Just in time
This past weekend has been so hard! I've have worked so hard to be busy and not think about the pending tests on Spencer, the upcoming hospital stay for Shelbie and possible surgery for Spencer. I have tried to remain aloof, just for the sake of sanity.
Monday, I didn't think I would survive the day. Between worry and fatigue it was all I could do to stay present and do the needful things. Today...I fell apart.
I usually try to fall apart at night when the kids are in bed so they don't have to witness the fallout but one thing after another this morning just did me in. By 11:00 I was struggling to pull myself together for a design consultation I had in just under an hour.
Out of the blue, the phone rang. It was none other than the nurse of our Neurologist in Seattle. She had been thinking of us and wanted to call and check in on the kids. One understanding, listening ear was all it took for the floodgates of despair to throw themselves wide open. Every bit of this mother's worry and fear spilled out through the phone.
Gently, she said, "This is really scary but we are going to take care of your kids. You don't have to figure it all out alone."
Oh my gosh, there are no words to describe the relief I felt. She wanted to relay the information to the doctor then call me back with a plan which is what she did. Even though there are no easy answers, there is a plan. A plan I think we can live with but it won't be without a struggle.
The doctor wants to see the kids 'ASAP' as in, this week but we really need to get Shelbie's transfusion done before I dare travel with her. We are still awaiting the results of Spencer's parathyroid test. Our Doctor has to be at a conference next week and so does our Oncologist so we will most like leave a week from Sunday but that will depend on if Spencer needs surgery to remove the parathyroid.
Once we get to Seattle, the kids will all be having their bone marrow biopsies and a muscle biopsy. The Neurologist and Oncologist will tag team so it can be done at once. If Spencer needs the third surgery to remove his parathyroid, I am going to see if we can do that at the same time. The nurse said that they will often save a piece of the organ and plant it in the upper arm so they are still getting some benefit of the hormone. I have never heard of that before but sounds interesting. If they decide they want Spencer to have his thyroid out before we go to Seattle, then the team of Anesthesiologists in Seattle will conference with the anesthetist here to make sure Spencer is getting the best and safest kind of medication to put him under. In his current condition, the doctor is pretty anxious about the sedation used.
While there, Shelbie will have the tilt table test and other tests to see what can be done about her low blood pressure, falling and increased fatigue.
In the meantime, the nurse told me we need to focus on clean eating and nutrition to avoid the possibility of feeding tubes. Since the kids feel sick at every meal, they eat in between but just grab 'junk' and readily accessible food since I refuse to make 6 meals a day. After school, we made a list of healthy snacks they can grab and we have banned the other crap they eat. Tonight, I will go and stock up on those things that will help to support them and hopefully, the doctor will not feel like he needs to start feeding tubes.
It's overwhelming to think about all this but I feel like a call from the blue was directed by God and just what I needed to help me get the kids back on track! I am feeling relieved and blessed to have some help cause I just can't do this anymore. It's been so isolating and lonely lately and while I don't want to drive to Seattle and deal with all the expense and missed school I know beyond a doubt this is what we need to do. So, it's buckle up time and prepare for a wild ride!
Monday, I didn't think I would survive the day. Between worry and fatigue it was all I could do to stay present and do the needful things. Today...I fell apart.
I usually try to fall apart at night when the kids are in bed so they don't have to witness the fallout but one thing after another this morning just did me in. By 11:00 I was struggling to pull myself together for a design consultation I had in just under an hour.
Out of the blue, the phone rang. It was none other than the nurse of our Neurologist in Seattle. She had been thinking of us and wanted to call and check in on the kids. One understanding, listening ear was all it took for the floodgates of despair to throw themselves wide open. Every bit of this mother's worry and fear spilled out through the phone.
Gently, she said, "This is really scary but we are going to take care of your kids. You don't have to figure it all out alone."
Oh my gosh, there are no words to describe the relief I felt. She wanted to relay the information to the doctor then call me back with a plan which is what she did. Even though there are no easy answers, there is a plan. A plan I think we can live with but it won't be without a struggle.
The doctor wants to see the kids 'ASAP' as in, this week but we really need to get Shelbie's transfusion done before I dare travel with her. We are still awaiting the results of Spencer's parathyroid test. Our Doctor has to be at a conference next week and so does our Oncologist so we will most like leave a week from Sunday but that will depend on if Spencer needs surgery to remove the parathyroid.
Once we get to Seattle, the kids will all be having their bone marrow biopsies and a muscle biopsy. The Neurologist and Oncologist will tag team so it can be done at once. If Spencer needs the third surgery to remove his parathyroid, I am going to see if we can do that at the same time. The nurse said that they will often save a piece of the organ and plant it in the upper arm so they are still getting some benefit of the hormone. I have never heard of that before but sounds interesting. If they decide they want Spencer to have his thyroid out before we go to Seattle, then the team of Anesthesiologists in Seattle will conference with the anesthetist here to make sure Spencer is getting the best and safest kind of medication to put him under. In his current condition, the doctor is pretty anxious about the sedation used.
While there, Shelbie will have the tilt table test and other tests to see what can be done about her low blood pressure, falling and increased fatigue.
In the meantime, the nurse told me we need to focus on clean eating and nutrition to avoid the possibility of feeding tubes. Since the kids feel sick at every meal, they eat in between but just grab 'junk' and readily accessible food since I refuse to make 6 meals a day. After school, we made a list of healthy snacks they can grab and we have banned the other crap they eat. Tonight, I will go and stock up on those things that will help to support them and hopefully, the doctor will not feel like he needs to start feeding tubes.
It's overwhelming to think about all this but I feel like a call from the blue was directed by God and just what I needed to help me get the kids back on track! I am feeling relieved and blessed to have some help cause I just can't do this anymore. It's been so isolating and lonely lately and while I don't want to drive to Seattle and deal with all the expense and missed school I know beyond a doubt this is what we need to do. So, it's buckle up time and prepare for a wild ride!
"God does notice us, and He watches over us. But it is usually through another person that he meets our needs." Spencer W. Kimball
ReplyDeleteYour post reminded me of this quote. I hope you can find the answers and treatments you need.
Thinking of you...