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5/1/06
David needs another miracle
David's tracheal aspirate came back positive for a rare bacteria called burkholderia cepacia. It's so rare the nurses hadn't ever heard of it. The doctor tells me that it is nearly impossible to kill. There is only one antibiotic that it is sensitive to (Amikacin) and the doctor said this strain of bacteria is able to change in order to be resistant to antibiotics.
The doctor had "the talk" with us today. Where we need to think about what we are doing this for. Dr. Levy seems to think that if David codes again we should keep him comfortable and let him pass.
I don't know if God has a limit on how many miracles he'll give one family. I certainly hope not. Because we've had our fair share. What I'm asking you all for, is to pray for yet another one.
BTW, I don't want to talk about this. The words are too painful to say outloud. So noone get offended if I "haven't told you" about it or whatever. I'm just posting this so everyone is aware of the situation.
Also - we don't know where he got this bacteria. I guess it doesn't really matter, but I've read several articles that say you can get it from infected mouthwash. They use mouthwash on David.
HERE is another article on this bacteria.
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5/2/06
David Update 05-02-06
David is still doing okay. He's needing a little more oxygen to keep his oxygen saturation up. His heartrate is all over the place, it will fluctuate from 200's down to 60. One minute he'll be running a temperature, the next he'll be too cold. Last night they couldn't sedate him. The brainwave thingy wouldn't go below 79 - he wants it in the forties. They will be repeating the aspirate soon to find out if the antibiotic is working or not. Let's see what else....
I demanded they stop using the mouthwash that they were using since I found that article that said a brand of alcohol free mouthwash contained this bacteria. I don't know that's where he got it from, but I suppose it's possible. And since it isn't really necessary that his mouth is minty fresh, I'm sure he'll be fine without it. I also found other antibiotics on a website said to kill this bacteria that they hadn't tested for, they are looking into it for me.
OH! And he FINALLY pooped! He's getting 20cc's an hour of "GoLytly" through his GTube to help him have bowel movements. Hopefully he'll get the remaining barium out of his intestine so they can start feeding him again. They have been giving him TPN (which is an IV nutrient) for a while now, and they have to start only giving it to him 18 hours a day to give his liver a rest. Hopefully his tummy will start working again soon.
Here are the latest pictures of David:
That thing on his forehead is the BIS thing I told you about - measures his level of awakeness. Here is the monitor that I set off while taking these pictures (oops)
And just to throw these in here, here's my shy husband (I was trying to take a picture of him because he looked so handsome...but he was being camera shy)
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5/3/06
I just got off the phone with the doctor
And his words were "Although the conversation we had the other day was serious, David's looking better today, and there's still hope that we'll be able to get him off of the ventilator and you guys will take him home."
They repeated the trachial aspirate today, we'll have preliminary reports on Friday. He's put the CT scan off, it was supposed to be for today. The reason he wants another one is because his heart rate is all over the place and it's taking massive amounts of medications to sedate David. (I'm not exactly sure what that means, but that's what he told me) But he said that the CT scan isn't going to change the course of treatment today so he'd just as soon put it off for now. And they started giving him 5ccs of formula an hour to "bathe his gut"...whatever that's supposed to mean. And he said if there are no bumps in the road he hopes to start weaning his vent in 1 1/2 - 2 weeks.
At any rate, I hate to get too excited just yet....but it appears your prayers may be working....don't stop now though! Keep them up until he's back here at home where I can bite his little cheeks.
BY THE WAY - David is NINE months old today!!! Happy Birthday, little man!!!
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5/5/06
David and his new best friend!
I can't wait for him to wake up and meet him!! He's been sleeping since Amber gave him to us!! It kinda reminds me of the Velveteen Rabbit...how he slept with the little boy when he was sick. :) Anyways, here's David hugging him (and no, he didn't do that himself, he's still on the paralytic drug, but when I came in one day the nurses had put him like that and it was SO sweet)
David's crazy hair - see that little strand? I CANNOT get that piece to lay down!!
And finally, this is David's inspirational board. It's not complete with all the cards I've recieved for him, but most of them are up there.
As far as an update, there really isn't one. Dr. Levy says no change is good news at this point. He says that if there are no setbacks he hopes to start weaning the vent in two weeks. He says we'll have to go very slowly. He also said that there's a good possibility that David will spend his first birthday in the hospital :(
BUT that's okay!! Because we can have a party later! And if that means I'll get to spend many more birthdays making it up to him, then it will be all worth it! Besides, I can't help but wonder if he's exaggerating...he's known to do that ;)
And last but not least, I came across some video that was taken of David in December. He was so little!!!!
VIDEO ONE
VIDEO TWO
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5/7/06
Update for May 7th
On Wednesday they did another trachial aspirate on David too see if the antibiotics were working or not. They did find bacteria in there - BUT it wasn't the same bacteria as before. It was a WAY more treatable bug. This could mean a couple of different things:
1. it was misdiagnosed the first time - he never had B. Cepacia. (that's what I'm hoping for)
2. the antibiotics killed it really fast. OR
3. the second trachial aspirate was wrong. (I'm hoping this one is NOT true)
But I'm treating this like it's good news. They've added another antibiotic to the other two that's he's already receiving to kill this infection. He's doing really well - they were able to wean his vent by four this morning (he's down to a rate of 32 from a rate of 36, meaning the vent gives him 32 breaths every minute), even though Dr. Levy said they wouldn't wean him for two weeks - and that was barring any setbacks.
Also, they've reduced his Norcuron (the paralytic drug) so he's able to move a teeny tiny bit, but he's still on the oral sedatives so he's still comfortable and sleeps almost all the time. Since they reduced his Norcuron they've removed that BIS thingy that measures his brainwaves to see if he's awake.
He's up to full feeds now (40cc's and hour) since last night, and he's POOPING! Which is REALLY good news - now he can get the nutrition that he needs to build new lung tissue. Let's hope that it continues.
So - today was all good news.....hopefully he'll keep it up!! Thanks for all the prayers, guys!
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5/10/06
5-10-06
They are still weaning David off the vent, they've actually gone quicker than I'm comfortable with, I'm just scared that they will end up having to go back up even higher than before. Dr. Levy said about a week ago that barring any setbacks they would begin weaning the vent in two weeks, and they would go down by about one a day. Well, Sunday and Monday they went down by four a day, then Tuesday and Wednesday they went down by two a day. So he's down to a rate of 24 breaths per minute. He's still doing okay, though, so we'll see. I hope I'm wrong.
He's awake more and more now, which is nice because I feel like I am interacting with him instead of just watching him sleep. I want to hold him, though. But I know that it's not worth the risk of extubating him. So I'll wait. The RT last night said she'd think he'd be off the vent by monday? I doubt it - but maybe she's right. Once he gets off that vent though, I plan on holding him ALL THE TIME. Can't wait. And then he can wear clothes again!!!
But, he's gained FIVE pounds since we've been in there (he's up to 18lbs, and 26 inches) - so he may have outgrown all his 3-6 month clothes? I'll have to wait and see. They've started putting him in size THREE diapers. He was in size ONE when we went in there. He completely skipped size two....hopefully he'll still fit into size two when he comes home, though, because that's all we have :)
I gotta say though, I'm a little bummed that our first Mother's Day will be spent in the hospital.... :(
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They had to stop David's feeds AGAIN. His tummy got all big and hard this afternoon. So they stopped his feeds and put him on IV fluids to prevent dehydration.
She said it was probably because they had stopped his Reglan yesterday and upped his concentration of formula from 20 cal to 24 cal. She said the combination of the two is probably what caused it to happen.
UGH! When is his tummy going to work right again??
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5/12/06
David gave us quite a scare tonight!!!
BUT HE'S OKAY NOW....
So about nine pm or so, David decided that he only wanted to sat about 80. And he wouldn't come up. They even put his oxygen up to 100% and he STILL wouldn't come about 81. So they came in and gave him a breathing treatment....and then they switched his position...and then they vented his GTube, thinking that he had gas...so finally they called the doctor.....you'll never GUESS what he said.
He told them to go back up on the vent. What did I tell you? I knew they were going too fast! So they had to go back up to a rate of 28 (he was on 24)...and about twenty minutes later he was satting 100.
The reason this was so scary was because that's exactly how it all started the night that he coded. So I called my husband and everything, and he left work to come up there, and then it turned out to be nothing. WHEW.
:) Just thought I would let you all know how my night went!
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5/13/06
I need advice
So as you know, every month I take a special picture and have it printed out and sent to friends and family. Well, this month is a little difficult because I'm struggling with whether or not I want to do it since he's on the vent. On one hand, I know that it's difficult for the common person to see a baby on a ventilator. On the other hand, when David gets bigger, I don't want him to ever think that I was embarrassed about how he looked, at ANY time, but especially when he needed me the most. So I don't know what to do. I need your advice. Tell me what you think about this picture:
It's an okay picture, you can tell that he's on the vent, but you can't really SEE it, know what I mean? Ug - I don't know what to do.
But here are the rest of the pictures I took this week. I haven't been taking as many lately. I miss it!! I loved taking pictures of David. But it's tough because they're all the same. He's not wearing any cute outfits, he's not doing anything different. I guess I'm just a little bummed tonight....
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5/16/06
OK lets see - what have I not told you?
David had a rough couple of days there for a little while. First, they had to stop his feeds again because his tummy got all big and hard again, and he stopped having bowel movements. They had just stopped his Reglan because he was having dirty diapers all day long, and they were worried that it would cause dehydration. So anyways they stopped his feeds and started the Reglan again.
Then they did a test on his small intestine - since we already know there's not blockages in the large intestine, they decided to see if there was a blockage in the small intestine. They poured some sort of fluid in through his G button (not barium, he had a hard time passing that last time, but I can't remember what she called it), and took a bunch of Xrays. The nurse said they took so many xrays she wouldn't be surprised if he glew in the dark now haha. They didn't find any blockages (after scaring me half to death by taking almost four hours when I had been told it would take about twenty minutes - whew!), and they just decided that his tummy moved slow. So they'll have to find a medicine that will work for that.
At the same time all this was going on he was really scaring me because he wouldn't sat good - they'd have him on 100% oxygen and he'd only be satting like 79-81. (Keep in mind that anything over 60% oxygen burns lung tissue, and you're normally supposed to sat upper 90's)...so that was really scary for a little while. But then when his tummy started working again his lungs did too - so they must be related somehow. Now he's back on 40% oxygen (which is the lowest they'll go) and he's satting upper 90's - they've even been able to wean his rate down to 25. WHOO HOO!
So I had a pretty good Mother's Day. I slept in till eleven, then went and spent time with what I like to call my mother's day present from God ;) Gave my family their gifts from me, and got a necklace and money from them. Then I had to work, which sucked, but that evening Javier took me out to dinner. We intended on going to Johnny Carino's but got out there too late and ended up at Hooters. How romantic right? :rolls eyes: But it was pretty fun.
OH - and here's what I decided to send out for May's pictures.
Anyways, now they have David on a chronic wean on the vent, which means they'll go down by one every night at midnight. Last night they went down to 24. This means that if there are NO setbacks he'll be off the vent in two weeks. BUT you all know how that goes. And his tummy is getting big again so they stopped the feeds (AGAIN GR) and are testing him for a thyroid disorder. It didn't ever occur to me to tell them, but when David was first born the tests that they do on every baby came back and I got a letter that said he had a thyroid disorder. But the NICU doctors said that they were often inaccurate so they'd draw again...and then I pretty much forgot about it.
Yesterday David was cracking me up. I was putting some chapstick on his little lips and he kept licking it - it was SO cute. I tried to catch it on camera:
David also made me cry yesterday - nothing in this world could possibly make me sadder than him crying and me not being able to pick him up. He's more awake now and so sometimes he cries. Literally breaks my heart. But here's some sweet pictures - he's holding Big Birds hand!
Sweet kid
Just some of the equipment that is being used:
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5/20/06
Pictures and David Update!
David is doing really good!! He's down to a rate of 21 - they're going down by one a day now. When he gets to 10 or under is when they'll take him off the vent! And they are starting to think about weaning his sedation so that he'll start breathing on his own more and more...he'll have to be able to do that in order to come off the vent (obviously!).
And he's up to 20ccs of formula an hour - they're going up reaaaaaaaaaally slow this time - only by 5ccs every 12 hours, to make sure he tolerates it.
He's awake more and more now - and it's pretty fun, except of course like I mentioned before when he cries - that absolutely breaks my heart. I told him no more crying till he comes off the vent & I can pick him up!! Anyways, here are the latest pictures, and two videos!!!
Holding Mommy's hand:
Another friend, the Ronald McDonald Bear - we call him Ronny.
And of course, the videos - not very exciting, but he was awake...
VIDEO ONE
VIDEO TWO
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5/23/06
Another Update
David is down to a rate of 19 on his vent, still at 40% oxygen. They changed it from going down one a day to one every other day, so it's gonna go a little slower, but I'd certainly rather them go slow and it take a little longer then go too fast and end up having to be put back on it after being taken off.
His tummy is doing okay, they've had to go up really really slowly - only 5ccs every 24 hours, and he's up to a rate of 35 right now. I believe that 40 is full feeds, I'll have to ask to make sure that's still accurate. We're still wondering if it's not the sedation that's causing the problems, since he was tested for the thyroid disorder, and it did come back showing that his T4 is low (whatever that means) but the medicine isn't making any difference with the function of his tummy. But they did start to wean his sedation a little today, so maybe once that is weaned off, his tummy will be ok.
OH!!!! I almost forgot!!! David has two sharp little bumps on his bottom gums!! You know what that means!!! I wonder how long they'll take to poke through?
OK - here are the latest pictures.
David's latest surgery scar - look how nice it looks!!! There's just that one little part that doesn't look like it healed quite as well as the rest, but the rest looks great!!!
David's new thing is to suck on the side of the ET tube - he's really been trying to put his hands in his mouth, but he's tied down (not inhumanely like I know that sounds, just enough to where he can't reach his mouth - but can still move his arms). It's unusual for David to want to suck on anything - which is why we have the GTube.
David got his old mobile back - the same one he had in the NICU!! haha - he's rotten ;)
And a couple of pictures from the storms we had the other night - these were taken from the hospital - you can see forever from there.
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5/26/06
Hmmmm....I get confused as to what I've posted and what I haven't sometimes, so bear with me if I post something more than once.
David is down to a rate of 18 on the vent, and is doing really well, respiratory wise. And he's up to full feeds (45ccs and hour) and is tolerating it well, but he still isn't having bowel movements, so they are giving him suppositories every 12 hours until he does.
I have a feeling, though, that he's getting an infection. I hope I'm wrong, but I've noticed that I seldom am when it comes to these sorts of things. Just a gut feeling, really. He's been running a low grade temp (anywhere from 99-101) and his heartrate is elevated (anywhere from 180-200 when it's normally about 150). So they drew blood cultures tonight. I'm okay with him having an infection (well, as okay as you can be about something like that) as long as it's not that bacteria that he had a while ago. Or anything else that's not treatable. So if you could pray that it's something weak, please?
Anyways, I've been posting about how sad it makes me when I see him crying and can't pick him up. Isn't this the saddest thing you've ever seen?
So tonight he was having a fit and I leaned over and was whispering in his ear - telling him to calm down, etc....and he finally did...but everytime I stopped whispering he'd start crying again - haha and I ran out of things to say so I told him about what I was gonna get from the grocery store later :P
It was kinda sweet :D
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5/29/06
Happy Kid!
David was such a happy baby the last couple of days!! He was just smiling at everyone! Of COURSE, when I got the camera out to try and catch it on film, he stopped smiling...typical David :) Anyways, here are the pictures that I did manage to get:
Oh, so dramatic!
He LOVES to have his head rubbed!!!
As far as an update, he's down to a rate of 16 on the vent and doing really well respiratory wise. His tummy is still being crazy, though. It'll work for a while, then stop. They've had to stop his feeds for a little while two nights in a row now. It's so frustrating because we don't know what's going one. But the nurses seem to be convinced that once he gets off the vent and moving around it'll fix itself. Just seems like everyone has their own theory, and they all make perfect sense, but they never pan out.....UGH!
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