Ashton was released last Friday and did ok...well sorta. After the whole traumatizing experience of having the NG tube placed, he threw it up Saturday and we had to go into Dominican and do it all over again. And If that wasn't enough, he threw it up again Sunday night and had to get ANOTHER one placed Monday. Having the tube pushed down through his nose and into his stomach is so extremely uncomfortable for him, he screams the whole time, but once its in place he feels much better. He had a regular clinic check up Monday, he also had his scheduled syringe of Chemo. The blood test results on Monday came back showing that he needed a blood transfusion, so our short visit turned into an extra long one. We were in the hospital from 11-7:30. But he bounced back and felt much better so it was a good thing. His vomiting has been under control since we worked out a new medication plan....really the only times he has been sick have been the times he vomited up his tube, so just twice.
Now to the good part.....we are back in the hospital for another possible long stay. After I got back from Cassidy's softball practice last night, I felt Ashton's forehead and he was HOT. His fever was 102.2...Pat called the doctor and we were told to come in immediately. I had to come alone because Pat needed to stay with the other kids, but my aunt and uncle met me at the ER here and helped out. He had his blood drawn, x-rays taken, nose swabbed, all these wonderful fun things. I forgot to mention that Ashton has had a runny nose and a cough for a couple of days now....it just got worse last night and that's when he spiked the fever. I knew coming in that any fever he would get means he would be admitted for at least 2 days. In talking to his dr. on the drive up, she told me that if his white count was ok, which it was fine on Monday, and he didn't test positive for a bacteria infection, then he should be ok to go home. Turned out though, and I was totally surprised, but his white cell count was pretty much zero. Definite admission.
By the time we got these results, it was midnight and Ashton was sleeping. They said it would be about an hour and then we would be transferred over to the oncology unit. We didn't get into our room until 3am. I got 3 hours of sleep. Good thing is Ashton is sleeping now and his fever is a little lower due to Tylenol. We cant go home until he is 24 hours without fever and tests show his white cell count is going up. They told us it could be 2 days to a week and a half. I am so disappointed this happened so soon after chemo. I thought his counts would drop next week, that's what they were predicting. They think since he came off Radiation so recently that it contributed to his low counts. So in the last few days he has had a red cell transfusion, a platelet transfusion, and is now hospitalized for Neutropenia (sp?) which means no white cells to fight off illness. He is on antibiotics and we are hoping the fever is just due to the cold he seems to have caught from me. Please think of Ashton and keep your fingers crossed that he will get better soon and we can go home.....for at least a few days until the next round.
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3 comments:
Wow, what a long weekend you had. I'll be thinking of your family and Ashton as he fights off his cold. Gordon had that problem when he was having his cancer treatments. Low white count and red count and then got phenmonia and had to be in the hospital for a week. I was giving him nupigen (sp) shots but they just didn't work fast enough. Praying everyday for your family. Colleen
I am praying for Ashton and
your family. My 10 year old nephew is about 2 weeks behind Ashton in regards to treatment. He has 7 more radiation treatments and has had some chemo. He was diagnosed with Medullblatoma (sp) on Jan 8th. He too suffers from major motor skill loss on his left side but is now on a walker. He inspires me every day as I am sure Ashton does you. I am sending you millions of positive cyber vibes because this is treatable and curable. Such a shame the children have to go through so much, but IT WILL MAKE THEM WELL.
Very Best Wishes to you all.
Karen
Dorey and Pat -
This is Daisy's Mom - we were in the bed next to Ashton at Stanford when you first learned about the Cancer. Daisy stayed a few weeks beyond Ashton's departure, and has returned to the PICU once this year for almost two weeks. She has an issue with lipid storage. It's scary, but we are hopeful for a positive prognosis.
We have not stopped thinking about Ashton and all of you. He is in our prayers everyday. I know about the ng tube - it is so hard to use it - I replaced Daisy's about 15-20 times, and she only had it for 2 months. I hated it - and I think she did to. She now has a "g" tube - surgically placed in her belly. Much easier, much more comfortable for her. She does eat by mouth, but no more worries. I am glad to hear about Ashton's progress, what a fighter. I am so sorry that all if this happening to your family. I do know how hard it is and I pray for all of you everyday. All of our love, the Knowles Family
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