Coulby is home! He was discharged from Hopkins yesterday and is happy to be home and reunited with his trains. The discharge orders were to make sure Coulby drinks lots and lots of fluids, and gets as many calories as we can get into him. And of course, he must drink his formula. So far, he has done well drinking his formula, with some resistance, but has been stubborn with eating anything. I do not think it is related to his illness at all--it seems to be driven more by his stubborn streak and need for independence. Coulby wants to be in control and make his own decisions, rather than having someone always telling him what he has to do. Has to eat. Has to drink. Has to get his medications. You get the point. I know this is typical 4-year-old behavior, but I also attribute it to the fact that Coulby has had no control over much in his short life. From the moment of his Citrullinemia diagnosis, most of his decisions have been made for him. Now he gets the chance to control some of that. Frustrating now, but something that will definitely help in his future.
Last night Coulby was reluctant to sleep alone, so he took over my place in my bed and slept with daddy. I slept in the guest bedroom in our basement, but do not plan to make a regular habit of doing so. We just figured that Coulby had a big last two days and needed a little extra TLC upon coming home. He slept through the night (minus the multiple times getting up to go pee), and most importantly, was fever free! I am not sure if I had mentioned earlier that the docs did say that Coulby has an ear infection that might have been contributing to his high fever. He also was/is fighting a virus that has been seen in the hospital and is characteristically accompanied by a fever for 4-5 days in most children affected. Anyone else noticing the potency of the viruses going around this sick season? Nasty bugs that seem to hold on forever! (no, my congestion has not dissipated yet either--it has been over a week now!)
This morning Coulby woke in good spirits with his usual endless supply of energy. I am sure not having a fever has helped in that department. You would never know Coulby just spent time at Hopkins, hooked up to an IV with a temperature alternating between normal and 103! A miracle, my boy! That is all I can say. And while it has not been fun to have Coulby sick with multiple colds and other bugs this winter, I am so amazed at how well he has weathered each one. God is good!
Thank you all for your prayers and continued support through our journey with Citrullinemia. You help us to stay strong when things get tough! Please continue to keep us in your thoughts as we work to get Coulby back on track and eating like a champ again.