Tuesday, April 5, 2011

School for my medically fragile!

I haven't even given school a thought for Jax until this last 6 months. Our doctor would never let him in a classroom, and even though I don't keep Jax locked away at home, even I drew the line at a classroom full of kids! Jax has been on home and hospital preschool for the last couple years. They only come once a month, for like 45 minutes, so its nowhere near what he would get in a preschool class. I never cared about that, because of his fragile health, he gets home OT and PT through our insurance, and that's what he needs more than preschool.
Now that Jax is kindergarten age this year, the question of the classroom has come up again. And I am having to make the best decision for my little man!

At first I still said no way to the classroom. One thing that was big for me, that may be different for other families, is that Jax will never learn his ABC's. He'll never learn his numbers, or colors, so is it worth his life by putting him with other children. There are many fragile children, that still mentally can learn all that school offers. Jax, on the other hand, is simply working on head control, and grabbing with his hands.
Since having Arina home, and seeing the leaps and bounds he's made in development, I'm actually considering a school for him. Of course it would be scrutinized big time, and I would be doing a lot of checking it out before he actually went.

Even though we are moving, we did Jax transition meeting, and checked out a new special needs school our district has. Now this school is amazing!! Its hard to believe that our district, that has struggled just to stay afloat since splitting with another district, has this new school. The other district took all the money, even though we have triple the children. Jax school teacher from last year quit to stay home with her kids when they wanted her to take double the load of children. And not just any children, special needs children!
The land for this school was donated by the family of a DS lady, that used to go to the old school. That left them wiggle room to make this school fantastic. Its also named after her. Kauri Sue Hamilton school. This school would be amazing for Jax. There are no typical children in this school, only special needs. Everything is scrubbed between children, and they have many fragile kids, so they know things need to stay clean. They have sensory rooms, with bright lights. They have a pool, that is as warm as a bathtub. Even the room itself is kept super warm, because so many of these kids, Jax included, can't regulate their own body temperature. They also have an amazing therapy room for the kids.
Honestly, I shouldn't have even toured the school, because this is a school that I could send Jax too, and it kind of sucks that he won't get to experience it. He would have a nurse with him 24/7, because of his trach, and the director of the school couldn't believe that we didn't already have a nurse for him. She said all of their trach kids had home nursing. Well not this kid! And not by my choice!

Its not a definite go on school for Jax. Because we are moving, I have to see if they have a school strictly for special needs, with no typical kids. I have been told by a friend that the city we are moving to has a fantastic special needs program, so I'm hopeful!

We also haven't decided if we dare put Jax in a classroom. Yes, their are many kids that are trached and vented. The one difference with Jax is that he wasn't trached as an newborn or infant. Where they usually are expected to get bigger and stronger. We were forced to trach Jax because his lung function was failing so miserably. He wasn't trached until he was 4, and almost 5 when starting the vent. His lungs are continuing to trend downward, so he is actually getting sicker instead of stronger.
The puffiness is going up again, and my ped was thinking the cath lab was where we were headed. But I refuse to go back to the cath lab with our current cardio. So we have to decide if he can wait until we move, or I can go with another cardio the does caths from the same hospital. We even considered just having the radiologist from specials do the work. He does caths, but strictly to look at the veins, he couldn't measure pressures or anything like that. This is a decision that we are having to make right now. We can't jump into the cath lab, because Jax has only one vein left to use! They go in the femoral veins on each leg, and sometimes the chest. Jax can't have any central lines in his chest or arms, because he's clotted off all those veins. His right femoral is toast! They tried using it for a central line during his last surgery, and couldn't access it. They had to do a cutdown to get into that vein, and even then it was super sensitive and bled like crazy! So his left femoral is all this kid has left!
Jax is also probably going to be having surgery for the vagal nerve stimulator for his seizures. There are just no meds left for us to try. The NP wanted to start a new med, but our neuro said no way. It affects the liver, and with Jax already fragile body, this med just wasn't worth trying. So we have an appointment with our neuro to discuss the VNS. He gave me a video to watch, explaining how it works, and I'm hopeful that this can help Jax, even just a little bit. His EEG shows non-convulsive status right now, and one little slip can send him into full status, which would be fatal for him. So we don't have a lot of time play around with this. They say its a simple surgery, but it involves two incisions. One in the chest, and one in the neck. Just more scars to add to the collection!

17 comments:

Denise said...

Our school here had kindergarten round up this past week!I am scared to put our son in the school.Their special ed departemnt is not that great and i dont feel he would be safe going.My husband and I are pushing for Jaxson to get homebound school.That way he can get pt.ot and speech from school but yet be safe at home with me.We also do not have a nurse and do all Jaxson's trach care ourselves.He would need a nurse while at school.We will be having a meeting with special ed department soon.Good luck on your decision about school for Jax.

Melissa said...

It sounds like a great school, but like you said, moving changes everything. You have lots of hard decisions ahead and I will be thinking of you!

Colleen said...

We have been very fortunate to get lots of home based therapy. I'm hoping eventually we will get Isaac out there into a classroom, but then the wrong cold or flu could be bad and so not worth it! It's a tough decision.

Kristin said...

Tough decisions!

The VW's said...

That's a lot of big, and tough, decisions to make! Hope everything comes together easily! Hugs!

Michelle said...

Oh.my.goodness. I read line after line and think how ridiculous I am about the stuff I worry over with Lillian. I am in awe of you. Your son could not have a better Mom.

McClellan Family said...

I can't say enough good things about the Kauri Sue Hamilton school. I have been going there for over a year and a half with my now three year old son. We are sad to leave everyone behind, since he has been moved to the special preschool program in our district. He has Aspergers Syndrome. I know it is a far cry from what you are dealing with. But I know even if you send Jax there for just a little bet they will take very good care of him. It has been fun walking through the halls and seeing the little art projects that they have been doing and looking into the classroom on the way out and sing the teachers treat each child so tenderly. Best of luck.

Scrappy quilter said...

Oh Lacey so many hard decisions to make especially when you have a move in there too. I hope you can find everything you need for Jax. Hugs

Shelly Turpin said...

Wow - what a school! How incredible. And reading again about all that Jax is facing is astonishing. Y'all will make the right decisions for him. I know it. Hugs to you with everything going on.

Mama Mason-Mann said...

Sorry you have so many tough decisions to make. Whatever you decide will be the right choice for your family and for Jax. (I know, that's easy to say!). Good luck with everything, and NO surgery is easy (on the parents)! It's always scary. I was just as nervous for Chloe's eye surgery as I was for her heart surgery!!! It just didn't last as long! HUGS all around.

LibsMommy said...

I thought the same things about sending Libby to school. She had brain damage and terminally ill and I just didn't know why but I gave it a try and it was the best thing that could have happened to her. She was in a special needs class of 3 to 4 other kids. 2 teachers and a speech therapist or occ. therapist to each class and we could either stay with Libby because of the oxygen or they would pay for a nurse to stay with her. They did texture play with Libby and she actually made improvement. They didn't do numbers or abc's. Instead they did bubbles, song time, pretend play, art, story time and it was really nice so I say give it a shot.

ParkerMama said...

That does sound like a fantastic school.....but Lacey, you are SO much braver than I am. Sending Parker to school with all the creeping crud scares the beejeeberes out of this Mama. Especially during RSV season.

However, you will be proud to know that I do have lots of field trips planned for Parker this summer.

Every time you talk about your Cardio I freak a little bit on the inside. We are are headed to the cath lab in July. Then, depending on the results, we are thinking of taking Parker out of state. But that will take a buttload of fundraising unless Medicaid crosses state boarders.

Hugs for that surgery decision you have to make. xoxo

DevonLeah said...

You are an amazing momma for him!! Love the fuzzy orange and blue jammies, Camden has them and I just want to snuggle with him when he wears them! Prayers for the best decision for JAX! ((hugs))

Zoey's mom said...

I am thinking optimistically and positively and am hoping there is just as perfect of a school waiting for Jax here in California.

Everyone else has said it and I will echo it ... you are an amazing mommy to your little man and you will,in the end,willdo what is best for you all.

As for the VNS... praying that Jax will benefit from it and praying for Miss Emily as well.Hoping it will be both their miracles.

Thinking of you and hoping you are all managing okay without Ray.

Denise said...

I don't know alot about it, but I do know that Corona has one school that is strictly special needs so you will definitely have to look into it when you get here :)

Stephanie said...

We put Aiden in a special needs preschool for a few years. It was wonderful!

Becca said...

Wow, that school sounds amazing. And I know some of your drama about the home-care nurse, and still can't believe you aren't able to get one. :-( Maybe when you move...?

I'm always taken off-guard when you talk about Jax' complex medical issues. I can never believe that that one tiny little boy can be so medically complicated! ((hugs))