Saturday, February 28, 2009

Where's Mikan?



Mikan's bloody secretions stopped sometime on Wednesday. When we got home on Tuesday, Mikan slept from 4:45 p.m. to 6:30 a.m. Wed. When he woke up, he was his adorable self again. Here is a picture and video to prove it. Gam Gam stayed with us this week and spent some quality time with Mikan.

His g-tube looks GREAT. So far he has NO granulation tissue around it, and it isn't causing him too much pain. We are still wrapping it in coarse gauze, but the drainage is pretty minimal. The hope is that skin will grow over any tissue that does appear and everything will heal.

We're still doing pretty well with trials off the vent. Mikan seems to always have mild retractions, sometimes increasing in severity proportionally with his length of time off the vent, but his sats stay up, so this is something that he may always do. We'll have to discuss this with the pulmonologist in a few weeks.

Mikan LOVES Peek-a-boo and putting any kind of blanket over his face. Sometimes I'll think he is taking a nap, but when I gently lift the blanket, I see his blue eyes as wide as giant gumballs staring at the inside of the cloth while he's lying perfectly still. It's fun to watch him try to figure out the world. Shadows are another current fascination.

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Tuesday, February 24, 2009

Pink



This is the face of a satisfied little man on his first trip out of the New Carlisle/South Bend area. He was wearing a much different expression on the ride back. We left our house around 6 a.m. We rode in Nina's van with Nina driving, me riding shotgun and Nurse Angie next to Mikan. Mikan was in a good mood after a 12 hour night's sleep. He stared out the car window for most of the ride up and played peek-a-boo with Nurse Angie. It took us around three hours to get to Indy, and we were amazed at how well he tolerated the trip.

When we got to Riley, we stood in line at a registration desk for awhile only to find out that we had already preregistered and didn't need to wait in line. Then we were ushered upstairs where we had to wait another 30 minutes before we were called in to see the pediatric surgeon. Meanwhile, Mikan is pleasant, showing off his speaking capabilities by babbling with his Passy on. He was off the vent for most of the doctor's visit. I even found myself shushing him when we drew stares from all of his talking. I've never had to worry about my son being loud in public before.

Overall, I think we received some good news. From the surgeon's assessment Mikan didn't have any major issues that would demand an additional surgery. He does not have stomach lining growing over the granulation tissue and preventing the healing. She didn't think he had an allergic reaction to the tube. She didn't think his Nissen wrap was too tight. She said if it was, he wouldn't be able to swallow his own secretions. She also examined what we thought was a hernia on his stomach. She didn't think the gap was anything to be concerned about, apparently it was a natural muscle gap, and she thought his stomach wall was solid. All good news. These were worse-case scenario operations.

So what's wrong? Well, the doctor thought it wasn't anything that couldn't be handled in our local offices, which was frustrating (I've been calling and traveling around all the local offices for the last 3 months!). She thought the drainage was natural drainage coming from the granulation tissue and not gastric juices coming from the stomach itself and seeping onto the tissue around it. She said the key was to keep the granulation tissue under control, which doctors should do by using an "aggressive dose" of silver nitrate as soon as the granulation tissue appears (which, for us, would have been when he was in the PICU 6 months ago...whoops...). Mikan got his first what I would call "tentative dose" a month ago. This woman really attacked the tissue. It started melting away in big gobs of skin when she applied the silver nitrate. Pink granulation tissue turned black in seconds. It immediately began receding. Mikan was hysterical. He still had his Passy on, and I've never heard him scream that loudly or for that length of time. She said that this sort of "aggressive dose" should be performed early on by a physician and not done at home; however, she was impressed with the amount of tissue that receded. So the hope is that his skin will grow over the tissue and begin to heal itself. We were told to leave it open to air and stay away from any creams (with the exception of a steroid cream ONLY if the tissue returned in a significant way-in fact, she was very hesitant to even write the script for this). Leaving it open was something I preferred anyway just by my own gut instinct, as well as advice from a doctor (thanks Bash) and a friend (thanks Jan). Oh, and the balloon should ONLY be inflated 5 ccs according to this doctor. We had been told to inflate it more before we went to Riley.

Ok, well now for the "exciting part." It took awhile for Mikan to recover from all of that work. He finally settled down after some cuddling and we began the long trip home. When we were about thirty minutes away from home, Mikan began fussing. This also happened to be the time Nurse Angie was trying to tube feed him. We think it all started because he was so irritated with riding in a car with three women all day, and he refused to tolerate us any longer. Or maybe his trach got kinked. Well, he went from fussing, to turning shades of gray, to turning bluish very quickly. We were on the bypass around South Bend, and Nina had to pull over quickly and put her blinkers on. By the time I grabbed him out of his car seat, he was completely blue and unconscious. That's when I noticed his trach had come out. He must have squirmed out of it. I laid him across Angie's lap while she grabbed an extra trach. I unhooked a tie and hooked up the ambu bag. Angie began rubbing his chest and bagging him while I hooked up the 02. We revived him pretty quickly (although it certainly seemed like forever). He began breathing on his own when he regained consciousness which was a good sign. It took awhile for his sats to return to normal though. We bagged him at 6 liters 02 for a few minutes until he was pink. In the meantime, semis whirred past us, shaking the van and making us fear for our lives. So far tonight, we've been suctioning bloody secretions from the trach, but his pediatrician says this is probably from the trauma of the incident and that we should just keep watching him.

It was pretty scary to go through this in the car. The car seat forces his trach to sit uncomfortably, and it has kinked before; however, he has never lost consciousness or needed to be bagged because of it. This was the first time we've had to bag him since he's been home from the PICU. But it was a mechanical issue, nothing related to his medical condition as far as we can tell, so at least that much is comforting. No mother should have to see her child blue. But it makes you appreciate pink.

Sunday, February 22, 2009

G-tube

Mikan's g-tube began bleeding again last night. The granulation tissue is lessening (for right now), but it is seeping all over the place. He is in a lot of pain. Whenever anything touches the button, he cries. And crying in general is unusual for him. When we let it air dry, it seems to seep less, but it gets chapped and bleeds more. I'm not sure what the best answer is. I think we've tried everything. Anyway, we are hoping to get some answers from our trip to Riley this Tuesday.

I just thought this video was cute. Mikan is beginning to play around more (he acts so differently, he is interested in so much more) and his smiles, just like any baby's, are so contagious.


video

Saturday, February 21, 2009

Nutrition



Mikan's nutritionist visited yesterday. Last month he was gaining 17g a day. This month he gained 6g a day. She was a little worried about this drop and wanted to increase his formula to 24cal Neosure. We are waiting for our pediatrician's approval. He also isn't getting the average fluid amount he needs per day. Because he is fluid restricted, we aren't supposed to do any extra flushes of his g-tube. The nutritionist is going to talk to our doctor next week to discuss all of her concerns. Since Mikan is working harder to breath of the vent, we assumed this dip would be coming. Hopefully his transition to higher calories will be smooth. He hasn't had a formula calorie change since he came home from the NICU.

Mikan now has 2 bottom teeth. He is drooling and biting on everything.

Friday, February 20, 2009

The Locks Stay

Let me first announce that Mikan still has his beautiful hair. I would have freaked if John cut it while I was gone. I'm not sure what stopped him (thinking twice about how I would have reacted, or the comments others posted -thank you!-), but Mikan has maintained his movie star locks. I'm not sure when he'll get an official first haircut.

Last week we spent some time at an NICU parent panel. We saw Nurse Diane, Nurse Sally, and Nurse Heather. It was nice to see Mikan's lady friends.

I spent the last 2 days in Chicago getting trained in shared inquiry discussion to prepare to teach a Great Books class at my school. The weather was bitter, but the conference was meaningful. I had a good time. Wed. night was the first night John had to watch Mikan alone. And guess what had to happen? Mikan's g-tube balloon burst overnight, and when Mikan woke up at 6 a.m. the next morning, he opened his eyes, looked at John, then yanked his g-tube button out of his stomach. John pushed it back in and called me for assistance. I convinced John to change it to the back-up tube and NOT hold it in for an hour until the nurse came. John also had to change Mikan's trach on Wed. He did a wonderful job taking over mom duties while I was away.

This morning we realized Mikan's hot pot had been malfunctioning all night and he never received any humidity. None of the alarms were working properly either. That's not too comforting. Anyway, an RT from Memorial came out to our house today to fix it.

We had another school cancellation today. Not for snow, but because someone vandalized our buses! Slashed tires, cut brake lines, etc. Unbelievable.

Progress Report: Mikan took a nap today for the first time off of his vent!

Thursday, February 19, 2009

First Haircut

This blog started on February 18th of 2008, when Jenna's (or shall we say Mikan's) water broke. On Tuesday night, we were a part of the NICU's parent panel where we gave the NICU feedback and voiced some of our concerns. This event was exactly one year after Jenna's water broke. So it felt weird driving to the hospital, at night, in the cold, in the dark. We are certainly thankful to be driving under much less stressful conditions this year.

Since Jenna is in Chicago for a two day conference and I have a snowday, I was thinking about giving Mikan his first buzz cut this afternoon. I think Jenna would be grateful that I took care of this chore without her knowing or being here. I'll video tape everything along with Jenna's surprised look when she comes home. I expect many thanks from her when she gets back tonight. Stay tuned.

Saturday, February 14, 2009

Mikan's 1st Valentine's Day



Mikan celebrated his first Valentine's Day with a visit from Nina, Aunt Alexa, and Grandma and Grandpa Gensic. He played all day and we enjoyed some free food. Free food and good company is always welcome.

Friday, February 13, 2009

Mikan Stimulus Package

As Mikan is approaching his first birthday, he is becoming more responsive to external stimuli. Yesterday, he pooped out his diaper down his knee and up his back. The diaper stood no chance against the following...

video

Yep, I scared the crap out of him.

We think he is sensing the warmer weather and longer days. While he still goes to sleep around 6 pm, his energy level is up. I think his current weaning off the vent is due to his realizing that the vent is holding back his play areas. When he is off the vent, we travel throughout the house and make observations while we play. The room that he usually stays in is pretty dark, so when we take him to the lighter, front part of the house he squints and faces away from the light for the first couple of minutes.

Thursday, February 12, 2009

Update

I presented John with the idea of changing our blog background to make it a little more interesting. He refused anything that wasn't basketball related. Finally we settled on a picture of George Mikan, the Croatian basketball player Mikan was named after.

So earlier this week when John turned on our stationary suction machine, it began smoking, yes, smoking, (but not cigarettes). Then a burning smell filled our living room. When John unplugged it he received a minor shock. We were forced to use our extremely noisy portable suction machine all night, then the entire following day after our home care dropped off the wrong suction machine as a replacement. Now we have the right new stationary suction machine, but it makes a horrible noise, and we've resorted to wrapping it in a towel to muffle the cacophony.

We went for another trip to the ENT today because the granuloma around Mikan's trach has turned a bright red and continues to grow. His doctor said that we need to watch for bleeding and irritation and pay attention to whether or not it is interfering with the changing of the trach. We have an appointment with both our pediatrician and pulmonologist on March 10th, and after we talk about weaning him off the ventilator with them, the ENT said hopefully we can do a scope to remove granulation tissue on the inside of his trachea as well as the one growing on the outside. This scope is done in preparation for decanulation, so nothing is certain right now. The ENT's hope was that his granuloma wouldn't grow too large before late March or early April, and then maybe she could take care of it along with the scope. But we have no idea when he will be preparing for decanulation, so right now we just have to hope that it won't grow any larger so we don't have to undergo yet another surgery.

Mikan is doing better with smiling, so I tried to catch him grinning to show it off.











video

Sunday, February 8, 2009

Mikan Tough

Mikan had his ladies come over on Saturday. Cousin Maria, Maggie and Aunt Nikole stopped by and he was able to make them do whatever he wanted them to do. I was impressed.

Mikan wanted to reiterate his toughness today. His body language said the following...
-What's another surgery?
-Who needs a furnace?
-He started to tell a story about how when he was in the PICU there was Spinal Tap being done to the patient next to him.
-He made a comment about being able to eat without swallowing.
There were other comments made throughout the day, but Jenna tired to show him up by showing Mikan her C-section scar. Then Mikan took off his shirt, rolled over, and showed Jenna his PDA ligation surgery scar. Jenna then covered her scar and felt bad even trying to challenge Mikan's toughness. I tried to join in on the toughness debate but was quickly ignored.

Final Family Toughness Ratings: Mikan 9.4 Jenna 8.9 John 5.5 (as determined by Jenna).

Mikan does not score a perfect ten because he had his first stranger danger episode last week with one of the therapists.

Friday, February 6, 2009

Status Quo

Mikan's status has remained the same. His respiratory health continues to improve. He no longer needs any extra 02 day or night. We've been able to take him off the vent several times each day for an hour or sometimes 2 each time. He does great.

His g-tube still leaks and is very sore, so his playtime is a little limited. But we are trying to be creative with the tummy time positions. The feedings have slightly improved. He likes moving food around with his tongue and lips, but refuses to open his mouth for the spoon. Instead he lets you put the spoon on his lips and he will eventually loosen his lips enough for you to spoon some in. Once it's in, he likes it.

The videos illustrate a typical feeding time and evening playtime.
He can't sit up on his own yet, but he likes standing with our help.

video

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Monday, February 2, 2009

Super Bowl Baby

Mikan wore his 3-D glasses to maximize his Super Bowl Commercial viewing experience.



We have now scheduled an appointment for Mikan near the end of February to see a pediatric surgeon at Riley who specializes in g-tubes. His g-tube still leaks, he is maintaining his granulation tissue, and he remains in a lot of pain. To make matters worse, one of his home care nurses noticed a slight hernia coming from the scar from his g-tube. Some babies apparently have to have their g-tubes redone if the muscles don't heal properly. Oh, and by the way, his current granuloma around his trach is growing, and it looks like another one is forming as well (a scar-like one, not one that looks like it could be taken care of with a little silver nitrate). It looks like another surgery is imminent, or another three-four surgeries at once.