Monday, March 17, 2014

The End of An Era

Today has been a day of ups and downs and quite the roller coaster.

The day started great with Jax having his Feeding Team followup at Childrens Hospital for his weight, diet and feeding progress reviews. Jax has gained almost two more pounds since November and now weighs around 31.1 lbs. Since he's so short, his BMI is actually ON the charts which is GREAT since he was so clinically malnourished just one year ago. He showed the ladies how he eats now and they're all so impressed and happy for him (his dietician, the feeding psychologist, feeding therapist and GI nurse).
They said that if he continues to show this growth at his next check with the full GI team in 3 months, that we'll cut his nightly tube-feedings in half and see how he does. That will be the OFFICIAL beginning of his final tube feeding weaning. EEK! That means that if all goes well, he could possibly start trials of no tube-feedings in six months. So in 9-12 months he has the possibility of being tube-free... WOW!
Now, those are all just possible numbers and I know not to get too wrapped up in them, but how cool to think, hey?
So, we had to come up with a list of what has been changed in the past 3-6 months that has given Jax such a great run of growth, feeding and health. This is what we came up with:

- New asthma meds (no pneumonia and/or hospitalizations - first winter of his life!)
- hGH injections (making his entire body stronger and growing)
- Adenoids removed (no idea if this is helping with feeding, or contributing to better health)
- Eating real food and less Pediasure (Real food in his system seems to make the world of difference. A full yogurt each day keeps his GI/immune system much stronger)
- Reflux Meds (Seems to really help since Jax hasn't had any spontaneous vomiting in months, only vomiting from gagging on food at times)
- Increase feeding therapy to twice a week when we can which helps with getting the 'real food' in, and starting private OT once a week this year has really helped his overall sensory processing, which may be helping with food as well.

So, that's all great stuff.

The End of An Era part of this post, per the title, is Jax's Medicaid. I received a letter tonight stating he no longer qualified after being on it for 5 years. This is really great news, and anxiety-inducing news all wrapped up into one.

The criteria to qualify for this program in WI, is that the child must have substantially compromised functional capacity and require long-term nursing, restorative, or treatment supports or services. Jax meets one half with is tube-feedings, but his developmental delays have improved to a point of no longer qualifying. It's a fine line.

So, Jax still has a speech issue requiring therapy, but the delay isn't 2 standard deviations below the norm, it's only 1. If he had Brady's speech issues, he'd qualify (see what I mean with this example? Jax qualifies medically and Brady would qualify developmentally) His fine motor skills allow him to get out of a bathtub and use a toilet, even though he has to wear a diaper overnight due to the tube-feedings and can't use a utensil to feed himself, and yet, requires the therapy to learn many fine motor skills. The deviation is 1 below rather than 2.

See, it's a fine line. I always prayed he wouldn't qualify for this program, but hoped he'd be far enough along that the financial burden wouldn't be so high. He still requires the same amount of care/supplies/meds/therapies as he did last year, so it would feel more necessary to drop him from the program if he improved enough to not need something he was previously using.

He sees 4 specialists, 2 private therapists, has $1500/mo in medical supplies and $2300/mo in medication for a healthy month. If he has asthma complications or needs new braces, or needs extra followups for any of the clinics... see, my mind is spinning. I have no idea how much the new insurance will cover. We're at such a great place, that I kind of wished his Medicaid went one more year to see him to the tube-removal or no longer needing private therapy.

It is what it is and once I get through the hassle of changing his insurance and re-submitting everything for approvals, and get a new budget in place, it will be fine. It's just that MOMENT of reading the mail and sitting there thinking, "how are we going to do this?" that I need to sleep off tonight.

New big boy seats.
Still love the box.

Jax very PROUD at the GI clinic after getting dressed from his weigh-in.

An afternoon of fun at Toys R Us last Friday shopping for an upcoming birthday party.

Does this look like a bad idea to anyone else?

Saturday evening silliness.

My little leprechaun Brady.

Random St Paddy's picnic I guess!

1 comment:

Momma Bird said...

I am with you! As I hinted at in my last comments to you my guy has a huge OT need and has a speech need but isn't the 2 SD below the mean with speech so he can't get either! Yes a huge burden to drive an hour one way once a week after school and pay out of pocket each week for OT and since I am an SLP, we are using our money for OT and I am trying to do it all at home from an ST standpoint. You have way more medical needs at this point than I do so I can only imagine your burden. HUGS!