quick update:
We would have been able to leave before the holiday weekend but not eating for a week messed up the little guy's eating habits. So we were almost sent home with a feeding tube. Close enough that that they made me practice putting it in and checking placement. Not fun, but it is easier to do on a baby than an adult.
So, we've been back home for a week. (ya know, that place without internet access) As of today he's 10 lbs. that's just one ounce short of where he was when this whole mess started. The cardiologist said everything looks good and took him off of the lasix, but he's going to have to keep taking the captopril and digoxin for an undetermined amount of time. Maybe forever. That's OK with me, having to give him meds three times a day is do-able. His scar is just a red line down his chest (Dad says that for the rest of his life he'll always be "#1") and the bruising around it is almost gone.
Now if he'd only say amused by his mobile long enough for mom to get some work done. one handed typing is tedious.
cheese!
Tuesday, November 21, 2006
Friday, November 10, 2006
chuggin' along
As of last night things are still going really well. The day after he started eating the nurses let me breastfeed him again. It was a very scary thing to hold him again when he looks so broken in the middle. But by the second feeding he was back to laying on his side without a problem. The problem, was, that after I left he wasn't eating from a bottle well so while dad and I were gone for the night they put in a NasoGastric tube to feed him. (they did call us to let us know they were doing it) And yesterday when I got in there and tried to feed him again he would eat for a little bit, but then he would just lay there and cry. The nurse told me "sometimes babies just cry" but He just doesn't do that. In the two months I had him he only ever cried for a reason. Sometimes he just wanted to be held, but if your holding him and he's still crying there's a problem. After a bit he coughed up a whole bunch of frothy white mucus. The nurse said "Oh, he just needed to cough something up." Duh. The thing that irritated me was that she didn't listen when I told her that something was wrong. Clearing his lungs was something she couldn't have helped with but she could have listened to me instead of totally discounting what I said. I was probably a touch irritable too from trying to sleep in a chair at the baby's bedside again. I'm not going to to let myself be bullied into that again though. They have plenty of milk in the freezer.
Anyway, they pulled out the arterial line, and both of the remaining drains. And shortly before we transfered him out of the PCICU someone suggested that he might be irritated by the NG tube. So I got them to agree to pull out the tube after they ran a feeding into his stomach so that the next time I could try to get him back on the boob without the tube running down the back of his throat. So Last night he ate beautifully with the tube gone, and I'm hoping that he ate enough from the bottle last night that they didn't put it back in. So with that tube gone the only thing left in him is the PIC line that won't come out till they discharge him. Fine by me sine it allows access both ways and they won't have to stick him again. The poor kid has Mommy's skin and veins.
So in this ward they are going to be concentrating on getting him ready to go home. The main thing that they'll be looking for is how well he's eating. He has to be putting on weight again before he can leave. When this all started he weighed 10 lbs 1 oz, last night he weighed in at 9 lbs 7 oz. Not too bad considering that's he's barely eaten in the last week. We might go home as early as monday, but it'll probably be a little bit longer.
One more cool thing about living at RMH is all of the donations we get. From all of the day-olds at the closest starbucks (including chocolate croissants and cream cheese muffins) to free services from the local businesses. The closest salon offers free haircuts to residents. So I took advantage of it and got a haircut that I really like. I need to take a shower though, and I don't currently have access to a hairdryer so I'm a little sad. When I told all that to the night nurse she asked which salon it was. According to her haircuts there cost "a fortune". So I got the most expensive haircut of my life for free. Cool.
More news later.
Anyway, they pulled out the arterial line, and both of the remaining drains. And shortly before we transfered him out of the PCICU someone suggested that he might be irritated by the NG tube. So I got them to agree to pull out the tube after they ran a feeding into his stomach so that the next time I could try to get him back on the boob without the tube running down the back of his throat. So Last night he ate beautifully with the tube gone, and I'm hoping that he ate enough from the bottle last night that they didn't put it back in. So with that tube gone the only thing left in him is the PIC line that won't come out till they discharge him. Fine by me sine it allows access both ways and they won't have to stick him again. The poor kid has Mommy's skin and veins.
So in this ward they are going to be concentrating on getting him ready to go home. The main thing that they'll be looking for is how well he's eating. He has to be putting on weight again before he can leave. When this all started he weighed 10 lbs 1 oz, last night he weighed in at 9 lbs 7 oz. Not too bad considering that's he's barely eaten in the last week. We might go home as early as monday, but it'll probably be a little bit longer.
One more cool thing about living at RMH is all of the donations we get. From all of the day-olds at the closest starbucks (including chocolate croissants and cream cheese muffins) to free services from the local businesses. The closest salon offers free haircuts to residents. So I took advantage of it and got a haircut that I really like. I need to take a shower though, and I don't currently have access to a hairdryer so I'm a little sad. When I told all that to the night nurse she asked which salon it was. According to her haircuts there cost "a fortune". So I got the most expensive haircut of my life for free. Cool.
More news later.
Tuesday, November 07, 2006
Today was a great day
Yesterday wasn't bad either.
Hubby had gone home the night before to be able to go to class in the morning so my cousin came back up to keep me occupied. By the time we got to the hospital they had removed his catheter and the rectal temperature probe. And two or three lines that were going into various limbs. They put in a PIC line that would eventually replace one of the lines that were going directly into his heart. And they were letting him wake up more.
This morning when they were doing rounds they decided to go ahead and remove all three atrial lines one at a time so that they would be able to let him off of the sedation. When we arrived they had already removed the Left one, and after a bit we decided that we would head back to RMH to shower/shave/eat. They said that they were going to remove the two going to the right atrium and then give him time to wake up from the sedation. So they didn't expect to be taking him off of the respirator for a few hours. An hour and a half later I'm in the shower and they call to say they're about to extibate (is that how you spell that?) Little butt is breathing on his own and ate two ounces of breast milk from a bottle before zonking out. We were so happy we smiled all of the way back to the House, despite the crazy woman cursing on the shuttle.
Gotta go, Southwest Airlines is serving an early thanksgiving dinner at any moment, and we have a whole lot to be thankful for.
Hubby had gone home the night before to be able to go to class in the morning so my cousin came back up to keep me occupied. By the time we got to the hospital they had removed his catheter and the rectal temperature probe. And two or three lines that were going into various limbs. They put in a PIC line that would eventually replace one of the lines that were going directly into his heart. And they were letting him wake up more.
This morning when they were doing rounds they decided to go ahead and remove all three atrial lines one at a time so that they would be able to let him off of the sedation. When we arrived they had already removed the Left one, and after a bit we decided that we would head back to RMH to shower/shave/eat. They said that they were going to remove the two going to the right atrium and then give him time to wake up from the sedation. So they didn't expect to be taking him off of the respirator for a few hours. An hour and a half later I'm in the shower and they call to say they're about to extibate (is that how you spell that?) Little butt is breathing on his own and ate two ounces of breast milk from a bottle before zonking out. We were so happy we smiled all of the way back to the House, despite the crazy woman cursing on the shuttle.
Gotta go, Southwest Airlines is serving an early thanksgiving dinner at any moment, and we have a whole lot to be thankful for.
Sunday, November 05, 2006
Thank God for McDonald's
I'll probably start posting very frequently with updates since I now have internet access in the sitting area 20' away from my front door.
Right now I'll just give the short, short version of what's been going on:
September 1st: Had the most beautiful baby boy EVER by emergency c-section. 6lbs 1.4oz 18.5 in. The perfect picture of health was a wiz at breastfeeding and was only held back by the bedridden mess he knows as "Mommy".
November 1st: We went to the two month well-baby vist. First the doctor noticed a high breath rate, then I mentioned that his feeding was a little off since sunday, THEN she heard a murmur. Tests were done at our home kaiser office and they found that he had an enlarged heart that was basically causing congestive heart failure. CHF! In my georgous, happy, two month old baby! They were unable to find the reason and I ended up in two different ambulances with my baby until we were in the PCICU at UCSF. Luckily we have an amazing cardiologist here who found the problem right away. The found a "Misplaced Coronary Artery" (officially, abbreviated something like ALPACA, or ALCAPA) on the 2nd. Surgery on the 3rd, and today they closed his chest. The staff at the hospital is amazing, and they're always using the word "great" to describe how he's doing.
I'll try to expand more later, but right now I'm just trying to stay awake till my laundry is done.
My baby is "great" and the Social Worker at the hospital is a blessing.
She found Hubby and I a place at the SF Ronald McDonald house. It has everything we could need. We have an "apartment" with it's own bathroom and a big walk-in closet. There is plenty of food in this amazing, huge kitchen, and there is also reserved fridge and cupboard space for room. And other groups come by and make meals for the residents a few times a week. They have big washers and dryers in the basement (and 35cent cans of Coke...in San Francisco!!) There are electric breast pumps on each floor just like the ones at the hospital. Books, magazines, internet access.
And as long as he's in the hospital we can stay here. . .for free.
Next time you go by McDonalds, please throw some change in that little clear box.
Almost forgot. My BIL brought his laptop this weekend and blogged about what was going on.
http://www.myspace.com/joesilvasr
g-night
Right now I'll just give the short, short version of what's been going on:
September 1st: Had the most beautiful baby boy EVER by emergency c-section. 6lbs 1.4oz 18.5 in. The perfect picture of health was a wiz at breastfeeding and was only held back by the bedridden mess he knows as "Mommy".
November 1st: We went to the two month well-baby vist. First the doctor noticed a high breath rate, then I mentioned that his feeding was a little off since sunday, THEN she heard a murmur. Tests were done at our home kaiser office and they found that he had an enlarged heart that was basically causing congestive heart failure. CHF! In my georgous, happy, two month old baby! They were unable to find the reason and I ended up in two different ambulances with my baby until we were in the PCICU at UCSF. Luckily we have an amazing cardiologist here who found the problem right away. The found a "Misplaced Coronary Artery" (officially, abbreviated something like ALPACA, or ALCAPA) on the 2nd. Surgery on the 3rd, and today they closed his chest. The staff at the hospital is amazing, and they're always using the word "great" to describe how he's doing.
I'll try to expand more later, but right now I'm just trying to stay awake till my laundry is done.
My baby is "great" and the Social Worker at the hospital is a blessing.
She found Hubby and I a place at the SF Ronald McDonald house. It has everything we could need. We have an "apartment" with it's own bathroom and a big walk-in closet. There is plenty of food in this amazing, huge kitchen, and there is also reserved fridge and cupboard space for room. And other groups come by and make meals for the residents a few times a week. They have big washers and dryers in the basement (and 35cent cans of Coke...in San Francisco!!) There are electric breast pumps on each floor just like the ones at the hospital. Books, magazines, internet access.
And as long as he's in the hospital we can stay here. . .for free.
Next time you go by McDonalds, please throw some change in that little clear box.
Almost forgot. My BIL brought his laptop this weekend and blogged about what was going on.
http://www.myspace.com/joesilvasr
g-night
Subscribe to:
Posts (Atom)