4th Procedure Down
Yesterday, Kai had a LP, Lumbar Puncture, a port placed into this tiny little chest and hours of MRIs to look at a blood clot in his Cerebral Venous Sinus Thrombosis, which has been there for some time but can not be treated with blood thinners because of his brain surgery.
He left the room a little before 1pm and got back around 7:30pm. These days are long and hard. Thank you to everyone who sent messages of prayers and love our way. Thank you to the stranger who let me cuddle his dog, Jet, for as long as I liked. It helped!
Our baby has now had 3 surgeries on his brain, has 2 implants, one in this head and one in his chest and is on a long list of medicines in an effort to promote healing.
He is uncomfortable, as you can imagine but is such a trooper and just keeps looking up at us with those big eyes knowing we have him. Knowing we have become experts in his care. Knowing we love him endlessly.
We are hopeful we get a good read from the MRI today and are able to start thinking about going home for a short time to bask in a sense of family normalcy before we start treatment, which will start quickly. Like maybe in a week.
Cruz will have a ton of questions, I’m sure. There is a department of the hospital called Child Life that provides toys, books, mobiles, etc. to help kiddos feel more at home in their beds and they made a beautiful book for Cruz. It’s called Kai’s Journey and it tells Kai’s story thus far in a very 4 year old way. This has already helped us have a conversation about why Kai has been away and why we have been away from him. What will be hard are the large incisions and scares on Kai’s head and body. Half of his head is missing hair. These are things Cruz will notice and will question differently, I think.
We get the results of the LP later in the week. This will tell us how bad the already unthinkably bad is. This will tell us if there are cancer cells in his spine. From a doctors prospective, this will “change” his odds from already terrible to down right unspeakable. As I type this, I break.
We will hold onto hope and take it one hour at a time, as we have been doing all along. Holding each other up. Staying as positive as possible. Laughing when we can. Thankfully, Chasen is very funny (don’t tell him I said that).
Kai has been giving us some smiles and those sustain us more than he knows. I hope our laughter here and there helps lifts his spirits also.
It’s Saturday, day 17 in the hospital. We plan to see Cruz today at a local park. This will fill us up.
I also plan to try to get Kai up and out of bed today, onto another surface nearby where he can stretch a little.
Hug your loves tight. Very tight. xo