Post Surgery update....Week 2 @ UIHC

Little update on Danielle. Surgery last Saturday went well. They placed the ventricular drains and removed her old shunt catheter from her brain. Her incisions are pretty ouchy and the next 3 days we again struggled with making her comfortable and finding the balance of pain meds and what she needed to calm her down and make her comfy.

Monday she spiked a fever which was SO unfortunate. It was just a low grade temp, but enough to raise a little bit of an alert. This could have been some of her ouchiness or it could have meant that something else was brewing. She also started having some really nasty colored fluid coming out of her ng, which is the tube down her nose that is continuously pumping out her tummy and the air in her tummy. Here are a few pictures that may help you understand a little bit about not only why she is in so much pain, but just an over all picture of what is going on with her.
     This is her Ventricular drain. It takes the place of her shunt temporarily, since she has to always have something that can drain the fluid from her brain for her, since her body can not drain it on its own like yours and mine do. So this ventric goes into the ventricle of her brain and constantly drains fluid outside of her body into a glass tube and then a bag. The flow is centered by gravity. So the ventric needs to be level with her ear at all times so it does not drain too quick or too slow. There are pressure limits that are set also that show on the monitor above her head. It will beep if something is off with the pressure limits they have set. For this reason, we are unable to hold her or pick her up out of bed. If you know Danielle well, and what a snuggle that she is, this is very difficult for all of us. It is going on a week and a half since I have held my girl in my arms and that absolutely breaks my heart. The Neurosurgeons are taking fluid samples from the CSF (Cerebral Spinal Fluid) that is draining out, daily, and letting the cultures grow for signs of infection. We want it to be negative showing that the infection is cleared.

This Is her tummy incision. Absolutely heart breaking. This incision is a LOT larger than they wanted it to be. But her shunt tubing was wrapped so much and tight up against her bowel that they needed it bigger to clear out some tissue and also make sure there was nothing else in there growing etc, causing any issues that they could not see. But this incision is just gut wrenching to me.

 

Tuesday of this week was the first time Danielle really started showing signs that she was becoming a little less painful. This was WONDERFUL news! The weekend was really tough on all of us. Trying to balance her pain with a new drug, rather than just up'ing her morphine was really tough to get all of the doctors and nurses on board and understanding her. She has such a high tolerance for pain that it takes a lot for her to show she's in pain, and if it gets to the point where she is telling you, then its often too late and making her comfortable is a tall task. We spent a lot of time sitting and holding her hand, watching the clock, praying, and doing anything we possibly could to help distract her enough to fall asleep.

 



 



Probably the biggest news over the past couple of days is that her tummy has started to have more bowel sounds. Her tummy is waking up from her 2 surgery's and they have decided to try and feed her starting in very small amounts. They are using a tube down her nose and they have it hooked up to a pump giving her 5 cc's over the course of one hour every hour for 12 hours and then if it goes well they will up her feeds from there. This is wonderful news. Although they have been giving her nutrition and lipids thru her PICC line, this is the good stuff that she is use to having!

That is about all the update I have for now. It is just a waiting game at this point to get her CRP number down below 0.5, which it is still at 10 as of yesterday. And also making sure that all of the infection is out of her shunt etc before they decide to put it back in. We are anticipating at least another 1-2 weeks in the hospital if things go as they are now, slow and steady. Tomorrow marks the completed week #2 and the start of week 3. I cannot believe it. I just cannot believe we are facing this again. I swear Brad and I are running on auto pilot, trying to balance jobs, kids, hospital, time etc as much as we can. If you have prayers we appreciate them so so much. Prayers for our girl are the most important and then prayers for us as a family, that we will be home again together before the Holidays.

Sending love to you on this Wednesday.

Surgery # 2 today.....

Quick update.....last evening the docs came to Brad and I and told us that the culture from the day before that they took from Danielle's CSF (Cerebral Spinal Fluid) from her shunt, had bacteria growth. This meant that part of the shunt that they had left in, now had to come out. UGH. Absolutely disappointing for Brad and I and most importantly Danielle, but this also complicates things a lot further.

So last night was rough. 3 am MRI that she wouldn't sit still for. Very painful still even with increased pain meds plus a muscle relaxer, and the MRI picture they got was not clear enough. So later this morning they took Danielle into surgery to remove that part of the shunt in her brain. The surgery was a success, she now has the ventricular drains in place. This is a drain that goes into her brain and drains into a bag with the flow of gravity outside her body. The super sad part about this, we are unable to hold her. It is crucial that her ventrics be adjusted and stay with how she is positioned to make sure that the flow of fluid out of her brain is just right. Here is what it looks like, I will show you on Danielle later, or you can revert to last November's post for pictures of her:

This likely will mean a couple of things. For sure another brain surgery down the road, when she is infection free, to put the shunt back in. It is NOT an option for her to not have a shunt, she has to have that to live. So another surgery at some point.
And also potentially several more weeks in the hospital. Plus with all of the recent things going on with her tummy, finding a new place to run the new shunt tubing from her brain. Before with all of her shunt's it has been ran into her tummy, well now they are thinking that it will have to drain to her heart. This is scary and I am just trying to take this all one day at a time and not think about that just yet.

So they will continue to take cultures daily. When she has her first negative culture they will then need 2 more negative cultures, so many days apart before they will go back and put her shunt in. As far as her tummy, that will be yet determined by the Pediatric Surgeons in the days coming.

Please please please, if you have it in your heart, pray for my girl. I am just absolutely sick that we are here again, in a similar place with a very very scary situation on our hands. I am just sick that she will be there for likely a few more weeks at the least. Please pray for comfort. I really really am stressing that they need to get her pain under control. She has been too painful up to this point and we need to figure out something else to keep her comfortable.

I will update again probably on Monday unless something changes. Thank you so much for checking in. Thank you for keeping Danielle in your thoughts and prayers, it means the world to Brad, Dylan and I. Hug your babies friends.
Much Love on this Saturday-

Surgery update.....

Danielle's emergency surgery on Wednesday went well. She was in for just about 4.5 hours and the surgery was schedule for 2-4. So I was pretty nervous waiting and waiting and not hearing anything. No updates was hard on this mama. Because of the quick timing, Brad was taking care of Dylan and the activities he had going on. My Dad surprised me and drove from Des Moines and showed up with dinner right as her surgery got done. It had never felt so good to see a family members face in my whole life. It allowed me to break down which I needed.
For surgery they wanted to go in with a small camera, in an incision above her belly button, and look around. Then Neurosurgery was going to be working on the top part of her body and removing her shunt. The really good news was that neurosurgery was able to remove only the part of her shunt that was in her tummy, they did NOT have to take out the part that is in her brain. That was  HUGE relief. That part had not been infected and it is pretty traumatic having surgery in your brain and if they could avoid it at all cost, that is what they were going to do.
The Pediatric Surgeon was not able to look around with the camera so sadly, she had to make the incision quite a bit bigger. What she found when she was in there, was that the shunt tubing was adhering to Danielle's intestine. There was a large part of her intestine that was VERY angry. She said it was moderate to severely irritated and angry. She described it as if you get a cut on your arm, and it gets infected, and red and inflamed. She said a part of her bowel was the same way. At that point she pretty much ruled out the partial bowel obstruction, but rather it was inflammation that was causing a lot of the issues.
She was able to thoroughly rinse everything out. move things around and take a VERY in depth look in there to see if there was any type of abscess etc. Nothing. So Neurosurgery took the shunt tubing out and she cleaned out the rest and looked around and that was about it. During surgery Danielle's blood pressure dropped quite a few times and did get pretty low. So they were keeping a very close eye on her to make sure she recovered ok.

When she got back to the room and was intubated, with the breathing tube. I was not surprised and quite frankly this was going to help her rest more peaceful over night and let her rest and not worry so much about breathing and resting. Well we quickly learned that her level of pain was high. She was very uncomfortable. Flailing around quite a bit and over the night it took up'ing her pain control meds quite a few times plus adding in sedatives several times. This absolutely broke my heart but it was needed. Her labs also came back and her hemoglobin had drastically dropped after surgery which meant she needed a blood transfusion ASAP.

Thursday morning she was showing signs that she was ready to get that breathing tube out. She was starting to wake up a little bit and flutter her eyes about. I talked to her and she immediately started to cry. It absolutely broke my heart.

Yesterday afternoon they were able to take out the breathing tube and just have her on regular room air. Poor little peanut tho is so painful and sensitive. You can tell she doesn't feel good. Any little noise makes her scream and cry and she really just wants you to sit beside her and hold her hand, it absolutely breaks my heart.

A couple other things going on. She has a catheter in because they want to monitor her bladder pressure because they did surgery in her stomach. She also has the ventricular drain in, coming out of her clavicle. So because the top part of her shunt, in her head, is still in place her shunt is still functioning. But they took out the tubing that goes from the clavicle so it needs to be able to drain some where. So they have a tube coming out of her clavicle area and draining into the drain like before. Because of all of this, we aren't able to hold her. Last night I was able to make some silly noises and get her to smile. But really she just wants loving right now and that's what I want to give her. She is so deserving of that and more, it breaks my heart.

We will continue to keep you updated as we learn more. I need to meet with the resident now and see what the findings of today have been. Stay tuned for more updates. We really appreciate all of the prayers that you can send our way and give our girl.

OVERDUE Update-Please Pray....

I should absolutely know to update more often, and update on the good, fun things in Danielle's world, not just the scary things. I don't have a ton of time to update the entire story because I just got a phone call and need to rush out. Here is the just of Danielle....

We started battling what we thought was a UTI about 3 weeks ago. But with antibiotic she didn't get better, any better. So I made an apt to take her back to her local doc. Come to find out she never had a UTI and they failed to explain that to us in full and tell us to take her off the antibiotic. So she got a not necessary 10 day course of antibiotic.
In the mean time she was having low grade temps on and off. Danielle runs cool usually so this was a little concerning. I made the decision last Thursday to get her back in. We went back to our local doc and she checked her for EVERYTHING. And I mean everything, strep, rsv, UTI, Blood infection, and on and on. Nothing came up, except her labs were really high. Her CBC was high and more importantly her CRP, which is her inflammatory marker was REALLY high. Like it should have been less than 5 and it was 264! So she was SICK. After reviewing as much as we could, including a chest x-ray, we decided to get her to the U. The only thing we had not checked was her shunt, and it was a very reasonable concern at this point.
So I rushed her to Iowa City. They immediately did an MRI and a tap of her shunt to test her CSF fluid for infection. The good news, her CSF was clear, the bad news, she had an unknown infection somewhere making her really sick and they didn't know where. So they admitted her finally about 1am.
All thru the weekend they were testing things on her body. We came to the conclusion that something was going on in her tummy. Appendicitis wasn't ruled out and neither was Peritonitis, which is an infection of the peritoneum that can develop in several ways. Many abdominal organs contain germs that do not occur elsewhere in the body. If they spill their contents into the peritoneum, infection is the result. Infection changes the dynamics of body fluids, causing them to seep into tissues and spaces. The gall bladder, the stomach, any part of the intestine, and most especially the appendix—all cause peritonitis when they leak or rupture.

So she has an obvious infection somewhere but what is causing it, nobody has been able to figure out. Not only is Neurosurgery working on her but also Pediatric Surgery and Neurosurgery. So they started her on an IV rocephin antibiotic to see if it would help. After 2 days it finally started working. Good news right!
Well then they wanted to put a suction NG tube down her nose to see if we could suck out some air in her tummy and also see if any fluid would come up. Also, xray was showing a possible bowel obstruction. So they set her up with the NG suction and then took her to the Intensive Care unit and put a PICC line in. This helps so she can have long term antibiotics and also they can draw blood from it so they don't have to poke her so much. So that course of antibiotics puts her there for at least 2 weeks.

Well Brad and I have been switching off here and there staying at the hospital with her. IT works well and allows us to work a little bit and also stay at home and sleep in our own bed, plus spend time with Dylan. So last night Brad was there and she was more fussy and irritable than before. Noticeably irritable and the IV Tylenol wasn't touching her pain. So they decided to start her on a more broad spectrum antibiotic called Vancomycin, Its a HARSH drug but kills lots of bad stuff. She's been on it before and thankfully they thought it would work again. Well not so much.

After 2 days of the  Rocephin her labs improved. But yesterday with fussiness they added the Venco and then this morning her labs are back up high again :-( This means surgery. They have to get that shunt out of there, that tubing is in her tummy and laying in that infected fluid. Also she has these balls of infection that are forming in her tummy and when that happens the medicine cannot get there to help them heal.

So the update I just got is that it is time for surgery. The Resident is very good at keeping us informed and I am rushing down there after this update. Not only does the shunt need to come out but they need to put a camera in her belly to see exactly what is going on. They will be taking her into surgery sometime in the next 4 hours. This does mean she will be moved up to the PICU unit and also they will have the ventricular drains in again. Last time this meant a month long hospital stay :-( It is looking like that could very well be the case again. I will know more this afternoon.

Please if you find it in your heart, pray for our girl. I don't understand or know the reasoning behind all of this but it just breaks my heart. She is so tough and just yesterday morning showed me some smiles and I heard some words from her. Now the pain is back and no words from my sweetie and no smiles. I will make sure and update here as I know more hopefully this evening.
Thank you for checking in. I promise when this is behind us I will be updating more positive things, because this sweet girl has a world of adventure that she is conquering on a daily basis <3 span="">