See how much more comfortable I am today? This is much better, gotta love narcotics for pain and sleepiness.
It even gives daddy a chance to take a breath and check his phone (or play chess). Down time is great and definitely necessary or we get as grumpy as Aiden is and the nurses have to send us to time out. Luckily that hasn't happened yet.
Ok so the new fun thing to do is wash hands forever. I guess this is really good for him as it is so important to be a little OCD about handwashing during this process but it gets a little old for the parents.
At this point he is completely soaked down to his pants. Daddy finally had to put his foot down and turn off the water which is a fight but we are still the parents, I think.
Today was a lot more comfortable for Aiden in the beginning. It was the second big dose out of three that he will be getting. Shortly after this picture, about 5:30 they were just finishing up the saline flush after the chemo treatment and we went to change Aiden's diaper as he had wet through and found that he was covered in hives. The nurse went to call the doc and by the time she got back with the extra dose of hydrocortisone he had hives from his head to his toes, red and angry. After the nurse got the steriods in him they hives calmed down but then we went back to every 15-20 min vitals checks. The extra dose of steriods made him really cranky along with the itching from the hives and just general feeling yuckiness. It was a long night til he fell asleep around ten. The hives are completely normal with this chemo drug - it is a special antibody that they made to target the T & B cells specifically and it can and usually does cause an immune response i.e. hives, rashes, fever etc. So tomorrow they will be giving him higher doses of the steriods throughout the chemo treatments. He responded well and once he fell asleep he had a pretty good night. All the hives and red itchies went away. I have a love/hate relationship with the steriods. So glad we have them to help with this process but hate that they turn my sweet baby into the incredible grumpy hulk (which is currently his favorite movie we get to watch over and over and over and over...)
See how much more comfortable I am today? This is much better, gotta love narcotics for pain and sleepiness.
It even gives daddy a chance to take a breath and check his phone (or play chess). Down time is great and definitely necessary or we get as grumpy as Aiden is and the nurses have to send us to time out. Luckily that hasn't happened yet.
Ok so the new fun thing to do is wash hands forever. I guess this is really good for him as it is so important to be a little OCD about handwashing during this process but it gets a little old for the parents.
At this point he is completely soaked down to his pants. Daddy finally had to put his foot down and turn off the water which is a fight but we are still the parents, I think.
Today was a lot more comfortable for Aiden in the beginning. It was the second big dose out of three that he will be getting. Shortly after this picture, about 5:30 they were just finishing up the saline flush after the chemo treatment and we went to change Aiden's diaper as he had wet through and found that he was covered in hives. The nurse went to call the doc and by the time she got back with the extra dose of hydrocortisone he had hives from his head to his toes, red and angry. After the nurse got the steriods in him they hives calmed down but then we went back to every 15-20 min vitals checks. The extra dose of steriods made him really cranky along with the itching from the hives and just general feeling yuckiness. It was a long night til he fell asleep around ten. The hives are completely normal with this chemo drug - it is a special antibody that they made to target the T & B cells specifically and it can and usually does cause an immune response i.e. hives, rashes, fever etc. So tomorrow they will be giving him higher doses of the steriods throughout the chemo treatments. He responded well and once he fell asleep he had a pretty good night. All the hives and red itchies went away. I have a love/hate relationship with the steriods. So glad we have them to help with this process but hate that they turn my sweet baby into the incredible grumpy hulk (which is currently his favorite movie we get to watch over and over and over and over...) 
Hi Kimberly...this is Kim Gibson from book club/Michelle Nielsen's sister. I didn't know you and your family were going through this trial until recently. My heart and prayers go out to you and your sweet little family. You truly are an amazing person and an example to many. Please let me know if there is anything I can do for you. Aiden is such a doll and what a brave little man!
ReplyDeleteI love that he gets his way..cause we know that Aunt Codi wouldn't want it any other way. Love you guys!
ReplyDeleteplease give him a gentle hug for me. I know he feels on the inside when toughed, even if the drugs are better. Those steroids are nasty and I to am glad they have them, but t doesn't make me like them any better. I am so happy he is doing good. I am glad the parents are doing good. I hope the nurses are taking care of th two of you as well as aiden. Funny how kids get their way, sick or well. But then I am a grandmothe and the grand kids really could do nothing wrong. we love you.
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