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.

Thursday, August 11, 2011

I'm not an inspiration, I'm a mom!

It has been a rough week, a really, really rough week. Way to many high stress things going on at the same time, and there is not an early end in sight. Tomas is not well, and this line needs to come out ASAP so he can get better.
But something bigger is on my mind this morning. So many of you have said such lovely things to me ABOUT me.
How do you do it? I could never survive. You're amazing. You're such an inspiration.
Well listen up - STOP IT! I am nothing more than you, nothing better than you. I am exactly what you would be if you were here.

Do my words inspire you? Thank you, but they are not mine. They are pulled from the collective body of knowledge of men, from the great conversations that have taken place through history. Great books, great stories, great speeches all jumbled together in my brain; words rolling and bumping around waiting to be pulled at the appropriate time.
Does my strength inspire you? Hah, it's SO not mine. It is pulled from the Most Holy Trinity, the vastness of space and the awesomness of creation. It is a limitless supply and I go back for more many, many, many times.
Does my faith inspire you? This one is harder, because it was a gift given at a horrible price. Formed from watching people I care about trudge through misery. Those who had faith made it through to share laughter and radiate joy despite the pain. Those who did not hold tight carry with them a great pain from which they find no relief. Early on I had to choose which path I would want to look back upon at the end of my days.

To any of  you who think you could not do this, that you would collapse in a corner, Just ask yourself one question. Are you a mother?
The question isn't - do you have a child? It is - are you a mother? Every time your child frustrates you, or angers you, or causes you pain, do you choose to walk towards the problem rather than away? Do you make mistakes and get things wrong, but then go back and apologize? Then you would make it through a trial like this as well. You would rise and rally beyond anything you ever thought yourself capable of, because your child needed you to.
Because it is not about how high the bar is set, it is about whether or not you choose to jump it.

Monday, August 8, 2011

This little piggie

Tomas is admitted to the hospital again, but for something beyond anything he has ever dealt with before. Intense attacks of abdominal pain. After 2 ambulance rides, 2 ERs, and 30 hours he was finally moved up to a room and allowed to rest.
His toes are still this morning. He is sleeping and his toes are as still and peaceful as the rest of him. I prayed for quiet toes many times over the last 2 days. Just recalling the vision of him in pain makes my throat shut, my heart race, and my breaths come with effort. Watching was unbearable. It happened 3 times, each one worse than the last, and longer than the last, requiring more morphine than the last. He would roll to his side and bend his body like a tight "V", rigid and trembling with pain. No crying, just a grunting moan, his hands clasped tightly together and his eyes shut. His eyes were not shut tight which I find comfort in. I pray it means he wasn't there, that he escaped, that while his body raged his soul was safe in the extracorporeal world of The One who loves him more.
While I laid my head next to his back and rubbed his tremoring body and waited for the morphine to work I  found myself staring intently at his toes. His feet would shake and his toes would spasm independently, his whole body was in pain, and I realized that Our Lady must have seen Jesus' toes like this too. That she watched his toes spasm, and I couldn't decide what was the greater burden; the dying for the sins of the world, or the watching of your son's toes dying for the sins of the world. To not turn away, not collapse, but to watch and smile gently when your child's eyes met yours in pain; to have that vision burned in front of your own eyes forever is a burden most heavy and enigmatic. Somehow, this great weight strengthens me. It is so heavy there is no room for the petty things, it is so rough it scrapes the meanness and harshness away. It is The Burden of Perspective and it is what the Lord meant. Only through Him can the yoke be tightened and still feel easy, and only through Him can the burden be loaded and still feel light.
Today doctors will round, and tests will be run, and plans will be made. Tomas is on complete gut rest so with any luck the only thing his toes will be doing are eating roast beef and going to market.