The Feger Family est. 2012: Eve of June 5 into June 6

To sum things up. Last night, late, he went downhill. Plans in place didn't happen. He was chemically paralyzed again. His right lung at the top collapsed. The new doctor today feels things were moving too fast which I agree, he doesn't seem overly concerned about the lung collapse, he says he'll fix it?! He doesn't think pneumonia is the issue, he thinks he has premature lungs which is a common trait for down syndrome babies I think I've heard along the way. He thinks our sweet little man needs more time to get his lungs in order and wants to leave the high frequency breathing machine in place until Monday/Tuesday. I agree with him. I think everything going on was a bit too fast for our little man. As much as we want him home with us, we need him to be able to heal well first, no need to push him too fast, the little guy has been through enough already!!!

My nonsense notes to keep my mind straight:

Last night at 9:30 things were great. They were attempting the PICC in his left arm and the nurse said it was going well. They were going to switch him to the conventional machine as well, which Dr. Brooks said earlier wasn't a good idea since he had so much going on that day. I guess her orders changed. He is off the dopamine, he was given extra fentanyl to keep him calm. He opened his eyes and moved his fingers on his left hand when she did hands on. His nitric was at 2 and oxygen 32.

We called each other at 11. It wasn't good news. The PICC didn't work, (wouldn't thread) he wasn't able to switch to the conventional, he started to stress, His CO2 went up to 70s when it should be in the 45-55 range which means his blood gas check wasn't good, so they put him back on the high frequency machine and chemically paralyzed him again. Not the news parents want right before bed, but of course we want to know. He did so good all day, I feel like the rushed him. I'm not sure who gave the orders to change the machine since Dr. Brooks told me they were waiting until the 6th. She said he was in a "chronic state". I wish I would have asked why they didn't give him fentanyl which is for calming instead of chemically paralyzing him again, I guess his state must have been very severe.

This morning we went in, very nervous. The RN Melissa was on, she is great, so sweet, soft and comforting. Dr. Winters is new to us today. His chest x-ray wasn't as good. His top right lung collapsed, I feel that must have been due to complications last night. He is off the nitric oxide gas for good which takes an entire machine from his bedside away! Yay! They're already weaning the "Vec" vecuronium which stops his muscles from moving (chemically paralyzing him). He has hydrocotozone for his blood pressure. He is at a 2 with the fentanyl which is like a morphine which he was at a 1 last I recall. I think they're going to wean him off of that and use versed which I guess is more of an anti-anxiety drug. When we got there his oxygen was at 38. I noticed his range for oxygen on his monitor was set at 92 and should be at 95, the nurse fixed it for me. The vecuronium was being shut off at 10 so they said to expect his oxygen to go up. As it did. It was at 50 when we left. Dr. Winters said he likes the high frequency machine since it is gentle and will agitate the lungs less. He is worried about his alveoli which need more time to open and heal. I asked if his pulmonary hypertension could be coming back and he said they'd watch for it next week and do another echo. He said the only reason to do another echo was if his gas reads have issues. His UVC which is the line into his belly button is 7 days old. I remember being told they only want to leave them in for 6 for risk of infection. I'm assuming (but need to ask) if they're leaving it in longer since the PICC was unsuccessful?!

**Note to self - have an echo around 6 months old to make sure his heart is all good.

1pm - Best blood gas in a while :) he was hiccuping or breathing over his vent (in a good way). Oxygen at 34, and a small poop! Sorry Everett, that's what mommy's do. :) Glad your system is working!!

Reading our new book from the Saccio family. We're both enjoying a new read!

4:30 - 6 - Aunt Kristin and I went to visit you tonight. Dada stayed at home with your big sis. We read to you, talked to you, talked while you "listened", you opened your eyes, moved all about little by little. It's so nice to see your eyes, you're not completely alert but they open and close. I'm really going to have a hard time coming and going when you're awake again. You're doing so well. I think things moved a bit too fast for you, you take your time sweet man, we'll ready when you are!

8:15 - Trudy is your night nurse tonight. Something I learned today that I wish I had known all along is I can request your nurses. Ashley will be your primary and I need to ask her about a good night nurse. Tess has been a struggle. Everett's gas was good when I called, they're checking again at 11. Your oxygen is at 36 and no changes are being made tonight, or so they say. They better let my baby rest!!

Happy Birthday Uncle Steven (yesterday)

Clara so happy on Dada's lap watching Dora before nap time. I love when she's still awake when we get home from the hospital!

Aunt Kristin reading to you, keeping you occupied while the nurse does your blood gas draw. Everett you're so brave already, you don't know how much I'm already looking up to you. You're teaching mommy to speak up since your voice isn't always heard right now, this is something I've wanted to be better at my entire life. You're teaching me already!

A HUGE thank you to my sister Kristin for coming down, yet again, to help us out. We're not letting her go for long. I don't know what we would have done this week without you. Thank you doesn't cover it...we love you.