Tuesday, June 9, 2009

Recent Visits

Mikan and Ephrem (my high school/college friend's new baby)



Doesn't Mikan look like a beast compared to cutie Ephrem? I forgot babies were that small and cute.


Mikan and his Aunt Annette. They got some cuddle time this weekend while she took a break from her two boys.




Mikan with Aunt Annette, cousin Maria and JT, and new cousin Tyler. Mikan was more interested in JT's face than the camera.




This is Mikan playing in his pool. He loves splashing around in it. I'm pretty sure it's good for him (leg/back strengthening or something...)




video

Some updates:

Mikan's g-tube has been looking fabulous still. It continues to leak, but the granulation tissue is manageable, and we haven't needed to use silver nitrate in a month. Most importantly, it doesn't cause him nearly as much pain. In fact, he's recently become interested in playing with it! This improvement is important because his oral feeds remain terrible. He will put anything but food into his mouth.

After 3 whole weeks, we are still off the vent! We had another blood gas done in the home last week, but haven't got the results yet. Mikan has needed 02 at night every once in awhile, but for the most part, he is using his own fully functioning respiratory system (kind of).

We see the pediatrician and speech therapist tomorrow.

13 comments:

Colleen said...

Hooray for being off the vent for 3 whole weeks! That video is just too cute of him jumping in the pool!

Cathy said...

Wow, I just found your blog. Your son is so beautiful. i love the picture of him kick in the pool That is a great idea, my Annabel loves the water and to kick her feet.
Annabel has a button also. I was struggling with the oozing also and the granuloma. Another mom told me to us Kenalog cream around the site. Only like 3 days then stop briefly and do again. I also found that if I took the tubing out when the feed wasn't going, the granuloma cleared up. It seems the movement is what causes her to have the oozing and granulaoma. At home we don't do continuous feeds, but the hospital always leaves the tubing in between feeds. This is where we have the biggest issues. Hope this helps if you haven't tried it yet. i will be back to visit your cutie pie.

Life in the Bend said...

What a fantastic idea to suspend the jumperoo over the pool! I'd love to try that myself.

Alicia said...

Love the Johnny Jump up and the pool, what a great idea! He looks like he is having a blast!!

Glad to hear about the g-tube, I know how stressed you were and how much pain it was causing Mikan.

Good luck at the appts tomorrow, update as to how they went!

Hope said...

That's so great no vent for 3 wks!! How does he handle his glasses? Ava has an eye appt next month and I'm not looking forward to it.

awesome aunt annette said...

Ahhhh! Mikan and I look like we have the same smile, or at least cheeks. Remember he likes the alphabet song, have you tried it again? Hope to see you guys soon!!!

Jennifer said...

and I thought Ephrem looked huge next to Theresa's baby, Levi! Mikan looks giant...so cute! Glad they could have a play date.

ANewKindOfPerfect said...

Three weeks off the vent is awesome! Way to go Mikan. I hope he continues to amaze you. :)

Jamie said...

i can't get over how good (and adorable) he looks! i think we need to work on creating and adult jumparoo over water.

Michelle and Sean said...

Hey Jenna, Yes I agree I thought that this would be the case as well for Maggie getting her trach out. They are thinking that once her trach is out then she will still need a bypass mask or high flow or just oxygen nasal cannula. But he said that for sure she would have it up to the time her trach came out because she has no resistance and he is hoping that when the trach comes out then maybe she will have the muscle strength to open her lungs all the way because of this resistance. I'm not sure. I don't really know that much about this stuff I guess because I thought today was going to go a lot better. Thank you for asking and giving advice. I don't know anyone else with a kid with a trach so I don't know what is right and what isn't or what is good and what isn't. So let me know if you have any advice or any ideas for us. I would love to hear from you.

By the way Mikan is absolutely adorable and I still can't get enough of him with those cute glasses. I think I might have to try that jumper thing over the little pool with Maggie. She doesn't really like anything but maybe this would be different. Hope all is well with you and the fam.

Take care
Michelle

DevonLeah said...

im so glad he is still off the vent!
Do you keep the little 2x2 sponges under the gtube? If I dont, the acids start to break down Camden's tummy around the site.

Mikan is a doll!!

taraxschmex said...

aww Mikan is so precious!! He's gettin so big! I love the little pool video! haha

Michelle and Sean said...

Hey Jenna. I don't really know about the oxygen thing because from his report that we got a copy of he said that he is worried that she won't be able to open her lungs up all the way. So to me it seems like O2 wouldn't be an option it would have to be high flow or cpap. These doctors aren't clear. The other report we got from another doctor she just contradicts herself all over so I don't know what the plan is. It sounds like the trach is going to be in for a long time until they can figure out her hypotonia at least.

And yes I hope they have mild lung disease. My other kids both have asthma and it is pretty frustrating trying to figure out the doses of all the meds because they change so much, especially with seasons.

I just hope we get clearer answers in Boston. And just so you know we leave on Sunday and her appt is on tuesday!! Yay!!

Hope Mikan is doing well. Give him a hug from Maggie. Oh and thanks for your help. Let me know if you have anything else. Because I am going to ask the Docs in Boston about the other things you mentioned.