Hi All,
Gracie was extubated on Monday! We were warned that she may not tolerate it very well and that she may have to be re-intubated right away. She seemed to tolerate it fine and was even taken off of the Hiflow and put onto regular O2. I was able to hear her cry, although her voice is very, very soft I could hear it. I was also able to hold her again, I think I held her a total of 3 times yesterday :) When I arrived this morning Gracie was back on the Hiflow (hi pressure oxygen through a cannula) it's a tiny step back but at least she is not being intubated again. As a matter of fact, they have taken all of the ventilator equipment out of her room. Once she proves that she can be off of the ventilator for good the only things keeping us here would be feeding issues and her antibiotics, which are to treat the staff infection and they are through a iv and she needs to be on them for about 3 more weeks. When that is the case she will be moved to Kaiser Walnut Creek. I heard a rumor that this could happen by the end of this week!
I have some photos to post and the hospital's computer guy is looking for the cord so we can upload them from my camera. Hopefully later today.
Love and Hugs to all,
Jackie
Tuesday, March 13, 2007
Thursday, March 8, 2007
TWO STEPS FORWARD, TWO STEPS BACK...
Well Gracie had a great weekend and by Sunday she was down to a pressure setting of 14 and a rate of 20 on her ventilator.
On Monday her blood gas results returned to the not so great; and on Tuesday her temperature was up to nearly 104. They determined that she has an infection, most likely from her ventilator and they are treating it as pnemonia. Surprisingly they did not make many changes to her ventilator settings, they left the pressure alone and came up on her rate to 30, then brought it back down once her fever broke. Wednesday she looked very swollen and was very sleepy all day. She just didn't look as good as she had been looking the last week or so.
Today we found out that she has a full-blown staph infection. They are using some pretty heavy anti-biotics to fight it. Their concern is that it not get to her heart or pacemaker. Our hope is that the medications she is on will get rid of it before the infection gets worse.
Her vent settings are back up to 40... and any hope that she would be entubated this next week are gone. They have added a couple of weeks to her timeline in order to fight this infection, and then start over with the weening of the ventilator.
On Monday her blood gas results returned to the not so great; and on Tuesday her temperature was up to nearly 104. They determined that she has an infection, most likely from her ventilator and they are treating it as pnemonia. Surprisingly they did not make many changes to her ventilator settings, they left the pressure alone and came up on her rate to 30, then brought it back down once her fever broke. Wednesday she looked very swollen and was very sleepy all day. She just didn't look as good as she had been looking the last week or so.
Today we found out that she has a full-blown staph infection. They are using some pretty heavy anti-biotics to fight it. Their concern is that it not get to her heart or pacemaker. Our hope is that the medications she is on will get rid of it before the infection gets worse.
Her vent settings are back up to 40... and any hope that she would be entubated this next week are gone. They have added a couple of weeks to her timeline in order to fight this infection, and then start over with the weening of the ventilator.
Saturday, March 3, 2007
Countdown
We had our weekly meeting with Dr. Adatia, he is in charge of the PCICU, and he told us that everything about Grace is going great right now. He also told us that they will be trying to take Grace off of the ventilator sooner rather than later...
Now, he is the one who told us last week to expect a rough couple of weeks!
... we looked at each other with mild shock, and he clarified. He wants to take her pressure setting from 16 down to 8 - one point per day - and after that reduce the breath per minute rate to ten (or so) over the next few days. So, the sooner he was talking about is actually about ten days away!
And then, after we relaxed, Dr. Adatia let us know that most babies do not just get off the ventilator easily after being on for as long as Grace has been. He said that we should expect it to be an off and on trial for some time to come... but, I think we'll let Grace have the final word on this.
She continues to look better everyday. The scars from her first surgery are almost all just pink lines now. They are getting smoother all the time... sometimes we go to lunch and when we get back it seems like she has progressed a day.
Jackie got to hold her for the second time yesterday afternoon! With big brother Adam sitting right beside them.
She has an IV line, a feeding tube, and a ventilator and that is all! Most of the tubing and wires and stacked up medications are gone now and she is moving more and more. She got to sleep on her tummy for a big chunk of yesterday.
On Monday her nurse said that they will bump her up to a crib... progress in accomodations.
We have more pictures and will post them soon. Thanks again to everyone out there with a prayer for Grace.
Now, he is the one who told us last week to expect a rough couple of weeks!
... we looked at each other with mild shock, and he clarified. He wants to take her pressure setting from 16 down to 8 - one point per day - and after that reduce the breath per minute rate to ten (or so) over the next few days. So, the sooner he was talking about is actually about ten days away!
And then, after we relaxed, Dr. Adatia let us know that most babies do not just get off the ventilator easily after being on for as long as Grace has been. He said that we should expect it to be an off and on trial for some time to come... but, I think we'll let Grace have the final word on this.
She continues to look better everyday. The scars from her first surgery are almost all just pink lines now. They are getting smoother all the time... sometimes we go to lunch and when we get back it seems like she has progressed a day.
Jackie got to hold her for the second time yesterday afternoon! With big brother Adam sitting right beside them.
She has an IV line, a feeding tube, and a ventilator and that is all! Most of the tubing and wires and stacked up medications are gone now and she is moving more and more. She got to sleep on her tummy for a big chunk of yesterday.
On Monday her nurse said that they will bump her up to a crib... progress in accomodations.
We have more pictures and will post them soon. Thanks again to everyone out there with a prayer for Grace.
Friday, March 2, 2007
It all happened in a week...
The doctors had told us to expect a rough couple of weeks... she is amazing Grace... Her pacemaker wound is healing nice, the medications she was given dissolved the blood clots and helped set her heart beat back to normal! It all happened in a week...
In addition, she got to lay on her stomach for the first time and loved it.
They have found that lowering her beats per minute is making her a much happier baby.
The next big hurdle is the ventilator. She is down to 23 bpm and a pressure of 16. When she came out of surgery she was at nearly 100% support. They are lowering the support ever so slowly, the last two times they tried to lower she fought it. So now I suppose we have to trick her with the ultra slow changes and hope that she tolerates it...
More later... we keep praying for a long, long string of good days like this...
In addition, she got to lay on her stomach for the first time and loved it.
They have found that lowering her beats per minute is making her a much happier baby.
The next big hurdle is the ventilator. She is down to 23 bpm and a pressure of 16. When she came out of surgery she was at nearly 100% support. They are lowering the support ever so slowly, the last two times they tried to lower she fought it. So now I suppose we have to trick her with the ultra slow changes and hope that she tolerates it...
More later... we keep praying for a long, long string of good days like this...
Sunday, February 25, 2007
Grace has a permanent pacemaker.
Grace came out of surgery Friday afternoon. Everything about the pacemaker surgery went extremely well. We did not have access to the internet until we got back to the Ronald McDonald House early this morning.
We were given some pretty dire warnings about what could go wrong with the pacing surgery; so far, none of those warnings have surfaced. But, just as Grace has done before, she surprised us with a completely new, unrelated problem.
While putting the pacemaker in, the doctor noticed her right atrium was in 'flutter'. All of her monitoring could not pick it up. Basically, it means that Grace's right atrium was still beating in pace with the rest of her heart (so everything looked normal); but, in addition to the regular pulse it was beating a second time inbetween the regular beats. This is something that is easy to correct by shocking the heart to pump even faster and it will reset itself to the regular beat.
However, with Grace's condition and just coming out of surgery they were extra careful and performed an echocardiagram to make sure that everything was okay. It was during this that they found blood clots in both her right and left atrium.
So, here is the course of action for Grace:
- give her a few days to recover from the surgery
- get her on medication to resolve the blood clot issue (they started this slowly last night)
- shock her heart back to a normal pace
All in all, she looks great and is doing as well as can be expected. I've said it before - she truly is a fighter!
We were given some pretty dire warnings about what could go wrong with the pacing surgery; so far, none of those warnings have surfaced. But, just as Grace has done before, she surprised us with a completely new, unrelated problem.
While putting the pacemaker in, the doctor noticed her right atrium was in 'flutter'. All of her monitoring could not pick it up. Basically, it means that Grace's right atrium was still beating in pace with the rest of her heart (so everything looked normal); but, in addition to the regular pulse it was beating a second time inbetween the regular beats. This is something that is easy to correct by shocking the heart to pump even faster and it will reset itself to the regular beat.
However, with Grace's condition and just coming out of surgery they were extra careful and performed an echocardiagram to make sure that everything was okay. It was during this that they found blood clots in both her right and left atrium.
So, here is the course of action for Grace:
- give her a few days to recover from the surgery
- get her on medication to resolve the blood clot issue (they started this slowly last night)
- shock her heart back to a normal pace
All in all, she looks great and is doing as well as can be expected. I've said it before - she truly is a fighter!
Friday, February 23, 2007
Hi Everyone,
Gracie Ann was just taken into the OR for her pacemaker surgery. We were told that she had her best night ever last night. When we saw her today she looked better than we have ever seen her. I have a really good feeling that she will have a good outcome from this. We will hear more in a few hours so we will try to post again later. It may be tonight before we have computer access again...
Gracie Ann was just taken into the OR for her pacemaker surgery. We were told that she had her best night ever last night. When we saw her today she looked better than we have ever seen her. I have a really good feeling that she will have a good outcome from this. We will hear more in a few hours so we will try to post again later. It may be tonight before we have computer access again...
Wednesday, February 21, 2007
No surgery today
Gracie Ann's surgery was canceled for today. She got a mysterious rash last night (it's gone now) her Surgeon, Dr. Azaike said that he doesn't want to take her into the OR unless is as close to perfect as she can be. She is on the schedule for Friday, so we will have to wait and see...
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