Jakob's surgery

Stefan & Jennifer · #1 10-31-2003, 07:12 PM

Hi everyone,

Thanks for all the supportive e-mail & PM's we've gotten from the board members. Jake had his mid-face advancement and monoblock distraction surgery today. After the surgery, the doctors told us that he's the youngest they've ever done this surgery on, but his deformities required that it be done now. Everything went really well; they told us to expect a 5-7 hour surgery, but it was over in 3 1/2 hours...no problems at all.

He's hurting and on morphine in ICU right now...he has metal rods drilled into his forehead and cheekbones and has an incision with over 100 stitches across the top of his skull. We'll be twisting those rods every day for a couple of weeks until his face and forehead have advanced enough. He may have to have this surgery repeated in 5-6 years, though.

The ENT scoped his airway and said it looked fine. He may put in some more nasal stents when we come back to get the rods taken out in a few months, to make sure that Jake's airway is adequate for decannulation (hopefully) in the spring.
He put in a cuffed 4.5 Bivona trach for the surgery to make ventilation easier and said he'll switch back to a 4.0 Shiley in a couple of days.

The Craniofacial surgeon said that he was able to run probes through the nasal openings without a problem, so maybe this won't be that big a deal.

The bad news is that Jake's ear canals are just as small as they look and he'll probably need hearing aids pretty soon to avoid further speech delays.

Anyway, thanks a lot!!

Colin's mom · #2 10-31-2003, 08:39 PM

Stefan & Jennifer,

So happy to hear Jake's surgery went well! Glad to hear they are trying to make him as comfortable as possible. Will be wishing him a speedy recovery. I'll talk to you soon.

Lesley

Jacob's Mom · #3 10-31-2003, 09:21 PM

What a lot for such a little guy! I am glad things went well and decannulation is in the near future for him.

Take care!
Amanda & Jacob

christyw · #4 11-01-2003, 03:27 AM

That is very relieving and happy news! I know you guys had to be so stressed over this, and I'm glad that he's doing good.

Gaithy has hearing aids too....the transparent hot pink - VERY cute little mini-behind-the-ear - BTE's. http://www.babyhearing.org/Hearing....cal.asp ----this is a website that has the colors of aids and ear moulds - I don't know if you've already checked into it all or not, but I like this site. (If you can't get there from this specific address, go to www.babyhearing.org, click on "next steps," then on "hearing and amplification," then "hearing aid choices," then "what are the different styles of hearing aids," and then click next thru to the sixth page, I think and it shows all the colors.) The entire website is nice.

I was not happy when I found out they were needed, and I know this may sound materialistic or shallow - but getting online and finding all the great colors, that helped me so much, and I immediately called the audiologist, because I feared that with Gaithy having Medicaid only that we couldn't get them - but I was wrong! The day she was actually fitted, when hers had come in, I thought I'd be devastated, but I was actually quite happy and positive about the whole situation - they really are cute! AND she is doing so much better in speech since she's been leaving them in full time!

I hope you're all home soon - keep us posted!!

christy

cariaad · #5 11-01-2003, 07:54 AM

Wow, Im glad it went well. I had no idea it was such a long process (weeks with rods in place). Will it cause much pain during the time it's being done? I sure hope not. HAng in there and keep us posted. Deb

Stefan & Jennifer · #6 11-01-2003, 08:03 AM

Thanks for your nice replies and thanks for the hearing aid info, Christy. The rods aren't supposed to cause a lot of pain, just some discomfort, as they will only be advanced 1mm a day or so. The craniofacial surgeon told us that this surgery may have to be repeated 1 or 2 more times as Jake grows up, possibly in 5-6 years.

The neurosurgeon said that he might need a shunt some time in the near future, but that there wasn't a need for one right now. His brain development looked good and we're hopeful that he'll be mentally okay, as most Pfeiffer kids don't have any mental retardation...but it's still too early to know for sure.

Well, heading off to the hospital......take care

Stefan & Jennifer

arielsmom · #7 11-01-2003, 02:51 PM

I'm so glad for you guys. Everything sounds so hopeful in Jakes future and the possibility of decan. in the Spring, thats just amazing! Ariel also has hearing aids and her canals are extremely small, she's had them since she was about 5 months and the biggest challenge is actually keeping them on since her ears are tiny tiny, I think her ear molds were the smallest they had ever made! We thought Ariel would need some cranio-facial surgery but so far they don't think so. I hope Jake is more comfortable soon!
Karen