Sustained
We took Ira to LICH on Christmas Eve. He immediately tested positive for RSV. When LICH sent the official results of Ira's blood test, the RSV test came back negative. So PICU did their own test. First, negative. Then after a while, positive. Ugh.
Yesterday - the "Where is your smile?" day - was hard because Ira was not responding to any of the medical measures that were taken. His CO2 numbers were way too high. It didn't take long for the room to be filled with doctors and nurses adding meds, turning up oxygen and respirations, etc. Normal is 60 or below for someone like Ira. Ira's numbers were at 90+. At one point a nurse said to a doc, "I can't even see his chest moving." They finally got the CO2 down around 70 and they were happy about that.
Because Ira is sedated and intentionally paralyzed fluids collect in his body. It's common for RSV babies to collect their fluids in their heads. Ira is literally unrecognizable. It's really hard to see him like that.
My sister asked me the other day if we were back where we were in the first week of Ira's life. In other words, "Are we back in the position of not knowing whether Ira is going to live or die?" The answer to that is "no". While RSV is a beast and while it does claim lives, I've seen the fight in my boy and know what he is capable of. And the doctors have not given me any indication that we are to the point of worrying about life or death.
So while Laura and I are extremely saddened that Ira is having to endure this and while it pains us to see him like he is we have not at all lost hope. Once again, thanks for your prayers and thoughts. We are aware that our sustenance comes from those of you caring for us.
Yesterday - the "Where is your smile?" day - was hard because Ira was not responding to any of the medical measures that were taken. His CO2 numbers were way too high. It didn't take long for the room to be filled with doctors and nurses adding meds, turning up oxygen and respirations, etc. Normal is 60 or below for someone like Ira. Ira's numbers were at 90+. At one point a nurse said to a doc, "I can't even see his chest moving." They finally got the CO2 down around 70 and they were happy about that.
Because Ira is sedated and intentionally paralyzed fluids collect in his body. It's common for RSV babies to collect their fluids in their heads. Ira is literally unrecognizable. It's really hard to see him like that.
My sister asked me the other day if we were back where we were in the first week of Ira's life. In other words, "Are we back in the position of not knowing whether Ira is going to live or die?" The answer to that is "no". While RSV is a beast and while it does claim lives, I've seen the fight in my boy and know what he is capable of. And the doctors have not given me any indication that we are to the point of worrying about life or death.
So while Laura and I are extremely saddened that Ira is having to endure this and while it pains us to see him like he is we have not at all lost hope. Once again, thanks for your prayers and thoughts. We are aware that our sustenance comes from those of you caring for us.
posted by jch at
7:30 AM
7 Comments:
I've followed Ira's ups and downs for months, but never posted. Please know there are probably hundreds, if not thousands of people that you will never know about that lift you up in prayer. Praying for strength and peace for Joe and Laura, lots of health, good care, and healthy breathing for Ira, and continued precious sweet spirit for Sophia. Thank you for allowing us to peek inside the reality of what your life is like and the faith struggle that comes with it.
May you have a better today than yesterday. Praying For Ira this morning especially hard. Take care, Rebecca Leggett
Remember,
Today is the yesterday you worried about tomorrow.
Think only of today and this moment in time. It is all any of us have!
You don't know me, but I have been following Ira's condition and progress almost from the beginning. Thank you for sharing your struggles and peace.
Our prayers are with you constantly.
I appreciate so much your honesty through this. I, also, check in on Ira's progress every day and have been praying fervently. Please know that there really are SO MANY who are praying for Joe, Laura, Sophia, and Ira.
Those of us who have never met Ira, nor you or Laura, have invested a huge chunk of our hearts in him. We deeply love this little boy of yours. So, we weep and pray and hope with you.
I agree with Vicki. Never have I invested so much of my heart in someone whom I have never known. I think you are all the strongest people I have ever had the priviledge of "knowing". God's strength with you today and every day.
Praying for Crazy Jesus Peace for all of you, and strength for Ira. May God wave his mighty hand over you all, rest on you, and hold on until His presence is mightily felt by you and Laura. Blessings, blessings, blessings.
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