I will be traveling down after work tomorrow to help the kids in whatever way I can. DH will be staying home to work and take care of the animals. Prayers for me traveling and him doing chores....not something he does unless I am gone.
I'm sorry some of these email are so long....I don't know where that girl gets that from.... I will try and keep you updated while I am gone. Thank you so much for keeping Kyle and our family in your thoughts and prayers. Mary
June 6 evening
Hello again everyone.
I didn't mean to leave everyone on a cliff hanger this afternoon, but unfortunately we have no more answers now than we did when I wrote the original email. The preliminary results from the CT were the same as everything else... everything looked normal. The doctors are still waiting on the experts to check the ultrasound and CT, but there was nothing obvious wrong. They took blood cultures when we were in the ER, so they are waiting to see if anything grows on those. So like I said, we are still waiting. Kyle's temperature is really not improving at all. It was over 104 at one point today. Even with Tylenol, it still only dips to 101 briefly. He is not allowed to take Ibuprofen or any other fever medicine because of the chemo. In general, Kyle has had a rough day. He mostly lays half asleep, semi-whimpering watching TV. Then when he gets his dose of pain medicine, he perks up about 45 minutes later for about 45 minutes and will talk and jabber and give us glimpses of the regular Kyle. Then it fades away again. I did get him to eat some actual food today during one of his up times, and the hospital gave us some pediasure to help him get as many calories as possible. Although it was not a full meal, I was still happy to see food in his stomach. He has three main issues, and unfortunately, the doctors do not think the three are related except that his body is weakened and trying to fight all at once.
1. High fever: He has had a constant fever since Saturday around 11:30am. It has peaked over 104 once and cannot be relieved.
2. Nerve pain: One of the chemo drugs is causing pain in his hands/wrists and his legs. We were told about this, however not to the extent he says it hurts. The pain medicine is mostly to combat this.
3. Complaining of lower abdomen pain: Although it is in close proximity to his incision site, the surgical team ruled out anything being wrong from the surgery. However, he has not had a bowel movement since Friday morning. This back up could be causing unnecessary pressure, which is causing abdominal pain. They have started him on something to try and relieve that build up.
After a 15 minute conversation with the doctor, my frustrations were not settled but only confirmed. They do not want to release him until they know what is wrong (which we support) but they also don't want to just randomly treat everything. They would like some direction, and they are kind of hoping Kyle can perk up enough to give them more direction. We don't want them to find something awful, but we are frustrated at seeing our little guy with a fever for so long. His body could just be reacting to all the changes, but that is also hard to swallow because that would mean there is no good answer.
Well I must be getting to sleep. Like I said, I know this is not a great update, but I thought I'd write something.
June 7 early afternoon
There is not much to report but a quick update... Kyle still has a fever although there are some signs it is going down slightly. They are really pressing the bowel movement so they are giving him stool softener and even a laxative. No success yet. With one of those medicines, he did vomit this morning. It is thought to only be related to the medicine since he has been fine after the one incident. We did get him some pain medicine and took a walk in the garden. That seemed to perk his spirits a bit and forced him to walk around.
They did change his antibiotic and he had a pretty bad reaction. He started to grab at his head and itch so hard I thought he was going to draw blood. We called the nurse and she said it was the new drug. So they paused it, gave him Benadryl and restarted the antibiotic to run very slowly. That did help.
He is eating bites of food but just some cereal or pretzels. Although we are happy with anything right now.
There is still no word on a cause for anything. And no talk about going home. The nurse said they are drawing blood to check a few things at 2. So please continue to pray for some definition of what is going on and healing... And pooping. It's strange to request prayer for poop, but it is needed.
Thank you again for all the prayers and support!!! It is so comforting and helpful to have so many people who care.