When the road takes a sharp turn… Admission Day 67
In support of
Hope for Colby
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Hope for Colby
Unprepared. I felt pretty unprepared for the last 2 days, and I thought I was prepared for anything.
We knew Colby needed more central venous access for necessary medication and infusions. What we didn’t know was that when coming out of sedation, he would show us so quickly that something new was wrong.
Monday involved signs of a GI bleed. We knew this could happen due to portal hypertension. Signs pointed to an upper GI bleed, possibly due to varices.
Medication was started to help stop the bleed while we made a plan to take a look and treat these bleeding varices.
Monday night Colby worsened. He was extremely irritable and became rapidly more unsettled. I have never had a night like we did together. Tears just streamed from the both of us while I tried to calm him, unable to feed due to the needed procedure coming, and also managing his many points of access. You see, with Colby’s extreme pruritus, it’s a full time job alone making sure he doesn’t injure himself further or remove any lines of access.
Tuesday was unbearable. We had moments of 10minutes or so that he would sleep from pure exhaustion. He seemed to be in SO much pain.
I made this known as best I could to his team and thank God that led to his doctor investigating his pancreas. The doctors and nurses here have always listened to me. And I am continually learning to trust my instincts and ask even the silliest of questions to better l understand how I can care for Colby better today than the day before. Always.
Colby had acute pancreatitis and was in severe pain. Not at all what we were hoping to find, but an answer nonetheless. As sad as it was to find this out, it was so good to know we could then give him some pain relief.
Right after his first dose of hydropmorphone, he went to the OR for the endoscopy. This found multiple large varices that were the cause of the bleeding. They were treated with something called schlerotherapy (he will need this often now).
They were unable to extubate Colby, and we were moved to the PICU. Colby is stable, stable enough at least, very very sick. His pain is managed as best as possible right now, and the plan was to attempt to extubate today but so far we have had failed tests that lead us to believe he is not quite ready. We have just given some steroids in hopes this will help create room in his airways.
I feel quite comforted knowing he is receiving so much care here at Alberta Children’s. The PICU was the one place we haven’t needed in this hospital, and though we hoped to never see it, it’s a pretty special place. Not unlike the many other units we’ve spent time in!
From a transplant perspective, we need to see improvement of the pancreatitis before any surgery would be possible. As usual, it’s quite complex, and scary to think he is not eligible as is… but he is monitored so very closely, we are hopeful for recovery to be speedy. Unfortunately the medicine he needs for the GI bleeding, that may have caused the pancreatitis, is one he will need again should he have another bleed. Double edged sword.
Let’s see where the road takes us with the rest of the day…
**photo credit Leah Hennel
We knew Colby needed more central venous access for necessary medication and infusions. What we didn’t know was that when coming out of sedation, he would show us so quickly that something new was wrong.
Monday involved signs of a GI bleed. We knew this could happen due to portal hypertension. Signs pointed to an upper GI bleed, possibly due to varices.
Medication was started to help stop the bleed while we made a plan to take a look and treat these bleeding varices.
Monday night Colby worsened. He was extremely irritable and became rapidly more unsettled. I have never had a night like we did together. Tears just streamed from the both of us while I tried to calm him, unable to feed due to the needed procedure coming, and also managing his many points of access. You see, with Colby’s extreme pruritus, it’s a full time job alone making sure he doesn’t injure himself further or remove any lines of access.
Tuesday was unbearable. We had moments of 10minutes or so that he would sleep from pure exhaustion. He seemed to be in SO much pain.
I made this known as best I could to his team and thank God that led to his doctor investigating his pancreas. The doctors and nurses here have always listened to me. And I am continually learning to trust my instincts and ask even the silliest of questions to better l understand how I can care for Colby better today than the day before. Always.
Colby had acute pancreatitis and was in severe pain. Not at all what we were hoping to find, but an answer nonetheless. As sad as it was to find this out, it was so good to know we could then give him some pain relief.
Right after his first dose of hydropmorphone, he went to the OR for the endoscopy. This found multiple large varices that were the cause of the bleeding. They were treated with something called schlerotherapy (he will need this often now).
They were unable to extubate Colby, and we were moved to the PICU. Colby is stable, stable enough at least, very very sick. His pain is managed as best as possible right now, and the plan was to attempt to extubate today but so far we have had failed tests that lead us to believe he is not quite ready. We have just given some steroids in hopes this will help create room in his airways.
I feel quite comforted knowing he is receiving so much care here at Alberta Children’s. The PICU was the one place we haven’t needed in this hospital, and though we hoped to never see it, it’s a pretty special place. Not unlike the many other units we’ve spent time in!
From a transplant perspective, we need to see improvement of the pancreatitis before any surgery would be possible. As usual, it’s quite complex, and scary to think he is not eligible as is… but he is monitored so very closely, we are hopeful for recovery to be speedy. Unfortunately the medicine he needs for the GI bleeding, that may have caused the pancreatitis, is one he will need again should he have another bleed. Double edged sword.
Let’s see where the road takes us with the rest of the day…
**photo credit Leah Hennel
Steph Crofts
6 months ago
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