Saturday, January 31, 2009

Bedtime Pics

Lately Mikan insists on sleeping with his blanket completely covering his face. We take it off once he's asleep. Thank God he's vented right now; however, it's a bad habit we'll probably want to start to break.

We have regularly found saline bullets underneath his body, blankets, on the floor, etc. This is the first time we noticed one actually attached to his body.

Tuesday, January 27, 2009

G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube G-Tube...

Mikan's g-tube isn't healing. We are applying silver nitrate every three days, he's on Augmentin once a day, and we're applying every cream, vasoline, and barrier coat known to man. His pediatrician's nurse told us today to try inflating the balloon with a couple more ccs of water. Right now it's at 5, we're increasing it to 7 to see if that makes a difference. His pediatrician is referring him to a doctor at Riley that specializes in g-tube wounds. I think this is 3-3 1/2 hours away from where we live. We are hoping that inflating the balloon more will just solve the problem, however, we know it's doubtful. We were so grateful that we had avoided needing to take him down to Indy for nearly every other health issue he has faced since birth. It's a little disappointing to think that we may have to make the trek for the g-tube. But we know there are plenty of other families who make these sorts of trips regularly for their kids, so we know we are still lucky.

On the positive side, Mikan is feeling much better from his respiratory flare-up. He is back to room air all day (and all of last night!) and he is off of the vent for most of his waking hours. We usually give him a break during his awake time in the evening. But he does beautifully. He's getting so much better at grabbing toys and wanting to roll over; however, with his g-tube tenderness, he still isn't getting much belly time.

Today he was weighed for his Synagis vaccine and a nutritionist visit earlier this week. He's between 17 2 and 17 7. John and Mikan still kangaroo together. It usually calms him down after a Synagis shot or a fussy trach care. They like taking their shirts off together and flexing before they cuddle.

Friday, January 23, 2009

Mikan and his G-tube

On Wed. of this week we visited the ENT who looked at Mikan's granuloma on his trach. Unfortunately, it is "too mature" and "looks more like scar tissue," meaning silver nitrate didn't work to get rid of it, and he will probably eventually need it surgically removed. Right now we are just supposed to watch it. If it gets big enough to interfere with putting in the trach, then it needs to be removed, otherwise she will wait until he gets a bronch scope done in the spring because he will be under anesthesia already for that.

We were grateful that after trying the silver nitrate on the trach site, the ENT "accidentally dropped some" on the granulation tissue around his g-tube. We are still waiting to see if that is working. Today he started getting more redness around the site that appeared to be spreading on one side of his stomach. So we called the doctor who was concerned he may have some sort of staff infection. Now we are supposed to give Mikan Augmentin twice a day to heal it up. We are hoping that the antibiotic in addition to the silver nitrate sticks will solve the g-tube catastrophe. He's had the g-tube for 5 months now (and it's never looked good), a little too long to be dealing with these constant problems if you ask me.

Meanwhile, Mikan was sick all week. He had a lot of lung secretions, keeping me up every hour at night with constant suctioning and coughing. We didn't put him on antiobiotics though because his 02 didn't go above 1/4 liter, and he seemed in good spirits. He appears to be improving finally.

Monday, January 19, 2009

G-Tube ISSUES! Continued...

Mikan woke up with more bleeding from his granulation tissue, not just seeping, but bleeding. Those pink dressings aren't doing a thing. We are going to the ENT to most likely use some silver nitrate on his trach granuloma. Should I ask for her to do the same for his g-tube? Is this too much pain? Can you use silver nitrate on open wounds? Could he get a local anesthetic first? Does anyone have any experience with this?

Mikan's Photo Shoot Jan. 2009

Sunday, January 18, 2009

Cousin Haircut Party

Yesterday Cousin JT came to visit with Aunt Annette and Uncle Gil. Mikan and JT had a great time together getting spontaneous haircuts and wrestling. JT got a buzz while mom mustered enough courage to just cut the mop of curls on the top of Mikan's head that was three times as long as the rest of his hair. She vetoed a buzz.

Some pics from the day: An action shot of Mikan taking down JT, Mikan with his new look, John and JT with matching haircuts, and Mikan showing off his basketball skills.

Mikan learned how to fight like this in the NICU.

Friday, January 16, 2009

A Day Without the Circuit...Almost!

Today Mikan spent nearly all of his waking hours off of the ventilator! He kept his sats up; however, with his Passy on, I think he learned how to cry and fuss so now he experiments with fussing not because he's upset, but because that is one of the new sounds he knows how to make and can now hear. We had another day off work because of the weather, so we spent most of the day working with Mikan off the vent with nurse Bev.

He's getting stronger and bigger each day. Earlier this week we visited the NICU and saw some of his favorite doctors, nurses, RTs, and therapists. One of the first comments made when they saw him was "He looks like a toddler!" With the exception of the toddling, he is on his way to toddlerhood I suppose.

Although we're pretty sure he's fighting some tracheitis due to increased secretions and coughing, we haven't had to medicate him this week or give him any extra 02, so kudos to Mikan's strengthening immune system.

Wednesday, January 14, 2009


Mikan spending some time off the vent, checking out the wintry weather.

Yesterday afternoon, during Mikan's speech therapy session, we discovered a new game he likes to play when his Passy Muir valve is on.

When we put his Passy Muir valve on later that evening...this is what happened.

Some of you haven't heard Mikan cry, well he was showing off his lung strength last night. So, John decided to distract him with the game we played during therapy.

The game stopped the crying.

Well yesterday was a pretty long day for us. We had several inches of snow with blizzard-like conditions, plenty of blowing and drifting. Of course this was our day of appointments in South Bend. But we endured the weather to see two new specialists: the pediatric pulmonologist and the stoma therapist.

The pulmonologist said that Mikan's lungs sounded good and his vent settings were moderate to minimal. He agreed with the pediatrician and said that he wouldn't suggest changing any more settings or even experimenting on CPAP. Mikan should continue weaning by extending his time off the ventilator. So, right now we are to continue taking Mikan off twice a day for an hour each. After four days, we are supposed to increase that time by 5 minutes each time. This will continue until Mikan is off the ventilator the entire time he is awake. He also mentioned the possibility of granulation tissue forming inside of his trachea which may need to be removed before the trach comes out, but that is an issue for the spring when we'll experiment with capping the trach and doing sleep studies to determine whether or not Mikan is ready for life without it. In the spring the pulmonologist also mentioned using a flexible scope to view Mikan's upper and lower airways to check the status of his laryngomalacia.

The stoma therapist/ostomy nurse gave us "the pink dressing" for the g-tube. It's a dressing for wounds that is foam and is supposed to absorb the moisture so it won't sit on his skin or a gauze pad. We're supposed to leave them on him for 3 days a time and in a week his stoma will heal. So far we haven't been impressed. The pad got pretty nasty after only 12 hours, and his skin was wet, so we had to change it. If this doesn't work, after a week we may have to go back to get silver nitrate put on it. The nurse said it will cause him pain, so she wanted to try and avoid it.

Speaking of silver nitrate...Mikan has another large granuloma around his trach stoma. We had to call the ENT to bump up his check up so she could take a look at it. (Actually, I cancelled for tomorrow since we are supposed to bombarded with the snow storm of the century and rescheduled for next week). Last time the ENT used silver nitrate to stop the growth and we applied steroid cream afterwards. This worked nicely. We've been using the steroid cream for 2 weeks though and it continues to grow, so I'm guessing we'll need to use the silver nitrate. Mikan will love that.

Meanwhile, I (Jenna) am fighting my first cold of the school year. Yesterday morning I began to feel a little congested, but by last night, I felt miserable. I knew I had been lucky to be evading the school germs this long. I am trying to stay away from Mikan as much as possible and allow for for Mikan-Daddy bonding time. :)

Friday, January 9, 2009

Pretty Cute, even with the tubes

My friend Angela had her friend Krissy who is a photographer come to our house to take pictures of Mikan as a Christmas present. Here are a few of the pics.

Wednesday, January 7, 2009

A Thumb Sucker?

This video was captured during Mikan's first ever rhythmic sucking of his thumb. As you can see, he is pretty focused on getting it right. Lately Mikan will stick just about anything in his mouth except food.

Mikan is still doing well with his trials off the vent. He needs to be suctioned more frequently after he is off, but he has been able to keep his sats up well. He doesn't need extra 02 anymore. We just keep it at our house as a back up and use it sometimes when he is in a deep sleep.

For the most part feedings are still terrible, but he does take a few tastes by spoon at each feeding. Also, a few days ago we tried a Dr. Brown's bottle for the first time and he sucked down 70ccs! We've only been trying the bottle at night because it stresses him out too much to do all the time. During the day we focus on the baby foods.

Another milestone: Mikan is sleeping through the night without any extra food! We increased his feedings recently so we could skip another middle of the night feeding that I had been setting my alarm for. He has been doing well sleeping from 9pm-7am. He still needs suctioned every once in awhile, but we are finally getting some consecutive hours of sleep!

Next week Mikan sees the pulmonologist, ostomy nurse, speech therapist, occupational therapist, and nutritionist. Thank God I'm only working part-time right now. How are we supposed to juggle these appointments? I switched from working Mondays and Tuesdays to working every other day (MWF one week and then TR the next). I am excited about the change, and we now have competent nursing that we trust, which makes the transition easier.

Thanks to everyone for reading! Keep praying Mikan stays healthy!

Friday, January 2, 2009

G-tube Problem Not Completely Solved Yet

Thanks for the g-tube advice to those who posted. We had to stop using the drainage sponges because we couldn't change them fast enough for his drainage. His NICU doctor recommended we let it air dry and that seems to work the best. His site looks much better, but because it hasn't healed yet we are still going to see a stoma specialist at the hospital. However, she wasn't available for another week, so we were happy the site has appeared to stop bothering him as much as it did four days ago. It has also stopped bleeding, it's more of a seeping now. Right now we use bacitracin and no sponge. However, I tape gauze inside his clothing so he doesn't get blood and gastric juices on them. So we have an appointment to see the stoma specialist immediately after our pulmonologist appointment on the 13th. Over the phone she said she would most likely recommend a barrier cream.

Mikan is doing great with all of his trials off the ventilator so far! He still hasn't really tolerated his Passy Muir while he's off the vent though, so we've avoided using it that often during those times. Instead it throws him into violent coughing fits where he turns red and gags. It's kind of an ugly sound, like he's getting an exorcism performed on him or something. But it's better than turning blue.

The video I couldn't resist posting. Mikan likes to cover his face with blankets when he falls asleep and he totally did this creation himself. I thought it was hilarious. Maybe it's just a mom thing.