Sunday, July 7, 2013

Post Surgery...Home...New Focus...

Wednesday, June 26th Danielle underwent surgery to have one shunt replaced. Yes, they decided after much consideration, results from CT & MRI scans, and several days of Danielle not having the right ventricle drain in, that she only needed to have one shunt replaced.
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.

The night before surgery, at our request they started Danielle on CVN Nutrition. This is something we requested because she would not be able to eat for close to 2 days and we did not want her getting behind any further on nutrition. The CVN is something that both of the kids had in the NICU, it is a mixture of things to help supplement the body with nutrition. It can only be ran thru a central line, so since Danielle had the PICC line it was perfect. I also asked them to add a bag or two of lipids also just to get a little more fatty nutrition in her also. The PICU floor doc agreed and was thankfully on board with our request. Let me tell you, this probably isn't a request most parents make, unfortunately and fortunately both we knew what we were talking about and there were alternatives other than filling her tummy with food. Thank goodness we had them do this.
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 :-)
Kingsley, the resident then came in later and explained to us that they only did the one shunt and they placed it on the right side BUT it was draining fluid from the left. They placed it on the right because they had to since they were literally out of room on her little head, but they placed the shunt to drain in the middle of the two sides and the later of the left side of the 3rd ventricle. He said her ICP was high and as soon as they inserted the catheter her Cerebral Spinal fluid started shooting out and her pressure immediately went down, they knew they had the placement in a good spot.
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.

The day after surgery was Danielle's 5th birthday! We had made plans to celebrate at the hospital as birthday's are very special in our house and we had a lot to celebrate no matter where she was! Not only was her birthday a special day but it was also a special day for my aunt. It was her last day of work at the University, as she was retiring. I may have mentioned before, but my Aunt Ellie has been such a blessing in many ways to us, since way back 6 1/2 years ago when Dylan was in the NICU. She has checked on our kiddo's daily during their hospital stays, helped guide us thru rough times, helped us have a voice for our children and much much more. So it was very bittersweet this day celebrating with her but also being very sad that we would no longer see her at the U. This only meant one thing, she's retiring and our plan is now since she isn't there any longer, no more hospital stays for us! We all think that sounds like a great idea!

Brad spent the day with Danielle and I went in and worked for a few hours and Dylan and I came up later that night for some celebrating. Our night was almost cut short when a PICU floor resident came in and tried to d/c us down to the peds floor, I was NOT having it! There was no way that just barely 24 hours post op Danielle was ready to go down to peds and we were not comfortable with that either! Well I surely spoke up and we got our way, our girl wasn't going anywhere that night and after consulting with Neurosurgery, they agreed too!!! The celebration was on. We took in cookie's for the docs and nurses that I brought up, and had presents and a cookie cake for our girl. Friends sent balloons and gifts, we opened presents, snuggled and remembered back 5 years at what a miracle was born that morning! We had a lot to celebrate for our special birthday girl, 5 years of blessings she has brought us!

 The hospital staff not only brought in a card but also a hand made quilt made by volunteers, SO nice!
Friday morning bright and early the docs came in and Danielle had a pretty good night so they were going to transition us that day down to the Peds floor. I was ok with this, this day but there were a few things we were watching. She did throw up a couple times in the night before, which we assume was from the anesthesia, and she had a little swelling along her shunt track on the right side of her chest above the bandage. And she also spiked a bit of a fever. 100.5 got me worried, but it wasn't high enough to have Neurosurgery worried. They look at anything 101.7 +, as something to worry about.
 See ya PICU!
Friday we got settled in our room down on 2nd floor peds this time. And Danielle did well. She was feisty and we began feeding her off and on and she was taking little bits here and there. Her fever was still off and on but they weren't concerned. But as soon as we went down to Peds they began looking at going home. When down there they don't mess around, its lets do what you need and get you outa here! So her vitals were all really stable so they took off all the monitors for the night, which made it so nice for us to get her in and out of bed. She slept pretty good, ate ok and had a big bowel movement Saturday early morning, so two of those things helped push us right out the door and to HOME!

Saturday morning, the 29th, we found out we would be going home this day! It was such a fantastic moment, we were cautiously excited and so ready to be home as a family. As soon as we mentioned home to our girl she was grinning ear to ear and squealing with delight! It took about 6 hours for discharge, by far the longest discharge ever for us, but Neurosurgery wanted a MRI scan to verify all looked well and she needed her PICC line removed, it was such a process..
Finally a little after 330pm that was all done and we were on our way HOME!

  You see the tiny tiny white, what looks like string in the doctors hands in the picture below....that was Danielle's PICC line that went from her upper thigh up to her heart inside her vein. That was used like an IV for her CVN, all her meds and they were even able to draw blood from it for labs. SO incredibly tiny but so so important, and it was very important to get it out of there before it got infected. It had been in for 2 weeks.
  Walking out the hospital doors, heading HOME!

  The delight was in her eyes immediately, shown by one of the biggest smiles ever!
Our transition home went well. Danielle was pretty quiet the first few days and we could tell was re acclimating herself with home again. After all it had been 2 1/2 weeks since she had been here. She was smiling and every now and then we would hear a little of her chatter, but mostly she was taking it all in. We quickly found the place that she was most comfortable at was her bed. We put her in bed the first night and she snuggled right in. We have had some sleepless nights since then, days where she has just wanted to be snuggled, days of not eating that great, and then days of lots of smiles, talking, eating good, sassy, and we will gladly take them all. Because our girl is now HOME, and home feels oh so good!
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.

We may have a new focus now that flashed right before our eyes, we at times get caught up in the chaos of our busy life and that is really easy to do. We have always been thankful, but thankful to us means something totally different to us now. Thankful means so..much...more than we could have ever even imagined.
***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!
More positive updates coming soon, we are on the right road now, new focus, new girl! Thank you for the thoughts and prayers, we never would have been able to get thru this without them. It has been difficult, but we'll look back later and wonder how we did it, for now we're moving forward!~