Coming home

Now Grant's discharge date is May 16. It is still not set in stone. He has had many discharge dates and this one seems the most likely.

So I did it. I took all of the points accumulated through Southwest Airlines and bought him a ticket home. We are going to fly commercially. It will be "interesting". I can do it!

Feelings. So many feelings. From "the break is over" to "I can hardly wait to have him home" . For me, and I have been assured this is normal, there is no one particular feeling. I swing back and forth. Today I feel calm about it. I typically feel a bit anxious.

I have been validated over and over during his time out East that it was not my lack of parenting skills that equals Grant's impossible bed time routine or issues with being agreeable. It wasn't my lack of trying or negligence. It is just him. He is a challenge for a variety of reasons. Some intentional and some not.

We have some new things we have gained from life at KKI. Grant is eating orally. It requires 2 adults and what is called a Rifton chair (a larger high chair). I would have bought one sooner, but I didn't know what they were called. Through feeding therapy that we were able to receive 3 times a day since Nov...he can eat with this high level of support and we can continue to utilize his g-tube for meds and water as necessary. We will be keeping it (the g-tube) to be on the safe side for awhile longer.

We now consider him catatonic. They believe he has some sort of mood disorder which led to agitated catatonia. This alone can explain everything from his inability to comply with basic directions, to his regression with food, potty training, and his severe self-injury.

He is considered a self-restraining self-injurer. Meaning Grant does a lot to not hit himself. He fills his arms up with toys, he liked the boxing gloves, sits on his hands, covers them in plastic cups, etc. These ideas were all his. The hospital initially put him in 2 arm restraints to keep him from self-punching. There are metal rods inside the canvas sleeves that can be removed. For most of the day, the metal rods are no longer in there. Grant requires constant shadowing to block his attempts at SIBS. This is where life has changed the least and I remain the most disappointed. The idea is that he won't be in these arm restraints one day. Using this device vs. other options we have tried means he has learned to slam his forehead into his knee. This got pretty bad and they added a helmet. I am understanding it has been removed (the helmet) recently.

Grant is on 3 serious meds that have now caused a thyroid problem. So now he's on a 4th med to manage his thyroid issues. These meds all comes with a long list of side effects and while they have helped reduced his overall SIB numbers; he is alert but drowsier. Luckily it is helping him sleep better. So it's all trade offs and as I posted recently...not sure how this looks for the long term. I am worried it's a short term solution.

I hope by writing this down that this answers some questions to those of you that are genuinely concerned about him or curious about the outcome of a long-term treatment option. There has been no magic wand. I know there is a large number of people that have gotten to know him and care about helping him be the best he can be.

We are not happy with the meds based on our last observations. We don't want this to be the answer. But, I am not sure there are any other options today. I am still pushing for ECT. I feel like knowing whether he responds favorably to it is better than a life on medicines that might cause other horrible health problems. If he can get ECT, then he won't be discharged in May. I am aggressively working on things under the assumption he will. I am seeking PCA's and trying to decide if he will go to summer school. I am rattling my brain on how to handle the week where he doesn't have school but I do. I am thinking hard about how the house needs to be altered, if at all and how we will maintain the hospitals ideas of how life should be.

And on top of all of that, work on my business, help Scott with his and make other major life decisions. The month of May will be another interesting month no matter how it plays out.

Thank you to each of you that continue to follow my story and then take the time to comment. I would have stopped writing a long time ago if you hadn't kept encouraging me. I would have felt very, very alone if this communication vehicle didn't exist. Thank you again.