5/25/09
Home!
Bubsy came home today. He's exhausted. We're exhausted. But he's doing great. A proper update will come tomorrow.
5/24/09
More News from the Bubsy Bedside
Bubsy and Mama V had a rough night, too. He kept wretching, however, he was able to get up to 42 ml/hr of feeds with no morphine. Progress! Also, the surgery physicians just 'realized' that perhaps Bobby's g-tube needs venting to help his reflux. Plus, Miralax was also ordered, so hopefully Bobby will find tummy/GI relief soon.
They are talking discharge tomorrow (Memorial Day Monday), which would be delightful. We know from experience that Bobby heals more quickly at home.
It's Mama A on duty tonight. Hopefully this is the last of the hospital admissions for a (long) while... Amen!
They are talking discharge tomorrow (Memorial Day Monday), which would be delightful. We know from experience that Bobby heals more quickly at home.
It's Mama A on duty tonight. Hopefully this is the last of the hospital admissions for a (long) while... Amen!
5/23/09
News from the Bubsy Bedside
Bubsy and Mama A had a rough night. He kept wretching (more commonly known by college students as dry heaving). I don't think he slept more than 45 minutes at a stretch, meaning Mama A slept not at all.
But that's all last night. Today, he got off of his oxygen and they pulled his nasal tube. Now his cheeks are free. I learned how to hook up the g-tube and its as easy as promised. His wretching is now much better because that big old nasal tube is out of his throat.
He had a bath. He's dressed. He's about to start feeding through the g-tube. He's playing with his toys a bit. We can cuddle and he's allowed to go for walks around the hospital. His face is still a bit swollen but overall he looks much more like himself, except that he doesn't have tape on his face!
So Bubsy is taking a nap. Mamas are going to eat some lunch and then I'm taking a nap to rest up for our big afternoon walk. The doctors say he's doing as well as they could hope - something we don't often hear during hospital stays. Go Bobby Go!
But that's all last night. Today, he got off of his oxygen and they pulled his nasal tube. Now his cheeks are free. I learned how to hook up the g-tube and its as easy as promised. His wretching is now much better because that big old nasal tube is out of his throat.
He had a bath. He's dressed. He's about to start feeding through the g-tube. He's playing with his toys a bit. We can cuddle and he's allowed to go for walks around the hospital. His face is still a bit swollen but overall he looks much more like himself, except that he doesn't have tape on his face!
So Bubsy is taking a nap. Mamas are going to eat some lunch and then I'm taking a nap to rest up for our big afternoon walk. The doctors say he's doing as well as they could hope - something we don't often hear during hospital stays. Go Bobby Go!
5/22/09
One day done
It's been a long but largely successful day for Bobby. This morning we had a bit of excitement as he developed something akin to a rash. His face and shoulders turned bright red, although he didn't have any hives. That went away with cold compresses but then came back this evening, albeit not as bad. The doctors think its a reaction to morphine.
Speaking of which, Bobby has been off of the morphine since 11:00 and it looks promising for us to stay off. He's on Tylenol every 6 hours and that, along with lots of gentle care, seem to do the trick. He hasn't really been all that awake today - he's been pretty out of it, which is just as well.
The father of our little roommate came this afternoon. I'm happy to know that there is a dad. And a very loving dad at that. There was an unfortunate incident involving booger removal and a screaming little guy, but that particular chore is very controversial with Bobby as well.
So we hope for good sleep tonight and I expect a much more alert Bobby in the morning. We'll start his feeds midday. He will begin with 5 ml dripped over an hour. He moves up 5 ml every 4 or so hours. That means he should be on full feeds sometime Sunday.
Speaking of which, Bobby has been off of the morphine since 11:00 and it looks promising for us to stay off. He's on Tylenol every 6 hours and that, along with lots of gentle care, seem to do the trick. He hasn't really been all that awake today - he's been pretty out of it, which is just as well.
The father of our little roommate came this afternoon. I'm happy to know that there is a dad. And a very loving dad at that. There was an unfortunate incident involving booger removal and a screaming little guy, but that particular chore is very controversial with Bobby as well.
So we hope for good sleep tonight and I expect a much more alert Bobby in the morning. We'll start his feeds midday. He will begin with 5 ml dripped over an hour. He moves up 5 ml every 4 or so hours. That means he should be on full feeds sometime Sunday.
Quiet Friday (Hopefully)
Bobby had a rough time last night. He was on morphine from about 6:30 on, but his doses came every 3 hours and the effect only lasted 2. Although, genius mom that I am, at 2 this morning I finally decided to hold him, cords and leads be darned, and that calmed him immediately. I should know better than to let all the attachments scare me off of holding him.
So now he's sleeping comfortably. We're going to try to keep him on Tylenol instead of morphine today. I'm hoping today will be about sleeping and cuddling. We're just waiting for his tube to heal a bit - we will start feeding him tomorrow.
We've been very lucky staff wise during this stay. Pretty much everyone we've come in contact with has been very nice and very good at what they do. Being on 5W is like a reunion for us - staff keep stopping by to say hello.
We have a very nice roommate. He's a little guy, maybe a year or so older than Bobby. He either doesn't have parents or he doesn't have parents who can be here so the nurses take care of him. He spends his awake time at the nurse's station being doted on. Right now, he's gone to his play group.
So now he's sleeping comfortably. We're going to try to keep him on Tylenol instead of morphine today. I'm hoping today will be about sleeping and cuddling. We're just waiting for his tube to heal a bit - we will start feeding him tomorrow.
We've been very lucky staff wise during this stay. Pretty much everyone we've come in contact with has been very nice and very good at what they do. Being on 5W is like a reunion for us - staff keep stopping by to say hello.
We have a very nice roommate. He's a little guy, maybe a year or so older than Bobby. He either doesn't have parents or he doesn't have parents who can be here so the nurses take care of him. He spends his awake time at the nurse's station being doted on. Right now, he's gone to his play group.
5/21/09
Morphine Haze (7:53pm)
Bobby did great today. His extubation went well so we are now on a regular floor, not in the PICU. He had a rough time transitioning from the recovery room to his permanent bed. His stomach is sore so he wretched which made his stomach more sore. He turned a really bright red. It was a little scary. But, one dose of morphine set him right. He's now sound asleep and the goal is to keep him comfortable through the night.
Tomorrow will be a day of rest while the g-tube heals. Hopefully his pain will be better in the a.m. At the least his doctor seems to be of the mind to dope him up, which is good provided we don't end up on methadone like last time.
Tomorrow will be a day of rest while the g-tube heals. Hopefully his pain will be better in the a.m. At the least his doctor seems to be of the mind to dope him up, which is good provided we don't end up on methadone like last time.
More good news (5:15pm)
We just spoke with the audiologist and ophthalmologist. Bobby's hearing and his eyesight are fine. He has congenital nystagmus in his eyes which long term will require glasses, but for now his vision is good.
We're just waiting to hear about the extubation.
We're just waiting to hear about the extubation.
Round 1 complete! (4:05pm)
Bobby's surgeon just stopped by - his Nissen and G-tube surgery went very well. They were able to do the whole procedure laproscopically which will make the recovery time easier. Now we hang out for 48 hours waiting for the g-tube site to heal. We'll start feeding Bubs on Saturday and will likely go home Monday or Tuesday once he's back on regular feeds.
Now we are waiting while he gets his hearing test and eye exam. Its much easier now that he's closed up. The big safety issue now is when he gets extubated. If that goes well he'll be admitted to a regular floor. If not, we'll be in the PICU for a day or two.
Now we are waiting while he gets his hearing test and eye exam. Its much easier now that he's closed up. The big safety issue now is when he gets extubated. If that goes well he'll be admitted to a regular floor. If not, we'll be in the PICU for a day or two.
Update (1:19pm)
We just got an update from the OR.
They had a harder than expected time in putting in an IV. We knew that would happen - it always does.
So far they've started the nissen. They are trying to perform the surgery laproscopically and so far so good.
Most important, Bobby has been stable thus far.
They had a harder than expected time in putting in an IV. We knew that would happen - it always does.
So far they've started the nissen. They are trying to perform the surgery laproscopically and so far so good.
Most important, Bobby has been stable thus far.
Surgery Day (11:38am)
Valerie and I are sitting in the surgery waiting room, again. This whole process is way too familiar.
Today Bobby's getting a g-tube, a nissen fundoplication, a sedated hearing test (ABR) and an eye exam. The whole thing will take the better part of the afternoon.
We expect an update in about an hour once the anasthesia is done and the surgery starts.
Bobby had fun playing this morning - he spent a long time playing in his jumperoo - he's figured out how to pivot so he can go in the whole circle. It appears to be immensely enjoyable. Then, he had a nice nap in Mama Valerie's arms while we waited for the pre-op procedures.
I feel so bad that he keeps having to go through this. I'm at least glad we're getting 4 procedures done at the same time today.
More later...
Today Bobby's getting a g-tube, a nissen fundoplication, a sedated hearing test (ABR) and an eye exam. The whole thing will take the better part of the afternoon.
We expect an update in about an hour once the anasthesia is done and the surgery starts.
Bobby had fun playing this morning - he spent a long time playing in his jumperoo - he's figured out how to pivot so he can go in the whole circle. It appears to be immensely enjoyable. Then, he had a nice nap in Mama Valerie's arms while we waited for the pre-op procedures.
I feel so bad that he keeps having to go through this. I'm at least glad we're getting 4 procedures done at the same time today.
More later...
5/17/09
Another Round
We had big plans today - go see nana and then up to Lambs Farm for lunch and petting zoo fun. But Bobby's feeding tube kept coming unhooked - this after he was soaked twice yesterday from it leaking. So, we spent the better part of the day in the emergency room getting his feeding tube replaced.
Hopefully, this is the last time. Bobby is getting a g-tube on Thursday May 21st - that's a feeding tube that goes directly into his stomach. He will also have a nissen fundoplication - an operation where his esophagus is tightened at the point where it connects to the stomach. This will help his reflux.
Its a pretty big surgery, but truth is, after heart surgery nothing seems that major. He'll be in the hospital 3-5 days but beyond that we don't know about recovery time. We know he won't have a feeding tube in his nose anymore and he should be able to get off of continuous feeds in a few weeks. That will free the boy up for all the new and fun things he's learning.
His latest? He's started reaching for us when he wants to be held. Its a great manuever for him because we can't resist it. Last Friday he got an early end to his speech therapy because he reached for Nanny Beth for the first time. That boy is going to be trouble :)
Hopefully, this is the last time. Bobby is getting a g-tube on Thursday May 21st - that's a feeding tube that goes directly into his stomach. He will also have a nissen fundoplication - an operation where his esophagus is tightened at the point where it connects to the stomach. This will help his reflux.
Its a pretty big surgery, but truth is, after heart surgery nothing seems that major. He'll be in the hospital 3-5 days but beyond that we don't know about recovery time. We know he won't have a feeding tube in his nose anymore and he should be able to get off of continuous feeds in a few weeks. That will free the boy up for all the new and fun things he's learning.
His latest? He's started reaching for us when he wants to be held. Its a great manuever for him because we can't resist it. Last Friday he got an early end to his speech therapy because he reached for Nanny Beth for the first time. That boy is going to be trouble :)
5/14/09
5/12/09
Movin' and a Shakin'
This is a very fun time to be part of Bubsy's life. He is getting stronger and stronger every day. He's rolling back to tummy now and almost has figured out tummy to back - he just needs to tuck his arm when he rolls. He's babbling more and more now - he's got down the 'ba' and the 'da' and has been known to surprise us with a 'ta' and a 'la'. I begged for 'ma' on Mother's Day, but no such luck :)
I think we're making real progress towards sitting up. He can sit in his booster chair now for a very long time - it provides some support because the tray and the back keep him from falling, but he does 75% of the work of sitting by himself. As he gets stronger he starts to play with his old toys in new ways - the cause and effect toys that he used to just push buttons on he now picks up and turns so he can examine all facets of the toy (for Bobby, examine = bite on and lick). He's even started putting some weight on his feet.
He seems very happy. He's smiling much more and we can get some giggles out of him. He's taking music class with his nanny Beth again and loves that. This time around he's even interacting with the other babies. He is really starting to engage in play now - the little boy who would lay on the floor quietly for an hour is no longer. He's been replaced by the little boy who lets us hear it when he gets bored.
So, things are good in Bobby land. The g-tube surgery will be soon - probably next week or the week after. First we have to get rid of a couple of infections - he has an abcess from his heart surgery suture and ear infections in both ears. Beth is picking up antibiotics for both as I write this. We cannot wait to be rid of the nj tube - we've been to the emergency room 4 times to have it replaced, each time taking 6 or so hours. The week of the swine flu outbreak we had to go twice - that left plenty of room for worry. It will be so nice to be off of continuous feeds so he can play without worrying about tubes.
I think we're making real progress towards sitting up. He can sit in his booster chair now for a very long time - it provides some support because the tray and the back keep him from falling, but he does 75% of the work of sitting by himself. As he gets stronger he starts to play with his old toys in new ways - the cause and effect toys that he used to just push buttons on he now picks up and turns so he can examine all facets of the toy (for Bobby, examine = bite on and lick). He's even started putting some weight on his feet.
He seems very happy. He's smiling much more and we can get some giggles out of him. He's taking music class with his nanny Beth again and loves that. This time around he's even interacting with the other babies. He is really starting to engage in play now - the little boy who would lay on the floor quietly for an hour is no longer. He's been replaced by the little boy who lets us hear it when he gets bored.
So, things are good in Bobby land. The g-tube surgery will be soon - probably next week or the week after. First we have to get rid of a couple of infections - he has an abcess from his heart surgery suture and ear infections in both ears. Beth is picking up antibiotics for both as I write this. We cannot wait to be rid of the nj tube - we've been to the emergency room 4 times to have it replaced, each time taking 6 or so hours. The week of the swine flu outbreak we had to go twice - that left plenty of room for worry. It will be so nice to be off of continuous feeds so he can play without worrying about tubes.
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