Friday, January 3, 2014

Re-Entry {Cleft Palate 101}

So...we have been home for about 1.5 weeks and things are starting to calm down. Jet lag is behind us THANK GOD.  My little sister stayed with us for the first 5 days which were plain awful and we owe her and her hubby a world of gratitude. We are absolutely trying to get into a groove and attempting to figure this 4 kid thing out. It is coming along!

Concurrently, I have been trying to determine Luke's next steps in terms of his cleft. As I briefly mentioned the day we met Luke, his cleft palate was significantly bigger then his referral indicated. His referral indicated his cleft was the soft palate only but when we saw him it was clear he had a hard palate cleft as well. Meaning a few stitches are not going to fix this problem.

So...I have been researching/learning a lot since we came home about cleft lip and palate children.  In terms of care, I have been looking at our local hospital (U of M), Beaumont in Detroit, and a hospital called 'Primary Children's' in Salt Lake City.

U of M is indicating we can see a nurse in January, a plastic guy in February, and we could schedule his 1st lip surgery for 4/1.  We could then schedule his palate surgery would be sometime in the fall. We could start speech therapy before fall but, in reality, it sounds like we have to wait for the palate to be fixed in order to start hard core speech.  Frustrating news of a mama whose child is almost 2 and cannot communicate besides yelling and pointing (we are teaching him signs too).  He has had substandard care his whole life and the best we can do is a palate surgery almost a year after he comes home?  To boot, U of M didn't have a clinic so I had to see all of the doctors separately. That would include a 1) Plastic Surgeon, 2) ENT, 3) Genetics Doctor, 4) Echo/Cardiologist, 5) Otolaryngologist (hearing/speech), 6) Dentist/Ortho.  That is 6 different appointments/visits that I need to make. For a mama of 4, not exactly an easy task.

Beaumont was a little bit better - they at least had a clinic so I could get in there all at once and see the plastic guy, the ENT, geneticist, etc. I have that appt next Wednesday.

Then there Utah.  This team does a specific type of cleft palate repair that, from my knowledge, is only done in Utah and a few places in Europe.  They have a DDS on staff at the hospital (he runs their cleft clinic) who places a prosthesis into the child's cleft palate.  It is basically a fake roof of their mouth.  They leave this prosthesis in the child's mouth for a few years while the child's natural bone  continues to grow.  Meanwhile, the child learns to speak, eat, etc using a 'normalish' mouth.   Then at 4-5 years, they take out the prosthesis and see what is left to repair and the palate is then closed. Lots of pro's to this method including less surgeries down the road. It also gets us into speech now vs when he is almost 3.  Because the palate is not forced shut at such a young age, less orthodontic repair/procedures will be required when he is pre teen/teenage years. At this point, it is looking like enough Pro's to cover the 'con' of traveling to Utah.

Amazingly, Utah had two cancellations/openings that allowed us to book a clinic appointment on Monday 1/13. They said that if we liked the team, they had a cancellation and could fit us in on Wednesday 1/15 for the prosthesis surgery, ENT, and lip repair. In surgery and appt land, this is a huge blessing! They had to line up a ENT, Plastic Surgeon, and a DDS for his surgery. But, it all worked out!

Due to the insane amount of travel I have taken lately, I also had enough points to cover the last minute flight to Utah without purchasing a ticket.  Luke is just under 2 so he can still sit on my lap!

To boot, one of my high school friends now lives in SLC and offered to pick me up from the airport and let us stay at her house. She has 3 kids so knows how crazy this is going to be but still offered. Seriously?!

We are feeling very blessed!!


A few recent pics...

New Year's Eve

In our backyard/swap area!

Yum, Christmas cookies!

New Year's Eve !!


Elizabeth said...

That is great news about Utah. I hear Chicago Children's also have a good cleft team. What is a DDS? Amazing that you can get in so quickly. I hope all goes well and that you are able to get back to family quickly. I forget how I found your blog but admire you for being a mama to so many little ones.

Julie Pritzel said...

Fabulous news! Text me if you need anything.

ann chaloux said...

I don't know.a.thing. About cleft surgery, but I do know the staff,facilities,and everything about Beaumont Childrens is the best!! They are part of Childers Miracle Network and are exceptional at what they do. Welcome home, and whatever choice you make will be the right one!!! Congrats, and can't wait to following along!!!

Tera said...

wow! I love how perfectly it all worked out! only God!