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!

two kids, two dr visits

In the last two days, both kids have been to the pediatrician.  Yesterday, Eve went for some wound care.  Her stoma has been bleeding and she developed some granulation tissue around her tube.  Don't google that.  At least, don't use google images.  Trust me.  Anyhow, it's a red bumpy tissue that develops on a wound.  I have no idea why this many months after the tube switch it has happened, but it has.  She's been pretty sensitive of that area when we clean it for the past two weeks, so two days ago, I pulled back the plastic cover and I really looked closely.  That's when I saw this little flap of granulation tissue near the tube.  I called the GI and (long story short), he said I could go to the pediatrician.  So we went yesterday.  Dr. M poked and prodded (which made the site bleed) and eventually pulled the flap off with tweezers.  He wiped a little antibacterial ointment on and said to call if continued to bleed or was bothering her.  Well, the site looks great.  No more bleeding and much less goopy. 

Then in the middle of the night last night, Seamus woke up with croup.  Pretty scary. Not much of a cough, but really labored breathing.  Very raspy.  He wasn't sick and then all of a sudden this happened.  I took him to see Dr. A this morning and she prescribed a steroid to give him at bedtime tonight.  She said the second night can be worse than the first.  I'll also do the steamy bathroom and cool night air tricks if he wakes up again tonight.  (Although, it's been so cold we had to turn the heat back on.  I saw snow flurries in the forecast for overnight.  Crazy!)  Anyhow, Seamus seems to be doing pretty well.  He's a little cranky and his appetite is off.  His voice is totally froggy/hoarse and it's pretty cute.  The doctor said that his barking cough (which isn't often) will break up and sound more mucous-y and basically this will turn into a cold.  I asked if Eve could get it and she said that probably not the croup because she's older, but that she might get a cold from him.  I think his timing is pretty good, because we're all home for the long weekend anyhow.  He can rest at home and not infect anyone else at daycare. 

Happy Birthday, Uncle Scott!

Last weekend, we drove down to NJ for a surprise party for Jim's brother.  It was a whirlwind weekend (less than 48 hours) because I was in the middle of exams.  The party was lots of fun, and it was awesome to see family and friends (shout out to Frank and Virginia!).  Seamus hammed it up and Eve was beside herself with happiness.  She especially loved it when PaPa dropped a piece of cake on his lap.  She was literally shaking with laughter. 
Here is the only picture I managed to get with my phone:

 I know other photos were taken (with real cameras), so I'll post them if I get copies. 

Here's a shot of Pop and Seamus from the morning we left:

 And here are two shots from fooling around yesterday at home:

new gj scheduled

Everyone is doing well.  Seamus had a pretty bad fever a few weeks ago, but fortunately, Eve never got it.  She has been doing really well - happy and healthy.  I've scheduled the replacement of her gj tube next month.  It needs to be replaced every 6 months.  This will be the first scheduled replacement, so we have the opportunity to order a low profile gj.  They don't keep them in stock, so they need about a week to get her size in.  I'm not sure what the tube will look like, but I imagine it will look more like her mic-key button when she had just the gtube.  Right now she has this long tail that hangs out of her stomach that her feeding pump connects to.  Granted, she is connected to her feeding tube 20 hours a day.  It would be nice when she is not connected (e.g., during baths) to not have to worry about where the tube is when you transfer her.

bathroom redo

We are slowly but surely making improvements to our house.  The bathrooms have been in desperate need of help, but took a backseat to the electrical work, new roof, wood stove, and new front door.  While the master bathroom is in a sorry state, it's going to take lots of work and lots of money.  The hall bathroom was much more manageable, and something we could easily do ourselves (read: Jim could do himself). 

Here are some before and after pictures:

I know it's been too long since I last posted.  It's been crazy lately.  But the semester has ended and I will have more free time to post.  Here are three pictures to tide you over:

My birthday in April

The mama bear and one of her cubs in our neighbor's yard

JoJo loves a birthday!