That Dang Pump Again!
Wouldn’t you know it – just when we think we’re “back on track”, the next day we find out the replacement pump only delivered 2 doses of 80 ml (vs. the 6 that it was programmed to deliver). We got that news late this afternoon and they have no idea why or how this happened. They actually had the gall to suggest it might have something to do with Chase’s backpack so he’s going to have to use that nerdy handbag for a while until we prove to them that it has nothing to do with their lousy, unreliable pumps. Now Carol will have one more thing to worry about - physically checking the output of the pump every few hours to see that it continues to deliver the programmed medication. We did receive a brand new pump today that was ordered from the factory, which I’ll be personally taking with me back to Houston tomorrow afternoon and using it as the primary pump (with the one that the clinic has had in circulation from other patients as the back-up). I’m not all that sure it’ll make a big difference, because I talked to another father of a pediatric patient who said he went through 20 pumps in 18 months, but that was apparently 2-3 years ago and he felt they had improved things considerably since then, with the help of all his input (like that made me feel a lot better). I’m starting to think we need to approach the medical OEM of the pump to find out who their contract manufacturer is (based upon the track record, I can guess a couple of the likely suspects) and perhaps see if EPIC can help them make a reliable one, but I’m not sure we have the time to fix their problems too.
I guess that means we’ll have to be vigilant about another thing – monitoring the pump / delivery system and having a spare programmed and ready to go at all times. At this point, we haven’t really lost much progress, since we’re still easing Chase’s system into the increased doses and tonight he’s on 90 ml x 6 (with 2 successfully given already); however, once we get him up to full speed (250 – 300 ml), we absolutely need to keep it there. Any set back at that point could mean several days to a week since we’ll need to ease him back up the dosage again. I guess the blessing here is that we’re learning our lessons while going up the volume curve so we’ll be ready to sustain the full dosage, once he gets there. By that point, I’ll probably be on a first name basis with the factory service technicians at this rate….
Meanwhile, on the home front, Barbara did it to me again. After having pre-negotiated and settled on the outfit of the day, gotten dressed and ready to head out the door, I look over and she’s welling up with tears in her eyes. So I ask what’s wrong (my first mistake –should’ve just head for the door) and, of course, she’s changed her mind and wants to wear something for warmer weather. I try to convince her that summer’s over in Michigan (we’re not in Texas anymore) – she reluctantly agrees but wants something underneath so she can take off the one that’s too warm when she gets hot from running around…I finally think we’re ready to go, then she starts about the pants (again, going to be too warm), “Whatever, just bring anything you want quickly and put it in your backpack so I don’t have to walk you into the class late again”… all the stuff I had no idea was going on at home while I would be heading to work or while I would be out of town… I sure hope Carol gets back up here before I lose my mind!
On a positive note, we had a great follow-up session with the nutritionist, reviewed Chase’s bloodwork again (looking good), discussed the strategy for supplements and ongoing testing to monitor the progress. We’re focused on anti-inflammation and immune system boosting to start with, while continuing to suppress sugars, simple carbs, etc. and stressing all the organic fruits and vegetables. We feel really confident that this is progressing in the right direction. We’re assessing how far to take this aspect of the strategy, which we now believe is at least as important as the ANP treatments. We’re even considering finding some help for at least a couple of weeks who will manage the process of selecting the meal plan (based upon our goals), obtaining the right ingredients, demonstrating how to prepare the meals, etc. We’re getting a lot of help with this legwork from our former neighbor, Cyndi Summers, who has a passion for this kind of health stuff and is doing a ton of research to supplement the advice we’re getting from the nutritionist. We’re definitely on the right track there….
That’s it for now. Chase was a strong trooper again today – ate well, went bike riding and played baseball with Carol. Barbara and I are looking forward to meeting up with them tomorrow evening. I’m hoping she sticks to the outfit we picked out tonight (or at least is expedient in changing her mind). If we can finally get the new pump programmed and administering the right dosages, Chase should be up to 130 ml x 6 by Monday, which is more than halfway over the minimum target. As soon as we get him up to the target range, we’ll bring him home and try to get back to “normal”. With all your prayerful support, we’re confident his system will accept this elevated treatment and continue to get stronger as we go, on our way to the record speed complete remission!
With lots of love and gratitude,
John & Carol
Chase & Barbara Ann
I guess that means we’ll have to be vigilant about another thing – monitoring the pump / delivery system and having a spare programmed and ready to go at all times. At this point, we haven’t really lost much progress, since we’re still easing Chase’s system into the increased doses and tonight he’s on 90 ml x 6 (with 2 successfully given already); however, once we get him up to full speed (250 – 300 ml), we absolutely need to keep it there. Any set back at that point could mean several days to a week since we’ll need to ease him back up the dosage again. I guess the blessing here is that we’re learning our lessons while going up the volume curve so we’ll be ready to sustain the full dosage, once he gets there. By that point, I’ll probably be on a first name basis with the factory service technicians at this rate….
Meanwhile, on the home front, Barbara did it to me again. After having pre-negotiated and settled on the outfit of the day, gotten dressed and ready to head out the door, I look over and she’s welling up with tears in her eyes. So I ask what’s wrong (my first mistake –should’ve just head for the door) and, of course, she’s changed her mind and wants to wear something for warmer weather. I try to convince her that summer’s over in Michigan (we’re not in Texas anymore) – she reluctantly agrees but wants something underneath so she can take off the one that’s too warm when she gets hot from running around…I finally think we’re ready to go, then she starts about the pants (again, going to be too warm), “Whatever, just bring anything you want quickly and put it in your backpack so I don’t have to walk you into the class late again”… all the stuff I had no idea was going on at home while I would be heading to work or while I would be out of town… I sure hope Carol gets back up here before I lose my mind!
On a positive note, we had a great follow-up session with the nutritionist, reviewed Chase’s bloodwork again (looking good), discussed the strategy for supplements and ongoing testing to monitor the progress. We’re focused on anti-inflammation and immune system boosting to start with, while continuing to suppress sugars, simple carbs, etc. and stressing all the organic fruits and vegetables. We feel really confident that this is progressing in the right direction. We’re assessing how far to take this aspect of the strategy, which we now believe is at least as important as the ANP treatments. We’re even considering finding some help for at least a couple of weeks who will manage the process of selecting the meal plan (based upon our goals), obtaining the right ingredients, demonstrating how to prepare the meals, etc. We’re getting a lot of help with this legwork from our former neighbor, Cyndi Summers, who has a passion for this kind of health stuff and is doing a ton of research to supplement the advice we’re getting from the nutritionist. We’re definitely on the right track there….
That’s it for now. Chase was a strong trooper again today – ate well, went bike riding and played baseball with Carol. Barbara and I are looking forward to meeting up with them tomorrow evening. I’m hoping she sticks to the outfit we picked out tonight (or at least is expedient in changing her mind). If we can finally get the new pump programmed and administering the right dosages, Chase should be up to 130 ml x 6 by Monday, which is more than halfway over the minimum target. As soon as we get him up to the target range, we’ll bring him home and try to get back to “normal”. With all your prayerful support, we’re confident his system will accept this elevated treatment and continue to get stronger as we go, on our way to the record speed complete remission!
With lots of love and gratitude,
John & Carol
Chase & Barbara Ann
posted by John & Carol Sammut at 9:21 PM
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