As I type this Thaniel is in the hospital. The best I feel my country has when it comes to children. The Toronto Hospital for Sick Kids. This would be a big long post with a big long explanation of how we got here to this point and what’s happening next, if he wasn’t a few nano meters from me sleeping for the first time since we held him down and poked him over and over to draw blood and place an I.V. I’m just going to say this for now and post an update later. Thaniel has petechiae all over his wee body.
Apparently that means his platelets are low and they are testing for all kinds of things now. Including leukaemia. The dreaded L word in the Down syndrome world.
*Update* October 7.2015.
Well we ended up staying the month at Sick Kids. Thaniels results of those first blood tests came back and cleared him of everything except for low platelets (Praise God!). He was worn out and sick. Enterocolitis, RSV, dual ear infections , adenovirus with a very nasty and strong version of pink eye (that he shared with mommy and a couple of the nurses) and something called C-Difficile . The month that followed was a veritable tight-rope. Enterocolitis needs a strong antibiotic to fight it, conversely C-difficile feeds off of antibiotic use (the lack of good bacteria) and both are potentially deadly. I watched the medical staff fight alongside Thaney everyday. He was constantly dehydrated as a result of the diarrhea brought on by the c-difficile, but his wee veins would blow out and render his I.V useless. His veins were limp and difficult to get an I.V because of the dehydration and the Phlebotomy team was called up several times a day to move defunct I.V’s to another sight until all options were exhausted and a Central line was placed. For 24 hours that gave Thaney a leg up until the line moved, coming out of the heart and lying dangerously close to it causing some arrhythmias and concerns about keeping it in. That 24 hours however bought his little body just enough advantage and he seemed to turn a corner. As soon as safely possible Thaniel was taken off of as many of the antibiotics as he could be and the c-difficile was treated. Eventually the irrigations produced more than just putrid green water and Thaniels bowels began to work again and after four weeks of TPN and crossed fingers he ate his first solid meal by mouth and the light appeared at the end of the tunnel.
All in all the month was a blur for me. Exhaustion added to my own immune issues and I struggled with illness and eventually went on powerful antibiotics of my own to ward off what I could. Thaniel and I floated from day to day leaning on the strength of the nursing staff and the prayers of family and friends at home.
I have to say honestly that I broke down more times than I care to think about as my ability to laugh it off and see the positive was drowned out in a sea of question, doubt and helplessness. I wasn’t alone. Nurses cried with me when we had to hold Thaney down for another painful procedure, and one time I was even graced with a beautiful display of compassion and empathy; when an exasperated nurse, upon hearing that one course of treatment had created a brand new issue for Thaniel, put her face in her hands and cried a few of her own tears for him. I owe them all a huge debt of gratitude.
I didn’t come back to the computer to update because quite frankly it was a difficult season and there has been a storm of activity since.
Firstly Thaniel was accepted into a great clinic that specializes in Down Syndrome care… Someone finally listened to my frustration over his health and he is seeing doctors from a plethora of specialties to pinpoint exactly how to help him out. And secondly he hasn’t slept a solid night thru since June, waking three and four times a night and having to be comforted back to sleep. (yes I have tried the ‘cry it out’ method… it’s cruel and unusual when your little one is sick, just sayin) . Mommy is bone weary. Balancing home and family with work and Thaniels issues has left me thin in the ‘extra rope to cling to’ department. Some mornings I am literally sick to my stomach from lack of a solids night sleep, and feel it must be said… having babies is a young chicks gig!
As I type Thaniel is home with pneumonia. It began as a cough he brought home from hospital following surgery September 11th and it hasn’t let up, settling farther and farther into his wee chest. The puffers are back, the humidifier is back on, the trial doses of antibiotics and vitamins are in full swing. His fever is a few days old now and climbing. This is definitely the “down” side of ‘down’s’
But here is my declaration for anyone who cares to hear it.
My God is enough!. YHWH is more than enough! All I and Thaniel and my family have needed HIS hand has and will provide and GREAT is His faithfulness to me! Stay tuned to hear how God turns every trial into good for us, because He was, He is and He will!