Yesterday was a very interesting day. The morning was pretty exciting as Cris had been "acoustic" (no med lines/ "tubies") since the day before. The second they deaccessed him, he took off like a rocket and decided to climb on a chair.( I think I am up to my 53,982nd heart attack of the month.) He couldn't get out of the hospital fast enough.
He got to spend a grand total of 7 hours at the Ronald McDonald house before he spiked a fever and we had to rush back to the hospital. You haven't lived until you have run down the street, carrying your 60 pound child, trying to catch a cab at 11 pm. The cab driver thought I wanted to go into Harlem because, apparently Memorial Hospital sounds like Harlem. The cab ride ended with me screaming directions at him (we were only 5 blocks away, but he didn't know where to go) and throwing money into the front seat when we arrived. We spent almost 6 hours in the ER while they waited for his blood pressure to stabilize. At 4:40, we were finally able to go upstairs. By the time I finally fell asleep, it was almost 6 am. I got an amazing 2 hours of sleep last night. If you have ever spent time in a hospital you know that it is the worst place to get any rest. They wake you up every hour to check your vitals, administer meds, stop the pump from beeping, etc ... Cris slept through pretty much everything, so that was good. Come to think of it, he usually sleeps through everything. Oh well, I'll sleep when we go home. I'd rather have him sleep through the night, he needs the rest more than I do.
When Cris finally woke up, he started coughing and sneezing. He coughed so hard that he threw up. They gave him Tylenol to bring down his temp. They ran antibiotics through each of his 3 lines, one at at time over the course of several hours, to determine whether they could continue using the lines. They also took cultures of each of his 3 lines and nasal swabs. We won't have the results until Monday.
They think it could be one of two things:
1. His central line could be infected and may have to be removed. **I asked why they didn't just remove the line since, technically, his counts have recovered and it was only being left in place in case of an emergency. If the line was infected and it was removed, the probled would be solved. The Doctor said that I had a good point, but they didn't want to do anything until the test results come back.**
OR
2. He could have a viral infection. He is being treated with antibiotcs until the cultures come back. If it is viral, the antibiotics will be discontinued and he will only be on a saline hydration drip.
The good news is that they gave him Tylenol at 1 pm, and the fever didn't return until 10. The fever wasn't very high, so I'm thinking that's a good thing. When a child with cancer has a fever, it's a huge deal. With any other child, you can give them some Tylenol and they'll get better in a few days. When a child with cancer has a fever, it's an automatic trip to the ER, where they have to test for every possibility under the sun. The worst part is that our local ER is ill-equipped to deal with Cris and so we have to drive down to Memorial every single time he gets sick. Even when he had been off treatment for several months, we ended up driving into the city at midnight because he was sick. Cancer sucks.
My Boys
Saturday, August 20, 2011
Sunday, August 14, 2011
Happy Birthday
Cris had an amazing birthday party on Friday! Alyson from child life brought him an ice cream cake, made him a Darth Vader birthday poster and bought him some really cool gifts. He had a great day!
Dr. Trippett stopped by Friday evening and said that the transplant team was really impressed by his progress and that he might be ready to come home as early as this week!!!!!! They discontinued the G-CSF (a drug which stimulates cell production) and, while his counts initially dropped, they were also beginning to recover on their own. This is a great sign! His body is doing what it is supposed to and is producing the cells it needs to help him fight infection. He looks great and he has started eating again, so they were also able to discontinue the nutrition drip he was on (that thing used to beep all night long). Today they discontinued one of his antibiotics and they lowered the dose of his pain meds. They are supposed to be either eliminating his meds or switching them to pills to prepare him for going home!! We're on our way out!!!!!!!
I don't know if I mentioned this, but the team told me that Cris will be able to return to school at the end of October/beginning of November. We're planning a back to school Star Wars party for the big day...
Adina
Dr. Trippett stopped by Friday evening and said that the transplant team was really impressed by his progress and that he might be ready to come home as early as this week!!!!!! They discontinued the G-CSF (a drug which stimulates cell production) and, while his counts initially dropped, they were also beginning to recover on their own. This is a great sign! His body is doing what it is supposed to and is producing the cells it needs to help him fight infection. He looks great and he has started eating again, so they were also able to discontinue the nutrition drip he was on (that thing used to beep all night long). Today they discontinued one of his antibiotics and they lowered the dose of his pain meds. They are supposed to be either eliminating his meds or switching them to pills to prepare him for going home!! We're on our way out!!!!!!!
I don't know if I mentioned this, but the team told me that Cris will be able to return to school at the end of October/beginning of November. We're planning a back to school Star Wars party for the big day...
Adina
Tuesday, August 9, 2011
Things Are Starting To Suck Less
Typing with gloves is hard. So is trying to use a touch screen phone while wearing the aforementioned gloves. Sleeping with an isolation gown and mask isn't too much fun either. Just putting that out there.
We have some good news today...they ruled out infection and are now treating him for Engraftment Syndrome. This is common in Autologous Transplant patients despite the fact that they are receiving their own cells. Apparently it is a good thing because it shows that his immune system is beginning to recover (by reacting to these new cells). They started him on steroids (fun, fun, fun) and quickly realized that they had to lower the dose after he cursed out the Physical Therapist. I'm not going to lie, I was pretty amused by the episode. He called her a "Stupid freaking idiot" and told her to shut up because she was annoying him. I wonder where he got that from???? This chick turned to me, with the most priceless look on her face, and tried to explain that this was one of the side effects of the steroids. No Shit. This is his second time at bat. He took steroids for a few months last year, I've seen how the steroids affect him. I live with him. I have been his primary caregiver since he was first diagnosed over a year ago. Homegirl just met him last week and she was forcing him to do something he very clearly didn't want to do. I would have been pissed, too. Anyway, the steroids are working and his fever broke, his blood pressure is back to normal, and the rash is fading.Tomorrow they are inserting a new central line so that he won't have to worry about the IV's in his arms. Hopefully we can get out of the Observation Unit before his birthday on Friday.
Things are looking better =)
Adina
We have some good news today...they ruled out infection and are now treating him for Engraftment Syndrome. This is common in Autologous Transplant patients despite the fact that they are receiving their own cells. Apparently it is a good thing because it shows that his immune system is beginning to recover (by reacting to these new cells). They started him on steroids (fun, fun, fun) and quickly realized that they had to lower the dose after he cursed out the Physical Therapist. I'm not going to lie, I was pretty amused by the episode. He called her a "Stupid freaking idiot" and told her to shut up because she was annoying him. I wonder where he got that from???? This chick turned to me, with the most priceless look on her face, and tried to explain that this was one of the side effects of the steroids. No Shit. This is his second time at bat. He took steroids for a few months last year, I've seen how the steroids affect him. I live with him. I have been his primary caregiver since he was first diagnosed over a year ago. Homegirl just met him last week and she was forcing him to do something he very clearly didn't want to do. I would have been pissed, too. Anyway, the steroids are working and his fever broke, his blood pressure is back to normal, and the rash is fading.Tomorrow they are inserting a new central line so that he won't have to worry about the IV's in his arms. Hopefully we can get out of the Observation Unit before his birthday on Friday.
Things are looking better =)
Adina
Monday, August 8, 2011
Things That Suck
***I am apologizing in advance for any errors in spelling, grammar, punctuation, etc. It has been a rough week and I can't be bothered***
I'll start with the good news: Cristian's counts are improving, which means that the transplant was successful and his body is starting to recover. As of today, he is no longer neutropenic (when his body is most susceptible to infection). (Neutrophils are a type of blood cell whose function is to fight infection).
The not so great news is that over the weekend he developed what they think was an infection in his central (medicine) line. He had a fever and his pressure dropped so they had to remove his medication line and insert two peripheral (temporary) IV lines in his arm. They also moved him out of the inpatient unit into the Pediatric Observation Unit where they can monitor him 24 hours a day. Tomorrow they are most likely going to install a new Central line. This will be his 10th surgical procedure in less than 2 years. This evening, he had to have an emergency CT scan to rule out sinus, chest and lung infections. While he was in the machine, the tech was amazed that he was so comfortable in the CT scanner. He couldn't believe that Cris didn't move once, until I told him that this was his 30th scan (give or take). If the scans rule out sinus, chest and lung infections, then the fever, blood pressure, and rash, are most likely due to the engrafting of the cells and they will put him on steroids. A quick note about steroids; they make him super hyper (more hyper than normal) and MOODY. Last year when he was on steroids I had to curse a chick out for making a comment about his behavior. It was bad. Anyway, if the symptoms are due to cell engraftment, the steroids should resolve the symptoms immediately.
In other news;
The hospital has a washer/dryer in the inpatient unit. Last week I watched as two grown women got into a fight over the washing machine. They started screaming and cursing and the next thing I knew one of the women got pushed by the other woman's husband. You would think that both of these ladies would have more important things to worry about...
Adina
I'll start with the good news: Cristian's counts are improving, which means that the transplant was successful and his body is starting to recover. As of today, he is no longer neutropenic (when his body is most susceptible to infection). (Neutrophils are a type of blood cell whose function is to fight infection).
The not so great news is that over the weekend he developed what they think was an infection in his central (medicine) line. He had a fever and his pressure dropped so they had to remove his medication line and insert two peripheral (temporary) IV lines in his arm. They also moved him out of the inpatient unit into the Pediatric Observation Unit where they can monitor him 24 hours a day. Tomorrow they are most likely going to install a new Central line. This will be his 10th surgical procedure in less than 2 years. This evening, he had to have an emergency CT scan to rule out sinus, chest and lung infections. While he was in the machine, the tech was amazed that he was so comfortable in the CT scanner. He couldn't believe that Cris didn't move once, until I told him that this was his 30th scan (give or take). If the scans rule out sinus, chest and lung infections, then the fever, blood pressure, and rash, are most likely due to the engrafting of the cells and they will put him on steroids. A quick note about steroids; they make him super hyper (more hyper than normal) and MOODY. Last year when he was on steroids I had to curse a chick out for making a comment about his behavior. It was bad. Anyway, if the symptoms are due to cell engraftment, the steroids should resolve the symptoms immediately.
In other news;
The hospital has a washer/dryer in the inpatient unit. Last week I watched as two grown women got into a fight over the washing machine. They started screaming and cursing and the next thing I knew one of the women got pushed by the other woman's husband. You would think that both of these ladies would have more important things to worry about...
Adina
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