Not much new to report tonight. Katie was feeling pretty good today and she got out of her room to play several times. She rode on wheeled toys. She climbed on things. She through balls everywhere. She played, she smiled and she laughed. But, she didn't poop and that is what we are all waiting for now. It has been since Sunday.
Her next dose of chemotherapy includes a drug that causes constipation so the doctors are still holding off on it, trying not to compound the problem, but it has to be given within the next 24-48 hours. Hopefully her body starts working correctly again before we have to introduce more problems.
Her blood cell counts still seem to be dropping. Her ANC slowed down and she only dropped from 30 to 10 today, but her red blood count is back down to just 7.2 and her platelets are also down. Amy found new petechia on Katie tonight. Nobody has even mentioned a date for returning home. We will just have to wait and see what tomorrow brings.
Showing posts with label petechia. Show all posts
Showing posts with label petechia. Show all posts
Friday, August 15, 2008
Tuesday, April 29, 2008
The Good Signs Continue
I have just talked with Amy and gotten further updates on Katie's cell counts, her medications and her experiences wandering the halls outside her room. Katie's white blood cell count is now up to 1007. Her hemoglobin is currently 8.8. Her platelets are a blissful 103,000 which should mean that petechia are a thing of the past for now. Her antibiotics have been cut from the three that were giving her the nastier side-effects of whole body hives and the deteriorating stomach lining to just one. The remaining antibiotic is Ceftazidime, a drug that she has had in the past with no side-effects.
Katie is still feeling good. In fact, she walked on her own today without help from her mom. She found a little shopping cart to play with and she walked down the hall to a little kitchen area just for the patients at Baird 5. The room contains a fridge (stocked with ice cream, Popsicles, and milk), a microwave, a water and ice dispenser and cupboards filled with things like crackers, cereal, soup, and other kid friendly food. She put a container of ice cream in her cart, grabbed a spoon and headed down the hall to eat in the play room. Unfortunately, after twelve days of mostly bed rest and no walking, she was a bit unsteady on her feet and she ended up falling down and getting very upset about that. Her ability to walk has also been compromised the the Vincristine that she received as her last chemotherapy drug. It can effect a person's nervous system and make it difficult for the legs and feet to do what they are supposed to do.
Aside from that, she is having a really good day, and that has put Amy in a really good mood as well. Looking ahead to next week, we may actually be able to bring her home again. Bringing her home this weekend may even be a remote possibility. Of course, no doctor has been foolish enough to say this. I'm just sharing my hopes in a public forum.
Katie is still feeling good. In fact, she walked on her own today without help from her mom. She found a little shopping cart to play with and she walked down the hall to a little kitchen area just for the patients at Baird 5. The room contains a fridge (stocked with ice cream, Popsicles, and milk), a microwave, a water and ice dispenser and cupboards filled with things like crackers, cereal, soup, and other kid friendly food. She put a container of ice cream in her cart, grabbed a spoon and headed down the hall to eat in the play room. Unfortunately, after twelve days of mostly bed rest and no walking, she was a bit unsteady on her feet and she ended up falling down and getting very upset about that. Her ability to walk has also been compromised the the Vincristine that she received as her last chemotherapy drug. It can effect a person's nervous system and make it difficult for the legs and feet to do what they are supposed to do.
Aside from that, she is having a really good day, and that has put Amy in a really good mood as well. Looking ahead to next week, we may actually be able to bring her home again. Bringing her home this weekend may even be a remote possibility. Of course, no doctor has been foolish enough to say this. I'm just sharing my hopes in a public forum.
Monday, April 7, 2008
Monday Update
Katie spent the day with Grandma Kathy again today while Amy and I went to school. We think that this week will be a short week for Katie and her grandmother because Katie appears to be getting closer and closer to needing another transfusion and may not make it to Thursday. The petechia seem to be taking over her body, her color is becoming more and more pale and even though it doesn't always seem it, her energy levels are dropping and she is getting tired more easily. We will find out tomorrow whether or not we have to take her in to Fletcher Allen a day early.
She had a good day today, even getting a chance to get outside and get some fresh air and she and her grandmother walked around town. She romped and played like most any other day when she is feeling good. She also got a kick out of watching men climbing on scafolding outside the window as they were working on our roof today.
When Amy and I got home from work this afternoon, we took her for a ride to North Country Hospital for a little blood work. She took it well even though the blood was drawn from her arm instead of the usual finger prick so that her liver enzymes could be tested too this time. The only trouble we had was on the way home when she didn't get her way and she cried all the way home - showing us just how tired she was.
I shot the video tonight at bedtime as Amy was reading Katie some of her favorite bedtime stories. She didn't last too much longer after I turned the camera off.
She had a good day today, even getting a chance to get outside and get some fresh air and she and her grandmother walked around town. She romped and played like most any other day when she is feeling good. She also got a kick out of watching men climbing on scafolding outside the window as they were working on our roof today.
When Amy and I got home from work this afternoon, we took her for a ride to North Country Hospital for a little blood work. She took it well even though the blood was drawn from her arm instead of the usual finger prick so that her liver enzymes could be tested too this time. The only trouble we had was on the way home when she didn't get her way and she cried all the way home - showing us just how tired she was.
I shot the video tonight at bedtime as Amy was reading Katie some of her favorite bedtime stories. She didn't last too much longer after I turned the camera off.
Thursday, April 3, 2008
Not According to the Plan
Apparently, last night's post was wishful thinking. Katie took a turn for the worst over night and woke up this morning complaining of ailments that her normal medicines did not help. She woke up crying because her stomach hurt and we gave her some Zofran. She complained of her head hurting and we gave her some Tylenol but became concerned because her headaches usually only happen when her blood counts drop. She was still in bed when I left for work.
Amy called me about an hour ago with her update. They were almost to Fletcher Allen and Katie had not gotten any better. She had vomited several times already which was very unlike her and she was still complaining that her head hurt and she just didn't feel good. Amy also told me that when she changed Katie out of her pajamas and into clothes for the day, she found many petechia.
Not surprisingly, I'm not pleased with the suddenness of the change and I'm worried about my little girl. I just tried to call Amy but go no answer, so I will try again after classes this afternoon. I'm assuming - no, I'm hoping that this means she will get a transfusion while she is at Fletcher Allen. Transfusions always make her feel so much better.
Amy called me about an hour ago with her update. They were almost to Fletcher Allen and Katie had not gotten any better. She had vomited several times already which was very unlike her and she was still complaining that her head hurt and she just didn't feel good. Amy also told me that when she changed Katie out of her pajamas and into clothes for the day, she found many petechia.
Not surprisingly, I'm not pleased with the suddenness of the change and I'm worried about my little girl. I just tried to call Amy but go no answer, so I will try again after classes this afternoon. I'm assuming - no, I'm hoping that this means she will get a transfusion while she is at Fletcher Allen. Transfusions always make her feel so much better.
Wednesday, March 12, 2008
Wednesday Update
Amy and I both went to school again today and Katie stayed home with Grandma Kathy. She didn't make it easy for us to leave the house this morning. She wanted either her mother or myself to stay home and she cried as we left. Amy had an especially hard time leaving the house as Katie cried for her mother from the other room. However, after we left Katie and grandma both had a good day.
Katie continues to grow a little sicker and a little weaker each day as we get closer and closer to transfusion time. She complained of a headache earlier, which generally means her Hemoglobin is low, and she has developed a few new spots of petechia which indicates that she also has low platelet levels again.
Because of her symptoms, we decided to take her to the hospital for lab work one day early. After school today, we picked her up and headed right to the Hospital to have blood drawn. Katie was great! She talked to the lab tech about horses as the tech drew her blood. We were already scheduled for a trip to Fletcher Allen this Friday for another transfusion, but if the blood test show that her levels are as low as we think they are, Amy and Katie will be headed to Fletcher Allen tomorrow instead.
For now, we are just following the normal bed time routine of stories and a quick cuddle and then off to sleep. Oh, I almost forgot to mention it but I am doing my part of the routine in a hospital mask since I now definitely have a cold. I feel tired and rundown with a tight, painful cough to top it off. The cold is a really nice addition to the multitude of complications that we already deal with every day.
Katie continues to grow a little sicker and a little weaker each day as we get closer and closer to transfusion time. She complained of a headache earlier, which generally means her Hemoglobin is low, and she has developed a few new spots of petechia which indicates that she also has low platelet levels again.
Because of her symptoms, we decided to take her to the hospital for lab work one day early. After school today, we picked her up and headed right to the Hospital to have blood drawn. Katie was great! She talked to the lab tech about horses as the tech drew her blood. We were already scheduled for a trip to Fletcher Allen this Friday for another transfusion, but if the blood test show that her levels are as low as we think they are, Amy and Katie will be headed to Fletcher Allen tomorrow instead.
For now, we are just following the normal bed time routine of stories and a quick cuddle and then off to sleep. Oh, I almost forgot to mention it but I am doing my part of the routine in a hospital mask since I now definitely have a cold. I feel tired and rundown with a tight, painful cough to top it off. The cold is a really nice addition to the multitude of complications that we already deal with every day.
Tuesday, January 22, 2008
Tuesday Morning Update
I am home now and back at work. I just called Amy for an update on Katie's condition and she had nothing but good news. Katie has been officially cleared to come home Wednesday. From that point forward, she will be taking a trip to Fletcher Allen every Tuesday and Friday for additional treatments, blood transfusions, and bone marrow extractions. To help expedite the process, the VNA will be coming to the house on Mondays and Thursdays to draw blood from Katie so that it can be forwarded to Fletcher Allen for testing.
Katie is currently covered with petechia indicating that her platelet count is low, but she is otherwise fine. Her IV has been removed, although the PICC line remains in for treatments when she returns to Fletcher Allen. She is still eating and drinking well on her own. She even took her worst tasting medication without problem. The doctors were a little worried that she wouldn't take it, and it has to be taken by mouth. She continues to be an amazing patient.
Katie is currently covered with petechia indicating that her platelet count is low, but she is otherwise fine. Her IV has been removed, although the PICC line remains in for treatments when she returns to Fletcher Allen. She is still eating and drinking well on her own. She even took her worst tasting medication without problem. The doctors were a little worried that she wouldn't take it, and it has to be taken by mouth. She continues to be an amazing patient.
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