Thursday, November 27, 2008

Mikan's First Thanksgiving






Above: Mikan eating with attitude; contemplating the next move at the Risk game with Uncle Ben; just being cute

After another set of good blood gases last week (PCO2 of 45), Mikan's pediatrician weaned his vent pressures by 4 each. Now he is at a pressure support and control of 16. He is still doing well and not needing oxygen while he is awake. He isn't eating so well though. He hasn't taken anything by spoon for about a week, but we can't expect immediate progress with everything. We are having issues with keeping the biox (blood oxygen saturation) monitor that he uses all the time to measure the 02 in his blood. The probes that he wears on his feet keep shorting out. These are really expensive so I don't think our equipment agency is happy with us. Oh well. Mikan just moves around too much now, it's hard to keep them on. But this doesn't explain why they keep breaking. We are tempted to not even use them except when he's sleeping. This week Mikan also received another dose of Synagis to prevent RSV (2 shots, but he handled it like a champ).

We celebrated our first Thanksgiving together just the three of us (we had some family that ended up getting sick, so they couldn't visit). No turkey, but we made steak and salad while trying to get Mikan to eat pears...unsuccessfully. John is spending the night with the crazies at WalMart tonight to purchase a Black Friday DVD camera for cheap so that we can keep videotaping Mikan's progress with something higher quality than our digital camera.

Last week Mikan had increased secretions and a small cough; however, he seems to be back to his baseline and we didn't need to medicate him. His immune system is improving everyday!

Next week we have a speech therapist coming to work with a Passy Muir valve so that Mikan can make noises, we also have an appointment with the pediatrician.

Thursday, November 20, 2008

Milestone Day






This afternoon, while out getting a new set of blood gasses, on two different occasions while we were beginning to transport Mikan and his equipment, we noticed that his 02 tubing had been unhooked from the vent for an uncertain amount of time. We didn't notice because he wasn't desatting. So, when we got home, we decided to unhook his 02 and see how long he could make it before he started desatting. It's still unplugged (5 hours later). I thought he might need it when he napped, but he kept his sats up even then. Maybe Mikan yanked it out as his way of saying he needed to be weaned. So, hopefully he won't need 02 too much longer, maybe only when he sleeps. It is something we'll discuss with the doctor next week.

Wednesday a nutrition specialist from First Steps came out to weigh Mikan and give us tips on his transition to solid foods. Mikan now weighs 15lbs 4oz. He is in the 21% for weight, but not even on the charts for length (all according to his adjusted age of 5 1/2 months). The woman told us that once he was eating 2 ounces of baby food 3 times a day pretty regularly we could start talking about decreasing his formula nutrition. We want his diet to support the extra nutrition his body needs while being weaned from the ventilator. Right now he is eating between 2-3 ounces of baby food a day.

Because of good blood gasses from last week, Mikan's pediatrician weaned his vent pressures again from 22 to 20. So we had to go back to the South Bend Med. Foundation again today to get another round. This time the pediatrician said he was allowed capillary gasses; however, the South Bend Med. Foundation didn't have the equipment for those kind of gasses, so we were sent to St. Joe Hospital instead. Carting Mikan around South Bend all morning wasn't exactly what I had planned on doing, but he ended up with great blood gasses, and the doctor didn't have to find a vein, so I guess it was worth it.

Check out the pictures. Are his steroid cheeks getting any smaller?

Saturday, November 15, 2008







For the majority of Mikan's short life he has been unable to make noise. Now that he is growing bigger and stronger he is beginning to regularly be able to pass air past the sides of his trach and through his vocal chords. The above video is an exciting step for him.

Nina came to visit Mikan on Wednesday and she witnessed his stellar eating progress with baby foods. Mikan still rarely takes the bottle (1/2 ounce every 3 hours if we're lucky), but he is doing an impressive job with rice cereal and stage 1 baby foods. We anticipate going right to a sippy cup later on and completely skip the bottle step.

We attended the Ronald McDonald fundraiser friday night. There was a clip of us in a video explaining our story and promoting the Ronald McDonald house. Good food and a nice night out.

At Mikan's ENT appointment this week his doctor said that she wasn't going to increase his trach size unless he had problems oxygenating, since downsizing the trach is eventually part of the weaning process. Right now he is doing wonderful with NO steroids, 1/4 liter (23% 02) night and day, and happy the majority of the time, even during trach care sometimes.

Mikan's pediatrician weaned his vent pressures a little. Now his pressure support and pressure control are 22. These are nearly half the pressures he was on in the NICU. PROGRESS! We had to take him to the South Bend Medical Foundation for blood gases to check to see if he was tolerating the change well. There was a long line and we were nervous about being late for his ENT appointment, so we played the "ventilator card" Nurse Bev from home care confidently walked up to the front desk and said, "Excuse me. We have a baby on a ventilator who needs blood drawn. Is there anyway we could be seen next? He really shouldn't be out in public." It worked, we were ushered in. After several missed attempts at sticking his veins and Mikan turning red and furious, they finally extracted an adequate amount of blood. We miss NICU blood gases. His doctor ordered a venous (spelling?) draw instead of a capillary (heel stick) which resulted in a lot more torment for Mikan. Hopefully others won't be as traumatic. We haven't received the results yet. Another frustration of being home. We knew results at the NICU instantly. But clinically Mikan appears to be doing wonderfully, so hopefully we can keep the vent pressures low.

Monday, November 10, 2008

"I Love to Color"

Just because I hadn't found it elsewhere on the internet but wanted to know all the words I took some time to type this out. I'll work on pockets for later.

"I Love to Color" by Joe Wise:

A color it’s a color and you know I love to color, you know I love to color
I love to color everything I see
Sometimes I like to color like I know it ought to be
But at one time or another I just use another color
And when I’m feeling real loose I color puce.

Puce? What is a puce? I don’t know? Isn’t something you put on a sore? I don’t know.

I like red…She likes red. Yeah…we like red
Red Red Red Red Red Red Red Red
Red is for the Rooster’s head
The farmer’s roof my grandma’s spread
Red is for a nose that’s cold
Or guys along Old Santa’s sled

A color it’s a color and you know I love to color, you know I love to color
I love to color everything I see
Sometimes I like to color like I know it ought to be
But at one time or another I just use another color
And when I’m feeling real loose I color puce.

Puce? What is a puce? I don’t know? Isn’t that what you sit on at Church?

I don’t know but I like green. He likes green. Yeah…we like green.
Green Green Green Green Green Green Green Green
Green is for the alligator, monster’s feet and Oscar’s mother.
Green is for a face that’s sick and Peter Piper’s brother.

A color it’s a color and you know I love to color, you know I love to color
I love to color everything I see
Sometimes I like to color like I know it ought to be
But at one time or another I just use another color
And when I’m feeling real loose I color puse.

Puce? I don’t know what a puce is. Maybe when something stinks real bad.

I don’t know but I like brown. She likes brown. Yeah…we like brown.
Brown Brown Brown Brown Brown Brown Brown Brown
Brown is for the mamma llama,
Susie’s hair and Fred’s pajamas.
Chocolate pudding, mud, and dirt and half the sand in Grand Bahaaamaaaaa.

A color it’s a color and you know I love to color, you know I love to color
I love to color everything I see
Sometimes I like to color like I know it ought to be
But at one time or another I just use another color
And when I’m feeling real loose, I color puse.
And when I’m feeling real down, I color brown.
And when I’m feeling real mean, I color green.
And when I am a sore head, I color red.

Yeah, but what’s puce? Yeah what is a puce anyway?

Puce, noun, one syllable, A dark red that is yellower and less strong than cranberry.
Paler and slightly yellower than average garnet, bluer less strong and slightly lighter than pomegranate, and bluer and paler than average wine.

Oh…so that’s a puce. Well we like puce.
You like puce?
Yeah, we like puce!
I thought you’d never ask.

Puce Puce Puce Puce Puce Puce Puce Puce
Puce is for old Bruce the Moose and
Doctor Suess and Mother Goose
And sprucing up some apple juice
And just really for whenever your just feeling loose.

To tell you the truth there’s been some underrating of puce in the last few centuries.
Some people actually have no use for puce but Bruce the Moose who I mentioned earlier and Doctor Suess and Mother Goose even the Great god Zeus all feel there’s no excuse for us not to produce and have more use for puce throughout the world.

Now I just happen to have a few ideas for how to spruce up puce.
To start with every caboose will be puce.
Then, containers of refuse
Actually I have an aunt that would look good in puce.
Now as far as fire trucks go maybe city council would be able to vote on the percentage of

Friday, November 7, 2008

Final Day of Steroids!



Believe it or not, Mikan woke up from a nap with this hair.


Mikan's had a pretty decent week. Next week we have another slew of doctors/therapy appointments. Today we gave Mikan what was supposed to be his final dose of steroids. Depending on if he gets sick or not over the next several weeks, or how his body handles the final wean, he may have to return to a small dose. But for right now, the doctor's order is to STOP! His 02 has been fluctuating between 1/2 liter and 1/4 liter. He is eating by spoon pretty decently as well.

Wednesday of this week, John and I spoke as the March of Dimes ambassador family at their annual Chef's Auction. We were asked to talk about our experience with having a premature baby. We also got a lot of free food from the best chefs in the area. One of the chefs approached us after our talk and said he had a similar experience with his grandchild in the hospital and insisted on dropping off dinner at our house one evening. We accepted :)

Next week we have an ENT appointment, first steps, and a phone conference with the pediatrician to discuss continued weaning of the ventilator as long as Mikan's respiratory status remains stable.