We took his temperature again at 2:30 - it was 103.6 - ugh - another call to the on-call doctor.
He said they are still waiting on the blood cultures to come back, and to give him another dose of Tylenol. If he gets worse, or still has a fever at about 8:30pm, to call back - and we'll be heading back to the ED...
Stay tuned!
Saturday, January 10, 2009
Fever Update
Alex slept through the night, and woke up at about 7:30 this morning. He was warm to the touch and shaky. I took his temperature, and it was 101.6 - ugh...
I called the doctor, and they said to try one more dose of Tylenol - and check his fever again after 6 hours (once the Tylenol has worn off). If he still has a fever at that time, they *may* want him to come in again - since the antibiotics they gave him last night in the ED only last 24 hours...
So, we are just watching, and hoping his body can fight off this fever, so we don't have to go to the ED again tonight...
I called the doctor, and they said to try one more dose of Tylenol - and check his fever again after 6 hours (once the Tylenol has worn off). If he still has a fever at that time, they *may* want him to come in again - since the antibiotics they gave him last night in the ED only last 24 hours...
So, we are just watching, and hoping his body can fight off this fever, so we don't have to go to the ED again tonight...
Friday, January 9, 2009
A Trip to the Emergency Department
Today Alex, Tessa and I went for a walk - OK - I walked, they were riding in the Red Waggon I was pulling up and down the hills of our neighborhood. We did a little shopping, and had lunch. It was a nice day - and both of the kids napped in the afternoon, which was nice! (My legs were killing me, after pulling 60+ lbs up the hill to our house)
When Eric got home, and woke Alex up, he noticed Alex felt warm. We took a temperature, and sure enough, he had a fever of 99.4. We waited 15 minutes, and took it again - this time it was 99.8. We ate a quick meal of spaghetti, and took his temperature again, and it hit the magic number 100.4. I called Doerenbecher, and they said to bring him in. We packed up some clothes, and Tessa, and headed over to my mom's house so they could watch Tessa while we went to the ED.
Alex was *not* happy about this - who can blame him!. We literally walked right in, gave our name, and as quickly as they could get a wrist band on him, we were ushered into a room. There was a swarm of nurses ready to access his Port (I'm glad we thought to put the numbing cream on before we left). They all commented on how good he was while they were working on him - he's so brave!
Then, we waited to find out the counts - if they were low, he would get admitted. About 45 minutes later, our favorite ED doctor informed us that his counts were at 6700 - excellent counts. His body was effectively fighting off whatever he had. Over the next 30 minutes, he received some antibiotics, and some Tylenol. The, the nurses deactivated his Port. We had a quick scare that they would keep us longer, when his vitals were checked one more time, and his temperature was up to 101.6. The doctor said not to worry - with his counts being so high - he was safe to go home. Whew!
We have to watch his temperature tomorrow, and if it doesn't come down, we may have to go back again (I really hope not), and get his counts checked again - they can plummet at any time.
But for now, we are home, Alex is asleep in his own bed, and we'll pick up sweet Tessa-Lynn in the morning.
We are so amazed at how streamlined everything is at Doerenbecher. We really feel that we are cared about here - we are not just a number. Our great doctor in the ED said he was actually talking about Alex today (one of his interns was actually doing a rotation in sedation, and watched Alex's procedure yesterday). We are in the best possible hands here, and our Alex is going to make a full recovery with the help of all of the great people surrounding us right now.
It's good to be home...good night!
When Eric got home, and woke Alex up, he noticed Alex felt warm. We took a temperature, and sure enough, he had a fever of 99.4. We waited 15 minutes, and took it again - this time it was 99.8. We ate a quick meal of spaghetti, and took his temperature again, and it hit the magic number 100.4. I called Doerenbecher, and they said to bring him in. We packed up some clothes, and Tessa, and headed over to my mom's house so they could watch Tessa while we went to the ED.
Alex was *not* happy about this - who can blame him!. We literally walked right in, gave our name, and as quickly as they could get a wrist band on him, we were ushered into a room. There was a swarm of nurses ready to access his Port (I'm glad we thought to put the numbing cream on before we left). They all commented on how good he was while they were working on him - he's so brave!
Then, we waited to find out the counts - if they were low, he would get admitted. About 45 minutes later, our favorite ED doctor informed us that his counts were at 6700 - excellent counts. His body was effectively fighting off whatever he had. Over the next 30 minutes, he received some antibiotics, and some Tylenol. The, the nurses deactivated his Port. We had a quick scare that they would keep us longer, when his vitals were checked one more time, and his temperature was up to 101.6. The doctor said not to worry - with his counts being so high - he was safe to go home. Whew!
We have to watch his temperature tomorrow, and if it doesn't come down, we may have to go back again (I really hope not), and get his counts checked again - they can plummet at any time.
But for now, we are home, Alex is asleep in his own bed, and we'll pick up sweet Tessa-Lynn in the morning.
We are so amazed at how streamlined everything is at Doerenbecher. We really feel that we are cared about here - we are not just a number. Our great doctor in the ED said he was actually talking about Alex today (one of his interns was actually doing a rotation in sedation, and watched Alex's procedure yesterday). We are in the best possible hands here, and our Alex is going to make a full recovery with the help of all of the great people surrounding us right now.
It's good to be home...good night!
Meeting Alex's Chemo Pal
Yesterday, I woke up with a feeling of dread and excitement.
Dread, because Alex had a lumbar puncture at 3pm, which meant he couldn't eat anything after 9am, and his appetite has *really* reduced lately. I was afraid I wasn't going to get enough food in him for breakfast to hold him over until 3:30, when he could finally eat.
Excitement, because Alex was going to school again, and he was going to meet his Chemo Pal for the first time (a volunteer who commits to being Alex's pal for the duration of his treatment).
Well, Alex wasn't hungry at breakfast - he had about 1/3 of an apple, and a few bites of Cheerios - I offered pancakes, waffles, eggs, sausage, you name it - he didn't want it...ugh!
School was good, although a few of the kids kept commenting on his lack of hair - I don't know if Alex heard it or not. I'm sure I'm overreacting but I worry about other kids acting differently around him...I hope over time, he'll just be one of the kids again...
I was in the classroom again, and took pictures of the class, and watched Alex (to make sure he didn't eat anything). After class, we headed up to the Hospital. Alex was really upset that he couldn't eat anything, but was soon distracted by a trip up the hill in the tram.
We met Alex's new Chemo Pal, Taylor. She is really sweet, and Alex warmed up to her pretty quick. She plays the Wii also, so Alex thought that was cool
Once Alex's name was called, he turned into a grumpy-pants again - and did his weight and height and vitals while sulking. He even climbed under the table when the nurse came in to access his Port. While trying to get him out from under the bed, I climbed under the bed, and got stuck - Taylor, the nurse and my laughing broke the tension in the room, and Alex sat on my lap on the floor, and the nurse was able access the Port. After that was done, and we were waiting for his blood counts, and the doctor, we played games (blowing up nursing gloves to make Turkey balloons), and taking a trip to the toy box for some silly puddy. Alex showed Taylor the playroom, and then how to play a video game.
The nurse gave him his Vincristine into his Port while Taylor and Alex played. He wasn't too happy to go to the procedure room, so I carried him in, with Taylor following us. She watched as Alex was given the "sleepy milk", and then Taylor and I went back to our room to wait.
While the doctors were doing the LP of Methotrexate, they also did the two shots of Asparaganaise in his thighs, so he wouldn't have to be awake for it. We were told to come back to the procedure room, and Alex slept for 1 1/2 hours. Taylor was there the whole time - it was great. Finally, he woke up, and we headed back to the tram. Alex didn't want to eat anything except McDonald's (how can I say no, after not having any food all day). Alex agreed that it would be good to meet with Taylor again - she's going to try and find more "Cars" and "Star Wars" stuff to bring along with the Thomas the train stuff she brought this time.
Eric and I are just thrilled with the support that we have received from the Children's Cancer Association, and *all* of the staff and volunteers at Doerenbecher. It's nice to know Alex will have a new friend who will be "safe" - no pokes, no medicine, just play.
His counts were great - his ANC was 2700 - and no sign of a fever - he's doing great!
Tuesday, January 6, 2009
First Day Back At School
Yippy!
Alex went back to school today! I stayed in the classroom with him just to make sure that the transition was smooth. I really didn't have anything to worry about. Alex was thrilled to be back at school, and jumped back in like he had never left.
After a great day, on the way home he said "I'm not sick anymore, I get to go to school!" - ugh...a knife through my heart. I told him that he is well enough to go back to school, but that we still had a lot of medicine and doctors appointments to take care of before he was all better.
We finished his second round of Cyterabine last night, and deactivated his port, so when he went to school today, he didn't have any tubes hanging out.
Last night he told *us* what medication he needed to take. "Oh, I need the Zohfahn (Zofran), and the Mercaptahpurn (Mercaptapurine), the Cytabean (Cyterabine) and the Heprain Flush?" He is really getting good at letting us give him his medication. The Zofran is in a syringe, the Mercaptapurine is a crushed tablet in the mango sherbet (I need to find more of it - we are almost out!), and the Cyterabine is in his port.
I was going to post an entry last night called "the goof ball returneth" - but I was too busy hula-hooping, running, bowling, snowboarding, and driving on our Wii game system with Alex and Eric. Tessa was our cheerleader, and was busy walking along all the furniture. Alex has returned to his goofy self. I'm sure it's a combination of getting used to the "new normal", and getting back to some type of routine - including school! It's nice to have him back!
We are watching him closely, since his counts are low, and Tessa-Lynn had a fever a few days ago. The doctors told us not to be surprised if he got a fever, and had to be admitted. She thought it would be a good idea to have our bags packed "just in case". So far, no fever... She also told us about 1% of children who get multiple doses of Methotrexate in the spinal fluid, can have seizures, or stroke-like symptoms (weakness on one side, slurred speech) - that is temporary, but needs to be addressed right away. I forgot to ask her how long we have to watch for these symptoms - just a few days after getting the Methotrexate, or from now until...? It's on my list of questions for this Thursday's appointment.
Even with all of these possible complications, she thought it was really important for him to be back in school. She said "he can't live in a bubble for two years" - I really appreciate her "reality-driven" approach to medicine. I feel Alex is in really good hands with her.
Alex went back to school today! I stayed in the classroom with him just to make sure that the transition was smooth. I really didn't have anything to worry about. Alex was thrilled to be back at school, and jumped back in like he had never left.
After a great day, on the way home he said "I'm not sick anymore, I get to go to school!" - ugh...a knife through my heart. I told him that he is well enough to go back to school, but that we still had a lot of medicine and doctors appointments to take care of before he was all better.
We finished his second round of Cyterabine last night, and deactivated his port, so when he went to school today, he didn't have any tubes hanging out.
Last night he told *us* what medication he needed to take. "Oh, I need the Zohfahn (Zofran), and the Mercaptahpurn (Mercaptapurine), the Cytabean (Cyterabine) and the Heprain Flush?" He is really getting good at letting us give him his medication. The Zofran is in a syringe, the Mercaptapurine is a crushed tablet in the mango sherbet (I need to find more of it - we are almost out!), and the Cyterabine is in his port.
I was going to post an entry last night called "the goof ball returneth" - but I was too busy hula-hooping, running, bowling, snowboarding, and driving on our Wii game system with Alex and Eric. Tessa was our cheerleader, and was busy walking along all the furniture. Alex has returned to his goofy self. I'm sure it's a combination of getting used to the "new normal", and getting back to some type of routine - including school! It's nice to have him back!
We are watching him closely, since his counts are low, and Tessa-Lynn had a fever a few days ago. The doctors told us not to be surprised if he got a fever, and had to be admitted. She thought it would be a good idea to have our bags packed "just in case". So far, no fever... She also told us about 1% of children who get multiple doses of Methotrexate in the spinal fluid, can have seizures, or stroke-like symptoms (weakness on one side, slurred speech) - that is temporary, but needs to be addressed right away. I forgot to ask her how long we have to watch for these symptoms - just a few days after getting the Methotrexate, or from now until...? It's on my list of questions for this Thursday's appointment.
Even with all of these possible complications, she thought it was really important for him to be back in school. She said "he can't live in a bubble for two years" - I really appreciate her "reality-driven" approach to medicine. I feel Alex is in really good hands with her.
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