We awoke to a very happy girl despite not eaten for 12 hours she was a happy little thing and on the car ride to the U she had a LOT to say. She chattered the whole entire drive down. Brad and I tried to explain to her how her Neurosurgeon was going to help her be an even bigger girl.
We arrived and got checked into the day of surgery. We got her in a gown and immediately she knew something was up. She knew she had been thru that routine before and her demeanor changed a bit. Anesthesia came in and we gave consent and Brad got dressed in his garb so he could go along to take her to the OR. Anticipation was taking over. Neurosurgery came in and marked her area. Anesthesia came in to take Brad and Danielle back and asked if Neurosurg had told us of the new plan, we looked at each other, 'um no'. They were going to send the Resident back in after Danielle was off to sleep. We gave kisses and they began trekking back to the OR, a few minutes later I see them all walk back to the room. There was a significant change in plans. The Resident came in and explained that our Neurosurgeon came in the night before and reviewed her scans, he changed the plan of action because the main artery which he would have had to go under made him rethink things. The new plan was to go in on the left frontal and place a new shunt that would instead drain the 3rd ventricle. Brad and I were perplexed but we trust him so much that we were ok. This meant a possible shorter surgery, and that's all we knew at that moment.
It was his explanation that gave us even more clarity in our hearts of why he is the BEST. It was Sunday afternoon from his home office that he began reviewing Danielle's MRI and MRV scans from a few weeks ago, he also went back and reviewed her MRI scans from 2010 until present. He began noticing in the recent scans that her right shunt was doing its job wonderfully of draining the fluid on that side but what was happening was it was pushing that cavity towards the left and the 3rd ventricle cavity was becoming very very large and filled with fluid, this was new. It had been gradual over the past 2 scans but both sides must communicate and it was then that he told us that if he didn't drain this 3rd ventricle on the left side of her brain and the pressure continued to build, she could die within 4-6 hours. Her pressure was high when he started the surgery yet usually after the child is given anesthesia the pressure goes down a little bit, Danielle's pressure remained the same. This 3rd ventricle needed to be drained NOW. The only way to do this was to place a new shunt on the left side. It had to be a programmable magnetic shunt, like her right one, because otherwise there would be no way to safely control the drainage. The pressurized valve shunts are about a setting of 1.5 and hers needed to be lower than that, the lower the number the more open the valve is to drain more fluid.
THANK GOD he decided to go in and review these scans in great depth the day before her surgery. He then came in Monday, the morning of her surgery to review more. You see, his explanation was that if he would not have reviewed the scans and noticed the amount of fluid building in the 3rd ventricle, then if he would have went in from behind under that main artery and drained her 4th ventricle everything from the top of her head would have fallen out from the pressure, she would have died. His expertise has once blown us away. He told us several times again how perplexing our daughter is to him and he is not content until he knows that everything with her is how it should be. We agree, yet we are so incredibly thankful and blessed to be under his care. He is absolutely amazing and as he said he takes his patients home with him and it really shows. He again saved our daughter and we are so overwhelmed with feelings that it is hard to explain. He looked at us and said, 'I'm sure you have an unbelievable guardian angel watching over your daughter.' Brad and I smiled because we know exactly who it is, yet I made sure he knew how incredibly blessed we feel to have the worlds best Neurosurgeon for our daughter.
What does this mean, what happens to the fluid in the 4th ventricle that cannot remain there? Well, this new shunt more than likely will not drain that fluid, it isn't set up to. Could it, maybe. This does mean that the very long 7 hour surgery that we arrived at the U for on Monday will probably happen in the future, we are unsure when. This had to be taken care of first and it was caught before the worst case scenario happened.
The Neurosurgery team arrived around 5am and checked over her bandages etc. I notified them at that time that we felt she was in a high amount of pain. They ordered a MRI to check her new shunt and see that everything was working properly.
Around 830 the nurses took Danielle down for her MRI. I was extremely frustrated at this point and opted to stay back in her room and let the charge nurse take over. Danielle arrived back up about 40 minutes later and the scans were a success without sedation.
Labs were drawn yesterday and it showed that her Sodium levels were a little high. That was monitored all day via blood work. They are also keeping a good eye on her H&H because she was extremely pale last night and they wanted to make sure that they didn't need to give her a blood transfusion. Thankfully her levels have remained ok and that was not needed. A UA was taken tho and Danielle's creatnine (kidney function) level was high. This was noticed before her surgery in February also and that is when we noticed she had a UTI. She is being treated for another UTI now with IV antibiotics that cover secondary infections. Yet the Nephrology team was on the PICU floor today and was made aware of Danielle's level. They did some research on her labs and from her time spent in the NICU and noticed she did have a UTI while in the NICU as well. Although she has not had any concerns until now the Nephrology team did want to get an ultrasound of her Kidney's to make sure that nothing is mechanically causing the recent UTI's. The ultrasound was done this afternoon and she tolerated it really well. Tonight the fellow doc came in and showed Brad and I the ultrasound and was telling us that she shows signs of some kidney disease. She's not sure why her levels are elevated maybe because she was a preemie an on diruetics for so long and higher calorie formula. They will do more labs in the morning to check some other things. Both of us are a little irritated that at 950 at night she comes in and tried to scare the hell out of us with this etc. We have seen a similar ultrasound in Dylan and even moreso we have had NO concern whatsoever in Danielle with any of this. Very strange. We will let them test etc but there is one thing for sure we will be speaking to someone else about this tomorrow for sure.
Finally today around noon, after a bottle her and I and Grammy were able to get about a 2 hour nap in, that was the first sleep in 24 hours and it was needed! It felt so good and after that nap I noticed Danielle calming down a little more easily. Although she is still very fussy and crying she has calmed sooner and even fallen asleep on her own late this afternoon and evening.
Her Neurosurgeon came around this afternoon and gave us the great news that her MRI scans looked fantastic. Both of the shunts are set at the exact same setting and the new one on the left side he has seen a tremendous improvement in the cavity already. Her doctor even gave us a smile today, he was pleased. I notified him of her constant pain and he was understanding and said it is to be expected. He is so wonderful that he even took care of our nursing concerns with no issues. A couple of nurses were talking amongst themselves about Danielle moving down to the Ped's floor. He overheard them talking and directly said, 'you do not move my patient without my order. You follow my rules with her and she isn't going anywhere. I rule her orders.'
This was very reassuring to me that nothing can be changed without him calling the shots, the exact way it should be!
She is resting comfortably now. The night nurse will be in any minute to do cares so that will probably wake her. But we are hoping for a very good night with her with lots of rest, moving in the right direction with good scan's today and less pressure in her head was a great start. We are hoping that continues. Things have not gone as planned again and that is ok. Change means everything and to us it means having our daughter with us for many more days, years etc. She has a very full life ahead of her yet. It is very evident that the chronological order of events are happening for a reason and there has been intervention when needed by the very best doctor to ensure that we keep our daughter with us. We feel we owe him so much, yet he feels his job is not done. We are blessed to be here and blessed to have today. No matter the small circumstances in between we will continue to do what is best for our girl, and the very very best is what she will get.
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