The surgery yesterday went well....Hunter was pretty fired up afterward! Once they tried the line it didn't work....nothing can be done the easy way for our little guy. The radiologist was paged and came back in last night to put in a new needle....it flushed fine but after he left it was not working again! The nurse tried a few tricks and it would work if she pushed the port to one side so we thought the it seemed obvious that the needle was not in the correct place. They tried putting TPA in the line but of course that didn't help. Hunter was exhausted and it took us a long time to get him settled. Poor little man had dark circles and bags under his eyes, he looked terrible. He finally went out for the night around 2300hrs and slept all night.
This morning the vein specialist came in (she has gotten to know Hunter quit well over the past year), she reinserted the needle and said it was out of place. It flushed well and they tried it out for an hour before letting us take Hunter home. I think Hunter was asleep before we left the hospital parking lot and we transferred him to his bed when we got home. We need to give him a saline bolus when he wakes up since he was shorted some fluid yesterday and likely each day since he's been there.
We were so excited to get a port for Hunter but it hasn't started out very well that's for sure...hopefully we will see the good in having it once we get over the learning phase.
Thanks to Janet for taking the time to get the IV in Hunter originally and for fixing his port this morning!! We really appreciate it......
Thursday, June 17, 2010
Tuesday, June 15, 2010
Good News
Hunter is booked for surgery tomorrow at 1430hrs....hopefully all goes well and we can have hime home sometime on Thursday.
Monday, June 14, 2010
Line Break #4
It seems the only time I have to update Hunter's blog is when he is in the hospital! But first I need to update the last couple of months or so to catch you up to speed.
We have been dealing with a kidney issue which I think I posted about before...its been so long I really can't remember. Anyways, we have been going to appointments almost weekly and bringing urine samples which is always fun attempting to get. I have to say we are becoming quite good at it...it does help that we document all of Hunter's input and output and urine/stool so we pretty much know when he will go each day...the concern for the kidneys is the amount of calcification that has occurred which has damaged Hunter's kidneys. We were told his "urine is precipitating calcium". What does that mean?!! Exactly...I really don't understand it all but basically urine is supposed to grab hold of the calcium and be expelled. Hunter's urine is not grabbing hold and taking the calcium out of his body so his kidney's are working over time and can't keep up. At this point we don't know if the kidney's will repair themselves or not. We started Hunter on a new oral medication which we weren't sure would work since taking things orally doesn't always absorb properly into his system. Well it seems to be working.....thankfully and we will continue with our regular appointments and go again in about 6 months for another ultrasound to see if there is any visible change.
Which brings us up to speed for today....we went to his regular appointment and his TPN ran fine all morning. When we took him off at the appointment the nurse had difficulty getting blood withdrawal from the line. It eventually came but not like it should, then she couldn't flush the line, it was completely blocked. I suggested changing the cap hoping it was simply an issue with it....its wasn't....they wanted to use TPA in the line (the liquid draino type stuff) which they had put in a couple of weeks ago to clear a blockage...nothing was going in the line and it eventually popped. So we were admitted on the spot and his doctor came in and told us he recommended we put in a new line...the long awaited port-a-cath! Like I've said before...you don't want to put your child into surgery but I think it will really improve Hunter's life and shorten the hospital stays since we've been in the hospital due to a line break 4 times since Easter.... The port is under his skin so when we disconnect him he can swim and bath without worrying about getting the site wet.
We have also been in "fights" with our insurance company and one of the companies we get Hunter's supplies from....I don't understand how you can require the same supplies every week for months at a time and the company be so inconsistant in sending the proper supplies...I call them pretty much weekly to get it straightened out...its brutal! And to top it all off our own insurance company has not paid for anything required for Hunter since he's been home....they are useless....
We have started getting these "coily" lines similar to a telephone cord which we attach to Hunter's current line...this give him an extra 4-5 feet of freedom from being glued to our side when he is hooked up to his TPN...its been a god send......
Hunter is growing so much and walking everywhere...sometimes making attempts at runs but that doesn't always work out well!! hhaahah......Hunter was 21lbs 7oz today.....
We have been dealing with a kidney issue which I think I posted about before...its been so long I really can't remember. Anyways, we have been going to appointments almost weekly and bringing urine samples which is always fun attempting to get. I have to say we are becoming quite good at it...it does help that we document all of Hunter's input and output and urine/stool so we pretty much know when he will go each day...the concern for the kidneys is the amount of calcification that has occurred which has damaged Hunter's kidneys. We were told his "urine is precipitating calcium". What does that mean?!! Exactly...I really don't understand it all but basically urine is supposed to grab hold of the calcium and be expelled. Hunter's urine is not grabbing hold and taking the calcium out of his body so his kidney's are working over time and can't keep up. At this point we don't know if the kidney's will repair themselves or not. We started Hunter on a new oral medication which we weren't sure would work since taking things orally doesn't always absorb properly into his system. Well it seems to be working.....thankfully and we will continue with our regular appointments and go again in about 6 months for another ultrasound to see if there is any visible change.
Which brings us up to speed for today....we went to his regular appointment and his TPN ran fine all morning. When we took him off at the appointment the nurse had difficulty getting blood withdrawal from the line. It eventually came but not like it should, then she couldn't flush the line, it was completely blocked. I suggested changing the cap hoping it was simply an issue with it....its wasn't....they wanted to use TPA in the line (the liquid draino type stuff) which they had put in a couple of weeks ago to clear a blockage...nothing was going in the line and it eventually popped. So we were admitted on the spot and his doctor came in and told us he recommended we put in a new line...the long awaited port-a-cath! Like I've said before...you don't want to put your child into surgery but I think it will really improve Hunter's life and shorten the hospital stays since we've been in the hospital due to a line break 4 times since Easter.... The port is under his skin so when we disconnect him he can swim and bath without worrying about getting the site wet.
We have also been in "fights" with our insurance company and one of the companies we get Hunter's supplies from....I don't understand how you can require the same supplies every week for months at a time and the company be so inconsistant in sending the proper supplies...I call them pretty much weekly to get it straightened out...its brutal! And to top it all off our own insurance company has not paid for anything required for Hunter since he's been home....they are useless....
We have started getting these "coily" lines similar to a telephone cord which we attach to Hunter's current line...this give him an extra 4-5 feet of freedom from being glued to our side when he is hooked up to his TPN...its been a god send......
Hunter is growing so much and walking everywhere...sometimes making attempts at runs but that doesn't always work out well!! hhaahah......Hunter was 21lbs 7oz today.....
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