So today was a trial. Alex had a lot of pain around his right kidney yesterday afternoon and this morning (no fever) so we took him to see the doc. We also had to mention his choking, arm pain, hand tremors and increased dizziness. All the doc really wanted to do was proceed with the internal shunt. So we did an ultrasound and all renal functions/organs look fine and were sent home. At home Alex had a very difficult time taking his pain meds and then gagged on his milk. He has lost another kilogram this week (down to 21.6) and it seemed to me that he was having to "tuck and turn" to breathe (something only previously needed to swallow.)
I became very frightened and called the doc. He wants to move up the surgery to this week. Then depending on outcome have a serious "hard discussion about gastric tubes and tracheotomy". So Steve and I spoke to Alex. He listened hard, asked good questions and then replied that he wanted the surgery now. Then when we reminded him that his dad would not be able to be there; he became more fearful. So we all decided to re-examine the circumstances tomorrow morning. Alex did well taking his evening meds and pain liquid, so hopefully he will sleep well and be alright in the morning.
Steve heads out on his biz trip tomorrow. I hate that he is flying on 9-11 but really don't have the strength to really put much energy into my worry. I just know I can't wait until he gets home and is in my arms again.
Tonight, I was talking to a dear friend and these words came out. "This thing is dark. It is evil. It takes energy, breath, hope. It feeds on our fears and worries. It grows for no other reason than to spite our dreams and beliefs. I hate it." (That is a paraphrase, but you get the gist.)
Okay, well tomorrow will hopefully start with both kids back at school and Steve arriving safely. Then all bets are off. Wish us luck!
God bless. Make this second count, the next is not a sure thing!
G
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4 comments:
Alex amazes me with his wisdom for such a little boy. I am hoping to see Alex at school tomorrow, and hoping that the upcoming procedures will provide Alex some relief and comfort. I know it is hard to put into words what this thing does, but you did a good job expressing yourself. I hate this thing, too.
~Annie
Bless you all - your attitude is amazing. Alex is just a doll and such a great kid. Best to Steve on his trip and safe travels. Call if you need any help in his absence.
Susan
Evan asked more than a week ago to pray morning, noon, and night for Alex and you all. I assured him that we were and would continue! Health, peace, comfort, strength. You are all in our prayers!!!!! Love, Paul & Dianne
Gwen, Thank you for writing and continuing to share with us at this tough time. I think you stated well the feelings we all have about this disease. It's hard to see beyond it's evil. I'm so glad Linda is here, and please remember others are still thinking of you all and willing to help. Know deep inside you that we're praying and sending strength and support to you all. You are great parents and Alex is an amazing kid~
Kathy
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