Monday, June 14, 2010

Monday, June 14

Chemo Round 2, Day 7

I felt pretty down all day today. I envy everyone who is enjoying their summer, doing fun things with their families, taking vacations, etc. I miss waking up in my own bed, or being at home where no one is just walking in on me every fifteen minutes no matter what I'm doing (well OK, maybe since I have kids that's a pipe dream anyway, but at least it's just family walking in on me at home and I'm not in a fishbowl for everyone to see). I miss being able to get a simple cup of coffee for myself whenever I want it, without asking someone else to get it for me. I miss having some time to myself, to be able to read, answer email, do something relaxing, instead of just collapsing from ehxaustion at the end of the day. I miss watching Collin be able to walk around freely and play, instead of being tethered by the tubes that feed him and give him medicine. I miss getting him to sleep and not having someone come in and wake him eight minutes later so that I can just do it all over again when they leave, or not be able to get him back to sleep at all even though he really needs it. I'm angry that his (and Neya's) normal childhoods have been interrupted by this time we will never get back. I miss walking through my house instead of living in this room where the available floor space is not much bigger than my bathroom at home. And I feel guilty complaining, because being here is what has kept Collin alive. The nurses and doctors are wonderful and caring people. And as eager as I am to get home, in a bizzarre way I'm afraid to leave the hospital, away from all the extra help and care and eyes to make sure nothing is wrong. I just wanted to have a good cry today to let out my frustration, and I couldn't even do that in private. I don't want to be analyzed, or told to take a break, leave for a few hours, etc. It wouldn't do me any good anyway, because there's no way I wouldn't be worried and stressed the whole time. I just wanted to have a few minutes to feel what I was feeling, and let it out so I could move on.

I was also nervous about the IVIG infusion today. In the first round of chemo, Collin had a pretty scary reaction to the IVIG when it was given. Many precautions were taken today to prevent the same reaction (pre-medicating him with Tylenol and Benadryl, running it at a much slower rate), but the memory of the last experience had me feeling a bit scared. He didn't have any breathing problems this time, but his blood pressure went up enough that he was given a medication to bring it down. Luckily the infusion is finished, and he seems to be doing OK now. He fell asleep a little after 7:00 pm, and woke up a little after 8:00 pm and was very uncomfortable. I requested a dose of Morphine, and he's back asleep now. I hope he has a restful night, but his blood pressure will be checked hourly, so I'm not holding out too much hope that either one of us will get a lot of quality sleep.

6 comments:

  1. Jenn, You need to let out those feelings as often as you can. You so deserve to feel the way you feel. You are a strong woman and mother and don't forget that. I think of you and Collin often and can't imagine all that your going through. Just know that we as a family pray for all of you each day and I so appreciate this blog to hear how Collin is doing. Stay strong, your fight will help Collin to fight this too!

    ReplyDelete
  2. Kim Harbison says: You have every right to be frustrated, angry and pissed off at the world. All of your lives changed in the blink of an eye. You really have not had the time to deal with all of the emotions that come along with Collin's illness. Feel free to vent any time. Sending you wishes for a time of rest.

    ReplyDelete
  3. I know how frustrated I get just imagining if it were my son so feel free to vent because those that mind don't matter and those that matter don't mind. All of us wish we could fix things for you. I have faith that God is healing Collin and there is a purpose in all this wether we see it yet or not. God's plan for Collin is way bigger than any plan we could ever dream of. I pray that soon you will be home. And never hesistate to call on me....I'll always be here for you.

    ReplyDelete