Tuesday, June 25, 2013

Anticipation and Surgery....

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 :-)

Monday, June 17, 2013

Snails pace..

What an emotional roller coaster we seem to be on right now. When we finally thought things were under control and our girl could focus on healing and growing...bam...a hard dose of reality slaps us in the face. This ordeal really has brad and I struggling.
Danielle was admitted to the Peds unit after our ER visit. It was a LONG night. We got right into the ER but the waited there for 5 hours before they admitted us and we got up to the Peds Unit. During our wait I tried to do anything to keep our peanut happy. If that meant making her giggle, well then that gave me the opportunity to take some pretty cute videos of her adorable little laughs!

 Baby girl was more than sad after being poked 4 different times trying to get an IV in. Thank goodness for those flight nurses, she got it on the first try. Why they didn't call her sooner I have no idea. This face absolutely broke my heart :(

We finally got settled in our room and got to sleep around 3am on the wee hours of Thursday Morning. Later on Thursday morning neurosurgery came in and decided they needed to tap her new shunt to not only relieve the fluid buildup but also to take a sample of the cerebral spinal fluid and have it tested for infection. This is very similar to the procedure they use to do when she was in the NICU at St. Lukes before she got her shunt put in. The only way to manually drain the fluid is by a ventricular tap. This time they were able to just tap her shunt tho instead of putting the needle right in her brain like they did in the NICU. There was no reason at this point, to think infection, but you never know...her labs were perfect and even better actually than our visit to the clinic the day before.
So one of the residents came in to do thr tap. Basically they take a needle and insert it directly into the shunt for the sample. They make her room sterile and did it right on her bed.

He got the sample and sent it off for testing. About an hour he came back and told me that the csf tested positive for Gram negative bacteria and had some white blood cells in it. This meant INFECTION. And also Emergency surgery. The OR had already been reserved and we would be in surgery within 4 hours. They had to remove every single piece of tubing, shunt etc in her brain because of the infection. Nothing could be left behind because whatever infection was in her brain was in her entire Central Nervous System. This is SERIOUS. He explained that they would place drainage tubs in place of the shunt so the fluid would drain into bags outside her body. Then after the infection is gone she would have another surgery to put the shunts back in. This is not something that happens quick. Not in a week or to but rather Danielle will be in the hospital for 3-4 weeks. I felt as if our world had been ripped apart...and how was i going to explain this to my husband and little boy not to mention Danielle.
The next hours were spent waiting, shedding tears and trying to snuggle as much as we could with our girl.

Serious talk and a few tears with Daddy before heading off to the Operating Room
Just after 315 they came in, got consent and whisked us away to the presurgery unit. Daddy got to ride on the cart with Danielle which was perfect for some extra snuggles.

We arrived to a very quiet unit. All scheduled surgeries were done and it was a bit eerie knowing how emergent this was. Neurosurgery came in and went over the procedure with us in great detail. But not only was this scary because of the obvious, but also because Danielle's doc was in an emergency surgery for another patient so he couldn't do Danielle's. That was different for us because we trust in him so much that it was hard taking a leap, with no notice, into the hands of someone else. We didn't really have any time to think about anything, this all happened so incredibly fast. This neurosurgeon came in before they took her away, he was very very kind and by the time he left he made us as comfortable with his as he could. We had no choice anyway, but after meeting him face to face, even if for just 3 minutes, our minds were at ease. 
Anesthesia came in and before we knew it Daddy was being wheeled into the OR to be there while they put her off to sleep. It was ironic she fell asleep in Daddy's arms before they took her to the OR, it made sedating her a wee bit easier.

The surgery was to take 4-5 hours. Thankfully my aunt was working this day and was able to come up and sit with us for a bit. And thankfully we have amazing family that agreed to take Dylan at the drop of a hat also so we did not have to worry about him. 
Just before 615 we received a notice that they had finished the left side and were on to the right. At this point the day of surgery lounge was closing so they sent us directly uo to the picu to wait for Danielle.
A few minutes after 8 pm the neurosurgeon came up and said surgery went well. But as soon as they got that left, new, shunt out, puss came pouring out. It was severely infected. the right side didn't seem to be but it had to come out anyway and from what they could tell it was barely functioning. The left side the new shunt they think had taken over and began draining for the right. He said again to expect this hospital visit to take a long time. A snails pace and not a race. she did have some bleeding but it was controlled and they would do a CT scan to ensure it had stopped.The chief resident also came up and reassured us that she did well and this is what needs to happen to help her get better.{ Mahaney was a wonderful chief resident who actually graduates today-we are so thankful for her guidance. She will make a wonderful surgeon now out on her own.}
We got to our room in the picu and were so pleased with how comfortable our girl looked. 
Drainage tubes drain into these bags. The drainage tubes are set to drain by the center of gravity. The yellow valve must be the same height as her ear at all times so the fluid does not drain too fast. 
The amount of fluid is measured in the tube every 2 hours, after the nurses measure it they release it into the bag. By today the fluid is mostly all amber colored and is not blood tinged like this any more.
The middle purple and white numbers are constantly measuring the pressure in her brain. The numbers they like to see between 2-10 and if the number gets around 20 that means there is a problem. It is pretty crazy that these numbers measure her brain pressure every single second. The numbers are constantly changing.

Friday they took Danielle in for a ct scan. The scan looked good and no additional bleeding. Also Friday the first culture came back that she had a staph infection in her csf. This was not good. They immediately started her on vancomycin. This a broad spectrum drug that covers quite a few things. We also were trying to get her pain under control, and the night before, she was on morphine but her breathing was very light so they discontinued that. finding the right balance for pain control is very hard. We switched to IV Tylenol every 6 hours and restarted the Baclafin, Muscle Relaxer that we did at home. The combo of those two things have kept her really comfortable.
Friday night we got a room at the rossi house and Dylan came up and stayed with us. Our night nurse was so fantastic she suggested we stay in our rossi house room and get some rest. We took her up on that since all of us had, had little to no sleep the day before. This also gave us time to give Dylan some 1-1 attention. Dylan settled in nicely and was very happy to be with Mom and Dad. He is convinced it is a hotel inside the hospital, well that is pretty much what it is. But he finds it crazy that the hospital is just two floors up where Danielle is. Kids, I love their thinking!

When Danielle had her middle of the night awake time the nurse gave her a pouch of food and decided to paint her finger nails! These nurses are so awesome! (most of them anyway ;-) )
Saturday they encouraged us to start feedings for Danielle. Since Brad spent the day with her he took that job head on and she did great! It was so wonderful hearing that she started taking her bottles immediately. Since she had been on the Venco antibiotic for just over 20 hours at this point, it was obvious that it was already starting to help her to feel better. The only thing during feedings is that because of the drains, we are not able to pick her up just any time we want. The nurses have to come in and turn off the valve on the drains and hand her to us in the recliner and then we have to wait for the nurses to do the same thing when putting her back. because the drains go by the center of gravity the yellow marker has to be level with her ear at all times. If it isn't it could cause the fluid to either back up or drain too quickly and that would be really bad.

Saturday evening we got the horrible news that Danielle's CSF (Cerebral Spinal Fluid) Culture grew out a form of staph infection, MRSA. If you don't know about MRSA and horribly serious it is, here is a little tid bit:
Methicillin-resistant Staphylococcus aureus (MRSA) is a specific strain of Staphylococcus aureus bacteria that is resistant to methicillin, a penicillin-like antibiotic; it often is resistant to other antibiotics as well. Antibiotic resistant organisms do not die as intended when exposed to an antibiotic that normally would be expected to kill them. MRSA is called a "superbug" because of its strong antibiotic resistance and its ability to complicate treatment of staphylococcal infections.

MRSA has two sub-types based on the origins of the infection. Hospital-acquired MRSA (HA-MRSA) is found in hospitalized individuals and in those who have had recent surgery or have been in a hospital or other healthcare facility (e.g., rehabilitation or long-term care facilities) within a year prior to developing infection. Community-acquired MRSA (CA-MRSA) is found in relatively healthy individuals who have not recently been in a healthcare facility. Infection spreads within the community among individuals who share personal items (e.g., drinking glasses, utensils, towels, razors) or sports equipment, or who are enclosed for extended periods within the same physical space (e.g., schools or daycare facilities).
*******so after reading this, you be the judge on where you think she got it from. We have our own thoughts as well that I will not share at this time.*********
When we found out the infection was MRSA we were devastated. This just changed things even more! Because Danielle has MRSA and it is in her CSF our Neurosurgeon had to contact the CDC, Center for Disease Control. They are the US Department that monitors this super bug, where it comes from and are in control of all severe cases. The CDC is now in charge of the surgery decisions for Danielle, how long she will be treated, when her next surgery will be after the infection is gone. This is extremely serious.
We do not know how long Danielle has had this infection. Looking back since her last surgery we know she did not have it then because they tested the CSF after her Surgery she had in may. Did she pick it up during or after that surgery, maybe. The strange thing is that Danielle's FSR, inflammation markers on her lab work weren't totally out of whack. They were a little elevated but not much at all. And her other labs were perfect. She had no fever, not vomiting, she was acting pretty much normal. Granted the kid has had 4 brain surgery's since February so we weren't expecting anything like this, we were looking for other things as a result of her surgery.
So that being said. Vancomycin is extremely hard on IV's and the IV's don't usually stay in very long when this drug goes thru them. So they needed to put in a PICC line. Danielle did have a PICC line when she was in the NICU as well. This is a Central type line that goes in thru a vein and up to her heart and  delivered meds etc, they can also pull blood for labs etc thru the PICC line. So Saturday they attempted to put in a PICC. This is a 'procedure' so they had to ask Brad to step out and make her room sterile. The ARNP, Nurse Practitioners are the ones who usually put these in and that was  no different this time. Well 2 1/2 hours later they still did not have the PICC in. These can be put in in the arms, groin, feet, hands etc. They had poked Danielle in several places trying to get this in. Finally on the 5th attempt the nurse came out and told Brad they were just going to have to try an infant PICC rather than a children's PICC. Well DUH LADY! She is the size of an infant! We were LIVID! And of course the infant PICC went right in. Poor thing has bruises and little cuts all over her body where they tried to poke her, thankfully she was sedated while all this was going on.

After all the poking our little peanut was exhausted. She slept the rest of the afternoon and all night long. Daddy stayed in her room while Dylan and I slept in our Rossi room.
Sunday Danielle was all smiles for her Daddy for Father's Day!

She woke up a happy and hungry little girl. She ate great bottles and didn't even fuss too much when the Neurosurgery Resident Kingsley, came in and changed her bandages etc. They don't generally change the bandages on her head but they needed to change them from full bandages to just gauze and tape so they can see thru to check them and also let them breathe a little bit too. Kingsley has been in on all of Danielle's surgery's except this last one and he is really great with her.
*Caution graphic pics*

 This tubing is inserted into her brain and it drains into the bag you saw above. There is also one on the right side that you can kindof see behind her head. The one on the right side isn't draining too much so they aren't sure if possibly that a shunt may not be needed on that side, or if the left side drain is taking care of both sides. This will be determined at a later date and for now both drainage tubes are open to drain. The left one is draining a lot of fluid right now, therefore it is for sure needed. These drains are inserted into the exact same spot her shunts were inside her brain, they literally pull out the shunt during surgery and insert the drainage tube in the same place. Instead of the CSF draining into her belly when the shunt is in place, the CSF now drains outside of her body so she does not have any tubing in her belly any longer.

He put the netting over her head to hold the gauze on. This helps a lot and makes it easier for us too not worrying if the tape is holding or not! Even after getting picked on she still finds some nice smiles in there for us. she sure knows how to light up a room!
We spent the afternoon talking to her and singing when she was awake and letting her rest when she was asleep. She ate great bottles this morning and early this afternoon, yet this evening, she didn't want to eat at all, for Daddy or I. Not sure why. They did say that getting the MRSA in her tummy is a concern. Since that is where her shunt tubing was, and it was draining the CSF into her abdomen, she very well could get the infection there also. It is something they are watching for.
Tonight I gave her a little sponge bath and she loved it. Nothing like feeling like a new girl with clean jammies, new leads, fresh clean bedding and a little Tylenol also to take the edge off.

 She sure had a lot to say when all was said and done! I caught her in the middle of a sentence here!
 Beautiful girl always with a pretty smile on her face. She she has endured so much. Each time something comes up I dread having to look into those pretty blue eyes and tell her the worst. The only positive things I can think of telling her is that she has the absolute best team of doctors on her side helping her, and all of this to help her grow big and strong. This time around is totally unnecessary, yet infections are bad and they can pop up any time. Unfortunately it happened to her, fortunately we caught it when we did. It is serious now, it is critical now, it is not under control yet, but we are at the very best place and lots of people are keeping an eye on our beautiful girl around the clock.
This is the beginning of our journey. If it seems we are moving at a snails pace during this hospital stay, well, its because we are. This will not be quick. They have told us time and time again it will be 3-4 weeks that she will be here. She cannot go home until she is free from MRSA, and the CDC clears her for surgery to have her new shunt(s) put in and until after that happens. We pray for each day to go a little more smooth than the day before. We love you so much Danielle, you inspire us every single day to be the very best parents we can be. We are so proud of you and blessed to have you as our daughter.~