Friday, January 24, 2014

Micaiah Meeting

So Art and I had a three hour meeting yesterday with various specialists to discuss virtually everything about Micaiah.  There were the two nephrologists/surgeons, plus two social workers, the physical therapist, and a nutritionist.  Can't remember who else.  Sooo much to decide about this boy.  Sooo much to do about him.  It just continues to get more overwhelming.  And I told them, like I've told you here before, "If I had a nickel for every time someone told us something and said they thought we already knew... "

So we had been told Micaiah COULD NOT be discharged until someone was trained to do his dialysis at home.  (Oh, didn't we tell you?  We thought you already knew.)  Which, we were led to believe was an afternoon's instruction on how to use the machine.  So we wait for them to set up the meeting.

Then we're told it's a five day, 40 hour training, (Oh, didn't we tell you?  We thought you already knew)  which of course, we simply can't do with all our other kids' special needs.  Next week alone I am going to appointments from Raleigh to Charlotte for three different kids; important appointments that I've waited months to get, rescheduled one once, and cannot reschedule again.  So we asked if Canaan could go take the training, as he is an adult, living at home, and does have medical training making it a reasonable choice.  He could learn and then come home and teach all of us.  They said that would be fine. So we put that on the calendar and start moving things around accordingly.

Until last Saturday when we learned inadvertently through a phone call, that the truth is the training is actually done OUT-patient, and Micaiah HAS to be discharged BEFORE we can do the training. (Oh, didn't we tell you?  We thought you already knew.)   Total flip side of the other info, plus adding a lot of concerns.  For instance, a medically fragile boy being transferred to and from a facility in the next city for 8 - 10 hours a day right after being discharged from the hospital.  Doesn't seem wise for Micaiah.  And how about transporting him? It currently takes two people to transport him in most cases.  And I feel VERY uncomfortable about having him discharged, sent home, when none of us here have ANY training to care for any of his needs.  It just didn't make any sense, but we're told that's how they do it. 

Until we talk to them at the meeting yesterday where we learn that Canaan is not allowed to do the training after all!  It is required that the person who will be doing the dialysis get the training, and the person who is trained is "not allowed" to train anyone else.  I told them that Canaan would not be doing the dialysis; it would be me.  Then, they said it is required that I get the training. (Oh, didn't we tell you?  We thought you already knew.) 

But wait.  There's more!  :-)   Not only am I required to go, but it is REQUIRED that a SECOND person go as a back up.  He can't be discharged and released to go home until we have TWO people trained to do his dialysis. (Oh, didn't we tell you?  okay okay, you get the point....)   Who can do these things?  It is overwhelming.

They also said that they are now requesting the dialysis training company to come to the hospital for the training so that the training can be done while he is still in patient, which would be almost essential if this is able to happen at all.  In, out, in, ???  And this is where we are now.

No, we are not sure how on earth we will accomplish this, but it looks as though Art and I are somehow going to have to figure out a way to do this, and work with our older kids' schedules to see that everyone is taken care of. 

Besides all of this, we had long discussions about Micaiah's future care, the dozens of medications he will be on, the many, many appointments he will have in order to monitor everything about him as his whole system is completely fragile.  He will have a special diet and special equipment at home to accomplish all of the things that have to be monitored and done to and for him each day.  It is huge.  And for this reason, we ask for continued prayers for us to be able to do these things that for all intents and purposes appear to be completely impossible for us.  We need answers and we need ideas and we need wisdom and vision.  We need to think creatively and positively and figure these things out.  And we need strength. 

Micaiah has several months of healing and leveling off of levels and other physical problems before they can even begin to consider the idea of a transplant, assuming he would qualify anyway.  And then we have mental and behavioral assessments to be done to see how and where he can be placed for school.  He will have to have additional physical therapy and occupational therapy to be able to accomplish even the simplest of self care tasks.  The neurosurgeon has to do some tests at some point to take into consideration his spina bifida, which ironically we had thought was his main health issue.  It's importance has fallen to the bottom of the priority list now.  Shall we throw in dentist and eye doctor and audiology appointments?  And don't forget that he has bonded more with the nurses at the hospital than he has with any family and we are still dealing with huge adjustments for a boy who has been institutionalized and uneducated all his life, as well as neglected and possibly abused.  In the midst of all of that, we'll begin the often precarious process of establishing bonds of a family and proper relationship goals. 

So this is your update on what is happening this week with Micaiah.  We did visit him while we were there for the meeting and he is doing very well, is always very happy and loves to play with the nurses.  He was very happy to see us.   For those of you who know him well and have advocated for him, you are probably aware that his birthday is Sunday.  That is the day that he would have been deemed ineligible to be adopted by a family.  And according to the doctors and specialists we have seen, it is completely possible that he may never have made it to that birthday at all in the condition he was in.  We do not think he knows it is his birthday (or what a birthday is), or how old he is, but I am sure the nurses will be trying to communicate that to him.  We plan to all go and visit him on Sunday afternoon and bring a cake for him.  We will take pictures and let you all share in his birthday celebration.    Stay tuned!!





 
Scene from My Cousin Vinny  (got to keep your sense of humor).

3 comments:

  1. My prayers are, and have been, with you and your family. I feel overwhelmed just reading your post, so there is no way to imagine how overwhelmed you must feel. I have no other words, just know I am praying every day for you.

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  2. Happy Birthday Micaiah!!!! I hope you have a wonderful day!!! I will be praying for your health and for all the details to work out in the best way possible! Keep up your courage - God has great plans for you!

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  3. This is total insanity.The people making these decisions have NO idea what they are asking. What would they have you do? Do they have a babysitting agency that will care for your other children? OF course not. Oh my blood is boiling for you.

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