Tuesday, May 29, 2012

Check out - NOT!

Hi everyone,

Well, here it is 8:00 pm on Tuesday night and I am sitting all alone (as in EMPTY) in the "Coordinated Care Waiting Room" on the 11th floor of Mott Children's Hospital while Xander is in the Cath-Lab getting the fluid drained off his heart. Today has been a whirlwind of tests and procedures with hardly a moment of peace. Needless to say, tomorrow is NOT Xander's day for discharge.

Xander's day started off NPO (no food or water) in preparation for the surgical procedure to remove the double lumen Broviac. Well… after the first platelet pack, Xander was not oxygenating very well (≈90%) and when asked to focus and take deeper breaths, he would pull it up to normal (≈97-99%). Because of the I.V. Benadryl that just snows him, he would pass out again and down the O2 concentration would drop. Our morning nurse, Patty, recognized this as a serious issue early on and contacted the docs who then ordered a chest x-ray. Well… the chest x-ray showed more fluid in the lungs compared to the last chest x-ray. The chest x-ray landed Xander in the CT scan queue. While waiting for the CT scan, Xander had an EEG that fortunately showed that his heart was not straining too much. The CT scan showed moderated fluid around the heart called a pericardial effusion. Then, to determine the exact nature of the beast, Cardiology brought up the portable EKG. The EKG confirmed the quantity of fluid and helped determine the treatment plan. Of course each of these tests involved diagnostic equipment, doctors and technicians. Xander's room was super crazy this morning.

Thank heaven Margo and Jasmine stopped in to visit. Jasmine was actually seeing Dr. Robert Hensinger who put me (Dad) back together in 1987! Our visit was interrupted by the Cardiac Anesthesiologist working on Xander's sedation plan. I swear I think that Margo was almost standing up on her chair to cheer me on while I was advocating on Xander's behalf. Margo and Jasmine hung for a while with us and we really enjoyed their company very much. While they were here with us, I was reminded that Adavan is like alcohol to 22 year old's (yes I mean you Matt & Katie) - right out the window his inhibitions went. So, with this in mind, it was a funny moment (Jasmine was smirking anyway) when Xan reached over, grabbed his urinal, turned his back to everyone (thank goodness) then proceeded to pee 350 ml. Of course the audible portion of peeing in the urinal was unmistakable. Oh well, so much for modesty. Xander was really happy to have the first girl from the class of 2022 visit - Xander says, "Thanks Jasmine!"

As the day progressed, the Cardiologists and BMT docs all stopped by to talk and talk (multiple times) and it was decided to drain the fluid (pericardiocentesis) and NOT leave a drain in place due to the likelihood of an infection. Of course, Xander also popped a fever over the 100.5° threshold for culturing all three Broviac lumens individually. This is all in addition to getting three transfusions of platelets plus one more in the O.R. to bring his platelet count over 100 for the cardiac procedure. The docs ended up removing 450 ml of clear hay colored fluid from around Xander's heart. It took 5 mg Versed, 75 µg Fentanyl, 100 mg Propofol, AND 50 mg Ketamine to sedate Xander this time. Maybe next time, I will get a giant Michigan linebacker to just tackle him ;-)

I am very aware and reminded on a regular basis that Emile and I have important roles to play in regards to Xander's treatment and recovery. I also am reminded EVERY DAY how our nursing staff on 7 East are the absolute best nurses EVER. Our nursing staff is totally awesome, engaged and love Xander very much. Today it took the whole village to get the job done! We are in the best place in the whole world - this hospital is giving us the chance to get our son back. Thanks everyone ♥

BTW: We do not have a discharge timeline as of now. Everything depends on the results of the diagnostic tests run on the fluid from around Xander's heart and rather or not the fluid returns quickly. We will post more on Wednesday during the day.



  1. Sounds like Xander is still taking more steps forward than backward. I hope today brings all of you some good news in the form of reassuring test results.

  2. We loved seeing you guys yesterday! Jasmine wants to come back as soon as possible. Get your urinal ready.

    Aaron and Xander you were amazing speaking to the anesthesiologist. You know so much and are such great advocates for what you need, super duper impressive. I'm always standing on my chair cheering for your whole family...sometimes figuratively and sometimes literally!

    Hi Molly! I hope you had a great school Birthday celebration today. Even though your real Birthday is during the summer, it's fun to have a special school day that is all about you and how special and awesome you are!

    Lot's of Love,


  3. Hey guys,

    Just another quick thing. When you make a comment on the blog you have to prove you are not a robot by typing in 2 words, but the words are never real words and they don't make any sense. Well, when I just posted that last comment one of the words to type in was...love! Love! How amazing!

    Love :)


  4. Hang in there! I agree - so much forward progress...I've been thinking of you guys so much this week. It was so wonderful having Molly work the farm this weekend. She's welcome anytime! Xander - be strong - you'll get through this too! (I love the story about the pee, by the way! It reminds me of our house... :))

  5. Coming out of 18 years of advocating - including a home phone call to a cardiologist at 10:30 pm - it is exhausting but so important. My heart has always ached for those that need medical care and don't have these most precious resources. You are doing a great job.