Sunday, November 30, 2014

It just doesn't add up...

So school starts and we have this super excited little First Grader! How did that happen, 6 and in First Grade?! We made the move so she could be closer to her school, we would no longer be Open Enrolled, we were still grieving the loss of my Mom, but she had a huge part in picking out our new house, but we were settling into a new normal.
I should really know better thinking things are going smooth.....


September 15th, Dylan's 8th Birthday-
I get a phone call around 330 from one of our home nurses that Danielle started wheezing on the bus ride home. This was SHOCKING to me, as that morning she was completely fine that morning. She said she gave her a Nebulizer treatment and she still wasn't much better. Looking at the clock I knew I'd be home in just over an hour so I told her to go ahead and have her upright, do some Vicks maybe on her chest and nose and I'd be home soon.
I got home and no more walked into the kitchen and I could hear Danielle gasping for air. I yelled, 'OMG how long has she been like this?' She said for the past 10 minutes or so. I quickly dialed up her pediatrician office, got a nurse on the phone who could hear Danielle struggling thru the phone, she told me to take her to the ER immediately. I hung up the phone and looked at Danielle and she was turning blue. I called 9-1-1.
The ambulance took her to St. Lukes, after labs and 10 liters of oxygen and 5 continuous neb treatments, she was stable. We bought ourselves an overnight stay for 2 nights. It was determined she had Microplasma, Walking Pneumonia. Here we go again, just like this Spring. After a couple doses of Antibiotic she was better, a little bit.

From here on her breathing wasn't perfect. We did Neb treatment after Neb treatment for months. We went to the University to see a Pulmanologist who advised her lungs appeared to be clear, yet she was still having upper airway inflammation. We did Prednisone when needed, she struggled off and on.

Mid October then I get a phone call from school that Danielle had turned blue while in her stander. I rushed to school to pick up her and her nurse. We weren't really sure what happened exactly. School was MEGA concerned, our nurse just mildly concerned, so we brought her home. Later that afternoon around 345pm, our nurse called me that she just had called 9-1-1 again, Danielle had stopped breathing.
This time I arrived home immediately and the EMT's were giving her neb treatments, she was on blow by oxygen but stable. I was more than frustrated. Again what was going on?! The EMT's gave me the choice if I wanted to take her in or not because they had her stable except for her heart rate was a little elevated. I made the decision to take her in, however this time we were going straight to the University. We had just seen Pulmanology there the week before, so let's go where we are comfortable. We get there and Danielle is fine. Her chest x-ray is fine, no pneumonia, maybe just upper airway restriction again. Pulmanology had already told us that she is an extremely positional kid. So with their blessing we came home. No immediate answers.
Her x-ray did show she was a bit constipated, the stool was pushing up on her left lung and probably restricting her filling up that lung a bit. This was very surprising to us, but with the steroids etc, it can happen. So we started on something to help her.

Halloween came and went. Our poor girl wasn't able to trick or treat because the weather was so frigid. She did get to dress up at school however and enjoyed snuggling in with Daddy. It is so hard to have her miss these things, mommy guilt yet we know how much we need to protect her. At this point Danielle had just gone back to school from being out for 5 weeks because of her previous illnesses.

November comes and we noticed that Danielle's shunt tubing, along her clavicle and down the right side of her belly was a little red. It was a little red down towards her tummy and puffy. But not bright red that usually signals infection. So I called down to Neurosurgery and they said watch it and probably bring her to the ER. So off we go to the University again, we are so lucky we live so close to such a great place.
We arrive down there and the pink/redness was moving up her shunt tract and stopped right about her hair line, it was puffy. They did labs, an MRI, Shunt Series X-ray and all came back just fine, except her labs, her white count was 20, so pretty high. Yet we had no idea again where her infection was coming from. She did have a few white cells in her urine sample, so they treated her for a UTI and we went home. She started on the antibiotic and the redness/pink along her shunt tubing completely went away, it was no longer puffy, all was ok.
We kept her in and out of school for the next 2 weeks. We had plans in place already that she would be out for January and February and school would come to our house up to 10 hours a week. We were thinking that we would probably pull her out a little early.
2 weeks later, Tuesday November 25th-
Danielle had been pretty fussy for the week prior. Not sleeping, eating only for Brad and I, wanting snuggled, and just not really herself. We had just had her checked out and things were ok, so because this started during the middle of the day one Friday, we thought maybe it was her hips. You couldn't touch her legs without her wincing in pain, or her back for that matter. We honestly thought maybe she had a pulled muscle or something. They had showed our nurses some new techniques at therapy so we thought maybe her muscle was over stretched or pulled or something. So I had made an appointment to have her seen on the 26th at the University by her Orthopedic Surgeon, just for followup which she was getting close to being due for anyway. That was the last doctor in these few months that we hadn't followed with, and I didn't want to miss something going on with her hips.
Tuesday afternoon around 315 our nurse calls me, very calmly says that Danielle is having a seizure. I FREAKED OUT. My mind is racing, a seizure, no way, its not possible. we'd always prided ourselves in the fact that she'd never had one even tho she was at high risk and could. I just didn't want to believe it, I wanted to yell and scream. I had a coworker in my office and I know he could tell the sheer panic in my voice. I told him to notify my boss and I hauled ass home. I was crying hysterically, how could this be happening? I didn't understand? What caused this, did someone do something to her? I was angry, confused and just yelling out to God, PLEASE HELP ME!
I couldn't get ahold of Brad, I called my Dad who was able to calm me down a little bit.
I arrived home and really wasn't sure what to expect. I guess I expected her to be screaming and crying and what I found was so different. This was different, there were no EMT's to meet me in the driveway, just an ambulance backed in and I walked inside and stood there for probably a minute before anyone even knew I was there. They were working on my girl who was going on 25 minutes now of having a seizure. They had already given her a medicine up her nose to try and get her to stop and she wasn't coming out of it. They said we're going to St. Lukes. I told them I wanted to get to the U, that I had already called them and they knew she was coming. I will never forget this EMT's words, 'oh honey, your daughter isn't stable enough to go that far, we've got to get her to a close hospital immediately, she isn't coming out of this seizure.' My mind went blank.

I ran into the bedroom and still couldn't get ahold of Brad. I called his office and had them page him. He called me back so confused, he could barely understand me and the only thing I could convey to him was, 'GET HOME NOW.'

They loaded Danielle in the ambulance, our home care nurse locked up our house. It was the most terrifying ambulance ride. Our 3rd ambulance ride in just over 2 months and this one was different. I was so angry and people on the road that wouldn't get out of the way for us to get thru. The driver kept honking the horn at intersections, I was crying uncontrollably, this was so new and I would have been perfectly fine going thru life and never experiencing something like this. Still nothing from Danielle, no crying, no opening her eyes, nothing. I was terrified.
I walked into a room in the ER with 12 people waiting for Danielle, they went to work on her immediately. I slid into the back of the room and could hardly watch. The most kind ER doctor came over and said they are going to help her and did I know what happened. I told him all I knew and then said, I wanted to go to Iowa City but they wouldn't let me. He walked away and I said, 'sir, but she has a shunt.' He looked at me and then said to everyone, 'she has a shunt she has a shunt. We can't treat her here, there is no Neurosurgeon in Cedar Rapids, we must stabilize her and fly her to the U right away.' I was relieved, they were helping her for now but would get her to the place that knows her so well. They did labs and cultures and lots of things and she still wasn't waking up. It was horrible. I asked them if I could ride with them to the U in the helicopter and they said no.

Brad was on his way to pick me up, and I walked out as far as I could with my girl, literally to the red line, and turned her over to the flight crew, praying please take care of my girl. It brought back my NICU days all over again. Sending a critical little Dylan with the flight crew, just praying my baby would be ok.

Brad picked me up just as the helicopter was taking off. There was a crowd standing around watching and I just wanted to yell and tell them all to go away. Some people think its cool to see that, I tell you when you know the person inside and its your baby, there is nothing cool about it.
video

We arrived to her room in the ER and they told me she had another seizure when they arrived there. She was pretty out of it still. They ordered a shunt series and an MRI again to check her head. Her labs came back, that white blood cell count number that was 20 just a few weeks ago remember.....well now it was 56.
We went for an x-ray and when she came back she slowly opened her eyes and we knew could hear us. Her lip was quivering and she wouldn't squeeze our hands at all but those eyes that tell a big story, they would follow our voice.
It came time for the MRI and we stood back and watched, normally we have to go in with her and hold her hands during it to keep her calm, nothing was needed this time. she still wasn't her self.

She came out of the MRI and slowly opened her eyes again, it was such a beautiful sight. We got up to the room and the Neurosurgeon came in within 10 minutes and said, 'well its her shunt, she's got a lot of fluid around her brain and her cavities are full and pushing out which is what caused the seizure.' He notified me he was going to do a shunt tap, where they poke a needle right into her shunt and drain fluid to be sent off and be tested. Because of the amount of fluid in there he would take 4 vials of fluid so it would give her immediate relief. Keep in mind she was still out of it, barely occasionally opening her eyes and still no voice from her at all, no crying, nothing.

Daddy is so good at helping during these things, he held her hands and held her head for the Neurosurgeon as he was draining the fluid. He took 3 vials and when he was on the 4th vial all the sudden she started gagging, then we heard a noise, then she coughed, then she moved her arms and legs and then we heard her voice! Taking off that fluid brought our girl back!!!!! It was the most joyous moment ever, and it told us a lot. That much fluid was pressing on her brain that until that fluid was removed she couldn't have done any of that. She went back to being pretty sleepy but she would wake up when we said her name, her reflexes came back and it was such a relief! The quivering of her lip also went away!

The doc sent off the fluid to be tested. He informed us that obviously her shunt was plugged somewhere, but the x-rays looked fine so he thought maybe somewhere they couldn't see. So they were getting an operating room ready for her and she was going into Emergency surgery. While she would be in the OR, the infectious disease docs would call and notify them of her Cerebral Spinal Fluid Sample results and that would determine how they would proceed. They would just scope her shunt if the infection was negative, or if it was positive they would removed it.
Brad and I took her as far as we could go, to literally that red line again in the OR. We'd been here before but I can tell you we NEVER expected to be here again after last year.
We went and waited, about 20 minutes later the Neurosurgery resident came out and said she did have infection and they would be taking out part of her shunt. We would then go up and wait in intensive care because the PICU is where she would go. We'd been there before and knew our way around, not that great of a feeling.

Just before midnight Danielle came out of surgery. They had only removed the tubing of her shunt and started her on strong antibiotics right away. When the cultures would grow out something specific they would change her meds as needed.

So here we are again. We went thru this very same instance last year in June. We never expected to be back going thru this again. They found a small plug in the tubing of her shunt in her belly, so obviously that is what was causing the shunt malfunction, however where was this infection coming from? Her last surgery she had infection from her previous brain surgery the month before. She is over a year post op now so why the infection this time?
So confusing and it flat out doesn't add up. Not one bit.
Here is what we do know.
Wednesday-Infection comes back as Staph, labs are all off and infection numbers are still rising.
Thursday (Thanksgiving in the hospital) Infection comes back still as Gram Negative Staph bacteria, nothing specific. Heart rate drops to 50 while she's sleeping and Brad is holding her, not common for her.


Friday-Infection comes back as MRSA. Danielle is already being treated with vancomycin thru her IV. Today they placed a PICC line in her upper thigh. This PICC runs in her vein up to her heart and is used when using mega drugs such as the Venco because the Venco burns really bad and is very hard on your veins. They can also draw labs thru her PICC line so they do not have to poke her daily.
We got moved out of Intensive care down to 3JCP for the weekend.
Saturday-Danielle ate a bottle for the first time and did well for me. She had an ok day but was pretty fussy towards the evening. Until this point she had not been getting anything for pain as she was not showing signs of pain. This is good and bad. She is now getting IV Tylenol regularly. Her Potassium is very very low at 2.3. Tried to give her potassium orally, didn't go well, ended up giving thru PICC as it is compatible with Venco.
More Info regaridng MRSA in CSF here, click this for the link.

Sunday update-
The CDC (Center for Disease Control) is in charge of Danielle now. When someone has a serious infection in their Cerebral Spinal Fluid as she does, they get involved and make ALL decisions regarding her care. Our neurosurgeons come in daily and take a fresh sample of her spinal fluid that is draining and send it to the CDC for testing. She has a drain in her belly that is collecting the fluid outside her body and that is what they are testing. The shunt in her brain is still in place, until tomorrow.

Monday they will go in and remove the part of the shunt that is still in her brain, we and they believe it is colonized with infection. This is a little different than the last time she had this infection because during that emergency surgery they took it all out at one time. This time they are taking it out in 2 different steps. However today, her culture of CSF grew out something different other than the MRSA, a part of Gram Negative they have never seen before, they will do surgery tomorrow to remove the rest and she will have Ventricular drains placed in her head as she did at this post last year.
June 2013 Infection/ Ventricular Drains placed. Click here.

This is not a quick process. It is literally hour by hour at this point. The hardest part for us is the unknown obviously. Weeks in PICU, all while still working and leading our life in the best way possible and that we know how. Dylan is being cared for by my Dad in Des Moines for now which is a huge blessing so we can just focus on Danielle. We do not know a surgery time yet for Monday and won't know until Monday morning.
Here is what I ask of you. It may sound cliché, but that doesn't matter to me. You need to remember that today is not guaranteed. This moment you're in is a gift. I know there are far more people struggling more than us. This is definitely a struggle and I do not understand why this is all happening to my girl. I do know that she is teaching so many people about life. Doctors, nurses, people around us, our family, and absolutely Brad and I. Do I think it is fair, NO. Am I angry, not any more. I have to let go and leave it in his hands, there is nothing Brad and I are going to do to make this better right now.
So we love on our girl, we snuggle her and let her know how much she is loved. We tell her how precious she is and what an angel she is to so many. I know for a fact my Mom is rushing around heavens gates to do all she can to have her angels protecting Danielle. We need prayers. We need you to live your life today with your family and let all of your loved ones know how much you love them. Do not take today for granted. I left for work last Tuesday morning with a very fussy girl at home. Our nurse was late that morning and Danielle was crying on the floor when I went in to finish getting ready for work. Dylan rushed over to her side and sang her the ABC's on his own. He sang his little sister to sleep. He is such a blessing to us, he has so much love in his heart for his little sister. The other really strange thing that happened that morning just as I walked away to finish getting ready, while she was fussing on the floor, our house fire alarms went off. They went off for maybe 2 minutes, I am not tall enough to hit the reset button so I kinda wandered around not knowing what to do. Then all of a sudden they went off on their own... That right there I know my Mom warning me that something was wrong :-( I have tremendous Mommy guilt for not knowing that morning that something was wrong when I left for work. I will never ever take any thing, person, moment for granted. Share your love today, take a few extra minutes to snuggle your little ones. Love goes a long ways.~

Saturday, November 29, 2014

Whirlwind....

I really should have been posting consistently about our girl, so brief catch up on what's been happening since my last post!
Spring was a bit rough for Danielle. February 13th she was admitted to St. Lukes with what our pediatrician called 'dehydration.' We stayed for a couple nights, all her labs were pretty much ok, but we knew she seemed pretty sick. With what looked like a possible ear infection that got us an antibiotic and a couple days later we were home.




2 1/2 weeks later we were back sick again. This time throwing up and we thought we better have her shunt checked. So we went to the U. Things came back ok, nothing alarming other than she just wasn't feeling good. So we went home. Danielle started water therapy back up and it proved again to REALLY help her body! Not only did she love it, it was so good to help build up any strength she had lost from being so sick, and still recovering from her December hip surgery.




April comes and I was in Arizona visiting my Mom and Brad stayed back with Danielle. He called and said, she began throwing up, coughing like crazy, sounding junky, it all came back again. After a Saturday trip to our Pediatrician, we ended up asking for labs for one thing that we figured out nobody ever checked, walking pneumonia. Sure enough, labs came back and that was it. Microplasma and we had a sick sick little girl on our hands. 2 doses of antibiotic finally pretty well kicked it. We figured she probably had, had this since January :-(

May came and school was just about over. Danielle was doing pretty good, we thought she was back to her baseline. We had a special visitor come and spend the next few months and we needed to be extra healthy for Grammy time!
We were back in the full swing of weekly therapy sessions again, 3 days a week and during all of this time Danielle met a new friend, Luke the therapy dog! Oh my goodness, he was the most amazing dog and friend for Danielle. We sure all fell in love with Luke right away!



So during the summer months Danielle did pretty good. We had a pretty busy summer with other things but she was able to be outside and enjoying her summer break pretty much as time allowed. My Mom was with us the entire summer, it was so nice. Danielle really loved having Grammy around. She would snuggle with Grammy on the couch while Grammy read her books, they spent a lot of quality time together just as my Mom wanted.
Our new favorite spot for pool time is the North Liberty Aquatic Center! It is amazing and perfect for Danielle. We ventured there nearly every weekend during late June and July. When it got so blistering hot mid July, Grammy was so kind to relax at home with Danielle and snuggle in the a/c.

Happy 6th Birthday Sweet Girl!!


4th of July Funday!!!


My Mom, the kids Grammy, sadly passed away on July 23rd. Her grandkids were the light of her life. This especially touches and melts and crushes my heart all at once, because even the weekend prior to the week before she passed away, she watched little peanut while we ventured to the pool. She wanted to keep her home and comfortable with her in the a/c to have some time with her. That time was so precious and I am so happy Danielle was able to experience such love. She is missed SO much. She always came running from states away to help when her precious Danielle was sick, having surgery, needed her.....she truly is a testament of what unconditional love and support is.





In August Danielle started 1st grade! We also moved into a new home in Marion, and things started getting even more crazy! It was the perfect time for us to move to Marion, although spur of the moment we found a contractor we loved, a beautiful newly constructed home that was nearly complete and perfect for our family. We moved out of Springville just 2 days before school started, put our home on the market and relocated to a city far better and more convenient to our daughters needs. We are so blessed to have her in such a wonderful place, things fell into place nicely.

Danielle would now ride the bus from our house daily, with her nurse, and on her bus are all of her little friends from her class at school! So special and Danielle just LOVES it!
School started and things start to get crazy......the whirlwind begins.