It's increasingly difficult to write new posts, mostly because we've already posted so many varying scenarios of Judah's condition. Today, it is slightly worse than yesterday. Some things are stable and some things are improved, but there has been some difficulty in getting Judah's blood to saturate with oxygen lately.
For those who are true laypeople, the basic rule is this: The ventilator has two settings which are key for Judah right now. One is called PEEP, and the other is the O2 CONC. % (the amount of oxygen mixed into the air that is being pumped into him). We need to lower both settings, yet keep Judah's saturation levels up. Each time one of the settings is lowered, his saturation levels drop. Yesterday his O2 level was down to 45% (good) while his PEEP was 12 (horrible for normal people, but lower than Judah's usual of 15). Last night, his O2 had to be raised to 65% just to get his saturation to a tolerable level.
Right now he is having dialysis. This always seems to lower his heart rate and raise his saturation levels (as it is doing right now). He also seems to be developing an unaccounted for fever, so Infectious Diseases has been called in to take a look at him.
So, things continue to be compicated, tough and scary. Mom is encouraging us to keep our spirits high and hopeful.
posted by The Whites @ 12:58 PM
8 comments
8 Comments:
i am so glad that judah is being monitored so carefully, allowing for problems to be addressed quickly. Behind you guys all the way.
love,
judi
Dear Whites -
While the PEEP and the O2 Conc are extremely important, it seems to me that they can be brought into balance by a variety of tweaking methods.
It is the possible infection which has my attention now. How are all those beautiful white blood cells doing?
Hang in there - it is going to be all right.
Love, Uncle Robby
Hi everyone. I'm sure it's difficult to write posts when things have been up and down, but at least all of us bloggers know how Judah is, and we really appreciate you keeping us up-to-date.
Judah is in the best hands, and they can immediately take care of any problems that arise. I'm sending strong, healing wishes to Judah. Just hang in there.
Love,
Janet
Hi Benji and all,
just staying in touch and letting you know you're in our thoughts and prayers almost constantly.
Your gift of keeping everyone connected to what is happening is so honest and moving, you are a gifted writer. Would rather be reading your published fiction...
May you all be comforted through this journey of pain and uncertainty.Thanks for your sharing....sending you love and support.. and healing to Judah..AMEN Ben G
Dear Whites, I have finally made myself sit down and read all the postings of the last week.I have laughed, and I have cried. Your spirit, humour, and strength are astounding to me. Hopefully the dialysis will only be temporary. My 86 yr old Mother has been on dialysis 3 times a week for the past 12 yrs, (G-d Bless her). Hoping to come and have lunch one day next week. Avremel has asked his Dad if he can go to Shul every morning so that he can doven for Judah. Let me tell you, there is really something special & powerful about a 20 yr old with Down Syndome putting his heart and soul into a prayer. You are all always in my thoughts and prayers.
Sending love, healing energy, sunlight, and warmth to all the Whites
Lynn Mayer
Hi White family. I think we, too, struggle with what to write in this space. I know I do. What can I say that I haven't said before? What words of comfort can I offer? How can I know the right thing to say? The closest measure I have is by proxy: what would I want to hear? What would I want people to say to me? How can we give you what you need, when what we all need is for Judah to be better, and better, and better. I know we all have been trying to imagine how we'd react if we were in your shoes. And the answer is: we'll never know. No matter how we think we'd be in a situation, we're not there. You are. And Judah is. So please know that WHATEVER you post for us to read we read HUNGRILY. We will never tire of your words. We will never stop thinking of Judah ALL THE TIME. We will hang on every letter, every serif, every drop of digital ink you have the energy to give us. We will be patient when you're too tired to write anything. We will take each update for exactly what it is. We will love you CONSTANTLY.
This morning at 5:11 a.m. I was awakened by a massive BOOM. In my foggy sleepy state I couldn't imagine what it was. Now I know: Discovery, returning safely to Earth. A miracle of science.
I am reading the book "Awakenings" which descibes how in the early 70s people with severe Parkinsonism had wondrous results by taking a new drug. I am so dazzled by these stories of people locked inside their bodies for decades suddenly leaping out of their wheelchairs that I say loudly to the book: "NO WAY!" But it's true. A miracle of medicine.
Both of these miracles had their painful moments, their dark times, their joyous pinnacles.
Here's to awakenings, and to big miraculous booms. Please blow Judah an aseptic kiss for me.
P.S. Amy Chen: You're a real yiddishe meydl! Here's another resource if you're running out of words. Oy!
http://www.yiddishdictionaryonline.com/
You must keep your spirits up!
As you know Judah is.
Take care of each other.
Love,
Nina
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