I stopped to get some dunkin donuts for the nurses and headed into the city. It was an absolutely frustrating drive in. I hit so much traffic at every turn that it seemed to take forever to get to the city. Then Rob call me while I was on West Street and 30th Street and told me that Sean had gotten most of his tubes out & was eating. Oh my god!! I missed a major milestone. :( He said when I got there I'd be able to hold him. YAY!!! But I was still stuck in traffic. Grrrrrrrrr I did my best to weave through the slow pokes and bad drivers to get to the hospital and when I got there I was greeted with such a sweet face. He had gotten the cpap taken off and was on just the cannula and no chest tubes. He looked so sweet.
I waited until he woke up before I held him, but it was a hard wait. It really didn't take long for him to wake up, but at the time it felt like a lifetime. I have been itching to get my paws on him and kiss him, hug him and just remind him how much his mommy loves him. I wanted to feel him close to really feel how strong his little body is. It was only then that I'd truly believe he was healing so well.
I wanted to thank him for being such a strong fighter and fighting for his mommy. Before he went in for his surgery I asked him to fight for me. I asked him to be strong and know that we were all routing for him. And he did!! He really did.
The rest of our stay at the hospital was an interesting one to say the least. We spent Wednesday morning in the PICU with our wonderful nurse, but we knew we'd be moving downstairs to the step down room. It was bittersweet. Moving down meant that Sean was making progress and was healing. Leaving meant our nursing care wouldn't be one on one and there was no guarantee of a good nurse or a good roommate.
We were told to ask whether Sean could go home on Friday. Friday!? Really? How could that be? We were told we'd be there 7-10 days and the surgeon said to plan for the 10 day mark because a lot of kids with Down Syndrome take a little longer to heal. So that's what we planned for. I had a really hard time wrapping my head around a 5 day hospital stay. It wasn't that I wanted to stay at the hospital, because I didn't. I just wanted to make sure Sean was ready. Wasn't it only just 2 days since he had moderate bleeding from his chest tubes? Geez!
As we packed our things up for the trip downstairs, we thanked the nurses & drs that took care of Sean and then headed down. We were told that downstairs was a better place to be because the rooms were better because they are warmer and the nurses left you alone at night. Yes the room was warmer. That's where the "better" stops. The girl that was Sean's roommate was a 13 year old who was coughing with a force. We immediately asked the nurses if we could be moved because hello..... Sean just had surgery. The nurse assured us that she was not contagious, but if we wanted we could speak to the charge nurse. We decided against it because we didn't want to go around pissing people off already when we might have needed to spend another week (or so we thought) there. When we left for dinner, the nurse told us she'd spoken to the charge nurse for us. And then we headed to Coogan's for dinner.
As we waited for our food I realized we were at a restaurant alone. Alone with no kids. Go us! I need to capture that moment. It's the first time in over 2 years we have had a meal without a child.
We got settled into Sean's new room and we decided that because of the noise level, I'd go home again to spend the evening with Meredith and Rob would stay with Sean. Rob can sleep through most noise. I, on the other hand, wake up with the slightest pin drop. It was a good thing that I went home. The nurses were in every hour to check on Sean.
When I got home Meredith was relaxing with grandma and she immediately came to give me a hug. She gives the best hugs. Nothing warms my heart more of faster than a squeeze from the best little girl I have ever known.
I said hi to everyone else and told Meredith that she'd be going to visit Sean the next day. She was so excited that she'd get to see her daddy & baby brother Sean. I then settled in to put Meredith to bed. She went down with ease and then I was able to finally relax.
I woke up early and was out of the house by 5:20am to head to the city. It didn't take me long at all to get in & I was grateful. It was a rough night. Meredith woke up twice and Brewster decided my bedroom was his own personal piddle pad. Brewster almost lost his life as I scrubbed the floors at 4am.
When I got to the hospital everyone was sleeping, including "Lungs" next door. And mysteriously there was no coughing. Hmmmmmmm Rob woke up when I got there and we sat and chatted about the night. Sean had a good night.
The nurse practitioner came in to start to wean Sean off the the cannula. We asked her if Sean would be able to go home on Friday. She surprised us and said the doctors were leaning toward letting him go home that day. I didn't what to say or how to react and I asked her if I could give her a hug. I was so excited. She said yes and I hugged her so tight. She was my hero at that very moment. But there was so much to do. So much to prepare. There really wasn't, but I just didn't know what to do. We needed to get organized and pack up. The house wasn't clean.
We'd have to have an echo done and the drs would have to review the night's readings, but it looked good for us to go home. I was in complete shock. Sean would get his RSV vaccine again if we were going home and we'd have to give Sean some medication. I'm sure I didn't hear a word after "going home today".
Two nursing students came in & started to give Sean his sponge bath. His did fine until the nurse wet his head. I knew it wouldn't be pretty when his head got wet. But he was somewhat clean now. And daddy was a funny guy. He was jealous that Sean was getting a sponge bath and he wasn't.
All clean from his bath & getting ready for a nap.
We asked if we should still have Meredith, Renee & Stew visit. The nurse said yes. We'd probably leave at 4, but there a small chance that we wouldn't be leaving. Then it was echo time. We walked to the room where the echo would be done and we laid him down & opened his pjs. After speaking with the picu nurse, we knew that this was the last thing that needed to be done before we went home. I beamed with such pride that my little fighter had proved everyone wrong. He had shown everyone that he wasn't the average kid with down syndrome. He had shown everyone that he shouldn't be judged based on his chromosomes. He should be judged on him and his capabilities.
Renee & Stew brought Meredith to visit. She was so happy to see Sean. She wanted to kiss him, but I just wasn't comfy with that yet. You never know what she could be harboring. It was so nice to see her care so much for Sean. We decided after 2 hours that it was time for Meredith to go home. She left without much fanfare until she got downstairs. Renee told us that this is when the tears started to flow for Meredith. 4 days was just to long for her to have to deal with mommy & daddy not being home. She cried herself to sleep on the way home and cried when she woke up. She was mushy for about 40 minutes after she got home.
Sean needed a nap, but I needed to drink him in some more. I needed to look at my son and just love him. So did his daddy. It was finally a relaxing couple of minutes that we could just breathe. We knew Sean was feeling better and healing beautifully. We knew we'd be going home. We just wanted to live in that moment. And live we did. We were given a glimpse into sheer will of our son. He's a beautiful soul.
Thankfully the heavens were smiling upon us and were letting us go home. We got Sean dressed in his coming home outfit. And as I have said, we wanted him to be surrounded by love on his trip home. His hat was made by his great grandma. His outfit had been purchased because it was soft and snuggly by his parents, his booties were picked out by his big sister to keep his tootsies warm and his blankie was made by my wonderful friend's mom with love. He looked like a doll.
Meredith was home with grandma & grandpa and they walked the dogs. Because she knew that we were coming home with Sean, she refused to go upstairs until we came home. So they waited on the stoop for us. It was so sweet of her. Like I said 4 days was just 1 day to much for her to be apart from us for any length of time. She needed us home and needed us together. I truly believe it would've been worse had I not come home at night to put her to bed while Sean was in the hospital.
I am in awe of Sean's ability to heal. I am eternally grateful for everyone's help. I am soooooo proud of Meredith for being such an amazing little girl.
This leg of our surgical journey is over. Now we can get one with the business of living. We can start to really focus on Sean being a baby and make sure he continues to thrive. We can really begin our role as parents of two HEALTHY children. And now we can start to focus on us a little more.
Being parents of two kids under 2 years old is hard enough on a marriage. Being the parents of 2 kids under 2 when one has special needs is especially difficult. Thankfully I married my soul mate and it won't be hard to refocus some of our energy to one another. I miss my husband. It doesn't matter that he's usually 3 feet from me. We've been dealing with so much that we've been focusing our energy on keeping our kids healthy & well balanced. Now it's our turn.
Sean has been home for 2 days. He is remarkable. He's eating and sleeping well. He's been smiling all over the place and at everything. We do notice some changes. He's a lot more pink. He was pink before, but now he's flushed. Not really. It just seems that way compared to what he was. His voice is stronger. I was a little moved by his voice. He's nursing better.
I'm still afraid of hurting him when I pick him up and I'm really concerned when he cries. I don't know whether it's gas pain or his chest being sore that causing the screaming. He's supposed to get a bath tonight and I'm scared to death of hurting him.
Yesterday was Sean's 3 month birthday. I can't believe he's already 3 months old. I can't believe he's been through so much already. And he got to spend the day at home. Life doesn't get much better.
Monday we goto the cardiologist for his follow up and then on Thursday we goto the pediatrician for his well visit. I'm excited to see how Dr. Donati (Merediths dr in the practice) is with Sean. I'm excited to see the difference in practice with someone who has a lot more experience working with kids with down syndrome.
Welcome home Sean!!!
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