Today
Today went very well. We got there at 10:30. They did his weight, which is 68lbs. To me that is crazy big. He is very slim, but he has substance now. I remember him on treatment trying to maintain 40 and slipping down to 34. So to me pounds on him are such a blessing. They measured him, did his blood pressure, O2 sat, accessed his port and took blood.
After that we waited for about 3.5 hours to see the doc. I forgot about hospital time! (O: It has it's own clock. That is also something you get used to. When the hospital is your life, 3 hours doesn't seem that long. But when you are living a regular life, 3.5 hours is crazy long. Sounds like an odd explanation, but it's totally true for me!
We spent some time in Art Therapy. When they closed, we looked at the AMAZING fish tank that has clown fish and anemonies. I don't know how to say that last word, let alone spell it. Just think of where Nemo lived!! Haha.
When we saw the doc she was beaming at how well Micah looks. We discussed his rough MRI. We have decided to go that route next time again. It is much healthier than a CT. I will prepare him better, bring Odyseys to listen to and we are going to be proactive and give him a little Ativan an hour before. That little pill is a delight! It helped Micah through a lot of anxiety when he first started treatment.
She also talked about getting his port out. We are going to talk about it again after Micah's next scan. She is comfortable taking it out if his next one is clear. If we are comfy with it, we will go ahead. That is a HUGE step.
It brings tears to my eyes thinking of it for 2 reasons. One of them is that I worry that we will need to put it back in. Secondly, I remember when he relapsed I had to push for a port. They wanted to put a picc line in (it hangs out of his body). It is more of a temporary thing, meaning, they didn't think he would need it long and it wasn't because they were going to fix him really fast. But if he had that, he wouldn't have been able to take baths or hot tubs which are so important when he is sick. But here we are over 2 years later, hopefully going to take it out. I often wondered after we put it in, if we would ever have a chance to take it out. I thought it may have stayed in him until his last day.
I mentioned to the Doc today that it is crazy amazing that it has been 22 months since his surgery. She said that he is a very special boy and couldn't agree with me more. I like to hear that from her. I don't know why it means a lot coming from Doc Z. I haven't figured that out yet. (O:
Praise God. Praise God. What a wonderful thing He has given to us. I really have no words to explain how it feels to be blessed with the gift of Micah's life. AMAZING really.
After that we waited for about 3.5 hours to see the doc. I forgot about hospital time! (O: It has it's own clock. That is also something you get used to. When the hospital is your life, 3 hours doesn't seem that long. But when you are living a regular life, 3.5 hours is crazy long. Sounds like an odd explanation, but it's totally true for me!
We spent some time in Art Therapy. When they closed, we looked at the AMAZING fish tank that has clown fish and anemonies. I don't know how to say that last word, let alone spell it. Just think of where Nemo lived!! Haha.
When we saw the doc she was beaming at how well Micah looks. We discussed his rough MRI. We have decided to go that route next time again. It is much healthier than a CT. I will prepare him better, bring Odyseys to listen to and we are going to be proactive and give him a little Ativan an hour before. That little pill is a delight! It helped Micah through a lot of anxiety when he first started treatment.
She also talked about getting his port out. We are going to talk about it again after Micah's next scan. She is comfortable taking it out if his next one is clear. If we are comfy with it, we will go ahead. That is a HUGE step.
It brings tears to my eyes thinking of it for 2 reasons. One of them is that I worry that we will need to put it back in. Secondly, I remember when he relapsed I had to push for a port. They wanted to put a picc line in (it hangs out of his body). It is more of a temporary thing, meaning, they didn't think he would need it long and it wasn't because they were going to fix him really fast. But if he had that, he wouldn't have been able to take baths or hot tubs which are so important when he is sick. But here we are over 2 years later, hopefully going to take it out. I often wondered after we put it in, if we would ever have a chance to take it out. I thought it may have stayed in him until his last day.
I mentioned to the Doc today that it is crazy amazing that it has been 22 months since his surgery. She said that he is a very special boy and couldn't agree with me more. I like to hear that from her. I don't know why it means a lot coming from Doc Z. I haven't figured that out yet. (O:
Praise God. Praise God. What a wonderful thing He has given to us. I really have no words to explain how it feels to be blessed with the gift of Micah's life. AMAZING really.
Very thankful for you and with you!
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