I'm sad to say we got a call at 4am telling us that the sweet man needed to be put back on the ventilator. Dr. Brooks said she wasn't concerned about it at all, now. She thought he did well for going 15 hours with very good blood gasses. It's hard for mommy and dada since we're so ready for him to get well and get home. He tried so hard, his lungs got tired. She said we'll give it a few days and then try again, if he can't hold his own better next time then she'll be concerned. No pressure Everett.
He was put back on dopamine to bring up his blood pressure that dropped from all he went through yesterday. She said he'll be off of it by the end of the day. He is still on morphine and versed as needed. His cultures are not growing so they don't think he has any new infection so they'll probably take him off of the antibiotic he is on tomorrow since they automatically give it 48 hours. They're taking the line out of his artery today. He is first on the list for another PICC attempt tomorrow. If that doesn't work, then they'll order surgery to do a broviac which goes straight to his heart from near his collar bone it seems. Please no. Either way, both lines he has in now are coming out over the next day or two. It would be awesome if they could get this PICC in tomorrow. Without the arterial line they'll need to prick his heels again. :((( They did today for a specific test where they couldn't use the art line and they have such a hard time getting blood from his heals since they're so tore up. He cries and cries and I can't hear a peep but I know he's screaming and I hold his hand and his head and kiss him and tell him it'll all be okay. I'd give anything to take it all away, I want to switch places with him so bad. I'd give anything.
We have Ashley again today, she loves him.She calls in to check on him when she's not there and asks her nurse friends to watch him and update her. She also said she'll send me pictures of him when I'm not there, yay! Once they get the art line out they'll get his blood pressure from the normal blood pressure machine which he hates since it constantly squeezes his arm or leg, right now it comes straight from the line he has in and is on the screen. Any blood they need will come from his baby feet. Dr. Brooks is considering trying breast milk again tomorrow depending on how the line switching goes. His x-ray looks the same, which isn't great in my opinion, but at least it is not worse. They won't try and extibate him again (they say) for days, maybe give him the weekend. I hope they let him rest enough before they try again. This baby never gets left alone. I don't know how he is supposed to recover from pneumonia when he doesn't get rest. He's constantly being woken, constantly. Babies need so much sleep and a baby this sick needs A LOT more I'd guess, in my "professional" opinion he needs to be left the hell alone. I know they are saving his life but I feel they could cluster his pokes and prods together better so he doesn't have to be messed with all around the clock.
Today, the nurse and I were talking about how great his nurse yesterday was, I love Michelle. She is a mother of two boys, a bit younger than me. She was so sweet all day, talks to him so soft and is so gentle. I'm so glad she was there for his extubation. When I told Ashley how much I liked her she agreed then said, "The sad news is she's done on July 9th". My heart sank, I lost my breath. That means she thinks Everett will be there until then...I gave myself time to swallow and then tried to ask without bawling how long she thought he'd be there. She followed with, "months." My heart sank more. I know things aren't moving quick, I know this poor baby is so sick and I don't want him home until he is well but I've been told 2-3 weeks since the start and I won't let that idea leave me since that's the only way I was getting through, knowing his 2 week birthday is today, I kept telling myself I can do this for one more week, I can, I can, I can. But months?! She said he doesn't have a strong swallowing reflex so she thinks after he is well he is going to take a long time to feed. I told her I had to go pump, I did, it seems I always do, but I had to walk away and I cried, hard. Please not months. Please. I asked Dr. Brooks and she said she couldn't tell me anything. Please not months. I pumped and prayed. God and I have a love, hate relationship since he took my mom from me. He knows it. I think he's fine with it, or at least I tell myself he is. He continues to test me, more than I'd like, so at times I shun him and I may again. As for right now, I'd like to feel the love relationship come back. Come on big guy, throw Everett a bone. There is not one thing, not ONE, that I can think of that has gone smooth and easy for him since he was born. I hope he's getting all his pain and suffering out of the way in his first few weeks of life, then bliss. If that's the case, I can try and accept this, but please not months.
The up sides to today are, I hopefully get to hold him. I've been begging. Also, I hope he's left alone to rest and can steady himself over the next few days. He needs a break, we need a break. I hate roller coasters, literally and figuratively. After the 4am call, I couldn't get back to sleep. I was disappointed, I was also so sad I didn't take a picture of him while he had that damn machine out of him. I don't know how I forgot. I was by his side holding his hand since he was all over yesterday and I don't touch my phone in and then touch him again, But how on Earth did I forget to get that cute face captured without a tube?! His sweet mouth was closed for once and he looked quite peaceful, most of the time. At least I have that image in my head. Hopefully soon I can share a picture of him, tubeless. So, today I should be able to hold him. I'm not going to get my hopes up like last time until he's being placed in my arms.
9pm
I called Mimi to see if she could watch Clara while I went back to hold Everett, of course she made herself available. She had crayons and activities all ready to go for her when I showed up. I don't know where she finds the energy for my little bug but she does. Clara is always excited to be with Mimi! Thank you for taking care of the big sister while mama holds her little man!
Dr. Brooks was bedside, thankfully cozy in a chair, nothing was the matter. I think everyone just likes hanging with Everette. He seems to be a favorite already. His daytime nurse calls some evenings to check on him, she has her nurse friends check in on him. When I came back from pumping two nurses and his respiratory specialist were arguing over who loved him more, I said I won and they agreed. Dr. Brooks said she sat down with a few of her colleagues to make sure she wasn't missing anything with Everette. I appreciate her honesty so much. She said they all agreed with the path she was taking and with all her thoughts about him. They reviewed all his stats and didn't see, or come up with anything new. She said we'll worry about him if his lungs aren't better in two weeks. I'm still keeping hope we might be home then, my hopes may be high, but I need them to be. She smiles a soft smile and says, "I have a good feeling about him." She has the best beside manner possible I think.
His nurse Michelle from yesterday, his nurse today (Ashley), and his respiratory specialist helped get him over to me. I tried my best not to be stressed about stressing him. I know he can read my body language so I kept as calm as I could even though there are wires, cords, tubes and much more all over. There are beeps going off all over, sirens since they're unpulgging things they shouldn't be...but the moment he was in my arms everything else faded into the distance. I honestly can't think of a better feeling than holding your baby, his situation has made it even more priceless. He opened one eye, locked it with mine and then relaxed for the hour and 45 minutes we were snuggled together. His stats were great, we both loved being close. It's been torture looking at him, not being able to hold him, it's so much easier to comfort him in my arms. It's what we both needed for sure. We both needed this today, this morning started rough, hopefully we continue sneaking up this mountain ahead. Slow and steady wins the race...right?
I just spoke with his night nurse, Julie is on with him again. She requested him, and we like her as much as she likes him. There shouldn't be any changes unless he calls some new shots. In the morning he is first on the list for an attempt at the PICC. They usually don't try four times, let's hope it's a success! His oxygen he is receiving is at 30, normal breathing air is 21. He was at 25 today. He didn't even need his versed, the anti anxiety, so being up to 30 isn't a big deal, I think it's great where he is at tonight. I hope he gets some rest tonight. He needs rest.
Yesterday's selfies:
Greatest feeling in a while.
We don't know what the orange is on his head, it's the second time it's happened. There is his orange tube that goes in but nothing comes up when you rub it. We cleaned him up after the picture. Oops.
Two weeks...or one never ending day.
Happy 2 week bday sweet boy. You're so loved.
I did forget to take a picture of Everett when he had his vent out. But I did take a video so Andre took a screen shot for me today! Yay! Here is the handsome man tubeless, can't wait to get him back here! He has bubbles coming out, I eventually wiped him up, sorry buddy.
I need to get some of Clara up here again. She counted to 15 all by herself today, she skipped 9, but that's because 7, 8, 9. Get it? G'night. You can tell I'm tired.
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