posted
Oh, I just saw this thread. I'm praying for you too. It reminds me of my tiny baby in hospital at 3 weeks, for heart surgery. I couldn't feed her either. Isn't it awful, Bev, to know that the one thing a mother's instinct says will help the baby the most - provide it with nourishment and antibodies - is unavailable to you?
"It's really bizarre to realize that were it not for modern medicine, my boy would be dead."
I know exactly how you feel. I'm extremely grateful to be living at this time, and grateful for the medical knowledge we've been blessed with. I'll keep praying for you.
Posts: 1522 | Registered: Nov 2005
| IP: Logged |
posted
Yeah, we've had two cases at our daycare and have heard of a bunch of cases around us as well. I'm so sorry to hear that baby Xerxes came down with it. How frightening!
You'll be in our thoughts.
Posts: 1777 | Registered: Jan 2003
| IP: Logged |
posted
It's RSV season. I will keep little baby Xerxes in my thoughts.
---
Edited to add: Just read through the whole thread (had only skimmed when I chimed in above). Oh, good grief. (((mph and bev)))
Good, strong thoughts winging X's way!
And yes, feeding is exercise for babies. During feeding is when weak hearts show up, too, as it is the strongest exercise babies get. If he's struggling this much to breathe, he cannot handle feeding right now. But he will again, soon!
Posts: 14017 | Registered: May 2000
| IP: Logged |
posted
oh, wow, somehow I missed this thread. So sorry about the struggle baby Xerxes is going through, and even though I don't know you guys will be praying for you as well.
Posts: 3149 | Registered: Jul 2005
| IP: Logged |
posted
We heard about this in the hospital when Little Crow was born. His Little Mother is so conscientious about making everyone wash their hands! I do so hope Xerxes will be all right. He's got lots of love and care from our family coming his way. May he grow stronger and greet you with bright baby smiles next time you see him.
Posts: 3141 | Registered: Apr 2000
| IP: Logged |
posted
Update: Xerxes is stable, and they are feeding him again. He's still on the respirator, and will remain so for quite some time.
Posts: 16551 | Registered: Feb 2003
| IP: Logged |
posted
I keep checking this thread every time there is a new post just in case there is an update. My heart is going out to your whole family. I'm relieved to hear that there is some improvement (kaynehara, spit spit spit). Let there please be a complete and speedy recovery.
And strength and courage to the whole family.
Posts: 10397 | Registered: Jun 2005
| IP: Logged |
posted
Me, too. I'm glad they're feeding him again.
Aerin was intubated for 2 weeks, which I believe is pretty standard.
The thing that bothered me most was that they pumped Aerin so full of fluids that she swelled up like a balloon. It didn't bother her at all, but it really got to me. I guess it's because it was something I hadn't seen before - I'd seen her intubated and with IVs and monitors for most of her life, but never swollen.
Posts: 3037 | Registered: Jan 2002
| IP: Logged |
posted
I don't know much about babies, but very ill adults sometimes need extra fluid to keep the blood pressure and heart rate normalized, because the fluids keep leaking into the tissues. End result is patient looks swollen and gains tons of weight. As soon as the health improves the fluid goes back into the vessels and the swelling gradually resolves.
Posts: 1014 | Registered: Jul 2005
| IP: Logged |
posted
Good news! I'm glad he's stable, even though he'll be on a respirator for awhile Prayers and best wishes are with y'all.
Posts: 17164 | Registered: Jun 2001
| IP: Logged |
posted
I got to see Xerxes again today. He's doing much better.
He's responding very well to his feedings, and they've been getting bigger and bigger. They've ramped down the respirator and he's doing some breathing on his own.
The biggest problem is that he's still producing a lot of fluid
Posts: 16551 | Registered: Feb 2003
| IP: Logged |
posted
No real update on Xerxes, but my mother-in-law flew into town this morning to help out. That will be a big help, considering I'm in the middle of crunch week at work.
Posts: 16551 | Registered: Feb 2003
| IP: Logged |
Thanks for keeping us updated. Just wanted to let you know I'm still thinking of y'all. Hope having Bev's Mom around is helpful for you both. Posts: 7954 | Registered: Mar 2004
| IP: Logged |
posted
Tatiana, from what I remember when my kids had RSV (it stands for respiratory syncytial virus *thanks maui babe, I was editing as you posted but you were quicker*). From what I understood, it is the same virus as the cold in adults but it is very dangerous to infants. Once they hit a certain age (I can't remember but it seems around 24 months) that it's not as dangerous.
Glad to hear that Baby X is doing better. Best wishes for continued improvement!
posted
RSV isn't actually the same thing as a common cold virus, but the symptoms are usually mild and almost identical to a common cold in adults. It's usually only dangerous to infants/young kids. The elderly are at risk of a more severe RSV infection, I've just learned.
Posts: 1014 | Registered: Jul 2005
| IP: Logged |
posted
I'm so glad he's doing well (as well as can be expected). It's great that he's doing some breathing on his own. I remember them telling me how many breaths Aerin was doing herself each day. Feeding is always a good sign and the bigger the amount, the better.
You say he's producing a lot of fluid, but what's the consistency? Aerin's started out pretty thick and got thinner as she got better.
My entire family is praying for him and I think about him constantly. I even mentioned him to my pediatrician when Aerin was getting her Synagis shot.
Posts: 3037 | Registered: Jan 2002
| IP: Logged |
quote:The thing that bothered me most was that they pumped Aerin so full of fluids that she swelled up like a balloon. It didn't bother her at all, but it really got to me. I guess it's because it was something I hadn't seen before - I'd seen her intubated and with IVs and monitors for most of her life, but never swollen.
You know, I have been thinking about this. Xerxes has a little roommate who was just taken off his respirator today (he was on for exactly a week) and while he is a big baby, he seems extremely, even disturbingly, plump. I mean, even his head is fat, if you know what I mean.
And I've been wondering if I'm going crazy, but Xerxes seems to be more plump every time I look at him. His cheeks seem very round, and even the skin around his temples is widening. I am assuming that it is the swelling. And yes, I am not thrilled about it.
This:
quote:I don't know much about babies, but very ill adults sometimes need extra fluid to keep the blood pressure and heart rate normalized, because the fluids keep leaking into the tissues. End result is patient looks swollen and gains tons of weight. As soon as the health improves the fluid goes back into the vessels and the swelling gradually resolves.
, however, is very informative and comforting. I guess it is normal and perhaps even good? I know they said at the hospital that this kind of fluid retention can happen on the respirator and on an IV, though I am not entirely clear on why.
Yup, things are stable. I must admit to being a tad bit jealous when I see Xerxes roomie cuddled freely by his mommie now that he is off the respirator. I can't wait to cuddle my baby again!
quote:You say he's producing a lot of fluid, but what's the consistency? Aerin's started out pretty thick and got thinner as she got better.
The secretions are still *very* thick, unfortunately. Posts: 7050 | Registered: Feb 2004
| IP: Logged |
posted
They'll get thinner. With Aerin, there was no change until one day shejust decided to get better and then she sailed through her recovery. It's always been like that with her, but the nurses told me that almost all the RSV babies are like that. Try to remember that things will improve as quickly as they declined, once he gets past the hump.
The swelling does go down pretty quickly after they stop the fluids. They'll probably give him a diuretic to help him flush them out. Aerin had to have new diapers every 45 minutes for about a day, then she was pretty much back to normal.
The hardest thing in the world is not being able to hold your baby. Every instinct is screaming at you to pick her up and comfort her, but you just can't. When you finally do get to hold him, you'll see his stats improve almost the second you pick him up.
I'm praying all the time that he'll soon be back in your arms where he belongs.
Posts: 3037 | Registered: Jan 2002
| IP: Logged |
posted
Mmmm, I wouldn't say the fluid retention is good. It's just something that happens. In healthy younger adults, it has to do with factors such as the amount of salt in the IV and in IV antibiotics and the nutrition level. Most importantly people who are septic with a bacteria have leakier vessels from the infection, causing more swelling and requiring more fluid to keep blood pressure up. Since adults don't usually get critically ill from RSV I don't know if RSV causes leaky vessels or not. In general, whatever the reason, it improves when the patient improves.
Posts: 1014 | Registered: Jul 2005
| IP: Logged |
posted
Right On: The consistency of the lung poop has gotten better, and they're starting to talk about taking him of the respirator and back onto the CPAP.
Right Off: They moved Xerxes to a different room, so now Beverly isn't able to sleep in the same room with the baby.
Posts: 16551 | Registered: Feb 2003
| IP: Logged |
posted
Slight correction: the ventillator is currently working as a CPAP (no breaths given, only soft, constant pressure to make inhaling easier.) So, when they take him off of the ventillator, he won't need to go on CPAP. He may need to stay on oxygen, though.
The cool thing is that he isn't on oxygen at all right now. If he needs it later it will be because the mucous is building up in his lungs again. With the ventillator, it is really easy to suction his lungs. When he is off, they will be limited to suctioning through his nose.
That is why they are reeeeally hesitant to take him off the ventillator unless the mucous slows down. It *is* thinning, though, which is a good start.
Yeah, I'm bugged about the room change. They moved me for the convenience of the respiratory therapist. I used to be rooming with another baby who was on a ventillator, but since that baby is off of it, he doesn't need a resp therapist anymore. There was another room with a baby who desperately needs the resp therapist, so they moved me in there In fact, I haven't even been moved into my sleeping room yet, so for the last 3 hours or so, I was "homeless". I am pretty grumpy--an introvert with no place to hide away. :grump grump:
Posts: 7050 | Registered: Feb 2004
| IP: Logged |
posted
Oh, I am really rooting for the little one to keep getting better and better all the time. Stinks about not being able to sleep with him, when I know it is wrenching to be away from him.
Posts: 10397 | Registered: Jun 2005
| IP: Logged |
posted
It's wonderful that he's improving so quickly. I'm not surprised that they want to keep him tubed for suctioning - they can do it so much more effectively that way. Aerin's stats always got immediately better after they suctioned her.
I'm surprised that you have roommates. Is the hospital very small or is it just very full? They should do some respiratory therapy after the baby is extubated, just not round the clock. Aerin got some right up until she was discharged. Every 2 hours the therapist would pound on her (gently) with this little rubber cup thingy. She loved it. It kept the mucous loose and helped her to breathe better.
Posts: 3037 | Registered: Jan 2002
| IP: Logged |
Printer-friendly view of this topic
![[Frown]](frown.gif)
I will keep little baby Xerxes in my thoughts.![[Smile]](smile.gif)
![[Kiss]](graemlins/kiss.gif)
![[Mad]](mad.gif)
They moved me for the convenience of the respiratory therapist. I used to be rooming with another baby who was on a ventillator, but since that baby is off of it, he doesn't need a resp therapist anymore. There was another room with a baby who desperately needs the resp therapist, so they moved me in there In fact, I haven't even been moved into my sleeping room yet, so for the last 3 hours or so, I was "homeless". ![[Wink]](wink.gif)
I am pretty grumpy--an introvert with no place to hide away. :grump grump:
