Friday Afternoon - A Josiah Update

My Apologies: this entry was supposed to be posted last night but the wireless at Easter Seal House hasn’t been working for a couple of days, preventing me from giving you guys an update. Because I am short on time, I haven’t been able to post the pictures (I’m 2 minutes from leaving to Enderby) but I’ll try to post something on Sunday. Toodles, and thanks for your understanding.

Good evening everyone

Well, I guess it’s been a while again since we’ve posted something. You’ve probably heard pretty much every excuse I have available in my arsenal so just go ahead and pick one (busy, tired, priorities, etc!)

Josiah is doing pretty good. There are a few ups and downs here and there but all in all he’s doing well. His G-tube stoma and incision have healed really well and that red line that was there is gone now so that’s really good (we never really did figure out what was going on there, but oh well). Josiah’s becoming more active everyday and we’re stepping up his ‘exercises’ so he continues to develop well. Josiah is now sitting in a chair and working at keeping his head up! He’s really good at playing with his hands, and we’re getting him to bring his hands together and up to his mouth. We’re also really working on his ‘posture’, helping him to keep his shoulders forward and not having his arms drooping behind his body when he’s getting picked up (and trying to convince him that it’s not in his best interest to arch all the time, but it’s his favourite position so what can we do?!)

Every day is a new day and they often bring a new mini-crisis. Some days his secretions are thick or getting stuck below and his breathing sounds fuzzy or foggy; some days he’s paler than before, or more clammy and hot; other days an infection is flaring up under his chin or he’s sleeping for a ridiculous amount of time; some days he appears to be pain or upset about something, but we can’t figure it out. Kids aren’t easy! Josiah continues to puke a lot (2-3 times a day) which is a problem because he needs to gain weight. No one has figured out why he is puking, but at least he continues to swallow it and not allow it down into his lungs. Last night we had a scary moment when we came in from supper and saw that he had puked over the trach; fortunately, none went down the trach into his lungs, but there was some milky substance inside his hub. Yikes!

Josiah’s current weight is 4680 grams (you’ll have to do the pound conversion yourself) and he’s been here for 16+ weeks. Wow. So crazy. We’ve had a few NIUC families come back and visit who arrived just before or after us and it’s mind-boggling to consider how long we’ve been here. It’s easy to lose track of time, but scary to consider that we’ve been here already for 1/3 of this year.

Our saddest news of the week came when we heard that Josiah will not be discharged until he gets over his ‘panic attacks’ (the nurses and doctors call them ‘dying episodes’, but I find that too morbid). These are the times when Josiah can’t breathe for a moment (the trach is occluded momentarily either by a thick secretion or because the opening is up against his trachea wall) and freaks out accordingly (which any reasonable person would do). The ‘freak out panic attack’ would include a major d-sat, a bradycardia (that he sometimes can’t pull himself out of) and maybe a tactycardia, but those are rare. Josiah went for two days without an episode, but he had one again this morning. We try our best to talk him out of it – and picking him up often helps because he LOVES being held – but sometimes he still goes limp and needs a boost of oxygen to calm down. Unfortunately it’s totally up to Josiah for his discharge and our trach doctor told us that he’s hand infant patients with trachs that took one and two years to get home because they couldn’t stop having panic attacks.

We really don’t want to be here for another year. Please pray that Josiah will learn how to do deal with his panicky moments, to know that the best way to overcome his momentary occlusion is to remain calm and work it through.

Other news: we have purchased Josiah a stroller and a car seat! Josiah went for his first mini ride in the stroller tonight (to the receptionist and back) because we haven’t gotten the official day pass yet. Marie has taken Josiah out of his room a couple times this week, and Marie and Josiah are planning on a ‘coffee date’ tomorrow at Starbucks because Marie should be able to borrow a portable suction machine from hospital and stroll around with Josiah for a while (as long as she remains on hospital property). So awesome! :D

We have also secured Josiah’s larger transport: a 2007 Kia Sedona LX (base model), and it’s a Copper Graphite tone if anyone cares. I’ll put up a picture later. We purchased it here in Vancouver and picked it up today. I’ll be giving it the ultimate test this weekend as I drive it up to Enderby for Paul & Danelle’s wedding. We are very happy with it and I think we’ll be able to handle being mini vans drivers (sigh). J Marie will be flying up to Kelowna Saturday morning and we’ll be driving back to Vancouver after the reception Saturday night. This is the first wedding I’ve officiated, so if you’re praying for Paul & Danelle, pray also for me that I have lots of confidence, get everything done, and do a fine job! J

Thanks to the visitors who have come by: Kari W., Dana & Ivan H., Rob & Adriana D., and Leanne K. (whom I’ve missed twice now – my bad). Sandi G., Ellen F., and Trina U. – if I didn’t acknowledge you earlier in the week (my memory is being used for other things these days!) I will acknowledge you now. Our friends Steve & Kari D. had their baby girl here for a few days and it was good being with them during their moments of uncertainty and worry, but we’re so glad that baby Ruthie has been discharged and is looking great! Yay!

If you could pray for Marie & I as we head out this weekend we would really appreciate it. This is the first time we’ve been away from Josiah together for so long and it’ll be really hard, but we know we have to take the time while Josiah has his 24-hour nurse care. We ask that you pray for our safety, our sanity and calmness, and Josiah’s safety as we are gone. We pray also for good nurses who are attentive, know how to respond to Josiah’s needs and signals, and will Josiah the playtime he needs to develop and have a good day.

Thanks for all the love and being a part of our journey. In God’s peace and provision.

- Andrew, Marie & Josiah