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!
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.
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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*
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.
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.~
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