Today I went to the hospital by myself. When I got to the hospital, Erica was sleeping but seemed to be doing well. They were able to get her o2 down to .7 L/min
Dr. Essalah came in and asked how I was doing. I replied with "She seems to be doing good, so I think I am going pretty good." He walked out, ( I looked at the nurse confused), he grabbed a chair and sat down next to me and said " I spoke with Dr. Kakadakar and I am sorry but it's not good news. The stenosis is back even more then 2 weeks ago and he's certain it's in her lungs." He told me that it's now in all four of her veins (the forth vein is only slightly stenosis'ed) and that he's so very sorry and he doesn't want to say this but "there's nothing more we can do for her, I very sorry"
I understood but needed to ask those dreadful words. So I ask the one question no mother or parent ever wants to ask or hear the answer to....
So what are you tell me?... Is she dying?... Is she going to die?
He replied "I am so sorry, but yes she is!"
Everything was spinning so fast I didn't know what to do, all I knew was that I needed Dave and he needed to know, he needed to be here!
Friday 30 March 2012
Tuesday 27 March 2012
Another bad phone call
March 27th
We got call this morning, as Erica had a horrible night/morning, and was transfered into the MPICU at 3:00am. She wasn't doing well at all. Dr. Essalah was called in at 2:00 am and he said she looked so bad and so did her blood gases (o2 stats of 16), they couldn't get her stats up, he said that he was temped to intubate her again. She eventually "passed out". She had a rough day with multiple episodes of her "spells" and her o2 was increased again to 2 L (She was able to be weaned down to 1L) Towards the end of the day she was able to be weaned down on her o2, and started to turn around again.
March 28th
Erica had a pretty good day today, Her o2 is now at 1L. and she only had 2 little spells. She was playing a bit today was well.
We got call this morning, as Erica had a horrible night/morning, and was transfered into the MPICU at 3:00am. She wasn't doing well at all. Dr. Essalah was called in at 2:00 am and he said she looked so bad and so did her blood gases (o2 stats of 16), they couldn't get her stats up, he said that he was temped to intubate her again. She eventually "passed out". She had a rough day with multiple episodes of her "spells" and her o2 was increased again to 2 L (She was able to be weaned down to 1L) Towards the end of the day she was able to be weaned down on her o2, and started to turn around again.
March 28th
Erica had a pretty good day today, Her o2 is now at 1L. and she only had 2 little spells. She was playing a bit today was well.
Monday 26 March 2012
Another Bad Spell
Monday March 26th
For the past few weeks Erica seemed to be having these "Spells" were she would have these pain cries, and be unconsolable, and with these spells her breathing would get rapid and her heart rate would jump up, and she would need her oxygen increase as her stats would drop. We couldn't do anything but try to comfort her and she would basically pass out because she would play herself right out! A completely helpless feeling on my behalf. You feel useless that you can't comfort her, or take what ever was causing her discomfort away, and knowing that she had health issues, I couldn't help but think the worse. With everything that's been going on all her "symptoms" were the same as before she had her surgery, and I could help that with each passing day that it seems to be getting worse and worse that what was going on wasn't good! Every time she was admitted or see the Dr.'s in the ER it was always, she's fine she's just got a virus that will have to run through, there was no dr.'s that said ok to put your mind at ease we'll do an echo or x-ray. I was starting to think she may be colicky or be lactose intolerant. Or something else much worse was going on. I couldn't help but think that these "spells" were mini heart attacks of some sort, that it wasn't "just a virus"
Well last night Erica was having a hard time keeping her stats up and her heart rate down. She's been in-drawing more and more with each passing day. Throughout the night I would continue on turning up her oxygen as she would loss saturation and her heart rate was starting to increase into the 150-160 beats per min. While sleeping.
First thing in the morning Erica was going worse and then she had another "spell" She started to cry painfully and her heart rate increase to the 200's and her oxygen saturation went into the 60's. We cranked her up to 3 L. As I was trying to calm Erica down a bit Dave was getting her car seat and stuff ready as she needed to go to the hospital however we didn't know how we were going to take her as our portable o2 tanks wouldn't go as high as 3 L it would only go to 2 L. I was finally able to settle Erica a bit to get her o2 down to 2 L and we took off. I had called Dr. Essalah's office and informed him of what was going on and he was meeting us in Emerge. Once we got there Erica had calmed down quite a bit, she was doing so well we thought we would be sent back home. Dr. Essalah took a look at her and she got more blood work and swabs for infection and such, and he wanted an X-ray done as he notice a decrease in her left lung. Once we got the X-ray back it had shown that Erica had Pnumonia, so she was admitted to the Pediatric Ward (4F) and was started on I.V medication for the phenomena and her lasix was increased.
For the past few weeks Erica seemed to be having these "Spells" were she would have these pain cries, and be unconsolable, and with these spells her breathing would get rapid and her heart rate would jump up, and she would need her oxygen increase as her stats would drop. We couldn't do anything but try to comfort her and she would basically pass out because she would play herself right out! A completely helpless feeling on my behalf. You feel useless that you can't comfort her, or take what ever was causing her discomfort away, and knowing that she had health issues, I couldn't help but think the worse. With everything that's been going on all her "symptoms" were the same as before she had her surgery, and I could help that with each passing day that it seems to be getting worse and worse that what was going on wasn't good! Every time she was admitted or see the Dr.'s in the ER it was always, she's fine she's just got a virus that will have to run through, there was no dr.'s that said ok to put your mind at ease we'll do an echo or x-ray. I was starting to think she may be colicky or be lactose intolerant. Or something else much worse was going on. I couldn't help but think that these "spells" were mini heart attacks of some sort, that it wasn't "just a virus"
Well last night Erica was having a hard time keeping her stats up and her heart rate down. She's been in-drawing more and more with each passing day. Throughout the night I would continue on turning up her oxygen as she would loss saturation and her heart rate was starting to increase into the 150-160 beats per min. While sleeping.
First thing in the morning Erica was going worse and then she had another "spell" She started to cry painfully and her heart rate increase to the 200's and her oxygen saturation went into the 60's. We cranked her up to 3 L. As I was trying to calm Erica down a bit Dave was getting her car seat and stuff ready as she needed to go to the hospital however we didn't know how we were going to take her as our portable o2 tanks wouldn't go as high as 3 L it would only go to 2 L. I was finally able to settle Erica a bit to get her o2 down to 2 L and we took off. I had called Dr. Essalah's office and informed him of what was going on and he was meeting us in Emerge. Once we got there Erica had calmed down quite a bit, she was doing so well we thought we would be sent back home. Dr. Essalah took a look at her and she got more blood work and swabs for infection and such, and he wanted an X-ray done as he notice a decrease in her left lung. Once we got the X-ray back it had shown that Erica had Pnumonia, so she was admitted to the Pediatric Ward (4F) and was started on I.V medication for the phenomena and her lasix was increased.
Saturday 3 March 2012
Not Growing as hoped
Our first couple weeks home, was great! However Erica started to slowly refuse to eat her bottle. We have been going into Pediactric Out-patients twice a week for blood pressure checks, oxygen saturation check, and weight checks. If Erica couldn't continue on gaining weight nicely she would have to be re-admitted to the hospital, so weight gain was extremely important. However within nearly two weeks Erica hadn't gained anything.
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