Discharged on Wednesday

We were discharged on Wednesday. Ian still sounds like a crackling fire, choo choo train when he breathes but I guess that's ok. They all say his lungs sound good, even Dr. Platzker whom we saw on Thursday for a follow-up appt. Orders are to just continue with round-the-clock every 4 hour breathing treatments. We've been taking shifts. Mike does the 11 or 12, I set the alarm to do the 3 or 4 and then he does one before heading to work. It seems to be helping. He's not doing the yelping gasping for breath cough, just the turning red cough ;-) Definitely not as bad as before. We also adjusted his meds a bit. Went up on the Lasix, down on the Potassium. And we've been suctioning more.

One of the wonderful nurses at Children's gave me some great tips. She told me to swaddle him (wrap him like a burrito in a blanket) before suctioning. What a very simple, but brilliant, idea! It really makes him mad but it's so much safer and more effective. And a way for me to more safely do it on my own, which is just about impossible without it. She was terrific! She also worked it out so I could have him near the window, which was were one of the previous posts' pics were taken. When we finally got up to the room he was really fussy. He wanted to get over to the window but we couldn't reach with his monitor and oxygen. Within minutes, she had a portable Pulse-ox and an extension on the O2 tube, as well as an okay from the docs to not have his leads plugged in during the day. Very impressive! He was so much happier once he could stand on the couch next to the window.

The differences in CHLA compared to UCLA were quite interesting. Children's is much less aggressive about their care. I was almost thinking they were too casual in the ER but it was so much better than the welcome IV, blood draw, urine sample and nasal wash we usually received at UCLA.

And if you can believe it, a couple of the doctors even agreed with not giving him antibiotics! Unheard of! I almost couldn't believe it when I had a conversation with one of the attending's and she agreed that unless there is a fever present and/or he's pulling at his ears, seemingly in pain, we could really go without antibiotics. She said ear infections are often viral. And of course viruses can not be treated with antibiotics. I had never had an honest comment like that from any doc in an ER.

Next, we need to figure out if we will take him out of town as we had planned. Most likely not, which is sad. We had a lovely trip planned, taking a train to visit family while Mike attended a conference for the week, then back through the central coast with just the 4 of us for a few days. We are waiting to see how he is on Sunday but if he's anything like he is now, he'll stay home. It's just too much to put him through in his state. Especially when he's supposed to have his MRI on the 3rd. I will be crossing my fingers and my toes that he'll be clear by then to go ahead with it. I just want to know how things are going with his brain growth.