Monday evening, March 31st

Already time for another update and I figure I’d better work on it now in my taxi ride back to Nu-Tech because once I get there, it’s dinner and then bed.

It’s a little after 8pm and today suddenly turned into a 12hr day for me. We were waiting for the feeding tube operation as I mentioned earlier today and met with several doctors who were prepping us for it. We were just about ready when Tyson’s fever spiked again to 102. This is now a real concern among the doctors so we’ve postponed the procedure while they try to treat the fever and will try again tomorrow. The trouble now is that because they’ve found bacteria in his blood they’re now certain it’s contaminated his port in his chest. This is the same port he’s had in for two years that I’ve been trained to use and I’ve treated at home that we’ve never had a problem with until we came here. So you can imagine our frustration when they told us this evening that we have no choice but to remove it immediately. Tyson doesn’t want to do any more procedures than absolutely necessary. We want to wait until we are back in Greenwich. But, it has been explained to us that it is mandatory that it be removed at once. On top of that, with that port/catheter being removed, something has to be put in it’s place somewhere on his body. They need an access somewhere to give him his IV meds and so forth. I told the doctor we weren’t really keen on the idea of installing another catheter bc that’s a huge procedure we’d like to have done at home and given the fact that this one was infected, why wouldn’t the next one be?

The doctors understood our concerns and have decided to do a temporary access line in his arm. No sooner did we discuss this option than the vascular surgeon showed up to our door ready to roll. So much for having more dialogue. I sat with Tyson as the doctor did an ultrasound on his arm to find the perfect vein to use. They prepped him, wrapped sheets around him and I sat holding his hand. Not really sure what to say…I could see the frustration, sadness, and anger in Tyson’s eyes and just squeezed his hand. When the doctor was ready, he asked me to leave the room. I went out to the lobby to join Tyson’s mom and dad (Joe, who arrived late last night).

While we waited, Dr. Rakesh Mahajan, the Chief Vascular surgeon came over to introduce himself and explain a little about why it was done so quickly. We understood the “why”, I was interested in the plan to remove the port. He confirmed that it was something that needed to be taken care of immediately…as in tomorrow.

When I got the signal that Tyson was asking for me, I ran back into the room and saw my poor Tyson with a panicked look in his eyes. I know that look. That’s the “I’m about to freak out” look. Let me explain one of his greatest difficulties. It’s pretty tough at times for me or Audrey or Dontay to understand Tyson through his mask. Now imagine how well the sisters (nurses) do with deciphering his needs. So he’s just had an impromptu surgery and now he’s trying to tell the sisters what he needs but they’re mistakenly doing pretty much the exact opposite. Audrey, Joe and I worked for the next hour or so to make him comfortable. He was having trouble breathing probably from his anxiety and panic so we sat him up and let his legs hang off the side of the bed. I watched as tears welled up in his eyes and that killed me. How much more does he need to go through? And tomorrow we have to have the port removed and a feeding tube installed? Ay, ay, ay. I pray for his continued strength and I know you all do, too.

Once he was calmed and breathing was back to normal, Tyson gave me permission to leave for the night 😉
And so you all know, I’ve been in constant contact with Dr. Shroff throughout all of this and she has been in constant contact with the team of doctors at Apollo. She is currently out of the country on business but responds within minutes to my emails and even sent one of the doctors from Nu-tech this evening to speak with us and help us stay calm and understand everything. She told us tonight that “Tyson needs to be brave as he always is” and that once the infection is controlled and the feeding tube is in and begins to make him stronger, he will return to Nu-Tech! I’ll share this with him in the morning. It’ll be a great way to start the day.

I’m exhausted. Tomorrow is another day.

Thank you for your prayers and positive vibes.


2 thoughts on “Monday evening, March 31st

  1. Ann,
    Just a little bit a reassurance from the medical perspective. Removing the port is absolutely the right thing to do since Tyson has bacteria in his bloodstream. Anytime one of our patients has bacteria in the blood the port is removed because if it has been contaminated (which it almost always becomes so) the antibiotics will clear the bloodstream, then the infection would occur again. We will sometimes even take it out before putting in a PICC line (what sounds like he had put in today).
    The infection could have been caused by any number of things and happens all of the time…2 years is actually a pretty good amount of time with one port. I know that doesn’t make it less stressful, but it sounds like the doctors are taking good care of Tyson.
    My thoughts and prayers are with all of you,
    Kristin Hall

  2. Ann, the strength within you and Tyson inspires me for whatever battles may lie in my future. I only wish there was something I could do to ease the pain. Stay strong. You are both my heroes.

    Sending lots of love,

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