We brought Sean to the cardiologist today for his post-op check up. Dr. LaCorte was very excited by how well Sean did with his surgery & how quickly he was healing. He commented that he would have thought is Sean was released today it would've been early.
Sean's oxygen level is 100% and his heart rate was in the 150's. When Dr. LaCorte started Sean's echo, Sean flipped. He wasn't happy to have anything directly on his chest. It wasn't the laid back Sean he knew pre-operatively. There was no fluid in Sean's lungs or on his heart. YAY!! So we can wean Sean off the lasix. The patch looked great & there was no leakage.
He also explained to us that Dr. Bacha used a new technique on Sean's pulmonary valve. Instead of just putting a patch on the valve, he rebuilt parts of his valve to hopefully avoid the necessity of a valve replacement later in life.
I'm so thrilled that Sean continues to do well. He's such a strong little boy. I'm also happy to have this leg of his journey behind us.
Continued thanks to everyone who continues to offer their support to us.
Showing posts with label tetralogy of fallot. Show all posts
Showing posts with label tetralogy of fallot. Show all posts
Monday, October 11, 2010
Saturday, October 9, 2010
The journey home
Tuesday night was so nice. I got to spend some time with Meredith and we snuggled, watched some TV and then went to bed peacefully. We woke up on Wednesday morning with the promise of a gorgeous day. We got dressed & ready for school & headed over there. I told Meredith that grandma would be picking her up & she didn't seem to mind. It was pretty painless. I'm so proud of her.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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?
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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