Thursday, December 31, 2009

Living Dangerously

A video from Christmas: Mikan trying out Nina's playset.

Mikan still has a lot of secretions, and we haven't been able to cap him. He has an appointment with the ENT next week so we will at least be able to get his ears checked again. We will also be scheduling his next scope at that time.

After a huge ordeal that I don't feel like detailing in this post, we finally ordered Mikan a different g-tube that does not have a balloon. It will be changed in the doctor's office by a pediatric GI that we are going to see in Ft. Wayne as soon as the new tube arrives. Hopefully we will have more success with this one.

Wednesday, December 30, 2009

Christmas 2009

Mikan had a wonderful Christmas visiting with family. For Christmas, Mikan received some clothes, a picnic table, a few signing time videos, some great books, and a cold with a double ear infection. Unfortunately Mikan has needed O2 for a few nights this week (which hasn't happened in several months). He has been pretty miserable, but hopefully his antibiotic will start kicking in soon. We haven't even been able to use his PMV because his secretions are so copious. We've still been taking him for rides on his sled since he loves it so much. We are supposed to get some lake effect snow this weekend (1-2 feet), so we may take him on a small hill to sled. Last week Mikan visited his pulmonologist who agreed with the ENT about Mikan's breathing. He said that it looks like Mikan works harder than he should, but that doesn't necessarily mean we need to wait longer to get his trach removed. He wants to get a blood gas taken when Mikan takes his first waking breath to see what his levels are when he is in his deepest sleep, when his airway muscles are most relaxed (We already know that his levels are fine during the day). This will be difficult to obtain, but that is the standing order right now.

Wednesday, December 23, 2009

Merry Christmas

My caption for this picture was, "Merry Christmas."
Jenna's caption was, "My face is cold, but I love sledding."

Sunday, December 20, 2009

Early Christmas Break Present

So at around 5:50 am Friday, Jenna was doing the morning Mikan routine. I was starting the fire. She says, "Mikan's G-Tube is out."
I say, "Put it back in."
She says, "I don't know where it is at."
So I ran to get the emergency bag with the extra g-tube. The hole in his stomach was pretty dry by this time, we don't really know how long the tube had been out. Jenna took the new g-tube and tried to force it into his stomach while I held down his arms and legs, but to no avail.

At this point, I was thinking, "Is he making the decision to eat all of his food today? Probably not, as we currently rejoice the fact that he licks milk."

We then contemplated further action. We knew if we didn't get it in, we were headed to the ER and who knows what would have happened next. Maybe some topical anesthesia, but we didn't want to make that trip. Then I took a cotton tipped aplicator (one ended q-tip) and put it into the g-tube to give it some rigidity to get into his closing hole.
I tried a couple of times, then finally got it in.

It was now 6:00 am. G-Tube back in. Jenna's Christmas Break was off to a great start.

We're not sure how long the g-tube had been out. We don't know if that was the right thing to do. We are probably going to see a G-I guy sometime in Indy or Fort Wayne. However, if you are a G-I guy and you want to do a free house call instead of having us schedule an appointment, please let us know.

Monday, December 14, 2009

Pokagon Adventure

This weekend we went to Pokagon with John's family. Mikan had many firsts:
-First time in a big person pool (Although we had to be VERY careful, he loved splashing his feet and hands around)
-First time seeing someone toboggan
-First time staying in a hotel
-First time walking on a frozen lake

Mikan now likes to take sips from his Pediasure bottle that we use for his g-tube feedings. But he insists on sticking his tongue inside the bottle and lapping it up like a dog, so I'm not sure how much of it he actually swallows. We have to hold it for him so he doesn't drown himself.

We visited Mikan's ENT today. She said with his trach cap on he still sounds loud. She says that this may be because he is trying to breathe around his trach, or it may be that his upper airway is a little floppy still. She wasn't pleased with this, although she did say that the cap didn't seem to be bothering him too much. He has mild retractions all the time, I think that may be his norm. Anyway, she is going to do another scope in feb. with his pulmonologist to see what the area looks like above the trach and see what decisions need to be made before the summer if we can still possibly get it out. His pulmonologist will study his cap breathing next week when we go for a visit.

Tuesday, December 8, 2009

Keep on Truckin' Updated

Mikan eating some cracker crumbs...the only food he eats with consistency besides ice cream.

Mikan is now on prednisolone to help kick whatever he's got. We ended up taking him in on Sunday and he had an ear infection (still no fever), so now he's also on Augmentin in addition to his feedings. We haven't seen much improvement. He still has a steady cough and a clear runny nose, but his attitude is fine.

Some recent new signs are "bike," "hot," "book," "work," and "signing time."

Next week we visit the ENT so update her on his airway status. Since we haven't been able to cap him these last few weeks, I'm only anticipating another waiting period before we even think about scheduling a scope.

The weather is getting cooler here, but we've only had a dusting of snow. Mikan can't wait for the lake effect to get started so he can go sledding!

*Please pray for John's cousin Nick and his wife Jenny who just delivered their second child, Henry, at 28 weeks gestation. So far he is needing minimal CPAP support, so we are praying for his continued progress.

Friday, December 4, 2009

A Sick Santa

Mikan is still sick, therefore he didn't really cooperate for his Christmas pictures today. Most of my pictures are blurry because he is either mid-yawn or mid-cough, like the one above. He hasn't shown any signs of infection, yet he hasn't improved either. He plays with his ear every once in awhile, but he isn't running a fever or complaining. I'm not sure if he has an ear infection or not and I hate to drag him to the doctor's office again to check, especially since I think that is where he picked up whatever this is in the first place. We need an ENT in the family. Anyway, we're just continuing to monitor him.

It is amazing to watch how many new signs Mikan is picking up each day. He still whines when he wants something, but when prompted, he communicates using signs. Hopefully we can reduce the whining sometime soon.

We found a way to distract Mikan during his breathing treatments. Thanks to Aunt Cindy and Uncle Jim's birthday card from March, Mikan is learning the chicken dance.