I did not have to click my ruby slippers together but somehow we did get back home on Sunday. I was beginning to feel sick being in that little room for so long. I could not use the shower in Sam's room as it was hardly a trickle of water that came out plus it did not feel especially clean. Sleeping on the pullout chair/ couch was NOT much fun as usual. The ICU is a different story.. much cleaner shower and not too bad recliner but then you often don't want to use either because you have more doctors rounding through constantly and things are more critical so you are feeling like you need to stay "on" with bated breath about his status and any treatments or tests...not a time to get much shut eye.
Anyways, before we left Sam pulled out his gtube and the tech just stood there blankly while I hollered for supplies etc..by then I was ready to go home. He did it again at home and this time the balloon had popped on it and we had to use our back up button..leaving me without a backup so until one comes..he better not mess with it. In the hospital they slowly inched up the rate of his feeds again with no particular understanding of why his gut shut down these past few illnesses. Seems as though if he is stressed in the smallest way, everything shuts down. He was looking bright eyed and bushy tailed though after the IV fluids and some rest so we hit the road sunday. He has been sooo happy to see his sisters and they were pleased as punch to see him. They have however been more difficult to handle in the "pushing my buttons" category.
At home Sam has had a few difficult periods tolerating feeds at a regular rate but overall he has been fine. Tuesday I had a visit from the nursing company about the details for setting up the only nursing care that insurance will cover which is NOT much. They will cover about 60 hours total per year so we are getting about 8 full days between now and end of the year. While in the hospital we agonized over how to obtain the care he needs but I am still completely blocked on this. If we stay with insurance they won't pay anything and now that we are having to change from our ultra expensive group plan..we will be lucky to be approved by a new independent plan. Kids are legally now not allowed to be turned down for preexisting but our current agent was pretty straight forward about his feeling that they would find some kind of bogus reason to not take Sam. Our group is going to be even smaller now so we may be looking at an even more expensive group policy as well and that may be impossible for us right now. We still won't have the nursing home care either way.
I have been researching a secondary medicaid waivor which is based on his disability and not on income etc..It comes under something called the katie beckett law which is specifically for kids that require medical equipment and involved care such as Sam does. It is apparently more readily available in other states but nearly impossible to access in Florida.
Today we had the nurse for 7 hours and BOY... what a day of clarity of mind and spirit it was for me. I was a little sick to my stomach leaving him when he has hardly ever been out of my grasp but I needed to trust someone to take some of this off my shoulders a little for just that short time. I actually left the house without lugging tons of medical equipment... wow what a feeling! I did not have to think ahead about every med that would need to go along or how much food should be primed in his pump or whether oxygen should be brought along just in case.. or whether Sam would be comprimised by my need to get groceries.
I was able to watch Sofie in her musical program at church and run something into Bella's class that was forgotten this morning. I can actually see how I would have a life again if I had this kind of support.BUt it is not like finding a babysitter..nursing is very expensive. I could work and contribute to finances though if we had this help. I could be fresh for the girls. But all we get is these 8 days so it is a bit of a tease. I am thankful God has given us this small break and I hate to be greedy but please..if you are listening Lord... we need the extra support. Show us how to make it work so that Sam can thrive and grow safely in our home without pulling everything we have built to pieces. For now I am just going to keep praying and doing my research. I am sure it will all work out. Bless him..he is worth every agonizing moment. He is so sweet and innocent. He looks at me like..I am sorry mom that I have my own set of instructions and don't fit the mold. He is absolutely perfect to me.