ps

Seamus will be 2 next month and is already full of attitude.  I just stopped him from giving JoJo a smack and of course Eve loved it.  I looked at her and said, "This must be your dream come true: a naughty boy that lives in our house."

new tube for next week

Over the weekend, I visited an online support group for parents with kids on feeding tubes.  I asked about out problem.  Several people replied that the valves on Mic-Key buttons always "blow."  That it often happens weeks after a new button is placed.   They end up having to leave the extension tubes in to keep the port from leaking.

I finally talked to the GI doc yesterday.  He said he's never heard of this happening before.  He seemed very surprised.  We have a new tube placement scheduled for next week and the decision then became what kind of tube to place - the mic-key or the older version.  I told him about another brand of button that I have heard about, the AMT G-jet.  Even though our hospital doesn't carry this, he said he is completely open to checking it out and ordering it if it's something we really want to try.  This would be for a future placement, of course.  I'm going to forward the info to his office so they can check it out.

In the meantime, we decided to try the mic-key one more time.  The decision was made when the doctor asked me, "If the mic-key was working properly, would you prefer it?"  I said, "Yes."  So, we'll try it one more time.  When they take the old one out, I'm going to ask to keep it.  I want to cut off the tabs that will close the ports in case the new one starts to leak.  Then I can cap the g port while the j is in use.  Also, Jim wants to send in the defective button to the company that makes it.  I've already called them to complain.  The woman I talked to was super receptive and said that they take these things very seriously.  So, maybe one day they will redesign the plugs.

Anyhow, if this new mic-key blows (it's valves), then we will never use one again.  We'll try the g-jet or go back to the old design.

Oh, and I asked the doc about the every 3 month replacement of the gj.  He said he totally disagrees.  He also said it's only some of the docs in radiology that say that.  He said he doesn't want his patients exposed to the radiation and sedation that often.  Yes, the tubes get grody, but 3 months is just too soon.  I think I'll split the difference.  :)

laughing Eve

Here's a video of Eve we took tonight.  She absolutely loves it when someone gets in trouble.  So, Jim often gets "in trouble" because we know it will get her going.  So, I hope you enjoy this as much as we did. 

holding pattern

The pedi palli nurse got a hold of the GI doc last night.  He said to hang tight over the weekend and use the extension tube to plug up the port.  I'll call his office on Monday.  I'm guessing this thing needs to be replaced (rather than use an annoying temporary fix for 3 months).  I suppose the next questions are: Do we think this one is simply defective and get another Mic-Key?  Or do we go back to the devil that we know? I'll update on Monday.

busy day

Eve and I had a very busy day. We started with a visit from the Pediatric Palliative care nurse and a wound care nurse.  Eve's stoma has had lots of leakage (her shirt was soaked this morning) and she has skin breakdown.  So, after looking at the stoma, the wound care nurse came up with a plan of attack, but needed to get supplies first. 

So, then we went to coffee with 2 of Eve's favorite teachers.  The joys of living in a small town include going to a public spot and seeing many many people you know.  It was awesome! A great time was had by all.

Then, we rushed home to meet the wound care nurse who now had her supplies.  She showed me how to stabilize the button (which should help with the granulation tissue) and felt that the redness under the tube was because of pressure where the tube rests on her skin when she's sitting up.  She recommended a conservative approach to start.  She put a bandage like thing on her skin (that won't pull the skin when removed) and then placed steri strips over the button and to the bandage.  She then gave me some Calcium Alginate to put under the button to absorb extra drainage and keep the area dry. 

I felt great since we had a plan.  I gave Eve her afternoon meds and put her down for a nap.  When I got her up 1.5 hours later, the Calcium Alginate was soaked and the bandage thing was starting to peel up.  So, I called the pedi palli nurse and she came out for a visit.  But, this time the strip of C.A. was nearly dry. 

After looking closely at the button and stoma we realized that the port was not sealing properly after I gave her the meds.  The port leaked out part of what had been inserted.  So, we made a few calls to the GI and to the department that placed the gj.  The GI is on call tonight and was supposed to call us back (we talked to his nurse at 4:30pm).  It's 9:30 pm and he hasn't called back.  I guess he's not going to.  The radiology department doc thought that her stomach was full and that we should give meds through the j port.  That freaks me out because I really really don't want to clog the j tube. 

Anyhow, when we disconnected the feeding tube from the j port it leaked, too.  A lot faster than the g port.  So, I don't know what's going on.  I don't know if this is usual for this type of tube, or if the button is defective.  We got this low profile gj to make things easier - not to cause more problems. 

So, the concern is that her meds will leak out and that the constant moisture will cause further skin breakdown.  It's complicated, but the closure for the g port can't be used when she's getting her feeds through the j port (20 hours a day).  So, we'll need to leave one of the extension tubes connected in the g port until we figure this out.  So, now she'll have two tubes hanging out of her for 20 hours a day.  Great. 

Hopefully we'll hear back from GI tomorrow. 

new gj

Today, Eve had her new gj tube placed.
When we arrived at Baystate, the nurse asked if Eve was sedated the last time she had the tube placed.  I told her I didn't know because Jim was with Eve when it was done.  She said that they've been doing the gj replacements without sedation, and since it wasn't Eve's first placement, it might be worth trying.  Eve is notoriously a hard stick for an IV, and not doing sedation would avoid an IV placement and any recovery time from the sedation.  So, I agreed.

We went down to radiation and the Dr who would do the procedure raised his eyebrow when he heard no sedation.  I asked him if he thought it was best and he said that it was whatever I wanted.  I told him, no, it's whatever you want.  He said, no, it's up to me.  So, I said no sedation.  When I put her up on the table she looked so scared.  I was pretty worried, but put on a brave face for her.  The procedure took about 30 minutes.  The Dr said that we should do sedation next time.  He said she'd be much more comfortable.  I think she was moving her legs a lot and was pretty scared.  Also, she has some granulation tissue at the stoma (which I totally forgot about during the decision not to sedate) and is very sensitive there.  So, I felt bad that I made the wrong choice.  But, now we know and will make sure she's sedated next time.

Speaking of next time, the Dr and nurses said that the gj really needs to be replaced every 3 months (not 6 months like the GI told us).  I am also supposed to call the radiology department about 2 weeks before the procedure to make sure they order a Mic-Key button in her size and put her name on it.  Apparently, we were lucky that they had a button in her size (even though I thought I had the GI office reserve one for her).  So, I learned a lot today. 

Here is the new Mic-Key button for the gj.  On the left side is the g port.  On the top is the j port.  On the right is the port to fill the balloon that keeps it in place.  We have two extensions that hook into the g and j ports.  One will be hooked up 20 hours a day for her feeds.  The other will get hooked up just during administration of meds.  But, when she's not hooked up for feeds (4 hours a day) or during bath time, we won't have to worry about a dangling tube.  And, if the new system is a pain because of the extensions, then we can always go back to the other type of gj in 3 months time. 

Backyard changes

This summer, we've decided to make some changes to the backyard.  First, we got a swing set for the kids.  We also bought a special swing for Eve so she could enjoy it, too.  It's just like the swing she has at school.  Both kids just love it.  Seamus is quite the daredevil and already climbs the ladder by himself (with some parental spotting) and he climbs UP the slide by himself.  He will go down the slide on his own, too, but sometimes goes a little fast for his liking. 

Josie likes it, too.  She got a running start and ran up the rock wall in the back.

The second change was the new fence that we got for the backyard.  It has green box wire to keep Josie in.  She loves her new freedom.  I'm hoping it also makes the yard less attractive to the bears.  They usually hang out at the neighbor's anyhow.  

Seamus got a new lounge chair from Ikea.  He's good at lounging.  So is Josie (in the background).

First corn on the cob. 

All else is well.  The kids are both healthy.  Seamus got over his cold, and Eve's stoma looks pretty good.  She has a little more granulation tissue, but I'm going to leave it alone until they switch the gj tube.  Here's hoping for a great summer!