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Thursday, October 7, 2010

We're home!!

Can you believe that just 4 days after surgery, Sean is home? Well believe it. I will post tomorrow with all the details and some pictures. But our baby boy is home and doing well.

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Tuesday, October 5, 2010

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.

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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.

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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?

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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.

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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!!

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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.

Monday, October 4, 2010

Our biggest adventure yet..... Surgery

The day started off quite uneventfully. We woke Sean up at 1:45am to give him a bottle. It would be the last meal he had before surgery so we wanted to make it count. We managed to get him to take 5 oz and I was thrilled. We woke him again at 4am to attempt pedialyte, but he wasn't having any part of that.

Renee wished us well and tried to contain her tears, but it was too late. We kissed her goodbye & headed to the car. We got Sean settled into his seat & he drifted back off to dreamland. He stayed peacefully asleep the whole ride to the hospital.

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When we got to the 4th floor (surgical floor), we checked in & waited to be examined. A little girl about Meredith's age came in & I lost it. I had to walk away because I couldn't imagine Meredith being sick or injured enough to need surgery. I then started to think about what Sean was about to go through.

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We called Renee to see how Meredith was doing & I wanted to talk to her. I wanted her to know we hadn't just disappeared and that we loved her. Even though she didn't want to speak this time, she didn't want to give up the phone either. It was sweet & heart wrenching at the same time. But I needed to hear her voice and I hope she felt better (in the end) hearing mine. I hope it helped to let her know that we were doing what we said we were & would be home soon.

We were called in & we got Sean undressed. To say I was disappointed that he didn't get little baby scrubs is an understatement. He did get a side snap shirt with green trim. I guess I'll take it, especially since he's cute.

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We met with the anesthesiologist & her fellow and then with the nurse. The nurse was a little to upbeat for my taste, but I don't have to be friends with her. I just needed her to be good and take care of my baby.

Sean had fussed himself back to sleep and I was grateful for a peacefully sleeping baby. Especially since I was an absolute mess.

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Handing Sean over to the nurse was probably the hardest thing I've ever had to do. My heart broke into a million tiny little pieces. Nothing could ever have prepared me for the feeling of helplessness I'd feel when I handed him over. Nothing will ever compare with the despair I felt when I walked away. I know having the surgery was a necessity for him and I'd hand him over a 1000 times to make sure he was well and could grow up.

After we met with the surgeon..... Hey! I needed to make sure he was here....... We went up to the 9th floor to be shown our picu room and be able to put our things down. My grandma met us at the hospital. We met with the charge nurse and got a tour of our new digs for the next few days.

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We were informed that surgery was going well as of 9:40am. He was still hooked up to the heart lung machine. We left my cell number and went to breakfast. I really wasn't hungry at all. I just wanted some coffee. The charge nurse said that she would call if there were any new updates. As we finished up breakfast, we got a call from Sean's personal nurse, Eunice. She called to tell us that Sean was in the process of being sewn up and had done really well. She also let us know that the surgeon would be up shortly to fill us in on the details. So we headed back and waited. It seemed like an eternity to wait for Dr. Bacha, but........ in reality it was only like 30 minutes or so.

He came up and filled us in. Sean had done really well and Dr. Bacha didn't encounter any surprises. YAY!!!

When Sean was ready, we were called in to get a look at him. I was so unprepared for what he'd look like. I knew what he'd look like, but I was so unprepared. I immediately broke down. My little baby looked so sweet & innocent and yet he had all these tubes coming out of him. Why did he deserve all of this? Why did my sweet little baby deserve to be so battered?

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My grandparents stayed for a little while. We got to ask a bunch of questions, but seriously....... I don't think I heard any of the answers. All I really heard was that he was ok. Despite what he looked like he was ok.

So far he has needed some blood products to help him clot and to help his blood pressure. We have gotten to touch him and comfort him. He responds to our voices by raising his heart rate a little. Which is good. a) it means he does love us and b) it means he can hear.

We have had an amazing outpouring of support for our little man. We know that Sean would not have done as well as he has without the thoughts & prayers coming his way. The amount of loving energy surrounding us from all corners of the globe is overwhelming. We even received a gift basket & mickey mouse from a wonderful woman I met through a wonderful & supportive message board. To say that it was such an amazing surprise to find out how truly supportive people are, is an understatement. Amber, Matt & Hattie..... We thank you. (Picture to come once I upload it)

So as it stands Sean is pink. He numbers are stable. His blood pressure is a little low, but not out of normal range and our nurse is amazing. She came in just to admit Sean and be his nurse on her scheduled day off. She keeps us informed about everything and doesn't sugar coat it.

We have decided that I will go home at night to be with Meredith. I'll be leaving here around 6:30pm tonight so I can make it home in time to put her to bed.

I am so torn about whether to stay here or go home. In the end Meredith needs me more than Sean for this particular adventure. Sean has the best round the clock care and his daddy to stay by his side. Meredith needs one of her parents as well. And since these days she seems to be more attached to me. So I'll go and snuggle with her. Let her know it's ok to be upset and let her know that I'm there. Hopefully she'll be able to rest easy for the night knowing mommy is close by.

Then I'll come back tomorrow morning. Meredith, Renee & Stew can come too to visit Sean. I know Sean will appreciate hearing their voices too.

Thanks to everyone for their amazing & continued support. We absolutely couldn't do it without you.


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