January 20th
I receive a call, Sergio has a fever. Off to the school I go, get him, draw labs, cultures, start antibiotics. He gets hotter and hotter. I give a dose of toradol and Tylenol. He finally cools down.
January 21st
3:00 am, my phone rings. Sergio is 103 degrees. I come to his room and find him shaking violently as he spikes one of his very high temps. His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids. His heart rate is in the 190's. I know he has a severe line infection (thanks to his usless gut).
4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105. I've already started everything needed for the sepsis protocol the ER uses. So we sit and wait for a room, while he cooks and I watch the monitor.
6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something. She orders a bolus of fluid. We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.
7:00 am the PICU doctor is consulted, Sergio is looking septic. Orders more antibiotics.
3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well. Cultures are positive for a gram negative bacteria called Klebsiella. It is his arch nemesis. It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.
January 23rd. Sergio looks wonderful. He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed. We go home at 3:00 pm on two antibiotics.
3:30 pm I arrive home, he is shivering. I quickly find ways to justify the shivering and try to reassure myself that he is ok.
5:00 pm Sergio has a temp of 101.5. Take a deep breath, cry that it's all starting again just 2 hours after discharge. Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".
January 24th
12:05 am Phone rings. Sergio is spiking quickly and he is shaking violently again. Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.
12:30 am Sepsis protocol restated. The antibiotic stopped prior to discharge, restarted. Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one.
3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs. He is doing well and seems to be responding.
January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions. The attending physicians are convinced he has a clot. We head to CT scan to look. He looks off but nothing specific. CT all clear, just Sergio's body doing strange stuff without explanation as usual.
January 26th
9:00 am Sergio is not himself but he is no longer "sick". Very sleepy, but once up, plays hard and walks the halls. Has some respiratory stuff going on.
3:00 pm - Looks much better. Causing trouble, playing in the sink. Going home on two antibiotics again.
January 27th - Had a good night. Doesn't look like he feels well in the AM though. Run some errands, to return to Sergio running a fever.
11:00 am - Back in the ER for the third time in five days. This time, he isn't bouncing back. Several boluses giving. Spikes to 105.4. Given Tylenol. Cools down, looks a bit better. No room in the PICU so sent to regular floor.
3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future. He is moved to the PICU as a full PICU patient.
6:00 am - Sergio is now on maximum dopamine support to keep his pressures up. Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm. Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while. The fluid is catching up though and his lungs get "wet' and he struggles to breath.
3:00 pm - Finally go to surgery. Line removed. Return to room on high flow oxygen and real struggles to breath. Chest x-ray looks worse.
January 28th - Struggles to breath continue. Blood pressures are very, very high (170/110) due to fluid overload. Wean off of Dopamine to help bring B/P down. Give lasix to help pull some off. Needs several potassium infusions to keep it up. Give does of IVIG to help boost his immune system as it has crashed in response to this infection.
January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days. Breathing is better, but still needing O2. Develops awful cough. Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.
January 30th - Feeling better. Cough continues. Cultures are negative so we stop all antibiotics. Getting more potassium.
January 31st - Fever returns to 103.4. All antibiotics and steroids are restarted. More potassium.
February 1st - Flu A positive. Someone in the hospital gave him the flu. More potassium.
February 2nd - Cultures are neg. so we stop all antibiotics and steroids again. On Tamiflu for the flu. No longer needing any O2. Still getting potassium infusions daily.
February 3rd - Fever returns to 103.7. All antibiotics and steroids are restarted. Frustration abound for everyone. White count plummets. More potassium.
February 4th - Sergio is looking good. Playing, happy, more energy. Decision is to wait one more day and discharge on all antibiotics if still good. Increased Sergio's potassium in his hydration and TPN to maximum amounts. One more infusion.
February 5th. - Sergio GO'S HOME!!!
We are now over 5 days out from the completion of his antibiotics and thus far doing great. Praying all this is behind us.
This is a boring recount of what it's like for my sweet baby. He goes through so much just to live, be happy and play. He doesn't care how sick he "was" as long as he feels good again, he moves on. That's the reason I fight so hard for all of my kids. They WANT to live. So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.
More interesting posts to come soon.
Love,
Renee
I receive a call, Sergio has a fever. Off to the school I go, get him, draw labs, cultures, start antibiotics. He gets hotter and hotter. I give a dose of toradol and Tylenol. He finally cools down.
January 21st
3:00 am, my phone rings. Sergio is 103 degrees. I come to his room and find him shaking violently as he spikes one of his very high temps. His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids. His heart rate is in the 190's. I know he has a severe line infection (thanks to his usless gut).
4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105. I've already started everything needed for the sepsis protocol the ER uses. So we sit and wait for a room, while he cooks and I watch the monitor.
6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something. She orders a bolus of fluid. We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.
7:00 am the PICU doctor is consulted, Sergio is looking septic. Orders more antibiotics.
3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well. Cultures are positive for a gram negative bacteria called Klebsiella. It is his arch nemesis. It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.
January 23rd. Sergio looks wonderful. He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed. We go home at 3:00 pm on two antibiotics.
3:30 pm I arrive home, he is shivering. I quickly find ways to justify the shivering and try to reassure myself that he is ok.
5:00 pm Sergio has a temp of 101.5. Take a deep breath, cry that it's all starting again just 2 hours after discharge. Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".
January 24th
12:05 am Phone rings. Sergio is spiking quickly and he is shaking violently again. Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.
12:30 am Sepsis protocol restated. The antibiotic stopped prior to discharge, restarted. Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one.
3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs. He is doing well and seems to be responding.
January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions. The attending physicians are convinced he has a clot. We head to CT scan to look. He looks off but nothing specific. CT all clear, just Sergio's body doing strange stuff without explanation as usual.
January 26th
9:00 am Sergio is not himself but he is no longer "sick". Very sleepy, but once up, plays hard and walks the halls. Has some respiratory stuff going on.
3:00 pm - Looks much better. Causing trouble, playing in the sink. Going home on two antibiotics again.
January 27th - Had a good night. Doesn't look like he feels well in the AM though. Run some errands, to return to Sergio running a fever.
11:00 am - Back in the ER for the third time in five days. This time, he isn't bouncing back. Several boluses giving. Spikes to 105.4. Given Tylenol. Cools down, looks a bit better. No room in the PICU so sent to regular floor.
3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future. He is moved to the PICU as a full PICU patient.
6:00 am - Sergio is now on maximum dopamine support to keep his pressures up. Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm. Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while. The fluid is catching up though and his lungs get "wet' and he struggles to breath.
3:00 pm - Finally go to surgery. Line removed. Return to room on high flow oxygen and real struggles to breath. Chest x-ray looks worse.
January 28th - Struggles to breath continue. Blood pressures are very, very high (170/110) due to fluid overload. Wean off of Dopamine to help bring B/P down. Give lasix to help pull some off. Needs several potassium infusions to keep it up. Give does of IVIG to help boost his immune system as it has crashed in response to this infection.
January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days. Breathing is better, but still needing O2. Develops awful cough. Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.
January 30th - Feeling better. Cough continues. Cultures are negative so we stop all antibiotics. Getting more potassium.
January 31st - Fever returns to 103.4. All antibiotics and steroids are restarted. More potassium.
February 1st - Flu A positive. Someone in the hospital gave him the flu. More potassium.
February 2nd - Cultures are neg. so we stop all antibiotics and steroids again. On Tamiflu for the flu. No longer needing any O2. Still getting potassium infusions daily.
February 3rd - Fever returns to 103.7. All antibiotics and steroids are restarted. Frustration abound for everyone. White count plummets. More potassium.
February 4th - Sergio is looking good. Playing, happy, more energy. Decision is to wait one more day and discharge on all antibiotics if still good. Increased Sergio's potassium in his hydration and TPN to maximum amounts. One more infusion.
February 5th. - Sergio GO'S HOME!!!
We are now over 5 days out from the completion of his antibiotics and thus far doing great. Praying all this is behind us.
This is a boring recount of what it's like for my sweet baby. He goes through so much just to live, be happy and play. He doesn't care how sick he "was" as long as he feels good again, he moves on. That's the reason I fight so hard for all of my kids. They WANT to live. So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.
More interesting posts to come soon.
Love,
Renee
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