Friday, October 31, 2008

Happy Halloween



This is as close to dressing up for Halloween as we're going to get this year.

Mikan is finally starting to smile regularly now. It's pretty adorable. But it's hard to catch in a picture, so here's some video.

Mikan is also getting stronger. He'll be walking before he's crawling.






video video

Sunday, October 26, 2008

200th post






Mikan has been maintaining status quo. Last week he finally got his Synagis and flu shot. He has been eating slightly better, but only when mom feeds him. After four days without pooping, the pediatrician ordered a laxative. We gave it once and based on the results, I don't think we will have to ever give it again.

Mikan is is going to see another speech therapist and nutritionist through First Steps soon. The therapist has begun helping us with rice cereal feedings for Mikan. He is actually doing pretty well so far.

We are hoping to get him a Passi Muir valve for his trach. This would allow him to pass some air through his voice box, allowing him to make sounds. We can tell he is trying to coo, right now he is in a stage where he wants to put everything in his mouth.

The McCoys visited Saturday and we took Mikan out for a walk. The weather is turning and it looks like we will be cooped up in the house for awhile soon.

If all goes according to plan, Mikan will be completely off steroids in 2 weeks. Then we are supposed to call his pediatrician to discuss weaning his vent rate over the phone. The goal is to keep Mikan on CPAP till Spring and hopefully take him off once RSV season ends. Then his airway will be reexamined.

Aunt Annette taped noises of cousin JT for Mikan to listen to. He likes to listen to them during playtime.

Saturday, October 18, 2008

Weekly Update

video


Mikan is officially on Medicaid now, but we still haven't gotten nursing hours approved. Hopefully this week things will finally get squared away. He still hasn't received his Synagis vaccine. Mikan is more active with his hands now. He rubs his eyes when he wants to sleep. Actually, sometimes he'll rub his eyes to make you think that he wants to sleep, just so you'll leave him alone so he can play uninterrupted.

Two issues resolved this week: One, a yeast infection around his trachea is being treated with some ointment. Two, he had a granuloma (ball of tissue around the opening for the trach) cauterized (with silver nitrate AgNO3). NO3 is a polyatomic ion.

We have started using our wood burning stove and Jenna really likes the heat. I like the heat also because Mikan doesn't need to where onesies. It is getting near freezing at night and we haven't used the furnace yet, so deal with it NIPSCO.

Mikan has a therapist coming every Wendesday to help with his feedings.

His eye doctor said that he has a small astigmatism in his right eye and that he may be nearsighted. I think we can teach him to correct these on his own.

Jenna and I are sharing our Mikan story at March of Dimes and Ronald McDonald House fundraisers. The March of Dimes one we get to talk in front of the big group. The Ronald McDonald one we were recorded for on Thursday. So these are our date nights for November.

video

Sunday, October 12, 2008

Jeff, Rhonda, and Erin came to visit this week. Rhonda and Erin are coming to babysit Mikan on parent-teacher conference night.

Saturday Mark, Bob, Jan, Beth, and Bobby came to visit us. Much thanks for all the wonderful food and gifts they brought! The weather was gorgeous so we took Bobby and Mikan on a walk to the park. We were also able to take Mikan out again today. We're trying to take advantage of the weather while we can.

Mikan is now only taking .1 mg of steroids every other day. So far he has been tolerating everything ok. He still has a lot of yellow drainage from his trach, but the odor has lessened and he seems to be acting fine. We have avoided medicating him until we hear the results of his tracheal aspirate. Clinically, he is acting the same, so we aren't worried yet.

Hopefully this week we will have a lot more answers regarding our future nursing situation. Right now Nina is coming to watch Mikan Mon/Tues and we are hoping to have nursing continue after that.

We have a busy week:
TUESDAY: John has an interview with someone from March of Dimes about a speech he will be giving in November.
WEDNESDAY: Mikan's first visit from a first steps therapist, then we also have a meeting with a representative for an agency that sells alternative medicines (glyconutrients)
THURSDAY: John and I are going to the Ronald McDonald house to speak in a video for the fundraising dinner in November.
FRIDAY: Mikan's first eye doctor appointment since he has been home.

Friday, October 10, 2008

Consistency soon to follow

Mikan finally got approved for Medicaid today! After an exhausting week of calling tons of people and nagging others to fax time sensitive paperwork, we will hopefully only have a gap of 2 days between what our private insurance covers and when Medicaid begins to pay for nursing. We have no idea how many hours a day/week Mikan will qualify for, but we have been told that once we establish a schedule, we will be able to keep it for at least one year. It will be nice to finally have some consistency.

Mikan got a tracheal aspirate today because he's been having some yellowish discharge from his trach. We don't know the results yet. He hasn't been acting sick, so we have avoided loading him up with antibiotics and are just watching him carefully. Hopefully his immune system is strong enough to fight off some infections on his own.

Apart from being a little sleep deprived (but what new parents aren't?), our family is doing well. Next week we have a speech therapist/occupational therapist coming to our house to help with Mikan's feedings.

Wednesday, October 8, 2008

Our private insurance is not going to cover nursing hours after this Friday. However, Mikan qualifies for Medicaid. Therefore at some point in the future, we will once again have funds for home nursing. Our pediatrician wrote that the nursing was mainly for "Mom and Dad to rest and work." According to Anthem, this was not a good enough reason to continue coverage of home nursing. Anthem also does not recognize the importance of receiving the second Synagis shot 28-30 after the first dose. On the Synagis website "One Synagis shot protects your baby for about 28-30 days, so delaying or skipping a shot may leave your baby unprotected." Mikan got his first Synagis shot in late August at the hospital (paid for by Anthem). He has not received his second Synagis shot because insurance will not cover a September shot at home. Anthem claims RSV season starts in late October when you are at home but in late August if you are at the hospital.
Our Medicaid application is now in Indianapolis. We really wish our private insurance would be covering this and not Medicaid. It appears as though our policy through Anthem pushes one of us out of work. While home nursing with our current agency has been much more reliable, I wouldn't feel comfortable leaving him with someone everyday of the week.
Mikan is getting better at reaching out and swatting at things. His motion is kind of random but he is able to grip things every once and awhile.
We are appealing the Anthem decision. Jenna is on the phone too much trying to get things resolved.

Sunday, October 5, 2008

Another successful week






video


Mikan's first experience in an excersaucer.


Mikan has been doing well on his lower pressures and steroids and 02. He is now on 1/2 liter flow day and night and his steroid dose is .12 daily. Over the week we had several visitors including Great Grandma Harbor, Grandma and Grandpa Gensic, Uncle Steve and Aunt Jo, Aunt Annette, and Cousin JT.

After an extremely frustrating week on the phone and downtown we finally think we have Mikan set up to be on Medicaid; however, we don't know when he will officially be approved; therefore, we are unsure of how long we will have nursing. Right now our private insurance stops paying on Oct 10th unless we qualify for an extension to Nov. 10th that we have already applied for. We will hopefully hear soon about whether or not we received the extension. But once Mikan gets on Medicaid, we will have some kind of nursing for 1 year, which would be a big relief.

We are starting Mikan on a few solids, including thicker rice cereal and green beans. He isn't completely adverse to the feedings, but I wouldn't say he is eating anything substantial yet. We've only been trying once a day since feeding is usually such a stressful time for him.

Because our insurance has been slow in approving another Synagis dose, Mikan's first one has now expired, so it is extremely important that he isn't exposed to any cold virus. We are expecting a nurse to come to our home once a month to give him the vaccine, we just don't know when.

We still haven't had any therapists from First Steps visit yet, right now their schedules are pretty packed, so we just have to wait it out.

Thanks to everyone for your continued prayer support!

Thursday, October 2, 2008

More Good News

Mikan's presure support and pressure control were dropped to 30 yesterday after a phone call to his pediatrician's office and the discovery that his x-ray showed more hyperexpansion in his lungs.

We also weaned Mikan's 02 to 3/4 a liter and he has been doing great. So his respiratory status continues to improve; however, we haven't been able to get him to eat more than 10ccs during any one sitting for the last 4 days. Oh well, I guess we just have to keep him as comfortable as we can until he outgrows his issues.

He's sleeping like a champ at night though. 12 hours last night.