Ethan's foot is still swollen. The swelling in his foot has come down from 15cm to 14.25cm and we are grateful for that. With that being said the swelling has spread into his knee and upper thigh.
We are beyond frustrated. I'm not the type to be easily angered or to yell at anyone. I'm usually a pretty patient person. In the last three days I've lost my patience with two nurses, one fellow, a social worker and a doctor. At this point I'm pretty much convinced that everyone here thinks I'm crazy. Perhaps they're correct. When it comes to the health of my children I think I know what's best and I'm entitled to have a say in their care. Because Ethan had been throwing up so much they wanted to stop feeding him by his mouth and only by an ng tube (tube that goes through his nose directly into his stomach). One of the doctors felt that he was throwing up so much because he had been aspirating his feeds into his lungs and then throwing it all up. I knew this couldn't be the case because he would eat just fine then sometimes hours later begin to cough and throw up. When the nurse told me last Thursday that I couldn't feed him by mouth till he had a swallow study done I was livid. To make a long story short I basically had to tell five different people that I was going to breast feed and that was that. I am his mother and I know what's best.
Guess what?! Who was right (yet again)? Me. He hasn't thrown up for me since last Friday which even on Friday it was only once. The doctors are still standing by their story that they want a swallow study done, which probably won't happen till tomorrow (6 days after it was originally ordered). They have conceded to pull out the nose tube today and they let me feed him solids. Win for Ethan!
Now back to the foot/leg. Ethan literally has a range of doctors in to see him every day. He has had auto immune doctors, infectious disease, renal, orthopedic, dermatologist, plastic surgeon, and general physicians look at him. At first the diagnosis was cellulitis but after seven days of antibiotics their was no improvement. Then it was thought compartment syndrome but blood flow was still good. Then just inflammation with no infection. Then paraffinoma, then perhaps lymphedema, then.... I don't know. There has been no real diagnosis and now the course of action is merely to sit, wait and observe.
Today is day 27 post op. I have lost my patience. I miss my "normal" life and want nothing more than to take a healthy baby home. I am hopeful that this sit and wait game doesn't last too much longer.
It's so frustrating that after Ethan is able to recover from such a massive surgery that an infection from an iv due to negligence is what's keeping him here.
Please pray for patience for Mike and I, healing for Ethan, and clarity for the doctors.
XOXO,
Renee
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