June 16, 2008
"When we arrived at the hospital this morning, the nurse said she
had some interesting news. Kole figured out that if he scootched
himself forward, he could reach back and grab his tubes, and
I'll-be-darned if he didn't yank out his own feeding tube. I had to
laugh, but slightly concerned because they had it running straight
into his intestines....I thought, this can't be good. But he's
fine, and actually he has starting drinking Pedialyte from a sippy
cup this morning. One sip at a time. He may be able to try to eat
some soft foods today also. They removed his arterial line today,
but still haven't been able to hold him. Also they took out his
catheter so we are back to diapers. They are leaving the chest tube
in because his lung is still draining. They are at this moment,
giving Kole a breathing treatment, an xray, and another
echocardiogram. It looks like a parade going out the PICU door. But
they want to do these tests before he is moved, he is moving out of
PICU and down to hemonc in the next hour or two. Finally we will
have our own room. I will let everyone know exactly where we end up
as soon as I know for sure. Thank you for all your prayers, things
are slowly looking up and we appreciate all the love we have been
shown. Kole thanks you all, and we look forward to seeing our
Monday visitors.
Breathing treatments are going well, xray came out great. Won't get the results of echo until tomorrow, but they honestly don't expect much change this soon. They said because this is a muscular tumor, that it won't reduce in just days, but soon enough there will be some lung and heart relief. We are finally out of the PICU!! Great news. This means they aren't concerned enough about his vitals to keep him in constant check. We are now in hemonc. It is more private and we have our own fridge and bathroom. Kole is doing quite well considering all the chemo they've pumped into him over the last two days. He can't sit up or quite hold himself properly, very weak. His voice is starting to come back, though. He is talking, but not much. He sounds very quiet and squeaky. He did drink almost an entire sippy cup of Pedialyte/apple juice mix. And he also had some yummy homemade applesauce, but he did spit some up. They said this is normal, as he will probably feel pretty nauseous for a few days. But we are happy he actually ate. He is watching Care Bears right now in his new bed with his daddy, and seems quite comfortable. Today seemed to be a lot more difficult for me for some reason, its almost like the tables have turned and all this week I have been really strong while Kole wasn't doing well at all, and now that he is progressing, I have seemed to emotionally regress. I think the past week has caught up to me, including the sorrow I felt yesterday as I spent my first Father's day without my dad.
Breathing treatments are going well, xray came out great. Won't get the results of echo until tomorrow, but they honestly don't expect much change this soon. They said because this is a muscular tumor, that it won't reduce in just days, but soon enough there will be some lung and heart relief. We are finally out of the PICU!! Great news. This means they aren't concerned enough about his vitals to keep him in constant check. We are now in hemonc. It is more private and we have our own fridge and bathroom. Kole is doing quite well considering all the chemo they've pumped into him over the last two days. He can't sit up or quite hold himself properly, very weak. His voice is starting to come back, though. He is talking, but not much. He sounds very quiet and squeaky. He did drink almost an entire sippy cup of Pedialyte/apple juice mix. And he also had some yummy homemade applesauce, but he did spit some up. They said this is normal, as he will probably feel pretty nauseous for a few days. But we are happy he actually ate. He is watching Care Bears right now in his new bed with his daddy, and seems quite comfortable. Today seemed to be a lot more difficult for me for some reason, its almost like the tables have turned and all this week I have been really strong while Kole wasn't doing well at all, and now that he is progressing, I have seemed to emotionally regress. I think the past week has caught up to me, including the sorrow I felt yesterday as I spent my first Father's day without my dad.
Thank you all for
being there for me, especially today's visitors who, without
realizing it,
picked me up when I would have fallen. I love you
all."
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