It's been a busy day and I can't sleep. Scott's mom had come to surprise us for a visit a few weeks ago on Micah's 6th birthday, stayed through Gideon's first birthday and just traveled home today. It was good to see her and we really appreciated all the help she gave us around the house and with the kids, but are ready to get back to our own routines too.
However, last night I woke up several times thinking of a new question for the doctors. I just can't help but feel for E and what he will go through over the next few months - even if ultimately it's for his own good - it's hard to reason that with a four year old. Now tonight I'm laying awake again thinking of the same things.
Pray for all of us. It's sure to be a stressful time. And pray for Elijah that he will stop hurting. We've started the bowel cleanout regimen and it's working, but he is still in pain - albeit less often. He tends to revert to babytalk and behavior when he is hurting, and we have to draw a hard line to not allow this.
Wednesday, February 23, 2011
Monday, February 21, 2011
A plan...
Today, Elijah saw Dr. O. For now the catheter stays put. Next week on Wednesday, we'll run a few tests and xrays and then schedule for a super-pubic catheter to be placed. We are also meeting with the gastroenterologist to talk about a colostomy. Not fun. Not fun. Not fun.
Sunday, February 20, 2011
Yes, It's been a while...
A friend of mine reminded me how long it's been since I wrote anything here, simply by sharing her new blog. So I thought I'd pop back over and give everyone an update - it seemed like a good time to do so anyway.
So ...since September, not too much has happened. Elijah was able to remove the foley catheter and begin the road to daily self cath. He didn't get far before a nasty insurance hiccup brought everything to a screeching halt. So we made do. At four, he is still in diapers and we thought a good first step to independence would be to learn to change his own diaper, wet or icky. He learned this new trick in no time flat! I think it really helps him feel like a "big boy".
However, just this past week and half, he seemed to have problems again. First, he had a nasty bladder spasm, that caused quite a scene and sent Daddy up the play structure at Chuck E. Cheese to retrieve him. Then the next night, he said his belly hurt and he threw up a few times. Not sure if it was bladder related, but seems like it might have been. After a week of toughing it out, with long dry spells between wet diapers, some barely wet, we took him to the ER at the advice of the pediatrician.
There was blood and thick icky urine when they cathed him and an infection. So now he has the foley catheter back in and we are meeting with Dr. O again on Monday to continue the path toward either daily self cath or perhaps a super pubic catheter and a colostomy. This has been recommended in the past, but I've been reticent, holding out hope that he would figure it out and get better. But as time passes, that seems less likely and getting him used to something more permanent is the goal.
Please continue to pray for us as we make decisions for Elijah and for him as he learns to cope with so much change and pain.
So ...since September, not too much has happened. Elijah was able to remove the foley catheter and begin the road to daily self cath. He didn't get far before a nasty insurance hiccup brought everything to a screeching halt. So we made do. At four, he is still in diapers and we thought a good first step to independence would be to learn to change his own diaper, wet or icky. He learned this new trick in no time flat! I think it really helps him feel like a "big boy".
However, just this past week and half, he seemed to have problems again. First, he had a nasty bladder spasm, that caused quite a scene and sent Daddy up the play structure at Chuck E. Cheese to retrieve him. Then the next night, he said his belly hurt and he threw up a few times. Not sure if it was bladder related, but seems like it might have been. After a week of toughing it out, with long dry spells between wet diapers, some barely wet, we took him to the ER at the advice of the pediatrician.
There was blood and thick icky urine when they cathed him and an infection. So now he has the foley catheter back in and we are meeting with Dr. O again on Monday to continue the path toward either daily self cath or perhaps a super pubic catheter and a colostomy. This has been recommended in the past, but I've been reticent, holding out hope that he would figure it out and get better. But as time passes, that seems less likely and getting him used to something more permanent is the goal.
Please continue to pray for us as we make decisions for Elijah and for him as he learns to cope with so much change and pain.
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