All Things Gastro

To simply see our plans made from the GI doc appointment, scroll to the bullets at the bottom of the post.  To get some background about J's latest issues, read on:

What a week it has been.  Let me summarize it for you:

• Sunday we went the ER for Jayson's G-tube stoma.  It was very red, bleeding, oozing, and hurting little J.  His prolapse also came back, which is when a part of his internal stomach lining gets put out of the G-tube hole and is exposed.  The ER was no help, *no big surprise*, but we got a CBC blood draw which told me his infection was not raging.  They said it is likely he has a mild skin infection and should see the wound team in clinic.  They also treated his severe constipation with an enema. 
• Sunday J's feeding pump started beeping at the ER saying the battery was dead.  Mike and I thought we charged it.  When we got home, we plugged it in.  It still beeped.  The pump charger was dead and hadn't been charging our pump.  It took about 4-5 hours, but home health finally brought us out a new one.  J had a rough day.  He was fussy, agitated, was in a daze, and had a hard time sitting without falling and couldn't crawl the first half of the day.  His neurological issues were acting up.
• Monday I called the wound clinic and left a message, and I called GI and got an urgent appointment on Thursday.  Our GI was squeezing us in between two procedures.  
• Tuesday I called the wound clinic again.  They said I needed a referral to be seen.  I informed them that our ER discharge papers state we were to be seen.  Apparently that doesn't count.  I told her I could get our pediatrician to send in an order.  She said not to bother because we were already being seen in GI on Thursday.  GI should be able to look at our wound for us.  But the whole medical world knows that GI docs don't know as much about stomas as the wound team.  Sigh.  J had another rough day with more neurological issues, struggling to sit, crawl and eat again.
• Wednesday early early morning Jayson had a very difficult time.  He would not tolerate his new cpap mask at all, and was having crazy spasms and episodes all night long.  His eyes were half open, half closed, and he needed oxygen.  At 3:00AM his pulse ox stopped working.  I slept intermittently in between 12:30-3:00AM, and then stayed up and watched him breath the rest of the night.  I had to work, and called home health on my way at 8:00AM SHARP.  I left a message stating we needed a new machine.  4:00PM comes around, and still no call backs.  I had to call home health again and it was 6:00PM before we got a replacement.  We were also told that we could use a loaner machine, but we now own ours and would have to pay an $80 charge just to have someone look at our pulse ox, and then pay for the repairs.  I love that we rent to own a USED and ABUSED machine, and then get to pay for its repairs.  After J's bath I inspected his G-tube site to notice that it got significantly worse, and fast.  His prolapse was much bigger, and he was very uncomfortable.  No wonder J was having a hard time.  I stayed up late preparing notes, videos and a calendar of GI symptoms to discuss with our GI doc.
• Thursday I loaded J into the car to head to our GI appointment.  Once driving, I realized that I must have left the mirror in Mike's car so I couldn't see Jayson while driving.  I went to turn on the pulse ox, and lo and behold, it wouldn't turn on.  Our LOANER pulse ox was broken!!!!!  You've got to be kidding me!  We spent 3 hours at Primary's getting things figured out {explained later in this post} and got stuck in terrible traffic.  It took me an hour to travel down Foothill Drive!!  In case you're not familiar with this short street, it usually takes me 10 minutes.  I'm on the freeway and catch a whiff of a lovely smell... guess Little J was no longer constipated!  I pull over in a parking lot to find a surprise waiting for me:  A car seat fulllll of watery, nasty diarrhea.  And no, I didn't have the insert in because I had just washed it from the last diarrhea blowout.  I spent the next 30 minutes sitting on the cement of the parking lot cleaning up Jayson, and then the car seat.  Clearly I didn't have enough wipes in my diaper bag for that type of explosion.  I found a random rag in my car and used my water bottle to make do until we could get home.  To top it off, I had a feeding tube mishap which left the car seat, me and J covered in formula and stomach contents.  Yummy.  It took me another hour to get home due to the rush hour traffic I hit.

Soooooo, needless to say, I need a really large bowl of chocolately chocolate ice cream!!!! :)

Now that I've vented, let me share how our doctor appointment went.

I have been very concerned about more than just J's stoma.  Two weeks ago we learned at Jayson's pulmonology appointment that his throat was really red, likely from reflux.  We greatly increased one of his meds, and added another.  A week later we saw neurology.  They think his reflux is bad too, and possible causing some of his neurological episodes.  I went home puzzled... J's always had reflux, but it was silent and not significant.  I rarely noticed it.  Now I notice it all the time.  He spits up often and throws up sometimes.  His throat is red, and it's causing him enough pain he's having episodes.  Why?  When did it get bad?  I started reflecting, gathered my medical notes over the past couple of months, and I had an epiphany---->  Things got worse in May.  He stopped eating in May.  He had chronic diarrhea the entire month of May, and part of June.  In June he started spitting up and throwing up.  His constipation got extremely bad at the end of June and into July.  In July his neurological episodes acted up and he had a really bad one in August.  In August and September, J has had chronic constipation for 5 days at a time, requires a suppository to go, then has straight diarrhea for two days.  Then he's constipated again.  His stoma got bad in August and even worse in September.  This all started in May.... what changed, if anything, in May?   WOW... We switched from a GJ tube to a G tube in mid-April.  Those changes would begin to affect him in May.  Intolerance to G feeds would be evident through diarrhea, constipation, reflux, tummy pain and episodes.  It suddenly became clear that he may not be tolerating his G feeds.  He may need to go back to his GJ tube.  I called our GI's office over a week ago and got an appointment for later in September.  I thought we'd hold out, but things were getting pretty bad, and we found ourselves in the ER this week.  They told use to get into GI ASAP, and so we did.

I like our GI doc, but I really don't know him.  After the scandal with our last GI, we found Dr. P to switch out J's tube from the ugly complicated GJ contraption he had to our new G tube.  He did a great job.  We saw him one other time to simply switch out Jayson's G tube and give him a checkup.  He didn't say much and we didn't need him to.  He took care of business, and moved on.  I was really nervous about this appointment.  I had a lot to discuss with him, and had no idea about his bedside manner or ability to resolve our concerns.  I was also nervous because he was squeezing us in.  Although I appreciate it greatly, I was nervous we would be rushed and our concerns would be ignored.  Well, after today I can honestly say that Dr. P is at the top of my fave doctors list!!!  What a great visit!!!  He listened to me.  He didn't even care about looking through my calendar or evidence I brought to back up my concern.  He said that he knows me well enough to know that if I'm worried there's a reason to be.  Wow...  I challenged one of his ideas.  He thought J's prolapse was granulation tissue.  I challenged him and defended my opinion with the research I acquired.  He respectfully said I was right and he would contact the wound team to check it out further.  Wow again!  He created a solid plan, many plans really, and plugged them into the computer right away.  He pulled in his scheduling assistant and his nurse to ensure we were all on the same page, and gave me their personal numbers.  He acted quickly, and left things in my court.  He had his assistant get our paperwork filled out a month in advance for our procedure.  He heard the concern in my voice, and responded.  He didn't cut me off, or remind me how much more he knows than me. He respected me, and treated me like his partner.  He recognized my role as Jayson's expert.  He addressed every one of my concerns, and we have a plan A, B, and C.  He didn't rush me, and he stated how happy he was to make room to see Jayson.  Again he stated that he knew that if I called to get in due to a concern that there was a reason to be concerned.  He reminded me that he would be happy to do that again any time.  THIS is what you call a good doctor.

We called in the wound nurse, and the first wound nurse thought it was granulation tissue as well.  I challenged her, just as I did Dr. P.  She called in a more experienced wound nurse.  This wound nurse declared with certainty that it was in fact a prolapse, for the same reasons I brought up.  It was difficult, however, to decide how to approach it.  Dr. P already had some plans that may help the prolapse, so we are going to wait and see.  I take Jayse back next Friday to have it checked again.

What we accomplished today:

• We increased Jayson's Miralax dosage to the adult dosage to help with constipation
• We eliminated another one of Jayson's bolus feeds.  He has been gaining weight really fast, like 2 pounds in 2 months.  The extra weight and hydration could be causing the bloating, constipation, discomfort AND be pushing the prolapse out his stoma.
• We scheduled a endoscopy, or a scope of his esophagus.  He will have some biopsies done to look to see what damage is or isn't being caused by reflux.  If there is evidence of damage, Dr. P will place a GJ tube.
• We are scheduling this procedure along with our ENT procedure we will have next month.
• He pulled out J's Mickey button G-tube and replaced it with a disc G-tube with a balloon.  It is more gentle and will allow Jayson's angry stoma and gastro track to heal.  We will keep it in for 2-3 weeks.  It is not as easy to use, but it will help J.
• He ordered an AMT mini-one G-tube button for us to use after the two weeks with the disc.  It is possible that J is allergic to the Mickey and the AMT may be better for him.
• If things don't improve in a couple of days, we will place a GJ tube anyway and see if things improve quickly.  Sometimes that's the easiest way to know.
• We are continuing to use the sensitive wound care product Mepilex Lite on J's stoma, hoping it will help push the prolapse back in now that there is a new tube and less food in his belly.
• We have a new medical cream to try on the red part to see if it soothes the irritation.
• We will visit the wound clinic in a week to see if the decrease in feeds, increase in Miralax, and the new tube help with the prolapse.  If not, we will try removing the new tube and forcing the prolapse back in, and replace the tube OR visit other options.

Productive, right?  Lots of information, right?  Yup, I'm exhausted.  But very relieved knowing my concerns were heard and we have a plan.  Here's hoping that J feels better in MANY ways very soon.

 J's new tube:

 
The pics below are kind of gross, so if you don't like gross, don't scroll down. :)

 These were pictures of redness that started in August and persisted the next 4 weeks.  The redness got worse in the evenings.

This was from Saturday night, September7.  This picture is how it looked when I decided to take J to the ER.

This is how it looked at the ER. It is less red during the days, but as we waited in the ER for two hours it was easy to see all of the drainage.  There is even some pus you can see at the bottom.

This is a picture of the stoma on Monday, the day after we went to the ER.  You can see the prolapse is splitting open.  This was where it was bleeding and draining pus from.

This is how it looked Wednesday night, the night before our doctor's appointment.  Notice the prolapse in size.

This is a picture comparing the prolapse on Monday compared to Wednesday.  It is clear how quickly it grew.

How it looks right now with the new tube.  I think it's already looking better.  What do you think??