2020 10 19 Day 76
We are currently on day seventy something and haven't left the hospital for the final rehabilitation facility yet. We left our home, families, friends, business, work and chores behind seventy something days ago.
We miss being home and we truly miss our oldest son beyond words. I haven't written about my oldest son and how much I miss him, the hikes, the walk and talks, the fishing, the bbq on the deck, the frisbee tosses, the silly teasing that we throw at each other etc. Its been seventy something days of no old kid. He is a big boy keeping the grandparents and house in check. I respect his privacy and don't write about him here as much as I do in my daily journal. We are seventy something days in a hospital making the attempt to heal and strengthen his younger brother. Healing and strengthening his younger brother is a tough task, especially when everything else going on in the world around us keeps us from being together as a family or even seeing the family.
We are still at Boston Childrens. On a good note, we are daily increasing in strength and working toward a better Alex. On a good note Alex is stable. On a bad note he is not stable enough to go far, we have I.V. meds for another four or five weeks. We need to be close enough to this hospital as his infections are not yet cleared and fevers may arise at any time. We will need another mri in four weeks and maybe an eeg as soon as five or six weeks. We need to travel to and from but Alex is still imobile which makes travel so much more difficult.
Alex is currently stable enough to move to the rehabilitation facility by ambulance where they can focus on getting him to sit, stand, walk, talk. He may be ready but his health insurance and the local rehabilitation facility do not agree with each other. They currently toss red tape around at a critical time where a child has need for prime time rehabilitation. This kid has gone through a lot. A major brain surgery, a stroke during that occured during, a life saving second surgery, a life saving third surgery, a reconstruction surgery, a trial rehabilitation at a local rehabilitation facility and an emergency revisit to Boston Childrens to treat two infections. The infection treatment is a five or six week dose via I.V..
The teams here at Boston Childrens have worked feverishly toward stabilizing Alex, they are adjusting Alexs medications so that he can work with therapy teams during the day. The therapy teams here are awesome, but they tell us that we should move toward rehabilitation facilities that provide many more hours, more focus on rehabilitation recovery etc. We sit here now greatful to be stable, but upset that red tape and insurance companies hold a child in a place that he should be moving on from.
We want nothing more than to get our son better so that we can get home. It has been over seventy something days that we have been away from our normal and we haven't yet started a rehab that may take two months. Insurance company says it may take four to six weeks to come to an agreement between insurance and rehabilitation facility...how can this be???? These two have been in the process for two weeks already, how can this be a thing??? There are facilities, there are insurance companies, how can communication in 2020 require four to six weeks. In four to six weeks one can build a facility. I am not sure who else to get involved in this. If anyone has any ideas please comment below.
We have visited this Boston Hospital many many times over the past several years. We have come here for one hour doctor visits as well as two day three day or four day long visits to do eeg and video monitored testing. We have had times when we came up and stayed at a hotel for the one night before appointment because we had the early 8am or 9am appointment. We are a three hour drive with normal traffic and getting Alex up and out our door from a deep sleep is a very difficult task. To ease Alex's morning frustrations, we have come the night before an appointment. For longer stays, we have stayed at family housing where we have met other parents who told of thier long stays. As I heard the stories then, I felt so sorry for the child, the parents and the families. I could not imagine a week stay for us, yet we heard storys of people who moved to town to stay for several months. Never, never, ever did I foresee that Alex and our family would be in that similar situation.
I never guessed that a thin matress on a window sill or a hard surfaced plastic pull out couch would be my restful sleep space for months. I never knew how greatfull I would be for this here plastic pull out. A couple of weeks ago I was sitting on an ant infested half rotted wood wall, in the rain, wishing I could be by my kids side...so im lovin this here couch. Never did I know how important the simple, weak family room coffee, single pack cheerios, single wrapped graham crackers, raisin bread and single serving peanut butter pods would be. As a caregiving parent, things change. Almost everything changes. While I lay on his hospital bed by his side, he sleeps and I stare at the hospital room walls. I listen to youtube prayers while praying for a kid to focus, wake, talk, sit, stand, walk, laugh....I pray and I am reminded of how much we truly take for granted. We all take simple tasks like sitting, standing, laughing for granted. I wonder if Alex is in pain when he sits or stands. He can't speak so I don't know. We don't know.
We work with so many teams to try to figure this all out. It is a challenge, But we are making progress. This past weekend he sat on his own at the edge of the bed for several minutes. He was able to stand with assistance seven or eight times for three times a day. I am determined to get him to sit, stand, walk and use arms and legs. Mom is determined to get him to speak and focus on people, toys, books, etc.
We work with several teams, he is awake, as his parents we are learning about him as he wakes. Simple things take so long, simple things that we took for granted months ago are now so important and are the focus of our prayers today. How many mornings should I have thanked God for currently having the ability to sit and stand. I should have thanked God for having given us the ability to walk and talk. Kids jump and play right? Well... as I walk through these hospital halls, I can sense the frustration of children and parents of children who can not. How many prays of desperation have these walls seen and heard over the years?
No matter how much someone tries to plan things out, things always seem to go a slightly different direction. You can write a to do list daily, yet during your day something will go sideways and you will find that other things got done, but your list was not completed and sometimes not even touched.
Our to do list was try every medication and directive before surgery. We had surgery to correct something and things went sideways. Seventy something days later I sit bedside as he lays in bed. We have been away from our family and our normal for way to long.
After what we have been through and after the horrible, horrible, horrible words that doctors spoke in the extremely critical times...I am greatful that I am still here sitting bedside with him and that he is able to somewhat respond. Its been seventy something days, we are here, we are safe and surrounded by professionals, but we parents are tired and Alex appears ready to move along and get to rehabilitation.
Lord we pray for the right place and the right people at the right time...Lets get to moving forward however you see fit. Lord give me the strength to see this all through. Let me help without getting in the way. Let us give this kid back his legs arms and voice. Lord the end goal here is to get Alex back to him.
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