You can see the initials on her head on the left before surgery, it was not until they looked at the CT scans literally right before surgery that they changed their mind. It was literally a game time decision.
So, they started the CVN and then at 10pm Tuesday night they were to come in and clamp her ventrics, her drain on the left side. The goal was to have the drains stop draining fluid from her brain because in order to optimize shunt placement they needed those ventricles filled with fluid for surgery, then the shunt would be placed and fluid would drain again as it should, thru the shunt. Well, clamping the ventrics was risky, because too much fluid in those ventricles, as we know, can cause lots of issues, so we were riding a fine line, but she was closely monitored, she still had the ICP measure on her monitor (Intercrainal Pressure) so we could see what her brain pressure was doing. So 10 pm Neurosurgery came in and clamped.
Danielle ate a good bottle before bed and I was so happy because this was the last time she was going to be able to eat before surgery. At midnight, no more food.
I laid on the couch next to her to catch a few hours of sleep and they came in just before midnight to do the MRI and CT scan. Of course they had to wake her....thankfully that didn't take long at all and just before 1am they brought her back and we tucked her in and I laid down again hoping for a few more hours of sleep.
Just before 3 am I woke up out of a dead sleep, mommy intuition kicking in, I woke up to Danielle vomiting profusely. Poor thing, it was everywhere, and this was just the beginning. For the next 3 hours she continued to throw up and throw up, there was nothing left in her stomach and she was dry heaving and vomiting stomach acid up for most of the time. It broke my heart. We were closely watching her ICP on the monitor and it was showing her pressure was stable. The nurses were paging Neurosurgery and updating them each time she got sick.
Around 530am Neurosurgery came in for their rounds with the Chief Resident and they decided to unclamp her drain and let it drain for a little bit. This profuse vomiting was a sign of her ventricles filling with fluid and her body not being able to handle that excess pressure in her brain. This was a great indication of a few things, first and foremost that she REALLY needed the shunt, and also if her shunt were to malfunction in the future, vomiting such as she was, would be our first clue that something was wrong. Hopefully we never have to have her shunt revised in the future, but I witnessed first hand what would happen if her shunt malfunctioned. This raised a big flag in our minds that forever will be signs for us to watch.
So, they unclamped her and within 15 minutes she was dry heaving again and again and again. This went on until 1030 am when they took her into surgery. It absolutely broke my heart but they could not unclamp her again for her safety during surgery and in order for the placement, they needed those ventricles filled with fluid.
At about 930 am they came in and took Danielle down for a CT. She had electrodes placed on her head and they showed up on the CT as measurements so they knew where the best spot to go in was. This is called a Centralized CT Scan. Because she had so many other incisions on her head, they needed to go in a brand new spot, since she had had infection, they could not use a previous incision site. They ended up taking her right from CT into surgery. Daddy had went along for all of that and I waited back at the room. About 1045 Brad came back saying they had taken her into surgery.
**We waited in Danielle's room which was actually very nice compared to waiting in the day of surgery lounge. We were told we would get an update, and about 1230 we finally got our first one that it took them a little longer than anticipated to get started but that all was going well. We were relieved since it had been so long with no update. So Brad laid back in the recliner and I laid down on the couch with anticipation of about 3 more hours left of surgery. Shortly after 230 I awoke to a 'u hoo-u hoo' I promptly sat up to thankfully see Brad awake but even more embarrassing Danielle's Neurosurgeon standing in the door way 'u-hooing' us to wake up!!!! OMG we were SOO embarrassed! We were clearly sleep deprived but how could we both fall asleep while our daughter was undergoing serious brain surgery, seriously we felt horrible and were mortified! He told us all went well and that she would be up in a bit! The nurses giggled and ensured us that we needed that brief little sleep that we had just gotten, omg still...embarrassing!!!!!
Our primary Neurosurgeon did not perform the surgery, we were a little nervous about that, but beings this doctor had just done her emergency surgery and us having been talking with him almost every day after that, we quickly began to feel a level of comfort with him that helped our minds be at ease. Of course after she came thru surgery fine, we felt even better.
No food after surgery, but little water on these special sponge pops made her sure feel better!
Our first smile a few hours post op- we knew everything was alright. This was our first sign :-)
One shunt was a big relief for us. As long as that was what she needed we were really happy with that. Less to worry about with only one set of tubing in there. She came back from surgery pretty happy. Little fussy but looking around at us and wanting us right by her side, and right by her side we definitely were. She is such a warrior and is so inspiring to us and many others, it warmed both of our hearts to see her after surgery looking so good.
It took just a bit to get pain under control. But after 2 doses of morphine she did not require any more during her hospital stay. We of course wanted her comfortable so they were doing IV Tylenol which is a little bit stronger than oral and it worked well.
See ya PICU!
Finally a little after 330pm that was all done and we were on our way HOME!
Walking out the hospital doors, heading HOME!
The delight was in her eyes immediately, shown by one of the biggest smiles ever!
This little now, 5 year old girl, has been thru a LOT the past 7 months, 5 very serious and life altering brain surgery's. We are incredibly thankful to even have her here with us today. I do not say that lightly either. Unless you have lost a child or have been moments away from losing your child you may not understand. And I hope you don't because I do not wish what we have gone thru on anyone, not even my worst enemy. We now look ahead, take a deep breath, and bow our heads in prayer for another day with our girl.
***You may have noticed during the list of events above that took place that it was not our Neurosurgeon that performed the last two surgery's for Danielle. We knew their case load while we were there was heavy, I am not even kidding when I say that they were over-run with sick sick kiddo's and while Danielle's case was serious, life threatening etc, there were cases far more serious than hers that needed his attention. So he made every single decision for Danielle, but it was another Surgeon who performed her surgery's under her surgeons guidance. It was hard for us to swallow at first that we did not have him performing her surgery's, but this did not mean that we now had a new doc, it just meant at these moments when we needed a surgeon right now, it would be someone else. Brad had spoke with our surgeon a couple times after her surgery and I spoke to him the day after. He reassured me that he was watching her daily, dictating and making ALL decisions on Danielle's care, watching her sats and scans very closely. This made us feel comfortable hearing his words, 'I know what is going on with your daughter and I am dictating every move.'
But just before we left the hospital that Saturday, his Resident notified us that our Neurosurgeon would be undergoing very serious medical surgery himself and would be out for an undetermined amount of time. This broke my heart. But at that moment it all made so much sense. This is why we were familiar with another Surgeon, I am guessing in case he were to not return. Not only did this all click, it was our sign that it was all meant to be. If Danielle would have not had this infection, even as serious as it was, another surgeon could have hopped in and made completely different decisions with them not knowing her as well. As crazy as it was, this infection was meant to be. As serious as it was, she is now new, she's a new girl, even better mechanically than we even knew before. You may not understand, but that's ok, WE do.
Our hearts are with our world class Neurosurgeon during this time that he is out away from his profession. If anything had to come up with us such as it did, the timing as weird as this sounds, could not have been better. Our actual doc made all the decisions on her and now another doc is familiar with her, thank you lord. It happens for a reason and I normally can't stand those words, but by golly, to us right now it all makes sense.***
This week we will go back and have her stitches removed. That will be a great day! She has not been able to have an actual bath, so water this week will feel so good, and she has had this net on her head keeping her bandages on, it will feel so good to get rid of all of that and let her head breathe a little bit and let her hair grow again! She has not been able to be on her tummy at all, so we hope to be able to be on that again and back up in her special chair again too!