I am a person who tries to not get worked up too quickly about things before I know the outcome or what it will be. Brad and I have been very much 'trained' to take it day by day since our first child was born. But I have got to admit, the anticipation of getting this hospital stay behind us is constantly filling my mind!
Rewind to last week:
Danielle had been doing good, we were just waiting for the infection to be cleared for several days and wait for the CDC docs to give it the all clear. There was a culture from the first Saturday we were here that was non conclusive/contaminated so the CDC said it could be treated as a negative and she could have had surgery last Friday. Neurosurgery, thank god, said, hold up....that's too soon, we will say that culture was positive even if it wasn't, but we will never know, just to by us some more time to err on the side of caution.
So that put us as possible surgery on Monday of this week. Well Thursday last week Danielle had been showing us that she wasn't quite herself. Everything lab wise was fine and to the nurses she was happy, but we could tell by a few small things that something may be brewing. The nights were sleepless, she was little clingy and started not eating much. In fact it was a full 24 hours on Friday before she took a bottle. So Friday morning I fed her 9 ounces and she gobbled it down and wanted more. I waited a couple hours and she gobbled down 7 more ounces, and also threw it up, ALL OVER MOM. Ugh. We had the funniest nurse that day, one that actually had both of our kids when they were in the NICU here, and she is also a young Mom so she thought nothing of taking the suction machine to my chest to suction the puke off of me and my child before I got up and had it ooze to the floor. GROSS, yep, it was GROSS! But this incident was also scary. She was vomiting and her eyes were rolling to the back of her head, she was white as a ghost and she was sweating like crazy. This mama was pretty worried.
Well that was the first of the vomiting. It proceeded more that day and into Saturday as well. She also started to look not very good. Her eyes were sunken in and in a very short time her labs showed she was very dehydrated and was possibly also fighting a virus because her white blood cell count took a jump from like 6500 to over 18500 over night with a slight left shift. So this automatically postponed surgery.
Middle of the night rush to an MRI and Mom waits for her in a quiet, empty room.
A lot of IV fluids and lots of labs, blood cultures, csf cultures, a middle of the night MRI were a few of the things that kept our weekend BUSY! Thankfully all of her cultures etc were negative and by Sunday night her labs had greatly improved. They kept her on maintenance of IV fluids at my request because I didn't want this to happen again before surgery, which was postponed from Monday to tomorrow.
Yes, tomorrow, Wednesday, is Danielle's surgery. We are now anticipating this surgery and cannot wait to see her on the other side of surgery tomorrow. Neurosurgery has been monitoring Danielle's CSF output each day and she is draining about 200ml every 24 hours, which is a lot. They had pulled the right ventric so this is just 200 ml's coming out of the left 3rd ventricle of her brain. They have been monitoring her ICP, Inter cranial pressure, and everything has looked good.
The CSF fluid drains into the reservoir, the nurses measure and drain it into the bag every 2 hours.
Her poor little body is STILL all bruised up from where they attempted to put in the PICC line, thankfully it is in her right thigh now.
Pre-surgery there are some things that will take place. Just tonight, at 10pm, they clamped off her ventrics so no more fluid will be draining from her brain before surgery. The reason for this is because they need those ventricles of the brain to be large in order to get the best possible placement for her shunt. But it is also a fine line Neuro wise because they have clamped the ventrics but also will check her Neurologically very close over night.
Moving her to hold her is a big challenge, her ventrics have to be clamped off to move her so too much CSF fluid does not drain and also so it does not pull out of her brain. It always takes 2-3 people to move her and plan around the nurses schedule also. Can't wait to freely pick up our girl!
Neurosurgery will come in, in the morning and place some electrodes on her head and then she will head to a pre-surgery CT scan. This Centralized CT scan will help show internally placement and measurements by the electrodes of her head where things are located and they will also see the fluid that has built up over night with the ventrics being clamped shut.
Sound like a lot, it is. And honestly I know more about the human brain, etc now than I ever knew I even needed to know before.
The surgery tomorrow will not be performed by our Neurosurgeon either. It will be done by another doctor, the same one that performed her emergency surgery. We aren't too sure why her neurosurgeon isn't performing the surgery other than there are some more complex cases going on right now that her doctor has tight tabs on. BUT, her doctor is still fully calling all of the shots regarding Danielle. he is making all of the decisions, he decided when surgery would be, what would be done etc. More will be decided after the CT scan tomorrow morning, and those decisions will be his.
They will be placing only one shunt. They feel that her previous left shunt was taking care of both sides, so they feel placing only one will suffice. Now they are not able to use any previous incision Danielle has, and that will be hard. If you look at her head she has incisions everywhere and because she is so small they are very limited on space. so they did talk about going in on the right side, even tho the shunt would control the ventricles on the left. Also they talked about doing a Septostomy. The Septostomy would be performed by her Neurosurgeon in the OR with the other doc as well. The Septostomy would poke a small hole between the 3rd and 4th ventricles so the fluid can flow freely so they could get by with only placing one shunt. Again this will all be literally a game time decision.
This is by far the best, most proud, big brother ever!
This has really been a long road. We have tried to keep as much normalcy, within our family, as possible. Both of us are working each day, it has absolutely broke my heart to have to leave my girl at the hospital while I am at the office, This is a first for me and something I said I would never, ever do. Unfortunately duty has called and we have had to make the very best of this 3 week hospital stay. Thankfully we have had family that has come up and sat with Danielle during the day, so in over these two weeks she has only been with the nurses on two occasions. And Thankfully we have employers that understand our situation as well. Thankfully on those two occasions that she has been with the nurses, the Child Life Specialists also have been available and they have come in and kept Danielle very busy. I am so thankful for these students, it makes me feel so much better knowing that our girl is as comfortable as possible and having so much play time fun with people who love kids so much.
My Dad, Grandpa Kinney, came to sit with Danielle for 3 days!
Cousins Kim and Kris came to sit with Danielle also!
She got her very own Scentsy buddy,
thanks to a lot of donations to the hospital by some wonderful people!
So tonight will be busy and probably sleepless for her Dad and I. Thankfully Dylan is in Des Moines for a few days having fun, so his mind is in a good place too. We can focus on our girl and getting this surgery behind us so we can be on the road to recovery and home! Danielle's birthday is on Thursday and it is the worst feeling as a parent knowing that she will be one day post op for her 5th birthday, but we will make it special no matter what!
Between 515-6am every single morning the Neurosurgery team does their rounds. You can't even see all of the Residents in this picture, there are usually around 10 of them and they stay for usually 1-3 minutes. Just long enough to wake up a sleeping babe.
Night before, presurgery special treat! YUM!
Danielle is 2nd case for the OR tomorrow. That puts the surgery time at approx. 1045am. I am not sure how long the surgery will take, it will depend on what the CT shows tomorrow and what type of system they put in as well. Thoughts and prayers are always welcome, its the anticipation of yet another surgery that we will be trying to keep on the wayside and focusing all of our positive energy on our girl.~.
Night before, presurgery snuggles with Daddy
Happening Now: Danielle is sound asleep having peaceful dreams :-)
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