I've got something exciting to share... but you'll have to wait to find out!
(And no, I'm not pregnant... this is a Micah medical thing, sort of!)
Thursday, October 6, 2011
Abbreviated surgical history
This is for my medical mama friends (and myself, it's hard to get all the info in one place!), the rest of you guys can feel free to read it if you'd like.
8/31/09
Birth- EXIT to airway, intubated 3.5 tube
9/3/09
Micro laryngoscopy/bronchoscopy (ML&B), Neck dissection (bilateral)
10/2/09
ML&B, G-tube w/ Nissen fundoplication
10/7/09
Tracheostomy, ML&B
12/10/09
ML&B
3/4/10
Ultrasound of head/neck mass, ML&B with lasering of lymphatic malformation in airway, ABR hearing screen, bilateral PE tubes
4/12/10
Sclerotherapy, ML&B with lasering
6/23/10
Sclerotherapy, ML&B
3/3/11
Neck dissection (behind ear)
3/8/11
Sclerotherapy
3/15/11
Sclerotherapy
8/22/11
Neck dissection (bilateral), right parotidectomy
9/1/11
ML&B
12/16/11
Coblation tonsillectomy/base of tongue lasering
3/1/12
ML&B, sclerotherapy right temple
5/10/12
Mass excision right side, removal of right masseter muscle
6/15/12
Abscess drained (Lutheran)
8/31/09
Birth- EXIT to airway, intubated 3.5 tube
9/3/09
Micro laryngoscopy/bronchoscopy (ML&B), Neck dissection (bilateral)
10/2/09
ML&B, G-tube w/ Nissen fundoplication
10/7/09
Tracheostomy, ML&B
12/10/09
ML&B
3/4/10
Ultrasound of head/neck mass, ML&B with lasering of lymphatic malformation in airway, ABR hearing screen, bilateral PE tubes
4/12/10
Sclerotherapy, ML&B with lasering
6/23/10
Sclerotherapy, ML&B
3/3/11
Neck dissection (behind ear)
3/8/11
Sclerotherapy
3/15/11
Sclerotherapy
8/22/11
Neck dissection (bilateral), right parotidectomy
9/1/11
ML&B
12/16/11
Coblation tonsillectomy/base of tongue lasering
3/1/12
ML&B, sclerotherapy right temple
5/10/12
Mass excision right side, removal of right masseter muscle
6/15/12
Abscess drained (Lutheran)
Sunday, October 2, 2011
What you really came for...
This was at the Camp Mack Festival on Saturday. We all had a good time, and I know I can say I ate entirely too much delicious food.
The other is him just bopping around the house. I'd moved this chair out of the way, and now it's his little climbing sanctuary. 
Avoiding this...
I've been avoiding the blog mostly lately, because I don't really feel confronting what's going on. The kid isn't swallowing. Okay, maybe he is sometimes, I don't know... But not for the most part. Which means he's not eating or drinking for the most part. He's trying to eat and drink, for the most part it's just staying in his mouth or dripping back out. Speech and occupational therapists want another swallow study. ENT doesn't think he did anything to cause such an impairment. His 2 yr molars are near the surface, which could cause drooling, but something else is going on... The possibilities are nearly endless and I don't know where to start, if we can even convince ENT there's a problem.
We go back down tomorrow. Someone asked how many times we've been down there... I think it'd be interesting how many days we've spent down there in the last 800 or so days... Including the time we were there before he was born, we're at roughly 120. That doesnt even count the clinic visits/follow ups/day hospitals. Maybe someday I can figure out a general number. It's kind of depressing, so maybe I shouldn't.
We go back down tomorrow. Someone asked how many times we've been down there... I think it'd be interesting how many days we've spent down there in the last 800 or so days... Including the time we were there before he was born, we're at roughly 120. That doesnt even count the clinic visits/follow ups/day hospitals. Maybe someday I can figure out a general number. It's kind of depressing, so maybe I shouldn't.
Thursday, September 29, 2011
Not a post to read with your morning bowl of oatmeal.
Sorry for the lack of updates. Our freshly installed internet decided to stop working, and so far, 6 days later, Century Link has failed to fix it.
We went to Cincinnati Friday, they cut open two slits on his face, drained the fluid (estimated about 6-7 ounces), and put in a drain above his ear. Now, I'm not a fan of drains in general, but this is the worst kind. It looks like they put a straw in his skin, and stitched it in place. It doesn't empty into anything (so all over his hair)... It's so open it could catch flies. (It's covered, don't worry). Talk about infection risk, yuck. (As long as it's covered it should be fine, but still).
The good news is Micah was somewhat of an immune system at the moment. His white blood cells are decent (they're never good), and his IGG should be up still. We've made two trips out, one for pizza with some of our youth and one to do some visiting in Warsaw. Both good times, and he's not even sick yet! He's off the rapamycin due to the strange things it was doing to his body, although I'm sure we'll start it again soon. Boo! So, one infection risk of 4... That's the best we've done since oh... March?
We go back to Cincinnati Monday. I'm pretty tired of these visits, won't even lie. Should be quick and easy, although it's not til 5:30, so it'll be a late drive back.
Micah's doing well though, so no complaints.
We went to Cincinnati Friday, they cut open two slits on his face, drained the fluid (estimated about 6-7 ounces), and put in a drain above his ear. Now, I'm not a fan of drains in general, but this is the worst kind. It looks like they put a straw in his skin, and stitched it in place. It doesn't empty into anything (so all over his hair)... It's so open it could catch flies. (It's covered, don't worry). Talk about infection risk, yuck. (As long as it's covered it should be fine, but still).
The good news is Micah was somewhat of an immune system at the moment. His white blood cells are decent (they're never good), and his IGG should be up still. We've made two trips out, one for pizza with some of our youth and one to do some visiting in Warsaw. Both good times, and he's not even sick yet! He's off the rapamycin due to the strange things it was doing to his body, although I'm sure we'll start it again soon. Boo! So, one infection risk of 4... That's the best we've done since oh... March?
We go back to Cincinnati Monday. I'm pretty tired of these visits, won't even lie. Should be quick and easy, although it's not til 5:30, so it'll be a late drive back.
Micah's doing well though, so no complaints.
Thursday, September 22, 2011
More frustration on the lymphatic font.
His face keeps swelling and swelling, more than what I thought was possible. All the surgeon wants to do is cut open a slit and let it drain, then have us drain it daily (it's awful, but we've done it before). The hope was the Ped was going to do it, but he won't. I spent 5 hours waiting to hear that today. Now it's 3:30 and we still have NO PLAN. Another day, totally wasted. Now we need to find out if we are going down tomorrow (and if we need to leave tonight). Luckily my dad has offered to take me down (Travis is absolutely bogged down this week), but it would be nice if I could know so he could get off work.
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