We have been in the hospital for about a day now and there are
no answers. The docs believe they ruled out a bacterial infection,
her x-rays came back clean, so the lungs are clear, yet Izzy's sats
drop drastically when she moves and is awake. On 2 liters of
oxygen, her sats drop to low 90s if she is sitting up playing. As
she slept last night, if her nasal canula came off, her sats were
mid-80s asleep. They are waiting for the results of the viral
studies and will do an echo later today to try to rule out the
heart. It is all very confusing and very scary. At least if her
lungs were full, we'd know what was going on. The docs seemed just
as perplexed as we are.
This entire admission was a shock to the system. Izzy went to see Dr. Doshi for a routine follow-up yesterday. We thought she had a sinus infection since that was what Dr. Richardson determined last Friday. She had a rough night Monday night, but it was par for the course. Dale was staying home with her to make sure she got good sleep in her own bed Tuesday. We never expected that her sats would be in the 70s. She gave no indication. The docs believed she was still just used to such low oxygen saturation from pre-surgery. So, the belief is that her body is just worn out from fighting off infection after infection and trying to heal itself. I don't like that answer and I could tell that Dr. Doshi and Dr. Cutler didn't like it either. One thing they mentioned about the x-ray was that her heart looked large. That is the second doc to mention that in the last couple of weeks. I going to ask Dr. Cutler about that this afternoon when they do the echo.
All of this is just beyond scary. We knew the survival rate for Izzy's actual surgery was high percentages (around 99% survival of surgery). Its the recovery that is the hard part. Well that, and long term maintenance. Last night, as I sat at home after Phinney was in bed and Dale was with Izzy, I stupidly did what I've always managed to prevent myself from doing. I searched the web for long-term prognosis for kids like Izzy. Today, the long-term prognosis is fairly good they think, but they don't know. The surgeries that have helped to save Izzy's life are fairly new and were not performed on babies who would be adults now if they made it this far. So, they don't really know how long any of these fixes will keep her with us. And of course, at end of the chance of survival rate, they listed things that could account for less of chance, such as DiGeorge's Syndrome, needing to replace conduits, etc. Everything seems more real. I niavely believed if she just made it through this full-fix, we would be nearer that light at the end of the tunnel. I've read so many stories about other kids with ToF and all their parents say its been x number of years since the fix and my child is happy and playful. I always knew Izzy wasn't like that since she doesn't just have ToF, but I hoped so hard she would be like that. Maybe she will be, but getting there is really hard.
My beautiful, wondeful, amazing, remarkable baby is finally sleeping soundly. She had a restful night with Daddy, but since I've been here, she's been overly tired and refusing sleep. She is definitely breathing very, very hard, but her sats are 99 with the 2 liters of oxygen. Her heart rate is good and her respiration is good. Monday night, I counted at one point and her respiration rate was 60 breaths a minute. That is crazy.
Thank you all for your support and remember, if you have babies, hug them tight and hug them often.
Mel
This entire admission was a shock to the system. Izzy went to see Dr. Doshi for a routine follow-up yesterday. We thought she had a sinus infection since that was what Dr. Richardson determined last Friday. She had a rough night Monday night, but it was par for the course. Dale was staying home with her to make sure she got good sleep in her own bed Tuesday. We never expected that her sats would be in the 70s. She gave no indication. The docs believed she was still just used to such low oxygen saturation from pre-surgery. So, the belief is that her body is just worn out from fighting off infection after infection and trying to heal itself. I don't like that answer and I could tell that Dr. Doshi and Dr. Cutler didn't like it either. One thing they mentioned about the x-ray was that her heart looked large. That is the second doc to mention that in the last couple of weeks. I going to ask Dr. Cutler about that this afternoon when they do the echo.
All of this is just beyond scary. We knew the survival rate for Izzy's actual surgery was high percentages (around 99% survival of surgery). Its the recovery that is the hard part. Well that, and long term maintenance. Last night, as I sat at home after Phinney was in bed and Dale was with Izzy, I stupidly did what I've always managed to prevent myself from doing. I searched the web for long-term prognosis for kids like Izzy. Today, the long-term prognosis is fairly good they think, but they don't know. The surgeries that have helped to save Izzy's life are fairly new and were not performed on babies who would be adults now if they made it this far. So, they don't really know how long any of these fixes will keep her with us. And of course, at end of the chance of survival rate, they listed things that could account for less of chance, such as DiGeorge's Syndrome, needing to replace conduits, etc. Everything seems more real. I niavely believed if she just made it through this full-fix, we would be nearer that light at the end of the tunnel. I've read so many stories about other kids with ToF and all their parents say its been x number of years since the fix and my child is happy and playful. I always knew Izzy wasn't like that since she doesn't just have ToF, but I hoped so hard she would be like that. Maybe she will be, but getting there is really hard.
My beautiful, wondeful, amazing, remarkable baby is finally sleeping soundly. She had a restful night with Daddy, but since I've been here, she's been overly tired and refusing sleep. She is definitely breathing very, very hard, but her sats are 99 with the 2 liters of oxygen. Her heart rate is good and her respiration is good. Monday night, I counted at one point and her respiration rate was 60 breaths a minute. That is crazy.
Thank you all for your support and remember, if you have babies, hug them tight and hug them often.
Mel
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