Continuing adventures in picu

Last night was pretty uneventful. I came home and it was probably the best thing I could have done for Meredith. I was able to spend some time with her before bed and snuggled her to sleep. I missed my angel & worried about how we'd handle being away from her. She was aware of & fine with mommy & daddy being with Sean at the doctor to fix the boo boo in his heart. I'm so proud of her.

She really is an amazing little girl. I have received so much advice from people about how I shouldn't tell her what's going on, how I shouldn't speak to her during the day, go home at night or have her visit Sean for fear that she'll have a meltdown. I'm so happy I didn't listen to them. She slept through the night like an angel.

This morning when I got to the hospital I was greeted by a very pink and very comfy little man. He was just as cute as he could be. I brought dunkin donuts munchkins. I was always told, "be nice to your nurses and they'll be nice to you." So I bought some for Rob and some for the PICU staff. I got the major updates from the night and was pleased as punch to hear that not only was his blood pressure stable, but he was doing really well. They had lowered his ventilator assistance and were starting to wean him off the vent. This was music to my ears.







At 7am our daytime nurse came back. Words cannot express the gratitude I feel toward Eunice for taking care of our son. She is an amazing nurse with a lot of experience. Without her expertise, Sean would not be where he is now. He probably would've gone back to the OR for the chest tube bleeding, would still be intubated and he'd have a medication that would extend his stay in the hospital at least 2-3 extra days. She has helped Sean manage to avoid all that. She has shown us that she really does see the whole picture. I also like that she doesn't sugar coat things for us. She tells it like it is.

She explained to us that Sean's ventilator would have to get down to a 5. What that meant was that the ventilator is taking 5 breaths for Sean per minute. Sean was doing the rest. Once that happened and Sean was awake, he could "possibly" be taken off the vent. At that point Sean was at 12. He also started to have a little temperature. He was given some tylenol and it started to come back down. She also said that based on his breath sounds & blood gas numbers, it seemed like Sean's top lobes in his lungs weren't expanded. So she'd have to do some PT to help them expand. This consisted of patting his upper lobe areas, suctioning his vent tube, etc. She sat him up & started. He looked like a patched up doll out of Nightmare Before Christmas or The Corpse Bride.



I watched that ventilator so closely. I watched as he took his own breaths and then saw the machine's. We decided to go get something to eat. Sean was doing well. His day nurse was settled in. It was a good time to get something to eat. And so we did. We talked about Meredith and about Sean. We laughed and did some people watching. We love people watching. We get the biggest kick out of the silliest things. On our walk back to the hospital there was a black man strutting down Broadway singing along. He looked so happy & smiling. All of a sudden, right out of a bad 70's flick, he stops..... flicks out his pointer finger & says "hhhhheeeeeeyyyyyyy" to someone in a wheelchair. The whole thing made my entire morning.

When we got back upstairs I was pleasantly surprised to see that Eunice had dropped Sean's vent to an 8. Oh my god!! We're getting closer. I was so happy. Trust me when I say that cloud 9 stopped right at our window, picked me up & carried me for quite some time.

And then...... as we were sitting there..... Eunice came in and dropped it down to a 5. Yes you read that right a 5! She did a blood gas screening on him to make sure he was tolerating it well and he was. Hooray!! One step closer. Now we just needed him to wake up. He hadn't had any sedation in quite some time so it shouldn't be long right?



At around 12 Renee & Stew brought Meredith to visit. Everyone was so happy to see Sean, but especially Meredith. She kept squealing "Seeeeaaaannn!" And then she'd repeat that Sean had a boo boo and was at the doctor. It was so sweet and I was so happy I didn't listen to the nay sayers. I was so happy I had her visit. It was good for her to see that we were where we said we were and that Sean was ok. She got to see Sean asleep & happy. And best of all he was sucking in his sleep. And so Meredith would repeat "Sean is sucking." We brought in a toy from the kids play area and a coloring book for Meredith when she got bored and it did the trick.





They stayed for a little while. Sean loves his sister so much that every time she'd speak to him, he'd respond by moving. It was so sweet and we thought for sure he'd wake up for her. He stirred a lot, but not enough to be considered awake.

Renee & Stew got to spend time with Sean and see that he was ok and Meredith got to spend time with Sean and daddy. Then we walked everyone downstairs and they left. Meredith was very upset, but Renee let her speak to her cousin Hannah and all was right with the world again.

When we got back upstairs we sat with Sean and tried so desperately to wake him up. He was just not having any part of it. No matter what we did or how hard we tried, he just would not wake up. He was comfy.

Eunice thought it would be a good idea to ask what the next step would be when he comes off the vent. She was determined to get Sean off the vent. We all knew he didn't need it anymore, but he just wasn't waking up. So no one, including Rob and me, wanted to take the chance that he was still sedated.

Eunice asked the attending what the next step was. Did she want Sean on the CPAP or the cannula? And here's what the dr said. Ready? "He's a downs. So cpap." I was stunned. I was instantly filled with such protective anger. I wanted to scream "He's not "A DOWNS" you rotten bitch!!! He's a kid WITH down syndrome. And why the hell does that automatically mean he needs cpap?!" I didn't, but I so desperately wanted to. Again.... be nice to the picu staff and they'll be good to you. So I just vented to Rob. I couldn't undo all the hard work Eunice was doing to help Sean by being psycho mom.

Eunice came in & said she knew Sean could be off the vent. So she had gotten the drs to agree to disconnect the vent. Leave the tube in; just disconnect it. Yay!! And guess what. There were no horrific alarms. He did all the breathing on his own. It was such a proud moment for me. So the drs all agreed that since Sean had successfully proved he could breath on his own & well, he could be extubated. This has been the one thing that I associated with him progressing. It is the next big milestone.

Rob & I went to get something to eat and when we got back poor Eunice was sitting at her desk and just looked at us. She told us that Sean had a major poopslosion and the entire bed needed to be changed. Then she said that the smell in his room was enough to clear your sinuses. I just about died laughing & told her "Welcome to my life. I have 2 kids' poop diapers to change." Poor Sean. When he poops, he makes sure it counts.

Eunice got the cpap together while she waited for the drs to come extubate him. He looked so cute rockin' his 80's style head bandanna. Rob said he looked like Richard Simmons. Poor kid.

Eunice told us we should leave and she'd let us know when to come back. I can only imagine what the heck they do in there that they don't want us there, but I don't care. Get that thing out of my son!!! And they did.

They got it out of him at 6:15pm and I got to hear him whimper when we went back into the room. I can't say I love that he was so uncomfy that he cried, but hearing his little voice was the sweetest sound I could ever hear. He's one step closer to being moved to his Step Down room. And one step closer to coming home. I just want to wrap my arms around that little guy, snuggle him and kiss him all over!!



After he was settled, I came home to spend some time with Meredith. I gave Sean a kiss and then got my car. It was so nice to just hug Meredith when I got home & tell her how proud I am of her. I told her what amazing big sister she is and then told her that because of her Sean is doing so much better. I explained that I'd be bringing her to school tomorrow & then going back to see Sean. I told her the ema (grandma) would be picking her up.

I'm still wrestling with my guilt about being unable to be in 2 places at once. I know right now Meredith needs me more at night, but I feel so terribly for not being there for Sean 24 hours a day. I know it's better for me to be well rested and all that jazz. And I know since it's easier on Meredith to have me home at night, it's better for me to be here. But that doesn't help.

When I'm at the hospital, I fee so helpless. There is nothing I can do to help him. When I'm home I feel guilty for not being there to help him. I also feel bad that I get to come home & Rob doesn't. I know he'd do anything for his kids, but I know he'd like to shower in his own shower too.

I know it's not for very long and I know we'll all get over it. And yes I know that whatever makes this time easier & go faster is what we should do. But again..... it doesn't make me feel any better. I love my kids and husband more than anything else and I want to make sure that everyone is comfortable and feeling good. Well as good as they can be.

Thanks to everyone for their continued support. We couldn't make it without that support.