Not Just Yet...

Well, today we were told that our hopes of having Cash home this week would not happen after all. This was really tough on Kimberley, as her hopes were as high as ever to finally get her little boy home. We both realize that whatever is best for Cash is what needs to happen, but this roller coaster ride must come to an end, and soon.

We have tried so hard to remain at peace, be accepting and allow for all of this to be absorbed one day at a time. Days like today make it tough. Sometimes we feel the doctors can be cold in their delivery, even short. Other times we wonder which doctor is doing the right thing. Why have the three previous doctors not mentioned anything this doctor is saying? Why would one attending physician give us a 10 day window to come home, and the next doctor only three days later say we would be lucky to leave in 30 days? I think anyone who has gone through a medical situation of this magnitude can identify with us, when we ask these questions. It is nothing short of heart breaking.

My encouragement and attempts to calm Kim are wearing thin. I know she tries, and with my help, takes a deep breath, but I know the number of times for this left to happen are numbered.  We need him home so badly, especially Kimberley.

Cash is a miracle. He has beaten the odds so far. I believe his road, no matter how long will be a beautiful one. With prayer, his family, friends and lots of hard work, Cash will be all that he is supposed to be. Today just felt like that road won't begin as soon as we had hoped.

So here is what happened. We understood that there was a test he needed to take to determine his O2 needs. They are not sure if he will need oxygen to come home and this was to determine that. Otherwise, we needed him to reach 8 full bottle feeds a day, then he could come home. He had been taking five feeds a day for a few days, and had started his sixth. We figured in a week he would be at 8. Also the training we needed and a car seat test. We have completed the training.

Today, Kim gets a call at work letting her know that the following tests needed to be done prior to him going home to diagnose as much of his deficiencies as possible. By the way, this doctor is new for this month, and in 5 days of us waiting to meet her, she has not come around when we were there. So this unknown doctor who has only known Cash for 5 days tells her the following...

*Vision test. Determine whether his eyes, which are "good", are being "read" by his brain.
*Hearing test. Same as above. The ears are good, but is his brain reading the signals.
*Kidney test. Due to the diauretics, has there been damage, specifically calcium build up.
*Change diauretic to weaker option, and determine if it is adequate for him.
OSRG-are something, not exactly sure; this is the respiratory test mentioned earlier to determine o2 need.
*Blood gas test. Get a recent reading of his CO2 levels.
*Ultrasound on brain, due every 30 days.
*PMR doctor visit and diagnosis. This is basically a PT Medicine angle, including medical device needs. Splints were mentioned.
*Aspiration testing. Need to determine if it happening and to what degree.

So this is all dropped on Kimberley in a 30 minute call from a strange new doctor. Needless to say this wasn't taken well. It broke her.

I called the doctor after Kim arrived home, as she couldn't stay at work and be productive. My conversation went pretty well. I got the answers I needed, although not real happy about the timing let down. I am meeting the doc tomorrow morning. All the tests are on the "checklist" to go home, but they will be providing details to Cash's situation. This scares us. It is necessary to understand these things and prepare for them being as informed as possible, but certainly doesnt make this week any easier.

As a husband, the last thing you want to see is your wife crying and there be nothing you can do to "fix" it. Helplessness is an understatement. So you do what you can, say what you must to calm her down and pray your hug will ease her pain. Meanwhile you want to cry, but you can't. The last thing you can be is another weight added to her already heavy shoulders. Your tears would just cause the situation to spiral. We've had enough of those days and nights.

So I'm left writing this at 11pm, by myself. Its okay I guess; after all, it works. Cathartic is the word.
Blabbing about our drama helps me to cope.

Please keep the prayers coming. This could be a very hard week for us. Although, it could be a relief!
Fingers crossed, knees bent since 11/3/11.