Tuesday, April 28, 2009

Chalk Up Another Surgery

We arrived at the hospital at 6 a.m. this morning. Way too early for all of us. The procedure took about an hour, and Mikan was extremely irritable afterward. In fact, we were a little upset because he was delivered to us wearing just an open trach with his ties on (very loose I might add; he almost decanulated as soon as I took him from the nurse), and his trach had blood spurting out of it. His ballard and humidivent were in a plastic bag, and John and I had to pin him down to redo the trach ties, add a missing trach pad, and attach the ballard and humidivent. It took about 45 minutes to calm him down. John eventually turned on ESPN, and Mikan finally stopped crying to watch it.

The surgery uncovered some good news and some bad news. Good news first: Mikan's lower airway below his trach is in good condition. His malacia has improved enough for Mikan to be comfortable breathing on his own. Bad news: the area above his trach and below his vocal chords is a mess. There are large amounts of granulation and scar tissue. Because this is the area through which he exhales with the Passy Muir valve, it now makes sense why he hasn't tolerated the valve in awhile. The tissue was so large and difficult to remove, that the procedure was unable to be done today. An ENT has to use a laser through a scope to remove it. So we've been referred to Riley for this to take place as soon as possible. It will be performed by the ENT who put his trach in (Dr. Augostino) which is reassuring. (Dr. A took a job at Riley shortly after he put Mikan's trach in, and we were referred to a different local ENT.)

The pulmonologist and ENT were quick to tell us that sometimes this procedure takes more than one surgery, and if a worst-case scenario occurs, there is a surgeon at Riley who does the reconstructive airway surgery that he might need to see. We are not happy about the prospect of additional surgeries, ESPECIALLY the possibility of airway reconstruction. But this is a little ways down the road. We'll discuss all options as we are confronted with them. But Mikan still has a good chance of getting rid of the trach this summer, depending on how his next surgery goes.

When we returned home, Mikan took a 3 hour nap and woke up his old self. With the exception of some bloody secretions and a pale complexion, he is now our rambunctious little boy again. He is reaching over my arms from my lap right now trying to type his own section to this post as we speak.

Sunday, April 26, 2009

March of Dimes Walk

We would like to thank everyone who donated to March of Dimes this year. We are confident that March of Dimes funded research that saved Mikan's life. The 4 mile walk was a lot of fun. Our team consisted of John and I, my mom, sister, my friend and her mom, and another couple who was also in the NICU at the same time we were we had twin boys. We also met up with one of Mikan's old girlfriends (primary nurse Dee) who we hadn't seen in awhile. Mikan had a great time being outside in the beautiful weather.

Tuesday Mikan goes back to the hospital for his bronchoscopy. He will get an outside granuloma removed by his ENT while his pulmonolgist does a scope to check the status of his malacia and removes any excess granulation tissue on the inside of his trachea. We'd appreciate everyone's prayers on Tuesday. This is a big step for Mikan. If everything looks good, then we will go ahead with a sleep study at Riley. We're not exactly sure what a "bad" bronchoscopy would mean for the future yet.

Friday, April 24, 2009

A whole new world?

We think Mikan is pretty cute in glasses. However, Mikan is having a little trouble adjusting to them. I think he is upset because he has heard that he resembles me, and today he figured out what that means with more clarity. I tried to explain to him that since he has glasses, he won't look like me. It will take some time for him to reconcile his new observations.

He does keep the glasses on pretty well for a one year old. It is hard to tell much of a difference in his reactions right now, but I'm sure it'll come.

Wednesday, April 22, 2009

Last Day without Glasses

Mark it. Today will be the last day Mikan went without glasses. He gets them tomorrow afternoon. Kind of exciting. I think it'll open the rest of the world to him. I think it'll have some babe appeal as well. I never had glasses but still landed Jenna, so I don't buy into the whole "glasses are cute/sexy" bit. I think I'll start calling him four eyes now, just to toughen him up a little. He'll think his name is Four Eyes Mikan Boy when he goes to school. I can see it now.

First day of preschool, "I am going to call out your name. If you go by another name, please let me know. Mikan Gensic" the teacher calls out.
Mikan responds, "I go by Four Eyes Gensic"
"Really?" the teacher asks in bewilderment.
"Yep, I had retinopathy of prematurity. Therefore, I had laser eye surgery which caused nearsightedness. The glasses change the focal length of my eye to help me focus."
The teacher looks forward to an exciting year with Mikan Boy.

Monday, April 20, 2009

Monday Monday

Some playtime pics from today.

We are thrilled to report that after a few applications of silver nitrate which we obtained from a friend, Mikan's g-tube stoma looks wonderful (well, according to Mikan standards) for now and isn't causing him as much pain.

We had a visit from the nutritionist today. Mikan now weighs 19lbs 3oz. He's been having great weight gain (He doesn't have a lot of choice with the g-tube).

Right now Mikan is way overdue for his last Synagis shot. There was some confusion about insurance coverage for an April dose, and, as result, he is about three weeks behind. We are hoping to get that taken care of.

Speaking of insurance issues...has anyone been billed multiple times for medical expenses that your insurance is covering, but aren't paying in a timely fashion for one reason or another (no prior authorization obtained, they entered our member ID wrong, etc.), and then when you call the company to ask about a specific charge, there are so many claims filed that they cannot figure out which one (or ones) you are talking about? I have am on the phone about once a week with our insurance company trying to get something straightened out that they need to pay for. At some point in the conversation, a representative inevitably says, "You're going to have to wait a minute. Your son has a lot of claims I need to sort through." Usually the conversation is about 30 minutes on a good day, sometimes up to an hour.

Mikan was also a little upset when he heard that there was a chance of snow showers tomorrow morning. Is it the end of April? He was just starting to enjoy being outdoors.

Thursday, April 16, 2009

Milestone Reached and a New Look

Today was the first day we left the house without the ventilator, battery, back-up power cord, vent car adapter, circuit, and back-up circuit. It was liberating. We only dragged along a back-up 02 tank, a biox monitor, and his emergency bag. Right now Mikan is only on the vent overnight, but he is doing so well that we will probably experiment with leaving him off a few times before his surgery so that we can report his progress to the pulmonologist.

Now for a little disappointing news...We left the house today so that Mikan could be fitted for glasses. After his eye doctor appointment on Tuesday, the doc said that he has become "significantly more near-sighted," and it will begin to hinder his development soon, so he recommended glasses. I asked about natural compensation that Mikan might develop with time and growth, but this doc said that because he has had laser eye surgery, that doesn't happen. While the surgery prevented the bad growth on his eyes that was causing retina detachment, it also killed the good growth as well (sorry, I forgot all the medical terms that were used in this discussion). So as he grows, and his eyes get longer, his vision will progressively worsen. He said that some kids who have had laser surgery get contacts as early as 8 years old so they don't have to wear thick glasses. He might be able to have corrective surgery in the future, but not until his eyes stop growing (when he's 15-18 years old). So...until then it's going to be a pretty expensive journey...We were told that his current prescription is pretty expensive, and it will probably keep getting worse...Lovely. Anyway, I'm sure he'll look adorable in them, I just don't know how we're going to keep them on. It was quite an experience trying to fit a bunch of different kinds on him today. There were only certain types that worked for his head (which is apparently "teen-size") and face shape and age. He wanted to eat them all. We ordered them today. I'll have pictures next week when they come in. The optometrist said that he could model for GQ when she saw him in them. I'm not sure if she was just trying to sell them or if she was serious. You can be the judge.

Sunday, April 12, 2009

Easter Snake

So Mikan figured that since today was Easter, he'd make like Jesus and fight some serpents. Jenna figured that if he were exposed to salmonella young enough, then he would gain super immunity. I figured it is pretty awesome and a childhood bravery test.

Friday, April 10, 2009

Holy Week with some Family

Mikan and Jack

Mikan and Mom

Mikan, Maria, and Jack

Evening Talent Show

Tuesday, April 7, 2009

Lips Discovery

Mikan's doorway is completed and our house is finally put back together. It looks great. We love being able to use Mikan's room during the daytime.

Thanks to a gracious friend, we now have an ample supply of silver nitrate sticks, and his stoma appears to be in better shape. To most, it would look disgusting still, but since I've seen much worse, I guess I'm growing accustomed to it. However, I'm afraid Mikan has developed a bad habit of associating anything that touches his stomach with incredible pain. Even though the stoma looks a little better, he still flinches and cries whenever anyone touches his g-tube. I think he may be too used to the pain. I'm not sure. But still no sign of getting rid of it soon. Mikan hates the spoon now. Right now I swipe foods onto his lips (sometimes baby purees, sometimes pasta sauce, or clam chowder) and he tastes them. That's the best we have going right now.

Respiratory-wise, Mikan still continues to improve. We are anxious about his scope at the end of the month and the possibility of ditching the vent for good. He still has a high respiratory rate while awake, but he has no problem keeping up his sats. I don't know if the high rate is a normal baby thing, or something he'll have to cope with due to his chronic lung disease. Mikan's pediatrician just ordered an extra Synagis dose to combat RSV season. He was just recently exposed to RSV through one of his nurses whose daughter had it, so we're hoping he maintains a healthy state.

Friday, April 3, 2009

"That's funny, I thought I made all the news."

"Mmmmm...High-quality polymer..."

This week our house was under construction. We had a hole cut through our living room into Mikan's bedroom so we could have easier access to his room and also heat the front part of our house with our wood burning stove. We discovered that a previous home owner left the outside siding and window of the house on when they added on our living room. This is something we'd never thought we'd see inside our house.

Tomorrow Jenna has a girl trip to Chicago with Gam Gam, Cousin Tia, Maggie, Maria, and Aunt Nikole! John is on Mikan-duty.