Bodie could use some serious prayer right now. He has really had a couple of up and down days and the doctors just can't seem to figure out why. His oxygen saturation levels continue to fluctate, requiring various amount of supplemental oxygen. When he's doing well, he is easily satting in the 80's on very minimal oxygen (1/8L (just barely above room air) to 1/4L). But when he's not doing well, he has a hard time maintaining 70-75 on over 1L of oxygen. And there doesn't appear to be much rhyme or reason as to which end of the spectrum he'll fall into at any given time.
Yesterday, he did fine in the morning, on 1/4L of oxygen most of the day. Then, at about 6pm, he started de-satting and they had to increase his oxygen. By the time I got back to the hospital at 10:30 or so, he was all the way up to 2.5L of oxygen and there were 2 nurses at his bedside discussing his situation. At that point, they told me if he needed any more than 2.5L of oxygen, they were moving him back to the CTICU. They also told me they did a x-ray and it showed a small amount of fluid in his lungs - they thought that was what was causing the lower sats, so they stopped his feeds and increased his diuretics. I was so frustrated since the last time his sats dropped, they claimed it was due to the fluid in his lungs - but clearing the fluid didn't really do much to increase his sats.
Well, overnight he improved dramatically, and was easily satting in the mid-80's at 1/8L of oxygen by the morning! The problem was, they did another x-ray and it looked about the same - so they had no explanation for why his sats improved, other than that perhaps his fluid levels were just off. But he satted great all day on 1/8 to 1/4L of oxygen and generally had a great day - so everyone was happy.
Then, tonight at about 5pm, he started de-satting again, so they had to increase his oxygen to 1L. I just got a call from the Nurse practioner, and they're really at a a loss as to why he's doing this. If he continues to do this, she thinks he will go back to the CTICU - not because he is critically ill, but because he needs a higher level of monitoring than he can get on the floor. And if it doesn't start resolving by next week, they may send him to the catheterization lab to look at everything in his heart/lungs to see if that can shed more light.
So, all to say things have gotten incredibly frustrating. Bodie is in the best hands right now (both the doctor's and God's), but no one can figure out what's going on with him so that they can fix it and actually get us out of the hospital. SOOOOOOOOOOO frustrating.
So, tonight, PLEASE PRAY THAT THE DOCTORS FIND THE CAUSE FOR BODIE'S EVER-CHANGING SATURATION LEVELS SO THAT THEY CAN TREAT IT AND GET US CLOSER TO GOING HOME.
On a happier note, Bodie has started smiling in his sleep. It is so sweet to see. He's also doing really well with his oral feeds, taking a little under half of his feeding in the form of nectar/breastmilk mixture and the other half via NG tube. They are still planning on putting in a g-tube and that is tentatively scheduled for Monday, but at least he can do some oral feeds, which is a huge blessing!
Sorry that you are so frusterated with the unknown. I remember feeling some what the same about the diaretics back when Ali was sick. But like you said he's in the best hands! I'm still praying. (((HUGS)))ReplyDelete
We love your family and Bodie! So precious that he is starting to smile. Definitely praying for your specific prayer requests. Definitely praying you get some answers so that he can be treated properly.ReplyDelete
OH HONEY! What a rollarcoaster you are on. I pray that things settle really soon and this mystery comes to light. I pray that Bodie keeps gaining weight and that he keeps on his developmental pathways dispite all these setbacks. Thinking of his sleeping smiles makes my heart happy. TONS OF PRAYERS!ReplyDelete
Dear Amy, You know the verse, pray without ceasing, I've been doing that for you and your family. We love you soooo much. We'll be praying for your requests and for strength for you.ReplyDelete