Monday, June 29, 2009

Mikan's Bronchoscopy

Today we left my cousin's (thank you Darcey and Mike, we're sorry we showed up so late) house in Indy at 5:30 am for Mikan's 7:30 am surgery. Surgery went very well. However, the long term results are yet to be determined. Jenna and I anticipated there would be no removal of the tissue blocking the airway today. However, and to our pleasant surprise, the scope discovered that much of the blockage that was thought to have been caused by reflux had disappeared. Our doctor attributes this disappearance to the use of Prevacid for the last month or so. Good News.

While the blockage from the supposed reflux was gone, there was still scar/granulation tissue just above the tracheostomy opening in his airway. The surgeon was able to cauterize this relatively easily, without the use of a laser. He gave us some nice pictures of before and after airway cauterization.

Image One:
Airway blocked by scar and granulation tissue. You are looking down his trachea from above just below the voice box.

Image Two:
Airway opened up after the cauterization. If you look closely, you can see the top of the trach tube as it starts to go down towards his lungs.


This second picture looks very good. However, we are not out of the woods yet. As the second image looks much better than the first, it is still not ideal. The typical airway would be much smoother around the sides. Two known risks are still present: airway collapse, and having a strider (odd gasping like noise when breathing).

The plan forward is this:
1.) Wait for him to recover from surgery.
2.) Around July 4th, use Passy Muir Valve as much as possible.
If he tolerates Passy Muir valve, then the upper airway is in good shape. Mikan has a sleep study done and has the trach come out.
If he does not tolerate the Passy Muir Valve, then there are still issues with the upper airway and we adapt accordingly.

Even though Mikan was only going on 6 hours of sleep, he handled the day very well. We wish our state legislators could as good of a job as our ENT did today.

This picture goes out to all the non-artists out there. This is the picture our ENT drew for us before we went to the recovery room. Notice how he misplaces the location of the tracheostomy opening, scratches it out, then redraws it. He really do appreciate him taking the time to explain things to us.


Thank you for your thoughts and prayers, we are glad to be back in Northern Indiana.

Friday, June 26, 2009

Last Minute Details

Camera to computer connection still out of commission. Some lengthy failed attempts to resolve the issue fuel my frustration, but I'll figure it out soon enough.

I called Riley to check what time Mikan's surgery was on Monday. They don't arrange the times till the workday before in case they need to schedule emergency surgeries at the last minute. The receptionist proceeded to tell me that Mikan was scheduled for surgery with some doctor we had never heard of. Needless to say, I was a little upset. When I explained which doctor was supposed to be seeing Mikan (the same doctor who performed his tracheostomy and with whom we've been in contact with over the last two months periodically discussing his condition), she said I might have to reschedule the surgery if we wanted him. However, before I completely lost my temper, they rearranged the schedule and added Mikan to the morning surgery list. He will now be the first one seen by the right doctor. I can't imagine what I would have done if we had walked into the hospital and some random doctor whom we've never met (who apparently specializes in adults) introduced herself as Mikan's surgeon. Apparently the original doc's schedule changed unexpectedly for the afternoon and he couldn't be in surgery, so they moved anyone after a certain time to see this new doc. Well, not ok by me. So we have to be at the hospital at 6 a.m. Monday morning.

We appreciate everyone's thoughts and prayers during surgery Monday. We are hoping for good news (a minor laser surgery and the doc telling us reconstruction is not necessary).

Wednesday, June 24, 2009

Mom's Mistake

We seem to be having problems with transferring pictures and video to our computer (Hint hint Mom and Dad-we'd really like a new camera for Christmas). So I'll just give a quick update and we'll post some new pics later. We don't have a lot of new news. Mikan's scope is on Monday, so we will know a lot more then.

Yesterday John was supposed to come home from work at 1pm. He didn't. He didn't arrive home until 2pm. The plan was that we were going to cut Mikan's hair and then do bath and trach care before Mikan's PT session at 2. John has cut Mikan's hair every time. Well, when John didn't show up, time was running out, and I decided I needed to get it over with...so I cut it myself...except I thought John didn't use an attachment...apparently he used a #2...

A few buzzes into the haircut, I looked at our nurse and said, "You know, I don't remember it looking this short last time John cut it." Sure enough, Mikan's bald now. He looks like a cue ball. John thinks it's great. They look like twinsies now. And he knows that he NEVER would have been able to talk me into shaving it all off. I was horrified.

Next school year I'll use this story with my students when we talk about situational irony.

I blame John.

Friday, June 19, 2009

Father's Day 2009

Mikan has had a small reaction to his chicken pox vaccine. There are about 5 small pox on his injection site. It's supposed to go away in a few days.

We haven't used our AC yet this year, and Mikan is adjusting pretty well. Since our house is on a slab, if he ever gets real warm, we just set him on the ceramic tile to cool him off. Jenna likes the heat. I like that Jenna likes it.

Father's Day 2009, my second. I suggest the book, "Uncommon" by Tony Dungy as a father's day read. He does a good job of telling engaging stories about the good that is going on in the world and reaffirms that good guys can get it done.

For Father's Day I am looking forward to surfing on the lake. Hopefully, there's a little bit of wave action, we'll see.

Question: What are the attributes of a good dad? I have been wondering this. A common statement made by parents is, "Yeah we were really careful with the first kid, then by kid number X, we really let them go." Same dad for both kids, yet apparently different styles.

My number one father effective thought is:
A good dad treats his wife well, makes sure the kids don't kill themselves, and has kids own their own mistakes.
-At a point in the future I may rescind the second part of this statement, but for now I believe it.

What is your
"A good dad _______________________________."

Saturday, June 13, 2009

Mmmm...Fruit Season

Some fun with "eating." Mikan and John with strawberries and clam chowder.




Mikan doesn't appear to be as excited about fruit season as we are. In the video below, he expresses his apprehension with fresh strawberries.



Mashing them up for the g-tube just isn't the same. You can't taste them. That's ok. More for us.

Here he finally warms up to one.



Mikan's pediatrician told us this week that she is going to request another round of RSV shots for Mikan for the winter. She thinks that he will have enough medical needs still that our insurance should cover it. We'll see.

Mikan now weighs 20lbs 4/12 oz. He is between the 3rd and 5th percentile for his actual age (15 months). In addition, the pediatrician confirmed what we all had assumed for the last six-eight months...Mikan has a ridiculously huge head. His head circumference is in the 75th percentile for his actual age. I hope that big head doesn't give him a smart mouth when he starts talking.

Tuesday, June 9, 2009

Recent Visits

Mikan and Ephrem (my high school/college friend's new baby)



Doesn't Mikan look like a beast compared to cutie Ephrem? I forgot babies were that small and cute.


Mikan and his Aunt Annette. They got some cuddle time this weekend while she took a break from her two boys.




Mikan with Aunt Annette, cousin Maria and JT, and new cousin Tyler. Mikan was more interested in JT's face than the camera.




This is Mikan playing in his pool. He loves splashing around in it. I'm pretty sure it's good for him (leg/back strengthening or something...)






Some updates:

Mikan's g-tube has been looking fabulous still. It continues to leak, but the granulation tissue is manageable, and we haven't needed to use silver nitrate in a month. Most importantly, it doesn't cause him nearly as much pain. In fact, he's recently become interested in playing with it! This improvement is important because his oral feeds remain terrible. He will put anything but food into his mouth.

After 3 whole weeks, we are still off the vent! We had another blood gas done in the home last week, but haven't got the results yet. Mikan has needed 02 at night every once in awhile, but for the most part, he is using his own fully functioning respiratory system (kind of).

We see the pediatrician and speech therapist tomorrow.

Friday, June 5, 2009

A Ride Through Town

This morning Mikan visited Daddy at summer school. I took him in to visit with the office staff of our school after I dropped off my school laptop for the summer, then we stopped by John's summer school classroom. This was Mikan's first adventure inside of a school. We have been avoiding them for a long time. In fact, John and I would shower and change our clothes when we got home from work before we even touched Mikan. However, Mikan is growing healthier and should be able to tolerate more outings like this one.

This evening Mikan took his first ride in the bike trailer we bought him. I think it was a success. It can hold two kids, but with Mikan's suction machine, emergency trach bag, ambu bag, and biox machine, it was pretty full.

Mikan held tightly to his biox machine and made sure his levels were satisfactory during the ride.






Mikan responds well to tickling lately. He opens his mouth really wide and looks like he is trying to laugh. It is fun, but also sad. We really haven't been able to hear him laugh yet. Even when he was tolerating his Passy Muir Valve, he wasn't developmentally ready to laugh. Now I think he probably would laugh if given the vocal opportunity. Sure, not hearing the crying can be nice sometimes...but never hearing cooing, or excited babbling, or laughter is a huge loss. I look forward to the day he can tolerate the PMV better and start making sounds.

Wednesday, June 3, 2009

Reflux?.....Really?....



Mikan's local ENT confirmed our decision to go to Cincinnati for a reconstructive surgery. She said, "Dr. Cotton is the best in the country, if not the world," and "If it were my son, I would take him to Cincinnati in a heartbeat." So, at least we know we'll be in good hands if we have to go there. Today during our appointment, Mikan's ENT just reiterated that she saw scar tissue and a lot of swelling on all sides of his airway when she did his scope. She was hoping the Prevacid would help heal it, but with a Nissen (and no other signs of the Nissen being loose), she had a healthy skepticism about her. I've always doubted the reflux explanation...We'll just have to wait and see!

Mikan's PT said his back is getting straighter when he sits up. Hopefully this will soon turn into some sitting up and crawling. She seems to be pretty pleased with his progress.