Saturday, March 30, 2013
We are home
No fever after one dose of Tylenol yesterday afternoon and we were discharged after 24 hour blood culture remained negative. In the past 24 hours, Lucas had 5 different antibiotics. Hospital is no fun, especially when there's fever involved.
Friday, March 29, 2013
100.8 3:30pm, 101.8 4:30pm
Blood culture, broad spectrum antibiotics, stay over night.
We really can't handle another blood culture positive. Let this just be a fever that goes away quickly and no reason is fine with us.
We really can't handle another blood culture positive. Let this just be a fever that goes away quickly and no reason is fine with us.
Temp 100.4, still in hospital
Appetite decreased today. Measured 100.4 1pm and 2pm. Technically not a fever and we are given the choice of going back home and monitoring him at hime. We choose to let him take his nap here and wait and see if the temperature rises or falls.
The hardest thing is still trying to get him drink. His IV fluids stopped at 8am and for the last 5 hours he just wouldn't drink much, even said no to milk.
I looked up the side effects of HDMTX. Chills and fever occur very rarely. And his ANC is 3108 today. He has no symptoms for viral infection. So we really don't know what to make of this rise in temperature.
The hardest thing is still trying to get him drink. His IV fluids stopped at 8am and for the last 5 hours he just wouldn't drink much, even said no to milk.
I looked up the side effects of HDMTX. Chills and fever occur very rarely. And his ANC is 3108 today. He has no symptoms for viral infection. So we really don't know what to make of this rise in temperature.
Going home today~~~
I hope I won't need to update the blog as often and our journey will be uneventful going forward.
But we had our scare last night when Lucas had flush cheeks and temperature measured 99.6. We were so relieved that it went away on its own. We just can't deal with another fever or any other unexpected events any more. God only gives one how much one can handle. So please, we can't handle any more!
High dose methotrexate is cleared quickly for Lucas. 24, 42, 48 hour levels were 25, 0.17, and 0.08 respectively, well below the 150, 1, and 0.4 requirements. Lucas is off bicarbonates as of 8am this morning, which is hour 59 from the start of HDMTX.
His glucose is now stable in low 90's. Each day of good eating boost his glucose. We don't need to check him at home as long as he continues to eat well.
We will come back to clinic on Monday for CBC and needle change. Then we will come back Thursday for routine exam.
But we had our scare last night when Lucas had flush cheeks and temperature measured 99.6. We were so relieved that it went away on its own. We just can't deal with another fever or any other unexpected events any more. God only gives one how much one can handle. So please, we can't handle any more!
High dose methotrexate is cleared quickly for Lucas. 24, 42, 48 hour levels were 25, 0.17, and 0.08 respectively, well below the 150, 1, and 0.4 requirements. Lucas is off bicarbonates as of 8am this morning, which is hour 59 from the start of HDMTX.
His glucose is now stable in low 90's. Each day of good eating boost his glucose. We don't need to check him at home as long as he continues to eat well.
We will come back to clinic on Monday for CBC and needle change. Then we will come back Thursday for routine exam.
Tuesday, March 26, 2013
Lucas is 3!
Even though he still claims he is mommy's little baby from time to time, he is definitely growing up. I caught him counting the number of his fingers with Bandaid for each hand today.
Today has been a long day. Maybe because we had tried hard to keep his blood sugar steady for the past 2 days, either with food or with dextrous IV, this morning of fasting was hard for him. At 12 noon Lucas had his 8th spinal tap -- and I scored my first win to go into the operation room with him and stayed till the general anesthesia started to work. He remembered it afterwards and asked me why I wore doctor clothes and hat. It wasn't fun to see what anesthesia does to your kid. But at least he didn't cry hysterically before the anesthesia as I kept telling him that if he cried they would not let me stay with him.
He is very energetic today, had a big late lunch and didn't need a nap. He ate half the meal size ham sandwich for dinner. Then we got a surprise. When nurses switch shifts from 7 to 7:30, a lot of them showed up to sing Happy Birthday with a small cake. Hospital policy says no candles but Lucas was happy with the cake. Just to negate what I said earlier that he didn't like sweet food, he ate 1/4 of the cake (minus the icing).
We didn't start high dose methotrexate until 9pm. This is a complicated chemo and I read the protocol closely. Only to find that the hospital doesn't follow the protocol 100%. They don't check for urine specific gravity before hand -- just to give him bicarbonate for 4 hours. Instead of adjusting bicarbonate to make his urine pH stay in 7 and 8, as specified by protocol, they only care that the pH is above 7, and his last number was 9. They won't check for 36 hour MTX levels. They didn't adhere IT MTX need to happen within +/- 6 hours of IV MTX either. I guess it's like most things in life. Rules are wrote to be broken. The next few nights will be rough as the IV amount he is getting means one diaper every hour. They check MTX levels till 72 hour so the earliest we can get home is Saturday. Things were made even more complicated as Lucas need to stop IV completely to have the vancomysin lock therapy every 24 hours while the chemo needs to flow constant for 24 hours while the IV fluids+bicarbonate needs flow constant for 48 hours. They would have to get another IV in his arm so vancomysin lock could be continued (though chemo can't go through veins so there will be 32 hours in-between today's dose and tomorrow's dose). Just hope the chemo will clear quickly for Lucas and there will be no more complications.
Lucas had his iconic laugh "ha-ha-ha" when the crowd of nurses walked in. It was a little overwhelming for me too as I didn't register that his favorite outpatient chemo clinic nurse showed up as well until they left. Some of these caregivers (mostly nurses and child life workers, rarely doctors) are really like angels. They are dedicated and skilled and seem to really care about the kids. Their calmness and optimism influence me in a very positive way.
Today has been a long day. Maybe because we had tried hard to keep his blood sugar steady for the past 2 days, either with food or with dextrous IV, this morning of fasting was hard for him. At 12 noon Lucas had his 8th spinal tap -- and I scored my first win to go into the operation room with him and stayed till the general anesthesia started to work. He remembered it afterwards and asked me why I wore doctor clothes and hat. It wasn't fun to see what anesthesia does to your kid. But at least he didn't cry hysterically before the anesthesia as I kept telling him that if he cried they would not let me stay with him.
He is very energetic today, had a big late lunch and didn't need a nap. He ate half the meal size ham sandwich for dinner. Then we got a surprise. When nurses switch shifts from 7 to 7:30, a lot of them showed up to sing Happy Birthday with a small cake. Hospital policy says no candles but Lucas was happy with the cake. Just to negate what I said earlier that he didn't like sweet food, he ate 1/4 of the cake (minus the icing).
We didn't start high dose methotrexate until 9pm. This is a complicated chemo and I read the protocol closely. Only to find that the hospital doesn't follow the protocol 100%. They don't check for urine specific gravity before hand -- just to give him bicarbonate for 4 hours. Instead of adjusting bicarbonate to make his urine pH stay in 7 and 8, as specified by protocol, they only care that the pH is above 7, and his last number was 9. They won't check for 36 hour MTX levels. They didn't adhere IT MTX need to happen within +/- 6 hours of IV MTX either. I guess it's like most things in life. Rules are wrote to be broken. The next few nights will be rough as the IV amount he is getting means one diaper every hour. They check MTX levels till 72 hour so the earliest we can get home is Saturday. Things were made even more complicated as Lucas need to stop IV completely to have the vancomysin lock therapy every 24 hours while the chemo needs to flow constant for 24 hours while the IV fluids+bicarbonate needs flow constant for 48 hours. They would have to get another IV in his arm so vancomysin lock could be continued (though chemo can't go through veins so there will be 32 hours in-between today's dose and tomorrow's dose). Just hope the chemo will clear quickly for Lucas and there will be no more complications.
Lucas had his iconic laugh "ha-ha-ha" when the crowd of nurses walked in. It was a little overwhelming for me too as I didn't register that his favorite outpatient chemo clinic nurse showed up as well until they left. Some of these caregivers (mostly nurses and child life workers, rarely doctors) are really like angels. They are dedicated and skilled and seem to really care about the kids. Their calmness and optimism influence me in a very positive way.
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