The only change in Mason's medical stuff today was the addition of "Epo" shots. This is a medication (Epoetin) that stimulates the production of red blood cells. Since Mason came into the hospital on January 3rd, he's had 3 blood transfusions. These have been necessary for multiple reasons, but because of that, his bone marrow hasn't felt the need to kick in and create more. So, with all the blood draws they have done for various reasons, he is getting low again. This time, though, instead of transfusing him, they are giving him the Epo shots to help his own body make his own blood - better in the long run. We should start to see effects of the shots, maybe with increased saturations, in about a week. They will continue to watch his blood counts and if they get too low, they will transfuse him while we're waiting for the Epo to kick in.
Otherwise, the big event for the day was a bath. Yes, Mason got a full, sit in the portable bathtub, bath today. He really seemed to enjoy it and splashed in the water just like he used to. It was fun to see him playing in the tub.
We kept Mason on the same oxygen concentration today despite saturating really well while he was sleeping last night. He continues to be pretty frantic when awake, so doesn't breathe as well and as deeply as he should. So, when he's awake, he continues to saturate in the 60's and 70's while on 69% oxygen. We talked to the doctor a little bit about this today and she seemed to think that Mason has shown us that he can self regulate pretty well. If he feels he doesn't get enough oxygen, he will relax and rest for a bit (he always has), but if he's up and playing and saturating low, he's probably getting what he needs. His body has learned to adapt to the lower oxygen concentrations over the last 2 years and is likely able to function with less than you and me. Yet another reason to be amazed by this little boy!!!
Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 69%
4 comments:
So happy to hear the news of Mason's stability over the past few days. The fact that he can take a real bath and play and laugh is wonderful. He has such a strong spirit and body! Despite his medical fragility, there seems very good reason for optimism now. Prayers for continued miracles continue. Chris
Unbelievable. You should have just named him miracle. I feel ashamed that bathtime at my house is a chore, not something I thank God for. Mason continues to be God's tool for teaching us patience, grace, perseverence, and gratitude for what we have. Still praying...
Miracles are those precious moments that are seared in our memory and irrevocably imprinted in our hearts forever. Thank you for sharing your beautiful moments with Mason amid such an emotionally and spiritually challenging time.
Our Love and Prayers,
Carrie and Krishnan
We believe in Miracles. God is good and he loves us all and he is always there with you.
It looks like we might get some sunshine today - hoping you can get out in it only if it is for a few minutes. Keeping you all in our prayers. With love Linda
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