Thursday, December 31, 2009

Living Dangerously

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



Update:
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.





Saturday, November 28, 2009

Happy Thanksgiving




The evening we left our house to go visit the relatives for Thanksgiving, we noticed Mikan's nose running. (He looks a little out of it in the picture above) It hasn't stopped and he's now developed a cough. His activity level remains the same, but his secretions have increased. We've been giving him Xopanex since we returned home last night. We haven't capped him in a few days.

Last night Mikan slept for an hour in the car, and was rejuvenated for the evening. He didn't fall asleep until midnight. John thinks it was because he read him "Five Little Monkeys Jumping on the Bed" while we were trying to get him to fall asleep. On the bright side, Mikan learned the "jump" sign last night.

Mikan's trunk strength is improving. He now enjoys ramming his Radio Flyer car into our baseboards.

Saturday, November 21, 2009

News Story and Mom of the Year Dinner

I didn't win Mom of the Year, but we had a wonderful time. I wanted to post the link to the news story of Mikan. They didn't upload video to the website, but here is the link to the story:

WSBT Story







Aunt Debbie, Nina, me, Alexa, Angela, Aunt Cindy



Me and Angela (my wonderful friend who nominated me for this honor)




The March of Dimes Mom of the Year Award Dinner was a blast! I saw a lot of family and friends, and some of Mikan's nurses even attended. The winner of the award lost a child after three months in the hospital. She was born at 27 weeks. All of the finalists had pretty profound stories. It was an honor to attend.

Mikan's g-tube problem is solved for now. He now has a fully functioning g-tube in his stomach without tape wrapped around his abdomen. We also have a back-up. Hopefully these last longer than the first ones.

Friday, November 20, 2009

G-Tube Dilemma

Lately we've been having problems with Mikan's g-tube balloons bursting in his stomach. We've gone through two balloons in three weeks. Each one is supposed to last three months. Our home care company warned us that they would have to start charging us whatever our insurance wouldn't cover. They are $219 apiece. Well, we ordered a back-up a week and a half ago when the first one burst. I called to follow-up about not receiving a back-up twice after my first phone call. Guess what? Last night our back-up burst. Why wasn't one delivered? I'm not sure. No one thought it was immediate enough of an issue to bring one out yesterday evening, so this is what we had to do to Mikan's stomach to make sure the damaged one didn't fall out.



Today I have to run into South Bend and miss Mikan's PT in order for him to get a new g-tube before the weekend. No one was driving out to our area today, so we were informed we had to pick one up ourselves. John's at work and I am leaving for Indy in a few hours, so as soon as his home care nurse arrives, I am off to get a new g-tube. Why do they keep bursting? We are going to try and return the damaged ones so we hopefully don't have to pay. Sigh.

Monday, November 16, 2009

A Trip to the Dome

Mikan and Dad at the Golden Dome



Mikan in front of Touchdown Jesus



Mikan checking out the football stadium



We took advantage of what was possibly the last warm day of the year by walking Mikan around Notre Dame. We had to delay his nap, so we drew a little attention with a few of his stroller tantrums, but overall he enjoyed getting outside and seeing the sights. Mikan has no comment on the Notre Dame game last Sat., but he's happy for the Colts.

Mikan's sleep schedule is still a little erratic. He wakes up sometimes before 5 a.m. no matter what time we put him down in the evenings.

Thursday, November 12, 2009

Mikan's Signs




Mikan showing off a few of the signs he's learned recently. I'm not sure what he's doing with his hands in between signs. It seems like he's always practicing something. We're pretty proud.

Today I took Mikan into a Child Development class at the school where we work. The class checks this blog as part of their curriculum. We dragged the vent with us to show them how it worked. Lugging that machine around made me appreciate all over again that he no longer needs it.

So far Mikan's been staying healthy. He got his first Synagis shot this week and he is due for his second H1N1 shot next week.

Sunday, November 8, 2009

Capture the Flag and Tractor Rides

Mikan has finally been sleeping better at night. We are trying to get him to take only one long nap. We aren't completely successful yet-he prefers sleeping in hour spurts and staying up late- but hopefully with time it'll work itself out.

On Saturday we went to Grandma and Grandpa's house for their annual Capture the Flag extravaganza. As is typical, after two rounds of play and several arguments about the rules, there is still a debate about who actually won each game. Mikan chose to sleep by the bonfire instead of hash out the intricacies of the game.

Early in the day, Mikan screamed the whole time he rode with Grandpa on his tractor. But later Mikan and I got to ride on a combine and harvest some soy beans with a neighboring farmer. He loved staring out the huge windows and watching the blades turn. He's set his sights higher I suppose.

Mikan's signing has really taken off. He just learned "ice cream" this weekend and he's pretty proud of himself.

Sunday, November 1, 2009

Happy Halloween

Although Mikan opted out of collecting any H1N1 infested candy, he still dressed up and partied at Nina and Poppi's house, then spent the night at Grandma and Grandma's, falling asleep watching Notre Dame beat Washington State.

The last two mornings Mikan has woken up at 3:45 and refused to lay back down. I'm not sure how he's had the energy to do anything this weekend. We don't know exactly what the problem is. Last time he wouldn't sleep he had an ear infection. But he doesn't get fevers with his ear infections, so it's hard to tell exactly what is going on. So, we'll just wait it out I suppose. In the meantime, we could all use a little more shut eye.



Sunday, October 25, 2009

Can Mikan See Autumn?

We have a HUGE sycamore tree in our backyard. The leaves are bigger than Mikan's head. We tried to capture the size in a picture, but Mikan wasn't as excited about the leaf as we were.



We had to sneak it next to him when he wasn't looking.



After several tries, he finally decided it was ok to touch it.



Last Thursday John and I attended the Northern Indiana Division's Annual March of Dimes Chef's Auction. The coordinator put together a collage of Mikan's pictures that were displayed along with several other collages of babies. I was asked to give a brief update on Mikan for the event, another ambassador family spoke, one of Mikan's neonatologists received an award, and several meal packages were auctioned off to benefit March of Dimes. We had a nice evening out enjoying appetizers from South Bend's best chefs. From what I understand, the auction was pretty successful.

We just got Mikan's glasses back, but they don't fit him well at all. We have to take them back to get readjusted. I'm also considering getting a second opinion about his prescription. It changed so drastically that I am curious to see what another ophthalmologist might prescribe. Right now his presciption reads: Spherical O.D. -10.00, O.S. -11.00, Cylindrical O.D. +3.50, O.S. +3.50. I'm not sure what all of this means, I've just been told that it is severe. He seems to enjoy being outside even without his glasses, I'm just not sure how much of it he sees.

Wednesday, October 21, 2009

Chillin' and Playin'

We're still waiting on Mikan's glasses to be finished, but he doesn't seem to be missing them.

Mikan watching a Signing Time video.



Playing in the tunnel his PT let us borrow.


Mikan is still healthy so far even though H1N1 is now rampant at the school where John and I work. We are doing our best to stay healthy for Mikan. So far so good.

Thursday, October 15, 2009

Doctor Appointment Updates and a Little Karaoke

Mikan's glasses prescription has worsened enough that we need to buy some new lenses. His doctor said he wasn't sure if his eyes actually worsened, or if he just couldn't quite get his prescription correct the first time because Mikan was so young and wiggly. Either way we are buying new lenses. John had a few cynical words to say about that after we got home.

Mikan's trach changes have been a little difficult the last few times. This is unusual for him. His ENT said it may be because he is getting bigger and stronger, therefore he can constrict his airway easier when he is mad. It also may be because he has something growing around the inside of his stoma. Hopefully it is not the latter. We're supposed to monitor it for the next few weeks and call her to let her know how they go. She thinks Mikan will need another scope done to check out his airway again sometime in the next several months. Meanwhile, we're supposed to increase our capping for the next 6-8 weeks, till we see her again.

Mikan has been trying to cruise. Notice the bruise on his forehead. This is a short video of an attempt and then a fall.



John has been teaching Mikan to read not only with baby books, but also online karaoke. Last night was Bon Jovi night. I don't think John knows I'm posting this video...yet. If Mikan's malacia doesn't prevent him from being a star on American Idol, then the genes he inherited surely will.



Also, please pray for Maggie. She is close to Mikan's age with more complex health issues and her parents just found out that she contracted the swine flu.

Sunday, October 11, 2009

Apple Season



Even Mikan is enjoying apple season. Although he only licks them, you can tell he has a good time. He prefers cupping the entire apple in his two hands rather than picking up individual slices.

Another exciting update: Mikan now signs "mom" and "dad." He usually practices these signs throughout the day; he hasn't yet used them to ask for one of us. He's probably more at the mimicking stage; nevertheless, we're pretty happy for him.

Like most of the country I think, we have been wondering where the fall season transition to winter went. All of our walks this month have us bundling up in winter gear. Mikan isn't too thrilled about the mittens and hat, but he's getting used to them.





We have an eye doctor and ENT appointment this week. Hopefully it's all good news.

Tuesday, October 6, 2009

New Fall Experiences

Since the last post Mikan has...
-Fed leaves to a goat
-Watched someone play a banjo, fiddle, guitar, mandolin, and drums
-Helped make homemade cider
-Touched a horse
-Learned the dad sign
-Started to cruise along the couch
-Gotten a little better at emulating noises
-Tolerated swinging at the park without someone holding his hands

He has levels with his signs:
Uses frequently and appropriately-Up and Eat
Uses randomly-Dad and more
His sign for mom is simply reaching towards her and whining

We have gone for a walk each night over the past week. We are trying to toughen him up a little bit.

Tuesday, September 29, 2009

Weekend Update

I went to Indy for a March of Dimes Mom Photo Shoot on Saturday. Then on Sunday we had the NICU reunion. As you can see, Mikan still is in his clingy mommy/daddy phase.



Despite his attitude, I still think people were happy to see his progress.

Wednesday, September 23, 2009

Therapy and Roid Rage

Mikan had his newborn follow-up clinic evaluation today with some of his old NICU girlfriends. He did pretty well with them until the end. He likes opening doors now and all he wanted to do was walk to the door and pound on it. Mikan also had ST and OT today, he's a trooper. His evaluation showed significant improvement. He is at least keeping pace with his adjusted age for his cognitive skills. He is a little behind in everything else, but we're floored that he is learning new things every day.

He has finally been sleeping better at night. Whatever he was fighting seems to be leaving his system. And we're done with the temporary steroid boost. I'm thankful for that because I've been attributing his lack of afternoon napping and crabbiness to some roid rage.



Mikan LOVES the computer. We can't have it on when he's in the room.



Mikan's ritual of "eating" food. (Putting it in his mouth and sucking all the flavor off, then spitting it back out...This was a tortilla chip goatee)

Saturday, September 19, 2009

A Plethora of Problems


Mikan found a green bean in our garden that we let grow a little too long.

After a week straight of going on no more than 2 hours of uninterrupted sleep at a time, I took Mikan to see his pulmonologist and ENT. Both concluded that he probably had picked up some kind of bug since surgery that may have been resistant to the antibiotic he was taking. The constant cough probably wasn't allowing his airway to heal normally either. Oh, and he has an ear infection...and he's getting teeth...and his g-tube is really sore...and he is growing more granulation tissue on the outside of his trach stoma, leaving it really tender. No wonder he's been crabby. But he finally has been sleeping better the last two nights. I hope this is a good trend. His doctors put him on a steroid for 5 days to help him heal (I thought we were done with those...), Augmentin to hopefully kill his bug, Xopanex breathing treatments, and a steroid cream for his granulation tissue (We used some silver nitrate on it at home too). Oh, and he got a flu shot and blood drawn that day as well. Poor guy.

His pulmonologist gave us a little depressing news, although we'd been predicting it anyway. He doesn't recommend that Mikan gets his trach out this fall, even if he is ready. We are rapidly approaching cold and flu season and he wants to be cautious, which is understandable. With this new illness delaying our capping, I don't think he's going to be ready for awhile anyway.

Sunday, September 13, 2009

So Tired


Ever since his surgery Mikan has been sleeping horribly. The first few nights he was waking up in the middle of the night for hours at a time completely inconsolable. He also hasn't been napping. This makes for a tired mom and dad. Each night has been getting better, but we haven't had a chance to really catch up yet on our sleep. On a positive note, Mikan has been tolerating his PMV and his stoma irritation is finally diminishing.

Mikan is also signing "eat." Although it appears that he attempts other signs as well, I would say he only knows "up" and "eat" consistently.

Today we had family pictures at John's parents' house. The first time Mikan was expected to sit with someone other than John or I, he completely lost it and wouldn't calm down for the remainder of the pictures. Every single picture he is crying or trying to rip his glasses off, or gagging on his own saliva from being so hysterical. Can't wait to see those.

We also had a photographer at our house last week who wanted to take pictures for the March of Dimes chef auction and Mom of the Year dinner. It was the day after surgery and Mikan had only a thirty minute nap all day. I expect similar results. He's a mamma and daddy's boy lately.

Tuesday, September 8, 2009

Still Talking About It...


Mikan spent most of his early morning flirting with the outpatient surgery nurses and chewing on plastic silverware in the hospital lounge. After the procedure we received some pretty good news. Mikan's ENT is still talking about getting rid of the trach! The fact that we get to discuss those plans is so exciting for us. She was unable to downsize during surgery because more granulation tissue had grown inside the upper airway where the trach rubs, and she needed to remove it. However, she didn't have to use the lasers and she just pushed it through his stoma. His lower airway looked great!

So, where do we go from here? Well, she has given us the order to experiment with capping the trach at home once he heals from this procedure. After that she wants to take a look at him again in her office. She mentioned sleep studies and possibly another scope before she removed or downsized, but at least we are moving in the right direction! Thank you God and thanks to everyone who has been praying for Mikan!

Saturday, September 5, 2009

Nutter Butters and College Football

Mikan found another favorite food to lick.




As a faithful Irish fan, Mikan thinks this is the year for Notre Dame football. 35-0 is a nice start.



We have another shot at a scope on Tuesday. Mikan's feeling better so we're assuming it's a go. Thanks to everyone for your continued prayers.

Wednesday, September 2, 2009

What do Crash Test Dummies and Mikan have in Common?

WARNING: If you don't know the song "Mmm Mmm Mmm Mmm" by Crash Test Dummies this post will not make any sense and might repulse you. However, I figure I needed to balance out the beautiful Jenna's "Apples and Beaches" post with a little guy post. Believe it or not, Jenna made me tone this post down quite a bit. Please comment if you want the unedited version. Or comment if your leaving this blog as a result of this post.


Once, there was this boy who's sac broke early and his mom went to the emergency room.
But when we was finally born he was twenty-eight weeks old and really small.
They said that if they knew why they would a win a Nobel Prize.

Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm

Once there was this boy who, wouldn't eat at the table with all the other boys.
But when we finally made him, he would just taste the food and then spit it out.
They couldn't quite explain it, they said that it was from the nose tube.

Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm


Both sac breaking and eating weren't bad, cause one time he had it worse than that.

Once there was this boy whose parents hoped he'd be regular at least every day.
And when his diaper was clean for four days, he got glycerin to help him out.
He couldn't quite explain it, it was just stuck there.

Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm

Saturday, August 29, 2009

Apples and Beaches







We decided to take Mikan out this weekend to pick some in season fruit and show him a beach for the first time. Yes, on August 29th, we dressed ourselves in several layers of clothing to visit Lake Michigan. This has been the coldest summer in northern Indiana that I can remember. But the weather today kept most people away from the beach, so we had it mostly to ourselves.

Mikan has finally been feeling a little better. He has started wearing his PMV again, and I think he is now trying to make up for lost time with his sounds. His latest skill is pointing and climbing to a standing position in his bed.




Tuesday, August 25, 2009

2 Week Delay

Unfortunately Mikan's condition hasn't improved enough, so his surgery was canceled till September 8th. Although he no longer has a fever, he still has a chronic cough unless he is given a breathing treatment every 4-6 hours. The antibiotic doesn't appear to be doing anything, so he probably has some form of viral pneumonia. He has also picked up his gagging/wretching again, which is a little worrisome, but we're hoping he will ride this out soon. He's still working hard on all of his skills and enjoys reading his books while getting a breathing treatment. Thanks to everyone who has been thinking and praying for our family.

Saturday, August 22, 2009

Something

On Friday evening we took Mikan to the doctor because he was coughing up a lot of mucus and appeared to have a slight fever. The doctor noticed he was weezing, therefore he is getting Xopenex and is on azithromycin. He needed the breathing treatment at 2:00 am last night. Here is Mikan frustrated with yet another thing wrapped around his neck.



But despite feeling crummy, he couldn't help but smile for the camera.



Hopefully this doesn't set him back for his scope. Right now it is scheduled for Tuesday. If everything looks good, he may be downsized.