Post by motownthrowdown on Oct 28, 2015 18:48:10 GMT -5
I hate clogging up randoms.
Trigger: sick baby in hospital
So A had her MRI this afternoon. When she was coming out of the anesthesia, she had a very rapid breathing pattern and a possible seizure. They admitted her overnight in case the seizure was caused by the increased pressure. Surgery is still planned for morning.
The neurosurgeon says she's a good candidate for the hole-poking option I discussed in randoms. Basically, the two fluid filled spaces in her brain are supposed to flow freely between each other and they aren't, so one side is draining from her shunt and the other side isn't.
She's stable now and the nurses even got some smiles out of her. She's pissed because she's hungry, so I'm pumping now because I didn't bring anything with me.
My hands were shaking so bad in the recovery area that I had to put her down. Ptsd is not treating me very well tonight.
UPDATE: 10/29 pre-surgery
I'll update up here so nobody had to go digging. I copied this response from down further and then realized I should do it this way lol.
They always keep babies overnight for observation 24 hours after surgery. So we could be out tomorrow morning.
Uneventful night. I'm wondering if the seizure/whatever the hell it was was some kind of reaction to the sedation drugs. She is at higher risk of developing seizures, but she had never done anything like that ever.
Surgery in a couple hours. T & P appreciated. She had the biggest smile for me when I came to check on her a couple minutes ago, so the pressure is still minimal. She is getting pissed again because she's been NPO (nothing by mouth) since midnight.
10/29 pre-op briefing
cupcakecutiern her neurosurgeon thinks the etv (hole-poking) is the best option, so we went with that. The plan is to go in through her fontanel with a tiny camera and poke a hole in the bottom of the third ventricle (picture the s bend on a toilet. The 3rd ventricle is the s bend and the other 2 ventricles are in the bowl. Sort of.). This hole will provide a secondary exit for the fluid buildup and may "replace" the shunt. They don't remove shunts unless they get infected or something, but it may not be needed if this works. He's also going to poke holes in the wall between the two main ventricles so that the fluid can flow between them and drain equally. The odds of success for this are actually 80/20 now, since she's bigger and with the type of scarring she has between the ventricles.
I can't believe we caught this on our own. The buildup was only in one ventricle, so the difference was small. There is some pressure built up in that half, but the other half is fine and draining normally. I'll update again later. Thanks for the support, t&ps, keep them coming if you can. You guys rock!
10/29 post op update
Surgery went well. Everything looks like it's working as it should. She's so sad though. She is so groggy and she's just kind of moaning in between breaths. They gave her some pain meds down in the recovery room and they just gave her some more, so hopefully that will help. Plus we can feed her here in a minute and I bet that will make her feel better too.
No seizures or strange movements coming out of anesthesia. They are doing an EEG later to see if there is abnormal brain stuff going on.
10/29 afternoon update///RANT
Just so you guys know, I'm updating this partially as a record. I don't want you guys to think I'm just sitting here on my phone all the time.
I despise this fucking hospital. I wanted to get through her surgery before getting too pissed, so now that's over with.
We were supposed to be here at 6:15 am for her surgery before the plan changed yesterday. At 6:45 this morning, I got a call from the surgery unit asking where we were. I told them we were admitted. They seemed confused.
DH got a call from the MRI team around 8:15 am (while we were in the surgery waiting area) asking if we had questions about her scan.
Before they took her to surgery, they were going to do her EEG, which makes no sense because the whole point was to do it after she came out of sedation. She had it about an hour ago and it looked good. No signs of abnormal brain activity, which puts her on the lower end of the increased risk scale.
Right before the EEG,they tried to give us a roommate. DH shut that down, but we never really heard anything official, so we're wondering if they are waiting until the pediatrician office is closed. The nurse took the letter to show the charge nurse. I have extras in case it "gets lost."
I plan to address this with our neurosurgeon tomorrow morning when he comes to look at her. This surgery is not an instant thing. We scheduled this one two days ago. I don't see a reason why he can't do it at our NICU hospital.
On a purely non-medical point, I tried to buy a contact case and extra breast pump membranes from the gift shop. They don't carry either. They called the other store in the hospital (on the other end of the hospital) and they don't carry either of them. This hospital has a nicu and a lactation department and neither of them had any. They also don't have extra cases or anything that could be used as a case. We bought granola parfaits for a snack so I'm going to wash the granola containers and use those. Last night, I used two snappies (milk storage containers) upside down.
Trigger: sick baby in hospital
So A had her MRI this afternoon. When she was coming out of the anesthesia, she had a very rapid breathing pattern and a possible seizure. They admitted her overnight in case the seizure was caused by the increased pressure. Surgery is still planned for morning.
The neurosurgeon says she's a good candidate for the hole-poking option I discussed in randoms. Basically, the two fluid filled spaces in her brain are supposed to flow freely between each other and they aren't, so one side is draining from her shunt and the other side isn't.
She's stable now and the nurses even got some smiles out of her. She's pissed because she's hungry, so I'm pumping now because I didn't bring anything with me.
My hands were shaking so bad in the recovery area that I had to put her down. Ptsd is not treating me very well tonight.
UPDATE: 10/29 pre-surgery
I'll update up here so nobody had to go digging. I copied this response from down further and then realized I should do it this way lol.
They always keep babies overnight for observation 24 hours after surgery. So we could be out tomorrow morning.
Uneventful night. I'm wondering if the seizure/whatever the hell it was was some kind of reaction to the sedation drugs. She is at higher risk of developing seizures, but she had never done anything like that ever.
Surgery in a couple hours. T & P appreciated. She had the biggest smile for me when I came to check on her a couple minutes ago, so the pressure is still minimal. She is getting pissed again because she's been NPO (nothing by mouth) since midnight.
10/29 pre-op briefing
cupcakecutiern her neurosurgeon thinks the etv (hole-poking) is the best option, so we went with that. The plan is to go in through her fontanel with a tiny camera and poke a hole in the bottom of the third ventricle (picture the s bend on a toilet. The 3rd ventricle is the s bend and the other 2 ventricles are in the bowl. Sort of.). This hole will provide a secondary exit for the fluid buildup and may "replace" the shunt. They don't remove shunts unless they get infected or something, but it may not be needed if this works. He's also going to poke holes in the wall between the two main ventricles so that the fluid can flow between them and drain equally. The odds of success for this are actually 80/20 now, since she's bigger and with the type of scarring she has between the ventricles.
I can't believe we caught this on our own. The buildup was only in one ventricle, so the difference was small. There is some pressure built up in that half, but the other half is fine and draining normally. I'll update again later. Thanks for the support, t&ps, keep them coming if you can. You guys rock!
10/29 post op update
Surgery went well. Everything looks like it's working as it should. She's so sad though. She is so groggy and she's just kind of moaning in between breaths. They gave her some pain meds down in the recovery room and they just gave her some more, so hopefully that will help. Plus we can feed her here in a minute and I bet that will make her feel better too.
No seizures or strange movements coming out of anesthesia. They are doing an EEG later to see if there is abnormal brain stuff going on.
10/29 afternoon update///RANT
Just so you guys know, I'm updating this partially as a record. I don't want you guys to think I'm just sitting here on my phone all the time.
I despise this fucking hospital. I wanted to get through her surgery before getting too pissed, so now that's over with.
We were supposed to be here at 6:15 am for her surgery before the plan changed yesterday. At 6:45 this morning, I got a call from the surgery unit asking where we were. I told them we were admitted. They seemed confused.
DH got a call from the MRI team around 8:15 am (while we were in the surgery waiting area) asking if we had questions about her scan.
Before they took her to surgery, they were going to do her EEG, which makes no sense because the whole point was to do it after she came out of sedation. She had it about an hour ago and it looked good. No signs of abnormal brain activity, which puts her on the lower end of the increased risk scale.
Right before the EEG,they tried to give us a roommate. DH shut that down, but we never really heard anything official, so we're wondering if they are waiting until the pediatrician office is closed. The nurse took the letter to show the charge nurse. I have extras in case it "gets lost."
I plan to address this with our neurosurgeon tomorrow morning when he comes to look at her. This surgery is not an instant thing. We scheduled this one two days ago. I don't see a reason why he can't do it at our NICU hospital.
On a purely non-medical point, I tried to buy a contact case and extra breast pump membranes from the gift shop. They don't carry either. They called the other store in the hospital (on the other end of the hospital) and they don't carry either of them. This hospital has a nicu and a lactation department and neither of them had any. They also don't have extra cases or anything that could be used as a case. We bought granola parfaits for a snack so I'm going to wash the granola containers and use those. Last night, I used two snappies (milk storage containers) upside down.
based on her mri, I think that's what her neurosurgeon is going to push for, but we're only at like 50/50 I think. 
