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.

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


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

He Talks!!!

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

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.