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Wednesday update

After all the tests Kai went through the past few days we all thought he’d get a break today.

But the tests continued.

Nothing has really shown up on his EEG or EKG and they are still monitoring both. His heart rate still has periods of begin irregular but they are a little less concerned about it now that the EKG looked okay. His blood pressure remains fairly unstable and he is back up to 10 of dopamine.

Today he was visited by PT. She did some stretching with him which really helped his hip movement and she also decided to get him some soft boots him some boots to wear to help keep his legs and feet from getting to tight.

Next he had a quick eye exam. They were checking his eyes for evidence of yeast and thankfully they said his eyes look clear.

Right after that the ultrasound tech came to do a study of his abdomen. I wasn’t sure what they were looking for exactly but they had been talking about it a few days. This morning they said they don’t want him eating until the test is done and everything looked ok. Since today is his third day with no food I was really pushing for this test and luckily they came right after noon. The test was longer than I was expecting, looking at his stomach, liver, kidneys, spleen, bowel, gallbladder, and probably a few other things that I wasn’t able to figure out from the codes he was typing on the screen.
Holding Kai while he got the ultrasound brought me right back to the day of his diagnosis. I was having flash backs of being in that ultrasound room at umass holding him trying to figure out what the hell I was looking at on the screen. Ultrasounds are kind of tuff to do so I did my best not to bother the guy today, but my mind was racing with a million questions the entire time. what is that? Why does he seem uncomfortable when you touch that side? Why is the screen sometimes red and blue? Does the liver always look like that? Is there something in there? Is it tumor??? I refrained from asking ALL of these questions.
Once he finished he told me he would call down to make sure they got everything they needed, and when they asked for a repeat of his liver and spleen I knew something was wrong. Of course the tech redid the scan and went on his way, leaving me to wait and wonder who would be coming to tell me the bad news…whatever it was.
Thankfully we had a visit from Kai’s NP and phycologist form the Jimmy Fund so I was able to talk to them about everything that is going on and they made sure we got some results. I LOVE our team!!
Shortly after they left our neuro-onc docs came down to talk about the results. I’m sure this is not their area of expertise but they explained everything very well and had good answers to all of our question. Can I say again I LOVE OUR TEAM!!
So the ultrasound found what they think is yeast seeding in his liver and spleen. Obviously this is not good and puts this infection on a whole new level of concern and treatment. Tomorrow they will be consulting with infectious disease and eventually he will get an MRI of his abdomen to get a better look. So far the treatment is the same, but these findings do give us some insight on why his blood pressure has remained so unstable and why his heart rate has been dropping so low (apparently an infection like this can do that).

I think since we have been here in the ICU I have not really accepted the severity of the situation, he just hasn’t looked that sick…
but during that ultrasound I had that feeling that I had when he was diagnosed. That feeling that this is going to change everything. That something bigger than anything i have ever thought of is wrong. He still doesn’t look that sick to me, but he’s also clearly not doing well. Today he was in a bit more pain. I think part of it is the EEG electrodes stuck to his head. Part of it is that he hasn’t eaten in three days.
and I guess a big part of it is that he has a septic bacterial and fungal infection…
Hoping for a calm day tomorrow.

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8 thoughts on “Wednesday update

  1. Saying “hang in there” sounds like a stupid thing to say but it is all I can say really.
    The emotions the three of you have gone through in such a short time is probably what many see in a life time. So I pray. I pray deeply and loudly and with conviction. I still strongly believe God has a plan. I pray for your answers.

    Jen

  2. I don’t know how to begin to say how sorry we feel for your family. We can’t imagine the grief you’re experiencing, and though we never met Kai, we hope and pray hes smiling, and laughing, and loving the short time he spent with his wonderful parents. God bless you. If there’s anything we can do, please consider it done. May God, and family, and friends be your rock during this horrifIc time. You’re all in our thoughts and prayers. Love, the Duggans.

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