Over the past week I have been trying to learn as much as I can to determine how we will care for Leo with his new Trach. The state has a special program for kids they consider medically fragile and technology dependent. It is referred to as the MFTD waiver program. Eligibility for the program is determined using a point system based on medical challenges. Prior to the trach, Leo did not have enough medical challenges to qualify for the waiver (seems weird cause he wasn't healthy!!). We were denied other services based on our income level. All kids with a trach qualify for the MFTD waiver and all waiver kids get full Medicaid coverage. We have great insurance through State Farm, but Medicaid will now cover our co-pays and $10k max out of pocket. Although the co-pay was totally manageable, I was really happy today to learn about this benefit! Since the MFTD waiver program pays for services, they also evaluate and manage your needs. They use their point system to determine if and how much in home nursing Leo needs. With the trach it looks like we will get anywhere from 60-120 hours. The big range is based on if he is on a ventilator and how he takes his food. Leo eats bolus (all at once) to gravity as opposed to continues feeds on a feeding pump. His feeding system is considered the simplest which is good for us, but gets us the least amount of "points". The vent verse non-vent system for the trach is also annoying because with or without a vent still needs someone has to be awake with him 24/7. In the upcoming weeks the people at the state who run the program will be coming to our house to determine if it is fit for Leo and how many hours of nursing he needs. We are hoping to get enough to cover sleep and work.
They also gave me a list of 8 nursing agencies. I have to call them and interview them to determine which agency we want to go with. I will not be interviewing actual nurses, just the agency that hires them and basically acts as the middle man. I have joined several facebook groups for trach kids and have been hearing horror stories about the nursing. Hopefully we will find some good ones. It will be such a change since we are used to normally having great nurses at the hospital.
Leo had a good day. I got hear around 10:00 am after being home last night with Sammie. Leo got his new home version of the vent and is doing really well on it. I didn't realize it was such a change, but they said most kids have to switch back to the old higher tech vent a few times before they get the hang of the home vent. Today has been the happiest I have seen him since being in the hospital and not receiving pain killers. He was bright eyed and seemed happy most of the day. He has started back up on physical and occupational therapy. Both have said he needs to get off the flat spot on his head before he ends up with a helmet. Easier said than done because he really likes that spot and does whatever he can to wiggle back to it. His PVC is still high and pulling back his PICC line didn't help. The doctor said she wasn't worried about it because its not actually hurting him and is usually just a sign that something else is wrong, but she said all of his labs look good so we will just watch him closely. Tomorrow morning is an x-ray to check for chylo so lets hope it is not back!!
Terry had bowling tonight and Theresa had Sammie over to play with the boys. As you can see she had a blast in their new basement. In the pic she is enjoying a movie with popcorn on the new couch!
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