Sunday, May 31, 2009

Mmm...Rocky Road

We've decided that if Mikan needs airway reconstruction, we are going to take him Cincinnati Children's Hospital. They have a worldwide reputation for treating airway obstructions, and they perform 150 reconstructions a year. Riley does 3. We are just beginning the process of preparing for this transfer should Mikan need it. We pray he won't need it; however, we want to be prepared by the end of June if he does. We have also heard horror stories about children who have had several laser surgeries only to keep regrowing the same scar tissue. If Mikan has a significant amount of obstruction, I think the recommendation will be to skip the surgery in June and plan for reconstruction. I'll just be praying for a miracle vanishing of all scar tissue while we wait for the end of June.

Mikan enjoyed his visit to Albion/Ft. Wayne yesterday. In the video below, he "explores" remnants of my rocky road ice cream while practicing his sign language.

Thursday, May 28, 2009

Busy Week!

John and I are pretty exhausted. It is our final week of work for the summer. The last day for students is tomorrow. John begins teaching summer school Biology next week though till the end of June. No rest for the weary. Mikan has also gotten into this horrible habit of waking between 4:30 and 5:30 in the morning, ready to play, no matter what time he goes to bed. I also have to suction him pretty frequently at night when he is off the vent because his secretions (no matter how small) rattle loudly in his humidity filter and keep everyone, including him awake (the vent circuit would hide this noise). Now going to bed at 9 (which was 13 minutes ago) is essential for my sanity.

Mikan has remained off the vent for 12 days now. His pulmonologist called today and ordered another blood gas in one week. My gut tells me that we are ditching the vent for good. He is doing such a great job breathing without it. Please pray that we don't have any major setbacks before/after surgery in June.

Mikan is getting stronger each day. He now likes to rock and scoot his legs a little while on hands and knees, but he still keeps his hands still.

I hit Mikan in the face with his fisher price basketball today. I was horrified, but he was unphased, so I think that means he's ready for face-to-face combat with JT.

Saturday, May 23, 2009

Memorial Weekend

Mikan boy is still off of the ventilator. However, he did require a little oxygen to maintain his sats on Wednesday and Thursday night. He had a blood gas drawn on Friday. We don't have official results yet. We think it was good based on the numbers Jenna saw on the initial report.

Mikan now has a little pool that he can sit in or jump in while in his Johnny Jump Up. He was crying for awhile until he sucked it up and started jumping around in the water and liking it. He is getting better at solving his own problems. We foster "Mikan Problem Solving" by attentively abandoning him when he thinks the answer to his problem is crying. Because crying is not the answer, it just gives him some time to think about an answer. Mikan doesn't cry, he thinks with tears.

Finally, Jenna and I enjoyed a couple of hours away from home at midday on Saturday. We took the surfboard to Lake Michigan on a calm day. We paddled around. The board is pretty buoyant. We tried standing up on the board...

Another surfing video...

Grandpa Gensic compares Mikan to Drew Carey (and after last night's shot, "Cleveland Rocks")...

Thank you to those who serve our country!

Wednesday, May 20, 2009

I am ecstatic to announce that Mikan has been ventilator-free for 48 hours now! This is the first time Mikan hasn't needed breathing support in almost 15 months (his entire life). Last night he didn't even drop his sats. We saw the pulmonologist today, and he said he wanted a blood gas done because he "wasn't as comfortable" as I was. He didn't really have a reason, he just wanted to be sure that Mikan was doing ok on his own. He wants the blood gas to be done in the home so we don't have to drag Mikan to the hospital, but I'm not sure if our insurance pays for this. The Dr. didn't seem to think it would be a problem. He is also trying to find a medical supply place to order an oximeter with respiratory leads that records Mikan's performance overnight (heart rate, biox, respiratory rate). In the meantime, we are allowed to keep him off the vent as long as he appears comfortable. It is liberating being able to leave the house without the ventilator.

Monday night, in the middle of his feeding, Mikan pulled out his g-tube (the balloon had deflated). He immediately began screaming and formula and stomach juices spewed everywhere. I've had to replace the g-tube in an emergency situation before, but this time, Mikan had grown much bigger and stronger, and no one else was home. I tried to put a new one back in, but he kept bearing down and scrunching his stomach up so the hole was smaller, all the while wailing because of the pain. When blood started seeping from the stoma, I asked myself, "Do I call 911?" Then I had to remind myself that "No, this was not a 911 emergency and I am totally capable of taking care of this on my own." I ended up calling my trusty nurse friend Rhonda who lives close by and she ran over to help. However, I was able to insert it before she arrived though (using one arm to hold down both his arms and legs...pretty tricky), and she helped me clean up the mess. The next day my home care nurse informed me that I put in the wrong size. Whoops (heat of the moment). So we had to put him through the trauma of another change. Bad mother.

Although Mikan still doesn't sit up on his own, he has made progress rolling from a hands and knees position and rocking back and forth on his hands and knees. He'll take off one of these days.

Sunday, May 17, 2009

A Few Updates

Mikan showing off his ball-handling skills with Poppi this weekend.

Mikan's surgery was moved from July 31st to June 29th. This is good news; decisions will be made sooner, rather than later. After talking with several other parents, doctors, and nurses, we've decided to explore reconstructive options at either Chicago or Cincinnati if we get bad news in June.

In the meantime, Mikan's status has remained the same. He still has a horrible gagging/wretching fit 2-3 times a day. The Prevacid hasn't done anything to stop it. I'm not really sure if it was supposed to prevent this or not. I guess we won't know for sure if it's working until he has another scope.

However, we are very close to a 24 hr vent-free period! The last three nights Mikan has slept with no peep. He is only using his pressure support of 10. His respiratory status hasn't changed, although at night I've noticed his sats drop sometimes to 88-89 and then pop right back up again to the 90s when he's in a deep sleep. This is atypical for him; however, I'm not too concerned. I think a lot of babies do that...right?

We are supposed to call the pulmonologist tomorrow and give him a report on the weekend. When Mikan is ready to be off the vent, he will order an oximeter recording device that will track his vital signs overnight so he can review them later.

Tuesday, May 12, 2009

Surgery Update

Mikan loves playing in his Johnny Jump Up outside.

I wasn't left with warm fuzzies in my stomach after speaking to Mikan's ENT from Riley last night, despite his efforts to remain positive. He said that even if Mikan's airway issues are not caused by reflux (perhaps the movement of the trach itself causes the spread of unwanted tissue), the small chance that he may be able to avoid a major surgery is worth whatever halt in development he may receive by waiting a few months on the Prevacid. Ok, so we can wait.

But he also told us that there are 4 different stages to airway obstruction, and at a stage 3 or 4, laser surgery is usually not effective. In fact, doctors often don't even recommend it because the scar tissue from the surgery itself is just as bad, if not worse for the airway than whatever it was they were trying to remove. During Mikan's last scope a few weeks ago, he was between a stage 3 and 4. This is grounds for airway reconstruction where some cartilage from his ribs needs to be removed and put in his trachea. So...if Mikan downgrades to a stage 1 or 2 this summer, which is ideal, minimal removal will need to be done. If he remains the same or gets worse, then he will have to meet a new team of doctors for reconstruction.

His ENT wanted us to keep this as a possibility in the back of our minds because right now Mikan is a good candidate for reconstruction. To give you an idea of the seriousness of this surgery, the ENT said that about 75 kids get trached a year in Indiana, and of those 75, 6 need airway reconstruction. Right now I'm praying Mikan is not one of the 6, but we will welcome whatever struggles lie ahead for him and our family that we have no control of.

On a positive note, the ENT agreed that waiting till late July wasn't necessary, and he was going to "check his schedule" to see if we couldn't be moved up to the end of June.

And we are constantly reminded there are those who suffer in greater ways than us. Please pray for Kaleigh's family. She just recently went to Heaven.

Sunday, May 10, 2009

Surgery Date

Well, July 31st is the first date available for Mikan's surgery. When I pressed the scheduler for something earlier, she just told me, "This man is in high demand." My anxiety has grown a little regarding the surgery since I've heard that using lasers in the airway can be serious and may set back some progress. I have asked to talk to the ENT again more about the surgery and why he thinks it's reflux-related. If the Prevacid will fix everything and we can have a minimal clean-up in July, that would be ideal.

Oh, and I can't remember if I've posted anything about the vent lately, but Mikan is doing well only using CPAP (pressure support of 10, peep of 4-6) at night. I knew he didn't need his rate, but his pulmonologist has finally given the order to get rid of the ventilation, so he is only on pressures now. We see him again for further weaning in a few weeks, but we may do some over the phone earlier.

We went for a wonderful Mother's Day walk as a family, enjoying the beautiful weather. Mikan made my day by grinning at me the whole time. Happy Mother's Day to all you hard-working moms out there!

Thursday, May 7, 2009

Surfing Mikan

Mikan is enjoying the spring days. He likes being outside, touching grass, playing with tree limbs, and picking flowers for his momma. He also enjoys surfing in the backyard.

We think we have the first trached one year old, who sleeps with a ventilator, in Indiana, on a surfboard, ever. Mikan insisted that since we didn't use the furnace all winter we should splurge on a surfboard for Lake Michigan fun.

Wednesday, May 6, 2009

Robert Couch Head

This was the result of the mandatory nap I tried to force on Mikan before PT today. He was more interested in eating his suction ballard, like usual.

I cannot begin to relay my frustration over the last week trying to get Mikan's next surgery scheduled. I'm going to skip all of the irritating details and just let you know that it is scheduled for sometime near the end of June or early July.

Why so late? Well, unfortunately, the ENT about to perform the laryngoscopy/bronchoscopy with removal of granulation and scar tissue (Which apparently about 1 in 4-5 trached kids needs) is pretty sure that a lot of the mess in Mikan's larynx is due to reflux, and he wants Mikan on a reflux med (Prevacid) for a few months before the surgery to see if his airway will improve at all on its own. The surgery will still be performed; however, the hope is that the procedure will be less traumatic with less "issues to resolve," meaning a quicker recovery time. I am appalled that reflux could be the cause of all this since he has a Nissen, and even before the Nissen, he rarely ever threw up his breast milk (probably 5-7 times in his entire life). I know reflux can still occur without vomiting, but I thought a Nissen would take care of this... We still can't be certain until he is on the med for awhile and then they take another look. If Mikan doesn't respond well to the surgery, then we may have to discuss the possibility of a reconstructive airway surgery. I spoke with the ENT about that today, but right now he hopes that it won't come to too.

Unfortunately, this puts us in a poor position for getting rid of the trach this summer (He would still need to recover from the surgery, have follow-up to make sure the surgery was successful, downsize the trach, get a sleep study...) Since he has a good track record of not getting too terribly sick, perhaps it is still a possibility. We're not going to give up hope just yet. I just have to keep remembering that it's not our plan. We'll embrace whatever situation God has decided to give us.

On a different note, Mikan finally responds to his name!...And "Robert Couch Head." John was practicing calling Mikan's name from different areas of the room the other night. We were excited at first because he was responding so attentively. But then John called "Robert Couch Head," and, sure enough, he responded just as cooperatively. Yep, he's our little Robert Couch Head.

Saturday, May 2, 2009


Not much new information to relay, just that we are still waiting to hear back about a date for Mikan's next surgery. Why does it take a week to schedule a surgery? In the meantime, we're just waiting. Both John and I are pretty convinced that his gagging problem is the result of secretions getting stuck above his trach in his "messy throat area." I'd just like to get it resolved soon. It's horrible to watch him struggle the way he does sometimes.

Here are some pictures from the week. A few post-surgery ones and an OT session.

Also, please pray for a few families who also have little ones with special needs.
Kaleigh and her family have struggled through a lot and are now afraid they will lose her.

Ava will soon meet a team of doctors to hopefully diagnose and treat several medical issues she has been dealing with since birth.

Maggie's weight and muscle loss has been unexplainable. She will meet a team of doctors soon who will hopefully have some answers for her family.