Friday, 6/10
It hurts me so much to do this because I know how much you cheer for our great days and likewise I know you hurt right along with us on our bad days...unfortunately our little hero had a bad night. Before going into the details let me first tell you he is now stable. We got the dreaded phone call at home at 4:26 this morning that Dinky "coded". This time seems to be worse than the others because they actually had to do CPR, or chest compressions. They did this for under 2 minutes which, while concerning, is not considered a "dangerous" amount of time. Unfortunately they had to reintubate him and he is back on the ventilator. While we have relished this past week it makes this even harder because he has now experienced a week without that tube. He has been a baby for the first time. You can truly just see the confusion in his eyes. It is heartbreaking.
Unfortunately our surgeon is out of town so we are not able to get his input on what potentially happened. But based on all of the information we have gathered from our neonatology attending, this is not an automatic sign that his aortopexy did not work. We will not know for sure until this Tuesday when they will repeat the bronchoscopy. When they reintubated him they did see formula in the back of his throat so they think he might have aspirated some into his lungs. I have mentioned the past few days that we were concerned about reflux, well it seems that he might have started to have some and then choked on it and "clamped down". When I hear "clamped down" it makes me think that his airway is not repaired but the doctor reassured me that even a baby without the tracheomalacia (floppy airway) can clamp down under the right stimulus. So...........basically everything is up in the air. We will just have to wait out the weekend and see what happens on Tuesday.
I know this is not just our baby, that we share him with you. There are times that this truly seems overwhelming. This is one of those times. But because we can share this with you, and because you unfortunately carry some of this load, we are able to gather the strength to get through days like today. Thank you.
posted by Jen @ 1:40 PM
4 Comments:
Never in my life have I observed the strength, wisdom and courage that you two have shown, nor the fortitude and determination that "our" little Eddie has continued to show.
We are so sorry you had such a low follow such a high. Those hurt the worst.
I am glad that you recognize the number of shared family out here who are pulling for all of you... and there are tons that you don't even know in each of our extended relationships. Feel the channeled love and prayers and somehow find some solice in them, and some peace and rest this weekend.
You all will prevail, and we love you so.
Thank you for sharing yourselves with us. You are right. We hurt with you--and for you and for ourselves--when things don't go well. And we cheer for and with you on Dinky's great days--and that's what we'll do again real soon. I know that to be true.
You are truly amazing. As I read this posting, I see how you can zero in on the "bad stuff," but you are able to see the positives as well, like the relatively short period of time required for the CPR. I am grateful for you that you have that balanced way of assessing the situation. You are a woman of courage and grace, and I salute you, my dear niece and friend. lots and lots of love...
dobie
Jen and Martin, Matthew and I are here from now until the end of time, to walk with you in your journey, and do whatever we can to buoy you up. We both love all three of you with all our hearts.
Shan
My heart goes out to you and Martin, I know how disappointing and frustrating this is for you especially after the joys of the past week. Continue to have faith that your little man is a warrior, and remember that this is only a temporary setback. We are all here for you, and we are surrounding you all with our love and prayers.
Always, Sue
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