soporific sangria
Last night was my night off. I went out for tapas with a girlfriend and was lulled to sleep by sangria. I dare say it also lulled my sense of anxiety, so I was particularly upset to come in to this morning's quagmire, expecting firmer ground to stand on over the weekend. After a relatively quiet night, Isaiah is having frequent emesis, sometimes related to congestion, sometimes not. He's also spiking a fever again and is requiring more oxygen on the ventilator. An x-ray revealed some fluid on one of his lungs, which may be causing some of his breathing issues. Our current plan is to try and continue giving him a small amount of pedialyte each hour, via his g-tube and leave him on the ventilator for the time being. They will give him extra diuretics to try and get rid of some of the fluid on his lung.
Joe and I have started discussing long term plans, which is complicated even though we both have the same goal: home. Joe talks of taking him home with the trach and a g-j tube, which only allows continuous feeds with no option of bolus feeds. I respond that he will be working 60 hours a week and I'll be at home with one child tethered to technology and two boys angry that they can't do what they're used to doing. I talk of my willingness to stay here long enough to get rid of the trach and start feeding him "normally", my anger if we leave otherwise. Joe responds that he's going to have to go back to work either way, hospital or home, and that Isaiah may only get sicker the longer we're here. We are tired and stressed and we love each other in an honest way, one that allows for, must allow for, disagreement, anger, worry.
We miss all of you. Please know that we read your words, and cry and laugh (yes, Amy and I really did play the "dictionary game" in college) and miss you more. Looking forward, not much past tomorrow, but always forward.
posted by Jen @ 12:10 PM
10 Comments:
I was pleased to hear that you had a chance to get away - no doubt a much needed distratction. Sorry to hear that the lungs are not behaving. Praying that you both are at peace with the final decision that now lies before you. We miss you all too.
please know that we are here to love and support you whatever may come or whatever you may need. and we all wish we could wave our magic wand or snap our magic fingers and make it all better. the good news is that today, the sun is shining.
thank you, too, for your honesty and for letting us in on the journey. we are honored to be here with you.
hugs and smooches.
kathy (for joel too)
promise me that one day you'll write a book jen. you are so eloquent and precise. of course you have your many deitific hands full at the moment, but put it on the back burner.
for now, i hope only that an avatar of an answer will emerge in the fleets of questions that surround the port.
love you guys - alicia
Jen, so glad to hear you had a little time away last night. I hope you're both able to do that occasionally, even if for just a short time. Just know that whatever you and Joe decide to do will be the right decision for you both. Here's hoping the weekend brings wellness to Isaiah's lungs and a disappearing act of the fevers.
I miss yall bunches.
Liz
jen,it is times like this, that as an older brother, i wish i could say or do anything to make life easier for you. since i have no profound wisdom, as you are well aware, i will continue to do the things i can, pray, pray, pray, and when i'm done with that i think i may throw one more salvo up. i miss you guys and hope that things will take a turn for the better this weekend. please tell the boys we love them, and send our best wishes. jim
Jen, so good to hear your voice today . Like everyone we pray,hope,and wish for everything to be back to normal. Sitting here thinking of what to say ,My thoughts are drawn to the dinners at your table with the boy's(Joe included), Isaiah wanting his cheese and not just any cheese it has to be shredded yellow cheese. Joey playing with his knights at the table and Joe getting home from work just in time for dinner. Those days seem so long ago but they also seem just like yesterday. As we look forward, I'm seeing those dinners coming back soon. Keep looking forward even if it is only to tomorrow.Soon we are hoping that we hear "tomorrow we will be home". We miss all of you lots.
Mom & Dad A.
Love you. We are here for the steps forward, the standing still, the steps back, the stomping of feet, and a few big steps forward in the not too distant future, that can't come soon enough... you've trained for the marathon, but hopefully a sprint will do.
always, ame&matt
ps. I second Alicia's book request, and I think it someday when you write it, it should be handwritten. Everyone should be able to see handwriting that is that beautiful.
Dear Jen & Joe,
We read that the roller-coaster ride continues - but now you're having to decide whether to stay on now (at the hospital with all the supports i.e. pros, and associated risks i.e.cons) or get off and go some more rounds at home with a different set of pros and cons.
You kids have had so much experience at negotiating and decision-making that we are confident that you will again rise to the occasion and make wise decisions for your family. Of course only you two can know all the realities of both scenarios but please know that all of us are praying for you and will be supportive of whatever you decide is best.
Thanks for letting us know how to pray 'specially for you.
Love, Cecilia
Dear Ones,
We pray for wisdom, we pray for peace, we pray for comfort, we pray for rest. We are here to support you with our presence, whether here, in Chicago, in Holland, or just within reach! We want to hold you when you cry, and listen to you when you feel like venting. We want to help you find smiles, and search with you for ways to hope - and cope! Just be assured of all that - have a soothing glass of wine, share your strength with one another and try to let God do the worrying when you get too tired to do that yourselves!
We love you, love you, love you!GGV
Jen, I am terrible at expressing myself in situations such as this, but please know that I read your blog every day and think about your situation and silently offer my best wishes.
Jack
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