Sunday, March 29, 2009

March Madness



We are working on sustaining a crawling position. Since his g-tube hurts too much to be on his belly, this will hopefully help him get stronger.

Last week we received an official report from the Indiana State Department of Health. The cover letter said that after a thorough investigation of our previous home care agency, the department confirmed the validity of our complaints and said the agency was in violation of state law. The packet went on to cite several other violations of the agency that were discovered as a result of the investigation. If nothing else, hopefully the agency will be more cautious with client care in the future.

On to the section of the section of the post where I rant about Mikan's g-tube for awhile... We understand that it will be a chronic issue...I just need something to deal with the CHRONIC PAIN! It causes him so much irritation. He even compensates for the pain by pushing off our stomachs with his legs when we lift him up so it doesn't rub against anything. His g-tube doctor said that whoever we saw would recommend something different, so it was up to us to decide what we wanted to try. Apparently you can only order silver nitrate sticks in boxes of 100 and this doc. said that he was unsure insurance would cover an order for that many. Has anyone else heard of getting smaller quantities that insurance does cover? But this doc. thinks we should only use it if the tissue is out of control (the opposite of what the Riley surgeon said). Anyway, I am at a loss of what to do because of the pain it causes him. When he has surgery in April, I am going to try to talk one of the docs in the operating room into giving him another "aggressive" silver nitrate dose. If nothing else, perhaps he'll be pain-free for a few weeks.



This is Mikan playing with his "play ballard." Yes, he has a "play ballard." We had to give him a "play ballard" of a different catheder size because he bit through his last one. Those are too expensive to be changing every day!

Mikan is cheering for Louisville today.

Thursday, March 26, 2009

Exploring

Mikan went to the Newborn Follow-Up Clinic at the hospital yesterday. He met with several nurses and therapists who evaluated his progress since discharge. His fine motor and gross motor skills matched about a 5-6 month old with scattered skills of a 7 month-old. This was lower than I expected, but certainly a good amount of progress since the last visit 6 months ago when he was functioning at a 1-2 month old level. His speech/oral motor skills were at an 11 month level! This was surprising considering we can barely get him to eat anything.

Here are some videos from last night and today of Mikan exploring his "toys."





Tuesday, March 24, 2009

G-Tube Visit #?


Mikan visited the G-tube surgeon today. Apparently, there is a decent percentage of g-tube patients that just have to live with moderate to severe g-tube discomfort. Mikan is learning to be tough.

Struggles with eating continue. He is becoming a little more aggressive in his anti-eating campaign. He is starting to shake his head "no" and grab the spoon with his fingers to thwart off the food enemy. However, he does like to grab and put regular baby carrots in his mouth. He likes to be in control (or think he is).

He is improving his walking with support, his supporting himself with his arms, and his responding to stimuli.

Wednesday, March 18, 2009

Therapy Day




Mikan had his 6 month First Steps review this morning. It's amazing the progress he's made; however, he still has so far to go. He had a speech therapy session in the afternoon. His eating hasn't been great lately. He hasn't taken the bottle in about 2 weeks, but he's still eating small amounts of purees. The speech therapist discussed the possibility of skipping the bottle and going to a training straw, which I am totally in favor of. We will also be adding a PT in the spring sometime. His OT and ST think that part of his feeding issues are position-related, so they want to work together with a PT to help resolve this issue. His OT also talked about a "binder," which is an elastic band that wraps around his trunk. This would help him develop all of his muscles without learning any bad habits from a weak trunk.

His bronch has been delayed awhile. Right now it is scheduled for April 28th. The pulmonologist will do the scope and remove the tissue inside the trachea at the same time his ENT will be removing the huge granuloma that is growing on the outside of his trach stoma. It just took that long for their schedules to be able to coincide. I'm also hoping they can give him another "aggressive dose" of silver nitrate to the g-tube. We've made another appointment with his local g-tube doctor because it is still bleeding and causing him pain. I think it's just going to be a battle until it is removed.

We plan on enjoying the beautiful weather this afternoon!

Sunday, March 15, 2009

Cinnamon Allergy?



I'm not sure how visible it is in this picture, but I tried to capture Mikan's first "food reaction." We gave him applesauce and added a bunch of cinnamon (all spices were recommended by the speech therapist to try adding to his purees since he can't taste very well with the trach). Anyway, after a few bites and making a mess on his face, I cleaned him up and noticed a bright red ring around his upper lip, cheeks and chin. He seemed pretty happy, even after eating it, so I don't think it was an allergic reaction (nothing severe at least), something just his skin was sensitive to I guess. It went away later in the afternoon. But we'll be avoiding cinnamon just in case. Bummer.

Thursday, March 12, 2009

The Big 3: G-tube, Trach, and Vent

We had a visit with the pulmonologist and pediatrician yesterday. After witnessing Mikan's breathing with the Passy Muir valve, his pulmonologist suggested we give him a break. He said that he looked a little labored with his exhalations, and he suspected it may be due to excess granulation tissue on the inside of his trachea. We always knew this was a possibility. He would have to have the tissue removed before his trach ever came out anyway. But the pulmonologist wants to do the surgery sooner rather than later. In fact, he wants to do it within the next 3 weeks. We don't have a date set yet. He will use a flexible scope to examine Mikan's upper and lower airways for signs of malacia, while removing any excess granulation tissue from the inside of his trachea. If his airway looks good, pulmonologist will order a sleep study (that has to be performed at Riley) where doctors cap Mikan's trach and see what his breathing is like when he is in his REM phase of sleep. He wants to use the results of the sleep study to determine whether or not Mikan is ready to ditch the vent for good. If he sleeps well, we may do 24-hour trials off the vent. If he can tolerate being off the vent, with any luck, the trach will come out soon afterwards. But we know not to get our hopes up at this point. If you read back, there were a lot of "ifs" before that last line. And he's Mikan. Mikan just does his own thing.

Anyway, a little bit of bad news to report. Our g-tube worry-free days were short-lived. His granulation tissue is back (not as severe) and causing him pain. The skin hasn't healed over it. It was bleeding most of today. I don't know if we need to find a doctor here to continually silver nitrate it. I put some steroid cream on today, but I was ordered to use it sparingly by one doctor. Is silver nitrate a one-time thing, or do patients usually have to repeat an "aggressive treatment every few weeks? We were told by the last doctor we saw that "dabbing" doesn't work. She didn't recommend using silver nitrate at home because she said it needs to be done "aggressively." Does anyone else have any experience with this? Or an opinion?

Mikan loves walking lately. He still has made very little progress with sitting up and rolling over, but he loves to show off his leg strength.

Saturday, March 7, 2009

Cousin Haircut Party: Part 2

Some of Mikan's cousins visited today to celebrate Mikan's birthday. We didn't have a big party, but a few relatives came over. It turned into a cousin haircut party. And yes, Mikan got his first "real" haircut. We cut it with the longest attachment, but it still looks pretty short. He lost his curls, but not his cuteness. It started out ok, see the video below.






Then Mikan began crying at his loss of innocence. His virgin hair disappeared, leaving him naked and confused...



Other wrestling pics from the day:




Before and after shot of Mikan's hair:



Monday, March 2, 2009

Before My First Birthday...

March 5th, 2009




Before my first birthday I...
Had innumerable blood gases.
Had a PDA ligation.
Had a hernia surgery.
Breathed on my own.
Breathed on a drager ventilator.
Breathed on a Servo i ventilator.
Breathed on a jet ventilator.
Breathed on a LTV 950 ventilator.
Breathed on CPAP.
Breathed on a nasal canula.
Breathed through a Passy Muir valve.
Breathed with assistance of an ambu bag.
Had at least three blood transfusions.
Had a tracheostomy.
Had a gastrostomy.
Had a granuloma removed.
Had many lung x-rays.
Had many echocardiograms.
Had many eye examinations.
Had laser eye surgery.
Have turned blue about a handful of times.
Tackled JT.
Had a nissen wrap.
Gotten nutrition by breastfeeding.
Gotten nutrition from a spoon.
Gotten nutrition from a bottle.
Gotten nutrition from an IV.
Gotten nutrition from a pic line.
Gotten nutrition from a G-tube.
Pooped from taking miralex.
Pooped from taking plums.
Pooped from having a belly massage.
Pooped from having a suppository.
Been under a billy light a couple of different times.
Kept warm from an incubator.
Kept warm by a blanket.
Kept warm from mom and dad.
Kept warm from my hot pot.
Kept warm by being a natural hot body.
Kept warm from a fire.
Have not used a furnace.
Have ridden in an ambulance.
Have had my g-tube "aggressively silver nitrated"
Have had nurses, firemen, EMTs, cousins, therapists, aunts, uncles, grandparents, and friends come over to my house.
Lived in the NICU, PICU, and my home.
Had five girlfriends: Sally, Dee, Julie, Mary, and baby Gracie.
Visited over 20 doctors.
Went down a slide 3 times (today).
Could communicate the "up" sign.

Happy Birthday Mikan!