Day +11
WBC 0.3
After the power outage last night (it only lasted about 2 hours) Max settled in and slept until about 4am. Then he woke up ready to rock and roll. His energy and happiness was a welcome site for the night nurse and respiratory therapist. Little did we know that they maybe really needed a smile.
It turns out that a little girl passed away on the unit last night at around 2am. We didn’t know her or her family. She had a form of leukemia called ALL. She fought very long and very hard. You can read about her fight and about the anguish facing the parents of these kids at:
http://www.caringbridge.org/mn/priyanka
Margaret asked the aide tonight if someone died last night and her eyes welled up and she said it had been a very bad night. They are not supposed to show emotion around the other families. It is a reminder that every day in the hospital and every day for the next few years Max is at risk for graft vs. host disease and for a risk of infection. We have tried to make our updates positive and to spread our daily enjoyment of Max with all of you, but please know that while the chemo is over, and the transplant is over, the process is definitely just beginning. And now, and for the next 100 days, we are very very scared.
That said, here's the story of how Max's central line popped a hole:
As avid readers of this site know by now, Max's Hickman catheter is a tube that connects his jugular in his neck with the outside world. It comes out in one bifurcated tube that splits off to two tubes for medicines and for blood draws. Because it is connected directly into his bloodstream it is a dangerous source for infection and is something that on a daily and nightly basis the nurses, aides, and Mom and Dad obsess about. We are constantly following Max and untangling his feet from all of his tubes (sometimes there are as many as 4 meds going in at a time at different points along the tubes). We are constantly making sure his dressing over the line is clean and fresh and that he never never pulls on it.
Even with constant vigilance, his tube has been problematic. The biggest problem is at the point where one tube splits off into two (imagine an upside-down Y) it is always twisting over himself. This sets off alarms and prevents his meds from getting in. Max is so active that he gets extra tape and bandages to hold it all down and it still twists.
So this morning at around 8 his nurse was infusing a flush and POP! his tube tore open and a mixture of saline and blood spilled out. They quickly clamped and called for help. Then they detached everything and Max was for the first time in about 3 weeks unattached to any machine. Other than his clamp hanging off his tube (it looks like a pair of scissors) he looked great. He was happy and smiley and having a ball. His nurse felt really bad about what happened but truth is, it had to be weak from so much twisting. It was fun to expand his little world about 4 feet wider in circumference by being able to carry him around.
So one of two things would have to happen: Repair or Replace. We wanted repair because replace would mean intubation with all of the anesthesia risks for Hurler kids and Max's special spinal cord concerns. And we also would have to worry about the risk of infection and his ability to heal because he has very little white blood cells at this point. So we all were hoping for repair. So they first sent up a woman with a small tube of glue. This she rubbed over the hole about seven times and then we waited 15 minutes. I would call this “The teenage bike tire repair kit” technique. It was a failure. It was still leaky. Now dear old Dad was getting a little scared about how long this might go because Max is on so many medicines and some of them are constant drips.
Next they sent up a surgeon and he came with all of the sterilized towels that they drape over patients on all those TLC shows. Plan B involved cutting away the broken tube, sliding a double metal connector into the bifurcated tube and gluing a sleeve over the outside. The final step would be the creation of a crude splint from a tongue depresser. I call this the "Even MacGuyver's not that crazy" technique. It seemed simple, but the glue dries VERY slowly and it was important for Max to stay still. So we popped in another Baby Einstein movie (or as we call it, "video morphine"). The surgeon tried 3 times and by the third time his brow had soaked through his little surgeon's cap and actual sweat drips were coming down. The guy remained cool even though we all could see that it wasn't working. He stopped and went out to get another kit. We called in one of the head nurses for another set of hands and on the fourth try they got it but they had to open up the flow in one of the sides of the tube with Heparin. Then we had to put all meds on hold for 4 hours for the glue to set (which it did) and after 48 hours it should be just about as good as new.
So it was intense and our little Max didn't have to get a new tube. It only took a few weeks to pop his first one, let's hope he doesn’t need another.
Thanks for reading this far and for your continued support,
mike
After the power outage last night (it only lasted about 2 hours) Max settled in and slept until about 4am. Then he woke up ready to rock and roll. His energy and happiness was a welcome site for the night nurse and respiratory therapist. Little did we know that they maybe really needed a smile.
It turns out that a little girl passed away on the unit last night at around 2am. We didn’t know her or her family. She had a form of leukemia called ALL. She fought very long and very hard. You can read about her fight and about the anguish facing the parents of these kids at:
http://www.caringbridge.org/mn/priyanka
Margaret asked the aide tonight if someone died last night and her eyes welled up and she said it had been a very bad night. They are not supposed to show emotion around the other families. It is a reminder that every day in the hospital and every day for the next few years Max is at risk for graft vs. host disease and for a risk of infection. We have tried to make our updates positive and to spread our daily enjoyment of Max with all of you, but please know that while the chemo is over, and the transplant is over, the process is definitely just beginning. And now, and for the next 100 days, we are very very scared.
That said, here's the story of how Max's central line popped a hole:
As avid readers of this site know by now, Max's Hickman catheter is a tube that connects his jugular in his neck with the outside world. It comes out in one bifurcated tube that splits off to two tubes for medicines and for blood draws. Because it is connected directly into his bloodstream it is a dangerous source for infection and is something that on a daily and nightly basis the nurses, aides, and Mom and Dad obsess about. We are constantly following Max and untangling his feet from all of his tubes (sometimes there are as many as 4 meds going in at a time at different points along the tubes). We are constantly making sure his dressing over the line is clean and fresh and that he never never pulls on it.
Even with constant vigilance, his tube has been problematic. The biggest problem is at the point where one tube splits off into two (imagine an upside-down Y) it is always twisting over himself. This sets off alarms and prevents his meds from getting in. Max is so active that he gets extra tape and bandages to hold it all down and it still twists.
So this morning at around 8 his nurse was infusing a flush and POP! his tube tore open and a mixture of saline and blood spilled out. They quickly clamped and called for help. Then they detached everything and Max was for the first time in about 3 weeks unattached to any machine. Other than his clamp hanging off his tube (it looks like a pair of scissors) he looked great. He was happy and smiley and having a ball. His nurse felt really bad about what happened but truth is, it had to be weak from so much twisting. It was fun to expand his little world about 4 feet wider in circumference by being able to carry him around.
So one of two things would have to happen: Repair or Replace. We wanted repair because replace would mean intubation with all of the anesthesia risks for Hurler kids and Max's special spinal cord concerns. And we also would have to worry about the risk of infection and his ability to heal because he has very little white blood cells at this point. So we all were hoping for repair. So they first sent up a woman with a small tube of glue. This she rubbed over the hole about seven times and then we waited 15 minutes. I would call this “The teenage bike tire repair kit” technique. It was a failure. It was still leaky. Now dear old Dad was getting a little scared about how long this might go because Max is on so many medicines and some of them are constant drips.
Next they sent up a surgeon and he came with all of the sterilized towels that they drape over patients on all those TLC shows. Plan B involved cutting away the broken tube, sliding a double metal connector into the bifurcated tube and gluing a sleeve over the outside. The final step would be the creation of a crude splint from a tongue depresser. I call this the "Even MacGuyver's not that crazy" technique. It seemed simple, but the glue dries VERY slowly and it was important for Max to stay still. So we popped in another Baby Einstein movie (or as we call it, "video morphine"). The surgeon tried 3 times and by the third time his brow had soaked through his little surgeon's cap and actual sweat drips were coming down. The guy remained cool even though we all could see that it wasn't working. He stopped and went out to get another kit. We called in one of the head nurses for another set of hands and on the fourth try they got it but they had to open up the flow in one of the sides of the tube with Heparin. Then we had to put all meds on hold for 4 hours for the glue to set (which it did) and after 48 hours it should be just about as good as new.
So it was intense and our little Max didn't have to get a new tube. It only took a few weeks to pop his first one, let's hope he doesn’t need another.
Thanks for reading this far and for your continued support,
mike
posted by Mike Ciacciarelli
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