end getting stuck on my adenoids! :)  Oddly enough, it feels so weird not having something gagging me when I sneeze, cough, or roll over in bed!  I’ve had that thing for over 8 months so you can imagine how bare my face feels without a tube taped to it!  Thankfully I was already well into the transition from NJ to J tube and was supposed to be on full J tube feeding only a few days after I lost my NJ so I don’t have to get the NJ replaced.  I’m now on full nighttime feedings through my J tube and that is going well.

My G tube....not so great.  I finished the course of IV antibiotics for the Pseudomonas infection and the drainage stopped however, the pain has only worsened.  I asked my GI if there were ANY other options I could try because the pain has just become unbearable.  I exhausted all of my options other than going in and making a whole new stoma (hole for the tube).  I tried loosening my tube, wearing an abdominal binder (which ended up injuring my J tube so I had to discontinue wearing it), ice, heat, and I was even desperate enough to try putting tea bags on my stomach (it’s supposed to help with bacteria and inflammation).  So I contacted him on Sunday afternoon to let him know I was done and ready to have it moved again since that was my last option.  We have been corresponding back and forth to get things in order and he messaged me back this afternoon and asked if I could do tomorrow at 1:30 because he’s working in the hospital this week and then won’t be back for 6 weeks.  I definitely do NOT want to wait 6 weeks with this tube hurting like this!  Hopefully the new placement will last for many years to come!  The plan is to place a brand new G tube, making a new stoma and then for me to stay tomorrow night in the hospital.

Well, I’m off to prepare for my very sudden procedure tomorrow!  Please pray things will go smoothly, the tube placement will be a success, and comfort for Ezra while I’m in the hospital and he has limited activity/movement (hospital rooms are only so big).

Taking Life One Procedure at a Time...

Allison

p.s. Please pray for my family!  We are going through some really, really rough waters right now.  I can’t give details, but Jesus knows and we could really use your prayers!

CT Results

 Hi friends!

     I got the results of my CT scan that was done this morning.  Everything looks great.  It’s good news, yet part of me is a little uneasy about getting my hopes up.  This would be great if all of it was a brewing infection and will go away with antibiotics, but there’s a part of me that’s doubtful and unsure.  Pseudomonas is a very painful bacterial infection so it could be the culprit yet the pain was there a good long while before the drainage showed up so.... yeah.  There are a lot of what if’s that I just have to give to God because there’s absolutely nothing else I can do with it but worry.  It is easier said than done, though!  I guess we will just have to wait and see what improvements come with the antibiotic.

Please remember to pray for my ever

With my precious Ezra - getting
some extra fun time in before
he goes for his test tomorrow :)

faithful alert dog (Ezra) as he goes in for his sedated testing tomorrow morning at 8:30.  You could throw a few prayers in for me as well...I don’t know what I’m gonna do without him!  We haven’t been separated for longer than a little over an hour since he had surgery at 4 months old and he’s nearing 8 years old now.  He will be at the vet a minimum of 6 hours.  I’m just really hoping this gives us answers that we can remedy!

Thank you again for your prayers!

Taking Life a Few Unknowns at a Time...

Allison

Test Results & Schedule Changes

 Hi Friends!

     I got the results of the cultures they did on my G tube.  They were positive for a Pseudomonas infection as I suspected so I’ll be starting a week of IV antibiotics sometime tomorrow.  They have it prescribed, but due to me having to have it without dextrose, the pharmacy has to order the vials and mix it themselves.  Please continue to pray that it will not reach my blood stream or my brand new J tube!  Also, pray that they can get rid of it for good and it won’t come back.  Pseudomonas is a tough, sticky bacteria and has been really hard for me to get rid of in the past.

My CT scan for my G tube has been moved up from Friday to tomorrow at 11:15am.

Ezra still has his test on Wednesday so please continue to pray about that!

Taking Life One “Adventure” at a Time...

Allison

The Ups & Downs Of Life....

 Be still, my soul: Thy God doth undertake

To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

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.

Hi Friends!

   Once again, I apologize for the delay in updating.

After my last update I started getting

My mad J tube and Incision
before I got the staples
removed and the stitches
came out of my tube.

a lot of redness and added pain at my incision and J tube and my stoma was dilating around the tube.  It was obvious to us that it was my mast cells angry at the staples and stitches.  I called the surgeon and the nurse said she would take the staples out sooner than my post op appointment but the surgeon wouldn’t let her take out the stitches which were at the tube.  There was no way I could send them pictures so I could only attempt to describe it and they were determined it was acid burn from drainage at the tube site.  Anyways, I got my staples out on the 2nd and at that point the nurse saw my J tube and agreed with me that it was definitely from the stitches, but it didn’t change the fact that she wasn’t allowed to remove them.  But the Lord saw fit to be merciful and the stitches came out on their own.  See, my mast cells don’t like the kind of stitches he used so what happens is the skin and flesh around them literally disintegrate until the stitches just come through and once they’re out then it heals up great.  This time was no different.  Once the stitches had come out, my J tube began rapidly improving to the point of no pain!  The surgeon was pleased with how well I was healing when I went to my post op appointment on the 7th.  Since I normally do 12hr feeds during the day, he is having me cut my feeding rate in half and do 12hrs through my NJ (nose tube) during the daytime and 12hrs through my J tube at nighttime for 2 weeks and then, as long as all is well, transition to doing the full feeding rate for 12hrs at night for the next 2-3 weeks until I see him again.  As long as everything is going well at that point I should be able to get my NJ removed.  He said he had to do my whole surgery with kid gloves because when he opened me up he found that my small intestine is the size of a baby’s.  He said a normal small intestine is about the caliber of his thumb or a little larger and then he held up his standard size ink pen and said mine is about the size of that!  He can’t explain why because the formula I use is real foods made into formula so my food isn’t pre-broken down where my intestines wouldn’t have to work.  I wonder if maybe that is why I have some of my GI issues.  He said he had to be super gentle with my intestines because they were so delicate.  He put my tube in a couple feet farther down in my intestines than my previous J tubes in hopes I’ll be able to do nighttime feeding so I don’t have to be as tethered during the day.  I’ve never tolerated nighttime feeding because it would make me sick most likely from backing up into my stomach when I laid down.  So far I’ve been doing great with nighttime feeding at half the rate through my J tube so we’ll see if that continues to go well when I bump it up to full rate.  It would be great if that would work out!

Now...for the G tube.  Unfortunately, this one doesn’t have such a great report.  They exchanged the tube on the 3rd and it made no difference in the issues I’m having with the severe pain and the retention balloon making it’s way into the stoma.  It’s so bad I’m regretting having it moved in the first place because it’s worse now than it was before the surgery.  I contacted my GI to let him know there was no improvements with the tube change and ask him if maybe a CT scan would tell us what’s going on.  He thought that was reasonable and might be helpful so he ordered a CT that is now scheduled at 10:45am on the 18th.  He said he hoped we wouldn’t have to move it again, but we would have to see how things go if the CT scan doesn’t give us answers.  I hope not as well however, if that is the only solution, I’m more than willing.  And to complicate things, I’ve been having neon green/teal blue drainage from the G tube the last several days that has been consistent with my pseudomonas bacterial infections in the past and I have really started not feeling well today which isn’t a good sign.  I got my G tube swabbed yesterday for cultures but haven’t gotten results yet.  Please pray that this probable infection doesn’t spread to my J tube or bloodstream!

Also, please pray for my Ezra.  He goes in on the 16th to be sedated for a full detailed exam and X-rays of his hip and leg.  He’s been having issues with his back leg for a few months now and the vet can’t seem to find a treatment to fix it so we’re doing this to hopefully find the problem.  It’s intermittent and mainly when he tries to get going after lying down for a while so we are suspecting arthritis but we won’t know until they can see in there.  I’d just appreciate your prayers for his safety and some answers that we can treat!

On a happy note, I’m so very grateful to have actually been able to attend church lately!  It has been a big blessing not to be quite as isolated!

I woke up feeling super crummy this morning so I just flipped the radio on and a man was singing the 2nd and 3rd verses of Be Still My Soul (words posted above).  The Lord knew I needed that sweet encouragement and comfort!

Thank you for your continued prayers and encouragement!

Taking Life One Hurdle at a Time...

Allison