Well last night was a very long night for me. Nathan's next door neighbor (they are seperated by only a curtain) just had surgery and was up all night screaming in pain. I felt badly for his mom who kept trying to quiet him down but he was just so upset all night. Nathan slept right through him but I was up all night. Then the kid two curtains down stopped breathing (I think) and they called a staff assist, at 2am - it sounded like a heard of elephants running to his room. He is fine now, but I was just up all night. Nathan did great and slept through it all, my perfect little NICU baby.
I talked with ORL this morning and they have started to wean him off his oxygen and he went from 70% to 35% so he's almost back on room air - 21%. He is doing much better today, it seems to have really helped him to have his lungs suctioned out yesterday and have his vocal cords dilated. ORL said he should be able to go home in a few days. Then the ICU doctors said they might send him to a regular floor later today. So overall he seems to be over the hump and doing much, much better.
This morning I was rubbing Nathan's head and he told me to leave him alone. Then he told me to go lay down in my bed, so I did. Twenty minutes later he told me to come sit next to him until his EeeeAaaaa gets here (my sister Lisa). So now I'm just sitting next to him reassuring him every 20 minutes that she is on her way and will be here soon.
Family Vacation
Thursday, October 27, 2011
Wednesday, October 26, 2011
Update
Nathan is out of the OR. The doctor said that he does have pneumonia, there was a ton of puss in his lungs. So the doctor suctioned a lot of it out and sent a culture so they can be sure they are using the correct antibiotic. Also, his vocal cords had shut most of the way. The doctor said that can sometimes happen after the particular surgery he had done so he dilated them back open. The whole OR trip was over within an hour or so.
Right now Nathan is resting not so comfortably, he has only a curtain seperating him from the room next door and a little boy was just admitted who is a screamer. Every time Nathan starts to fall asleep the other little boy wakes him up. Nathan just told me to tell him to be quiet. He just wants to sleep, he keeps telling me he is tired. For now he is doing OK. Still on a lot of oxygen which isn't unusual since he does have pneumonia. We just have to wait a few days for the antibiotics to work and then he should be good as new.
Right now Nathan is resting not so comfortably, he has only a curtain seperating him from the room next door and a little boy was just admitted who is a screamer. Every time Nathan starts to fall asleep the other little boy wakes him up. Nathan just told me to tell him to be quiet. He just wants to sleep, he keeps telling me he is tired. For now he is doing OK. Still on a lot of oxygen which isn't unusual since he does have pneumonia. We just have to wait a few days for the antibiotics to work and then he should be good as new.
Today
Nathan for a to the OR today at 12:30. We won't know anything until then. For now he is waiting for Grandma to come visit. He is doing ok, on a lot of oxygen to keep his sats up. I will update once I know anything.
Tuesday, October 25, 2011
Boston
Well, we are safely in Boston. It took us 2 ambulances and a jet but we got here. Nathan is all settled in. He is scheduled to go to the OR tomorrow so his Dr can look at his airway. We won't know anything until then. Will update tomorrow.
Home and Back Again
Well, he's back in the hospital. Nathan had been doing really great since he was discharged from the hospital in Syracuse. He had stopped coughing as much and had completley stopped throwing up at night. Then things started to go downhill again.
Yesterday Nathan went to school and didn't do so great. He was tired and wanted to sleep during recess, he was still tired after he got home from school. My parents were babysitting since Matt was already at work and I had to work from 3-11. I left for work and told them that if Nathan got worse to just call 911 and then call me. I had been at work for 10 minutes when my mom called and said that Nathan was worse and they called 911.
Nathan went to the ER and was admitted to the PICU. We were only in the ER for 3 1/2 hours, our quickest ER visit ever! The plan is to transfer him to Boston today, now that he is more stable. His airway is swollen and seems to be shutting, and his lungs don't look great on x-ray. He was too unstable for transport yesterday but today he seems to be doing OK. Hopefully sometime later today the helicopter will arrive and take Nathan to Boston. For now we have no answers but I am hoping we will have some later.
Yesterday Nathan went to school and didn't do so great. He was tired and wanted to sleep during recess, he was still tired after he got home from school. My parents were babysitting since Matt was already at work and I had to work from 3-11. I left for work and told them that if Nathan got worse to just call 911 and then call me. I had been at work for 10 minutes when my mom called and said that Nathan was worse and they called 911.
Nathan went to the ER and was admitted to the PICU. We were only in the ER for 3 1/2 hours, our quickest ER visit ever! The plan is to transfer him to Boston today, now that he is more stable. His airway is swollen and seems to be shutting, and his lungs don't look great on x-ray. He was too unstable for transport yesterday but today he seems to be doing OK. Hopefully sometime later today the helicopter will arrive and take Nathan to Boston. For now we have no answers but I am hoping we will have some later.
Tuesday, October 11, 2011
What's a vacation
This weekend the boys and I went to Baldwinsville to visit Aunt Trish and her family. It was going to be a great weekend filled with the pumpkin patch and the zoo, a lovely fall weekend. Nathan was thrilled to be going so he could see Nick and Alex (who were both great to give up their weekend to spend time with my boys) and play with them.
Friday Nathan wasn't as energetic as he usually is so I thought he was just tired from the school week. Saturday he was still tired, I thought he had been up that night coughing and was still just tired. When we got to B'ville he wanted to lay on the couch and sleep. Trevor wanted to eat! So Nathan was planted in front of the tv on the couch, he was in heaven. Trevor had a great time sneaking away up the stairs to help Mommy set up their beds. Sunday we were going to go to the zoo and to get pumpkins. Sunday it was clear Nathan wasn't great.
While we were at the zoo Nathan wasn't interested in any of the animals. He wanted to zoom right through the zoo, he kept telling us to go. Trevor was having fun but did decide 1/2 way through that he was going to walk. The boys both had a good time watching the penguins (one pooped and it's all Nathan can talk about) but that's about it. Then all of us were hungry so we went to the cafeteria to eat and Nathan fell asleep. We decided to skip pumpkins because Nathan was tired and wanted to nap. We got back to the house and both boys went down for naps. When Nathan got up he was sick and burning up. I took him temp, it was 104.1. Aunt Trish (my hospital buddy) went to get children's tylenol, Nathan watched more TV. I gave him the tylenol and albuterol. The albuterol didn't help so we went to the hospital. We left Trevor in the care of Aunt Lisa who was feeding him dinner as we left.
The ER was great, the realized that Nathan was in trouble and got him to a room right away. The doctor came to evaluate Nathan before he was even in a room, we were standing in the hallway. That's where things sort of fell apart. They couldn't read his x-ray, I had to do it. The doctors never agreed on a diagnosis, some say croup, some say an infected graft some say pneumonia. I think the pneumonia is the most accurate but there isn't really a way to tell.
Nathan is doing much better now. The downside was that Nathan was in the hospital for Monday, when we were supposed to go home. Lisa ended up taking Trevor home with her and I stayed in the hospital with Nathan. Really I didn't have to be there since Nathan wanted nothing to do with me, he just wanted Aunt Trish. Nathan came home today and we are back at our house now. Aunt Trish drove Nathan and I to Herkimer where Geege met us and drove us home.
Overall, we need to redo the zoo since no one really had a great time. Uncle Mark promised us that next time we visit we will go on a horse-drawn sleigh ride, we can't wait to visit again.
Friday Nathan wasn't as energetic as he usually is so I thought he was just tired from the school week. Saturday he was still tired, I thought he had been up that night coughing and was still just tired. When we got to B'ville he wanted to lay on the couch and sleep. Trevor wanted to eat! So Nathan was planted in front of the tv on the couch, he was in heaven. Trevor had a great time sneaking away up the stairs to help Mommy set up their beds. Sunday we were going to go to the zoo and to get pumpkins. Sunday it was clear Nathan wasn't great.
While we were at the zoo Nathan wasn't interested in any of the animals. He wanted to zoom right through the zoo, he kept telling us to go. Trevor was having fun but did decide 1/2 way through that he was going to walk. The boys both had a good time watching the penguins (one pooped and it's all Nathan can talk about) but that's about it. Then all of us were hungry so we went to the cafeteria to eat and Nathan fell asleep. We decided to skip pumpkins because Nathan was tired and wanted to nap. We got back to the house and both boys went down for naps. When Nathan got up he was sick and burning up. I took him temp, it was 104.1. Aunt Trish (my hospital buddy) went to get children's tylenol, Nathan watched more TV. I gave him the tylenol and albuterol. The albuterol didn't help so we went to the hospital. We left Trevor in the care of Aunt Lisa who was feeding him dinner as we left.
The ER was great, the realized that Nathan was in trouble and got him to a room right away. The doctor came to evaluate Nathan before he was even in a room, we were standing in the hallway. That's where things sort of fell apart. They couldn't read his x-ray, I had to do it. The doctors never agreed on a diagnosis, some say croup, some say an infected graft some say pneumonia. I think the pneumonia is the most accurate but there isn't really a way to tell.
Nathan is doing much better now. The downside was that Nathan was in the hospital for Monday, when we were supposed to go home. Lisa ended up taking Trevor home with her and I stayed in the hospital with Nathan. Really I didn't have to be there since Nathan wanted nothing to do with me, he just wanted Aunt Trish. Nathan came home today and we are back at our house now. Aunt Trish drove Nathan and I to Herkimer where Geege met us and drove us home.
Overall, we need to redo the zoo since no one really had a great time. Uncle Mark promised us that next time we visit we will go on a horse-drawn sleigh ride, we can't wait to visit again.
Monday, October 3, 2011
The bus and other things
Things in the Webster house have been relatively easy lately. I'll start with Trevor.
Trevor has been doing great. Ever since he turned 1 in June we've been going to the pediatrician each month for a weight check, he wasn't growing the way he was supposed to. He fell off the growth charts and the doctor was worried. Well, in September he got his little self back on the charts and we no longer have to go each month. He was in the 10th percentile (almost) for weight and back to the 50th for height. He is an eating machine and will eat all day, everday. He loves food, so how he ever stopped gaining weight is beyond me. He walks all over and if anyone ever leaves the gate open he loves to go upstairs and giggles when he gets there. Trevor wants to play with whatever toy Nathan is currently playing with and has started taking the toy once Nathan turns his back, sneaky little guy. He likes to clap and dance to music, baby has some moves! Trevor has a cold right now, but other than that he's been great.
Nathan has been doing great. He loves to take the bus to school even though it's a van on the way to school. He does get to take an actual bus on the way home and he LOVES that. He has a nice bus driver and he turns music on for Nathan and he dances around in his seat. Nathan seems to be up a little more at night than I would like, he's coughing a lot. He does seem to be getting better with that so I think we're getting that under control. He has started telling us "I'd like to take a nap please" when he gets home from school. He does love to sleep. Tonight we were washing his sheets and Nathan said to us, I'd like to go to bed now and we had to say no because his sheets weren't clean yet! Soon after that though he did get to go to sleep, at 7:45!
I have been working a lot lately and so has Matt. We haven't seen much of one another lately because of differing work schedules but in a couple weeks we are going away for a night just the two of us. Matt has a week of vacation and I'm also taking the week off. I'm going away with the March of Dimes for a few days after Matt and I get back so we won't have much family time but I'm really looking forward to going away with my friends!
This weekend my sister and I are taking the boys to my Aunt's house in B'ville to go to the zoo. Nathan has no idea we are going to the zoo just in case of bad weather, but he does know we're going to our Aunt's house. We are looking forward to our first post-trach trip (that means a lot less packing)!
I'll post zoo pictures once I get back.
Trevor has been doing great. Ever since he turned 1 in June we've been going to the pediatrician each month for a weight check, he wasn't growing the way he was supposed to. He fell off the growth charts and the doctor was worried. Well, in September he got his little self back on the charts and we no longer have to go each month. He was in the 10th percentile (almost) for weight and back to the 50th for height. He is an eating machine and will eat all day, everday. He loves food, so how he ever stopped gaining weight is beyond me. He walks all over and if anyone ever leaves the gate open he loves to go upstairs and giggles when he gets there. Trevor wants to play with whatever toy Nathan is currently playing with and has started taking the toy once Nathan turns his back, sneaky little guy. He likes to clap and dance to music, baby has some moves! Trevor has a cold right now, but other than that he's been great.
Nathan has been doing great. He loves to take the bus to school even though it's a van on the way to school. He does get to take an actual bus on the way home and he LOVES that. He has a nice bus driver and he turns music on for Nathan and he dances around in his seat. Nathan seems to be up a little more at night than I would like, he's coughing a lot. He does seem to be getting better with that so I think we're getting that under control. He has started telling us "I'd like to take a nap please" when he gets home from school. He does love to sleep. Tonight we were washing his sheets and Nathan said to us, I'd like to go to bed now and we had to say no because his sheets weren't clean yet! Soon after that though he did get to go to sleep, at 7:45!
I have been working a lot lately and so has Matt. We haven't seen much of one another lately because of differing work schedules but in a couple weeks we are going away for a night just the two of us. Matt has a week of vacation and I'm also taking the week off. I'm going away with the March of Dimes for a few days after Matt and I get back so we won't have much family time but I'm really looking forward to going away with my friends!
This weekend my sister and I are taking the boys to my Aunt's house in B'ville to go to the zoo. Nathan has no idea we are going to the zoo just in case of bad weather, but he does know we're going to our Aunt's house. We are looking forward to our first post-trach trip (that means a lot less packing)!
I'll post zoo pictures once I get back.
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