Tuesday, December 30, 2008

Mikan's off the vent!...kind of


We've started experimenting with taking Mikan off the ventilator for 15 minutes at a time. He has been tolerating it wonderfully! If feels weird and wonderful at the same time to be able to carry my child more than three paces without having to worry about getting tangled in white and blue tubing. We do have to carry his oximeter around with us, but I will gladly do that. We haven't used any 02 off the vent either, he has been doing it all on his own!

On the downside, Mikan woke up this morning with an extremely irritated g-tube stoma. It was raw and bleeding and it has been causing him a lot of pain all day (hence the crabiness in his "off the vent video") After calling several doctors today, he was referred to a stoma specialist; however, no one will be in their office till friday, so we have to wait it out. Right now Mikan is surviving on Tylenol, and we are just trying to watch it and hope it improves. It's a mess. Does anyone have any ideas of things to try as an intermediate step?

Feedings have been going a little better. We are avoiding the bottle completely and just going back to the spoon. He takes several bites, just at his own pace. We tried telling him that if he took all his food by mouth, we wouldn't have to mess with the g-tube, and then he wouldn't be in pain as often. So far he hasn't really listened. But we've learned by now that it's Mikan's pace, not ours.





video video

Wednesday, December 24, 2008

Christmas Eve Pics






Mikan's pediatrician called yesterday to let us know that she wanted us to try him off of all of his machines for 1/2 hour trials during the day. She said she wanted to completely skip the CPAP step because he's been doing so well. He's already on low CPAP pressures anyway if we were to make that switch from the ventilator. In order to do these trials, we need new equipment (an oxygen mask that would attach to his trach and a humidity filter as well. We've ordered these from Memorial and when they arrive we can begin the trials. I'm not sure how well he'll tolerate the switch. We have permission to try a couple times a day for 1/2 hour as long as he can keep up his sats. If he does well, we can extend it to one hour a day. We hope he does well so we can take him around to the different rooms of the house and get him some scenery changes!

Merry Christmas!

Merry Christmas! Thankful List

1.) Mikan Boy-Obviously
2.) Grace-Not a person, but like snow
3.) Patience-This could have been a long year, but it wasn't
4.) Visitors-Helping bring the world to Mikan, before he is able to go attack it
5.) Health Insurance-I could list the numbers, we'll just say our out of pocket maximum was roughly 0.34% of the NICU and PICU bill. (not including surgeries and home care)
6.) Help-Nice floor in the living room and wood in the shed.
7.) Competent Nursing, Doctors, and Therapists-hospital and home.
8.) Blog commenters-it's nice to feel connected.
9.) Good Jobs-supportive coworkers and administrators.
10.) Students?-depends on the day
11.) Silence Buttons on Alarm.
12.) Successful bagging Mikan at the NICU.
13.) Dr. P's small hands for the C-section.
14.) Dr. B's big picture thinking, and continued commitment to Mikan's health
15.) Primary Care Nursing-Thank you NICU
16.) Ronald McDonald House-let's dispel a common misconception: They don't push hamburgers or fries.

Saturday, December 20, 2008

Update








Mikan appears to be healthy. His secretions have reduced again. We're happy that despite all of his mini-flare ups, he has not needed to be medicated. Because he was doing well again this week, his pediatrician weaned his pressures more. His pressures are now 4 with a peep of 6. He is fast approaching not only the lowest ventilator support, but the lowest CPAP support as well. Next week his doctor said she wanted him to do some trials on CPAP. We don't know how long he will need the CPAP, but his support will remain low as long as he can tolerate it. His 02 requirement remains anything from from room air to 1/4 liter depending on the day.

Mikan's feedings continue to decline. Lately we haven't been able to get him to take anything by mouth. We are inclined to skip the bottle feedings entirely and just work on the spoon since he will most likely never need to take the bottle well.

But he's growing! He smiles more everyday and tries so hard to roll over!

Friday, December 12, 2008







Different positions Mikan falls asleep in; Mikan with Grandma; trying to get some Christmas pics

After another successful week, Mikan's pediatrician has weaned his pressures more. He is now on a pressure support and control of 8 and a peep of 6. We are supposed to call back on Wed. to give her an update and hopefully CPAP will be in the near future.

Mikan has had some increased thick secretions lately which is usually a sign that he is fighting a flare up of pseudomonis; however, we have been able to leave him unmedicated the last few times and he has recovered, so hopefully we can do the same this time. He doesn't act sick, we just need to suction him more frequently.

Feedings are still terrible, worse if possible. But we are hoping that the new speech therapist he will be seeing will help with this over time. In the meantime, the G-tube is our savior.

Mikan loves his passy muir valve. He tolerates it wonderfully so we use it 3-4 times a day. He babbles incessantly when it's on. We are also experimenting with having it on while he eats so that he can taste his food better; however, he prefers to talk usually so eating becomes more difficult when he can't decide to swallow or make noise.

Friday, December 5, 2008

Passy Muir video

video


He Talks!!!

9 Months Old Today!....And a Minor Setback




video



Monday night Mikan inhaled a small amount of condensation from his vent tubes. We suctioned him out immediately, but he probably had a small airway spasm or lung collapse because he didn't return back to his normal respiratory status. He went from not needing any 02 during the day to needing 2 1/2 liters that night (about 45%). He was retracting and breathing 50-60 times per minute that evening. The next morning he hadn't calmed down, so we had to give him a few breathing treatments with albuterol to open up his airway. Luckily this seemed to make a difference and we didn't have to take him into the hospital. We talked to the pediatrician every few hours to give her updates and she made recommendations and sent prescriptions for us so we wouldn't have to take him anywhere. However, the albuterol made him spastic and his heartrate was in the 190s, both common side effects of the treatment. Hopefully he won't need many more of them in the future. His 02 requirement over the next few days was up and so were his respirations, but he appeared to still be comfortable most of the day.

Now Mikan has returned back to his baseline and doing wonderfully. Yesterday we had an appointment with the pediatrician. Mikan is almost on the growth curve for weight and length and he is in the 5% for head circumference (for his normal 9 month age, not his adjusted age...for his adjusted age, he is doing wonderfully). He is now 15lbs, 14oz. She said if Mikan continues to do well over the weekend, we can turn his pressures down again to 12 on Monday. Then she will get a set of blood gases, and if all looks good, he will be on CPAP next and off the ventilator, this time hopefully for good. He will have all of his same equipment, he just won't have a breathing rate.

Mikan had an appointment today with the speech therapist who trained us on the Passy Muir valve. She said Mikan did the best with the Passy Muir she has ever seen for a first time trial. The valve allows Mikan to exhale through his mouth so he can pass air through his vocal chords and make noises. The videos show him finally making baby sounds! The Passy Muir valve is the aqua-colored plastic piece on his vent tubing. I'm having trouble loading some of the video, so I may try in a later post. His OT has been giving us exercises to do on his ball. He loves bouncing on it.

Because Mikan's feeding issues aren't improving, the speech therapist recommends that we wait until Mikan is sucking on a hand or a toy, or one of our fingers, and then we pour some of the baby food onto whatever he is sucking on. We tried this throughout the day today. It creates a big mess. I almost think it would be easier if we stripped him naked, laid down some plastic and poured sweet potatoes all over it so he could roll around and eat it off all of his body parts. Is this teaching bad habits? :)

Next week we are seeing a nutritionist and the OT. We will also be seeing a pediatric pulmonologist next month who will be giving us tips on weaning off of all the equipment.

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




video


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.

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

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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.

Saturday, September 27, 2008

A walk to the park






Some pictures from our outside fall trip today, and more dancing in the evenings.



video

Friday, September 26, 2008

Weekend

On the way home from his doctor's appointments yesterday, Mikan had another episode where his trach got turned a funny way and he began to turn a little blue. We had to pull over and help him recover. We didn't have to bag him, he recovered on his own once we gave him an airway...go figure.

Mikan got a chest x-ray to see if his lungs were hyperexpanded from the vent which we haven't heard the results of yet. We are allowed to introduce baby foods now every once in awhile to see if it will help him eat any better. We haven't tried this yet, but we are excited about the prospect of it.

Mikan's g-tube surgeon reccommended a longer G-tube and he thinks that will help with his granulation tissue and leakage.

We think Mikan is pretty close to smiling...that will be a fun development whenever it finally occurs.

Wednesday, September 24, 2008

Mikan likes home.

This morning we had a little scare. When I picked Mikan up out of his crib, his G-tube extension, which was still on from the night, got caught in his crib and it ripped out of his stomach. I quickly and calmly deflated the balloon, inserted the button, and reinflated teh tube. It was rather disgusting looking though. His sight is still seeping, and the balloon should not have slipped out that easily. His home nurse thinks it may be infected. And the balloon was inflated properly, so we don't know how it could have come out. Anyway, he sees a doctor tomorrow about his G-tube sight, so hopefully we can get some answers.

In the afternoon, his trach ended up getting slightly off-centered and the end closed up enough to make him turn a little blue, but we fixed it before he passed out and we didn't have to bag him. Oh the excitements of life at home.

Today we went to the Newborn Follow-up clinic at Memorial. Mikan saw an occupational and speech therapist. Then we came home and First Steps came and assigned him to an occupational/speech therapist that he will see once a week. He goes back to the Newborn Follow-up clinic again in 6 months. His evaluation showed that he was behind in weight, length, and fine and gross motor for his adjusted age. All of this was expected. The fact that he is making small progress now is good and he will hopefully progress rapidly once his respiratory status improves. A few days ago his two hands found each other. Now his favorite trick is holding them together. Right now he is wrestling with John on the floor, well, kind of, as much as you can wrestle with a ventilator-dependent infant. But he's also singing Brian Adams to him. So whatever manly activities John is trying to introduce him to are surely canceled out with "Please Forgive Me."

We also have new furniture! Helping keep Mikan's respiratory status stable!

Tomorrow: 2 doctor's appointments, his pediatrician and the surgeon who performed his G-tube, Nissen, and hernia surgeries.

Saturday, September 20, 2008

Mikan's trip around the house, a walk outside, playtime, bath time.