Sunday, August 14, 2011


Friday 8/5 - We close on our home in NY

Saturday 8/5 - While cleaning the house in order to move in the next day, Tomas gets grumpy, spikes a temp, and has trouble moving air well. Call 911 and are brought to local ER.

Saturday evening - Unable to find an easy solution to his issues we are transported down to New York Presbyterian. 2 doses of morphine need to control his pain. IV antibiotics started.

Saturday to Sunday 8/6 - In ER at NYP testing everything imaginable, morphine as needed, bowel surgery likely. Rest of family moves out of hotel into house.

Sunday evening - Moved up to room under GI care. Round the clock pain meds and antibiotics, antifungals added.

Monday 8/7 - perking up a bit, sitting up and watching VeggieTales. Line infection comes back positive for bacteria, putting bowel surgery on back burner as it is not the source of Tomas' troubles. Mike and girls come to visit.

Tuesday 8/9 - Line infection not clearing but under control, possibility of surgery to remove port.

Wednesday 8/10 - Moving truck unloads at home. Line infection now showing yeast as well, port has to be removed. Breakthrough fevers and pain, sliding downhill fast.

Thursday 8/11 - Unresponsive and lethargic all day. White blood cell counts and platelets are very low. Surgery to remove port.

Friday 8/12 - Worsening of condition, everyone worried, tests ordered to look for hidden yeast in the body. Heart and kidneys are clear but the eye doctor found swelling of the fluid around the brain, putting pressure on his occular nerve. An emergency CT scan of the brain is orderd. No masses found. He is very, very sick.

Saturday 8/13 - My anniversary. Day surgery ordered open, OR nurses called in from home, and the lumbar puncture is done. He is still so tuned out to the world. Initial fluid tests show no meningitis but spinal fluid pressure is too high.

Saturday night - A new pain med is ordered that is also a strong anti-inflammitory and Tomas perks up. He sits up in his crib, sings along to Veggietales and gives me little smiles. And then he sleeps, almost all night, only waking twice. Such a blessing.

Sunday 8/14 - My husband is coming down for the day and I will go see my house for the first time since we have moved in.

Tomas has 4 issues going on:
1. The bacterial and fungal infections in his blood - they are being treated with IV antibiotics and antifungals. The bacterial infection is cleared and he has been moved to maintenence antibiotics on that, yeast is still growing, but slower than before so we are headed in the right direction. He will need this IV therapy for weeks, but it can be continued at home.
2. GI issues - We have intermittently tried to feed into his J but so far no luck, even at just 7 mls/h (a little more than a teaspoon an hour). There is also the abnormal section of bowel and he will need a new central line placed before we can go home.
3. Blood counts - Hematology hasn't weighed in yet, but most likely it is suppression in the bone marrow due to being so ill, and his counts should climb once he starts feeling better.
4. Due to the increased pressure in his skull and the increased pressure in his spinal cord fluid Neuro is being brought in. So far all we know is there are no blatant masses and meningitis is unlikely (there is still a chance the fluid could grow something).

He is on a ton of meds. Besides his regular ones, all the infection therapy, he is also getting constant anti-nausea and antiinflammitory meds. He has two IVs (one in each hand), and so far has only blown one (for a total of 3 sticks). That is great for him.
The best guess anyone can give is he will be here for another week, or more depending on what neuro finds and if the spinal fluid growths anything.
As always, the community of people surrounding us has lifted and cared for my family. Family, friends, and strangers contribute a lot or a little to make something beautiful happen. It is one of the gifts that Tomas brings, that any sick little one brings. The number of kindnesses that would go undone without these least of us among us would make for a much darker world. Thank you.


  1. Oh Dorothy - So glad you get to take a break for home. And hubby and Tomas will have some much needed time together. I am glad he perked up, you deserve a glimmer of his personality. Hugs from AZ. - Adina

  2. I am sitting here in tears. My heart breaks for what your little guy is going through (and you too).
    Praying for you and your family. At least you're out of the hotel :)

  3. I will be praying for you all and your little boy. LOts of hugs being sent your way...

  4. Hi
    My name is Jenna and i came across your site. Thomas is a miracle, precious gift and special earthly angel. He is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ and an inspirational hero. Thomas and your family will be in my thoughts and prayers. I was born with a rare life threatening disease, developmental delays and 12 diagnosis. I love3 it when people sign my guestbook.