Last update for Shunt Revision #4
Nov 9, 2015 16:44:44 GMT -5
Post by motownthrowdown on Nov 9, 2015 16:44:44 GMT -5
11/10 pre-surgery.
Three separate doctors and anesthesia people came in and all of them asked if she's ever had issues coming out of sedation. The seizure like activity is not in her fucking chart. They just took her back to get her sedation and iv and everything. I really don't have confidence in these people. And we mentioned that single room again and they said the hospital is 80% full. I may have said, good, that means 20% are empty. Trying to keep the rage factor down so we aren't pegged as the ass holes right away. I'm willing to go there in a nanosecond if needed, but I'd prefer to try being nice.
11/10 surgery: everything went smoothly. They are taking her to recovery and we can see her soon.
11/10 recovery
She was fussy coming out of sedation do they didn't call us back for 40 minutes, until dh asked the desk wtf was taking so long. They took us up to the room. We have goddamn roommates. Showed the isolation letter to the charge nurse, who happened to be in the room. She claims they are full, but is going to see if there are other rooms on other floors. There's an old guy, a grandpa, I'm guessing, who is visiting the other kid and sounded stuffed up.
11/10 evening
Roommates are discharged and gone. A is still sleeping off her sedation meds. Everything looks great in terms of the new shunt-her fontanel is back to draining into a dent (PSA dented fontanel is dehydration in normal babies). She's been sleeping since we got up here 5 hours ago but they said that's ok, babies come out differently and slower. Night nurse came in to go over her chart with us and had to go straighten it all out. It was mixing this visit with last time so it was calling for EEG and stuff.
I can't wait to go home.
11/11 5am
A slept the whole night, not surprising since she's still kind of meh from sedation. She slept from the end of her surgery yesterday until about 6pm, took 2 ounces of Pedia lite (baby Gatorade? Apparently it's weird that I don't know what this stuff is) and then 4 ounces of BM about two hours later when she woke up again. The bottle of BM was funny to watch because she's all bandaged up and they wrapped her in a sleep sack, and she's just drinking the bottle in this very quiet, dignified fashion. Then she went back to sleep and is now 5am.
Since she's only had 6 ounces of fluid by mouth in like 12 hours, I'm a little concerned that they are going to keep us another night. She's on an Iv, so she is getting SOME fluids. I think once she eats some more and pees a couple times, we'll be able to go.
Thank you for all the hospital related support here and on fb. I feel like I have to fight two battles at this hospital: one of getting through her surgeries and the second of keeping her safe afterward. The roommate thing really feels like entitled brat whining sometimes, because what's the big deal, right? No one wants a roommate. But not everyone has an immune compromised preemie being hospitalized for her 4th total brain surgery, second one in two weeks. I hate having to fight with medical professionals because I feel like I should be able to trust them and trust that they understand our situation. I hate the feeling of distrust and suspicion that this place is growing in me with regard to doctors and nurses. I feel like I know more about her medical needs than they do and that scares me. I mean, yes I spent three months learning about preemies in the nicu and yes, I've done tons of research about preemies and shunts and stuff, but they went to medical school! For pediatrics and neurology stuff! If any subsection of kids is going to have a shunt, the odds are pretty high that kid will have been a Preemie. Maybe learn about your demographic and the other health challenges they face in general.
11/11 afternoon. Last update
Neuro checked her out this morning and everything looks good. We were discharged around noon and now I get to decontaminate everything that went to the hospital.
Thanks for the prayers and for listening to me bitch. It's so nice to have a place to vent.
Special thanks to all the medical pros for the advice. I think our plan for next time, although hopefully we won't be back soon, will be to request to speak to the attending doctor. We can explain everything, show him the letter, and ask for no roommates. I thought that if the charge nurse was presented with our request (which we did very politely and respectfully, until she brought up the honor system bullshit), she would either do it herself or bring it up to the person who was able to make that call. I feel like she let the issue end with her decision, rather than refer us to the person who actually decides on isolation.
A is sleeping, since she's blown up 3 diapers and soiled all of her clean clothes. I'm so happy to be home and that I have my happy baby back!
Three separate doctors and anesthesia people came in and all of them asked if she's ever had issues coming out of sedation. The seizure like activity is not in her fucking chart. They just took her back to get her sedation and iv and everything. I really don't have confidence in these people. And we mentioned that single room again and they said the hospital is 80% full. I may have said, good, that means 20% are empty. Trying to keep the rage factor down so we aren't pegged as the ass holes right away. I'm willing to go there in a nanosecond if needed, but I'd prefer to try being nice.
11/10 surgery: everything went smoothly. They are taking her to recovery and we can see her soon.
11/10 recovery
She was fussy coming out of sedation do they didn't call us back for 40 minutes, until dh asked the desk wtf was taking so long. They took us up to the room. We have goddamn roommates. Showed the isolation letter to the charge nurse, who happened to be in the room. She claims they are full, but is going to see if there are other rooms on other floors. There's an old guy, a grandpa, I'm guessing, who is visiting the other kid and sounded stuffed up.
11/10 evening
Roommates are discharged and gone. A is still sleeping off her sedation meds. Everything looks great in terms of the new shunt-her fontanel is back to draining into a dent (PSA dented fontanel is dehydration in normal babies). She's been sleeping since we got up here 5 hours ago but they said that's ok, babies come out differently and slower. Night nurse came in to go over her chart with us and had to go straighten it all out. It was mixing this visit with last time so it was calling for EEG and stuff.
I can't wait to go home.
11/11 5am
A slept the whole night, not surprising since she's still kind of meh from sedation. She slept from the end of her surgery yesterday until about 6pm, took 2 ounces of Pedia lite (baby Gatorade? Apparently it's weird that I don't know what this stuff is) and then 4 ounces of BM about two hours later when she woke up again. The bottle of BM was funny to watch because she's all bandaged up and they wrapped her in a sleep sack, and she's just drinking the bottle in this very quiet, dignified fashion. Then she went back to sleep and is now 5am.
Since she's only had 6 ounces of fluid by mouth in like 12 hours, I'm a little concerned that they are going to keep us another night. She's on an Iv, so she is getting SOME fluids. I think once she eats some more and pees a couple times, we'll be able to go.
Thank you for all the hospital related support here and on fb. I feel like I have to fight two battles at this hospital: one of getting through her surgeries and the second of keeping her safe afterward. The roommate thing really feels like entitled brat whining sometimes, because what's the big deal, right? No one wants a roommate. But not everyone has an immune compromised preemie being hospitalized for her 4th total brain surgery, second one in two weeks. I hate having to fight with medical professionals because I feel like I should be able to trust them and trust that they understand our situation. I hate the feeling of distrust and suspicion that this place is growing in me with regard to doctors and nurses. I feel like I know more about her medical needs than they do and that scares me. I mean, yes I spent three months learning about preemies in the nicu and yes, I've done tons of research about preemies and shunts and stuff, but they went to medical school! For pediatrics and neurology stuff! If any subsection of kids is going to have a shunt, the odds are pretty high that kid will have been a Preemie. Maybe learn about your demographic and the other health challenges they face in general.
11/11 afternoon. Last update
Neuro checked her out this morning and everything looks good. We were discharged around noon and now I get to decontaminate everything that went to the hospital.
Thanks for the prayers and for listening to me bitch. It's so nice to have a place to vent.
Special thanks to all the medical pros for the advice. I think our plan for next time, although hopefully we won't be back soon, will be to request to speak to the attending doctor. We can explain everything, show him the letter, and ask for no roommates. I thought that if the charge nurse was presented with our request (which we did very politely and respectfully, until she brought up the honor system bullshit), she would either do it herself or bring it up to the person who was able to make that call. I feel like she let the issue end with her decision, rather than refer us to the person who actually decides on isolation.
A is sleeping, since she's blown up 3 diapers and soiled all of her clean clothes. I'm so happy to be home and that I have my happy baby back!
