"Why can't they just say, 'go to this place, and here is the treasure; spend it wisely'?"The above quote is from the movie National Treasure and mirrors our exasperation in regards to many things in Charlotte's short life, from the night she was born onward. Why can't anything work properly without requiring calls to on-call medical staff and midnight drives?
We thought we were playing it safe after her initial GJ procedure by staying in Milwaukee overnight and checking out of our hotel at the last possible moment in order to ensure that all was well with the new tube. We talked to GI before we left and got the okay to occasionally vent her G-tube port to give her a little relief. Everything appeared to be in working order.
Our drive to Eau Claire to celebrate her first birthday was uneventful, save for the usual Wisconsin Dells insanity. However as early on as Friday night we began to have minor difficulty keeping her pump bag hooked up to her GJ tube. We would occasionally check her tube only to find her soaked and the pump disconnected under her onesie.
The issue got progressively worse over the weekend to the point that Katie would watch the tube disconnect as she was holding Charlotte while she was sleeping. We tried tape and twist-ties to no avail. The tube would just disconnect a few minutes later. Sunday morning I woke to find Charlotte and her bed soaking wet. She hadn't gotten fed all night.
It was at that point that Katie got on the phone to Interventional Radiology at CHW and we received the lone medical bright-spot of the weekend, the on-call nurse Sue. She listened to Katie describe what was happening and diagnosed a clogged tube. After three days! She had us try using soda water to flush the tube and that helped somewhat, but it wasn't long before the back pressure pushed the tubes apart again. Sue gave Katie the bad news that it was time to come back to Milwaukee. Katie said she sounded sincerely sorry, in our experience an unusual show of emotion from on-call medical staff. Sue did all the leg work to make sure the on-call doctor and another nurse would be there when we arrived.
We packed up with great haste and left my parents house in Eau Claire around 10:00. With a lone stop back in the Dells, we arrived back at CHW (cringe) at 2:45 and were greeted by Nurse Sue, Dr. Johnson and Nurse Chris. Dr. Johnson concurred about the clogged tube and Charlotte went back under the fluroscopic x-ray.
The first task was to confirm the current tube was clogged. Due to Charlotte's small stature, her current tube was the smallest they could go, 6fr. Typically the smaller the tube the more easily it can get clogged, a minor inconvenience for a family living in Brookfield. A nightmare for a family living in the UP. Dr. Johnson indicated that there was some blockage, but not necessarily enough to cause the issues we were having. Then we went over the various ways to tighten the connection of the GJ and the pump.
No solution presented itself, so it was decided that we go with a one-size larger J tube, 8fr. Apparently it is rare for an 8fr to clog, especially given that Charlotte is not on any sort of crushed medication.
This post is too long already, so the medical team did their thing, Charlotte got the new tube which seems to work (and has an adapter on the end that holds her pump connection great - where was that on the other one!), and we got on the road around 4:45p.m. arriving back in Houghton at 12:30a.m. She is back on her 23 hour/day feed and we're ready to be done traveling for awhile.
Through all this, the driving especially, Charlotte was amazing. She had very few fussy moments and bounced back after her second GJ procedure in four days pretty quickly.
But of course, that can't last long, and tonight Katie noticed that her gastronomy site is infected. Dr. Colleen at Portage Health (another call to an on-call physician! our raison d'etre) will see her tomorrow, but doesn't seemed too concerned.
Tomorrow we'll post some pictures from her birthday get-together. A much happier post guaranteed!
We thought we were playing it safe after her initial GJ procedure by staying in Milwaukee overnight and checking out of our hotel at the last possible moment in order to ensure that all was well with the new tube. We talked to GI before we left and got the okay to occasionally vent her G-tube port to give her a little relief. Everything appeared to be in working order.
Our drive to Eau Claire to celebrate her first birthday was uneventful, save for the usual Wisconsin Dells insanity. However as early on as Friday night we began to have minor difficulty keeping her pump bag hooked up to her GJ tube. We would occasionally check her tube only to find her soaked and the pump disconnected under her onesie.
The issue got progressively worse over the weekend to the point that Katie would watch the tube disconnect as she was holding Charlotte while she was sleeping. We tried tape and twist-ties to no avail. The tube would just disconnect a few minutes later. Sunday morning I woke to find Charlotte and her bed soaking wet. She hadn't gotten fed all night.
It was at that point that Katie got on the phone to Interventional Radiology at CHW and we received the lone medical bright-spot of the weekend, the on-call nurse Sue. She listened to Katie describe what was happening and diagnosed a clogged tube. After three days! She had us try using soda water to flush the tube and that helped somewhat, but it wasn't long before the back pressure pushed the tubes apart again. Sue gave Katie the bad news that it was time to come back to Milwaukee. Katie said she sounded sincerely sorry, in our experience an unusual show of emotion from on-call medical staff. Sue did all the leg work to make sure the on-call doctor and another nurse would be there when we arrived.
We packed up with great haste and left my parents house in Eau Claire around 10:00. With a lone stop back in the Dells, we arrived back at CHW (cringe) at 2:45 and were greeted by Nurse Sue, Dr. Johnson and Nurse Chris. Dr. Johnson concurred about the clogged tube and Charlotte went back under the fluroscopic x-ray.
The first task was to confirm the current tube was clogged. Due to Charlotte's small stature, her current tube was the smallest they could go, 6fr. Typically the smaller the tube the more easily it can get clogged, a minor inconvenience for a family living in Brookfield. A nightmare for a family living in the UP. Dr. Johnson indicated that there was some blockage, but not necessarily enough to cause the issues we were having. Then we went over the various ways to tighten the connection of the GJ and the pump.
No solution presented itself, so it was decided that we go with a one-size larger J tube, 8fr. Apparently it is rare for an 8fr to clog, especially given that Charlotte is not on any sort of crushed medication.
This post is too long already, so the medical team did their thing, Charlotte got the new tube which seems to work (and has an adapter on the end that holds her pump connection great - where was that on the other one!), and we got on the road around 4:45p.m. arriving back in Houghton at 12:30a.m. She is back on her 23 hour/day feed and we're ready to be done traveling for awhile.
Through all this, the driving especially, Charlotte was amazing. She had very few fussy moments and bounced back after her second GJ procedure in four days pretty quickly.
But of course, that can't last long, and tonight Katie noticed that her gastronomy site is infected. Dr. Colleen at Portage Health (another call to an on-call physician! our raison d'etre) will see her tomorrow, but doesn't seemed too concerned.
Tomorrow we'll post some pictures from her birthday get-together. A much happier post guaranteed!
2 comments on "August 2, 2010"
oh charlotte-love. I'm tearing up too just seeing her pic! She IS such a treasure, a miracle and I don't know why there's all this fuss but she's more than worth it. Please give her a good snuggly hug and smooch from me! I'll continue to pray. Love you all :) Cara
Koski couldn't have said it any better - Thinking of all three of you!
Love, Marissa
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