This email will feel real choppy and not well thought through.
It has been a few days since I have written you all, so I thought it should be time to give you all an update.
Since his surgery he has had to be put back on his ventilator. He was originally set back to 40 (that's 40% oxygen, we all breath 21%), but was doing so well that they dropped him down to 35. He took to the 35% horribly and brought it back up to 40. However, over the past 12 hours they have lowered his ventilator down to 30%. The doctor this morning said that he is stable at this point with his ventilator, so they won't be changing anything at this point.
Ethan still remains edemic (i know that's not a real word, but that is the word the doctor used), which they are keeping him that way for the time being. Doc did say he lost a little weight last night, but that is because he pee'd a bunch last night and got rid of some of that edemia. I asked him how long he will stay edemic, and he said that they will continue his blood transfusions to keep the anemia under control, but when they are ready to take him off the ventilator they will give him more red blood cells in his transfusions which will make him extremely edemic. This will cause his blood marrow to grow extremely fast in a short burst which will allow him to start making his own blood.
He is on both Dopamine for his blood pressure, and Fentanyl for his pain. They have reduced his Fentanyl to a level where they are almost ready to take him off it. They are replacing it with Morphine. Fentanyl is extremely addictive, and is ran through his I.V. as a slow drip. The morphine is less addictive, and they give him small doses every 4 hours. They give him his morphine at every hour 9, 5, and 1 on the hour. However, he is not taking to the reduction of his Fentanyl very well, his nurse wants to raise his amounts back up, but needed to consult with the doctor first. We have not heard anything about that yet.
They were able to wean him off his Dopamine last night, which is a good sign considering that means he is becoming more stable with his blood pressure.
They have added some Lasix to the mix to help with his edmea. It's a diuretic which means it will just help him pee off some of the extra fluid.
They have replaced his PICC lines in his bellybutton (2) with one in his foot that gives his I.V. fluid, they can take his blood gasses, give him his pain meds, and pretty much anything else that they need to do to him. He does have one I.V. in his head that they give him his antibiotics through.
Over the past few days, he has had 3 somewhat minor crashes. But not because his is doing badly, he crashes when the nurse changes his diaper, or changes his bed sheets, or weighs him. We are allowed to touch him, but not allowed to stroke him as this causes stimulation which is counter-productive.
The last couple days we've gone in there we have been able to see him cry. He makes a really cute squishy face, but it is hard to see. There are no tears, and there is no sound. In fact, there is even no breath, the ventilator takes his breath away, so his crying is completely silent.
There is one thing that I don't think I have mentioned however. After his surgery, in order to give his bowels a rest, they put in two stoma tubes that an ileostomy bag will be attached. He will need the stoma tubes for anywhere from 4-8 weeks.
He has had his catheter removed considering he was peeing so hard it would come out from around his catheter. There was no reason to keep it in. He does pee really well, which is good because that helps get rid of his edema.
Well, that is all I have for now. Kinda seems like a lot. But I really can't think all that well. Here is the link to photo album again.
Thank you all for your responses, love, wishes, and prayers. We appreciate all of you!
- Kip, Tia, Riley, and Ethan -