Tuesday, December 16, 2014

22 and counting...

I found myself counting today...22 days now in the PICU. I know to some that may seem like a ton, maybe if youve been there it may not seem like much, to us we dont know any different with what this little girl has gone thru but trust me, some days it's a challenge. But I think back to over our 130+ days in the NICU and I think wow, we can get thru this, we surely got thru that. There are kids who are far more sick, who won't be home for Christmas and we have spent Christmas in the NICU so I do know what it's like, but I still just want my family home, together. It's really like a secret society up here, some kids alone, some with loved ones, but all very sick and there for a reason so please keep all little ones in your thoughts this Holiday season. It's the best place to be if you need to be, but it's not a place you ever want to be.

Danielle will have surgery this week to put her shunt back in. We are waiting for a complete game plan and when all is ok we will share how she is doing. Tonight they did an Mri that took a little longer than expected to check things out. This time is different for us, a different Neurosurgeon and plan so it is taking us some time to adjust.
Danielle has been doing well. They never got to the bottom of the fevers and thankfully they did subside on their own over the weekend. She's been eating well and at times pretty happy and at times pretty sassy and other times pretty sad. She's such a trooper. She really is so inspiring to me. I learn a lot from her daily and as much as I want to be home, at least we have her to be with at all.

There is a virus going around the PICU so they are testing her for V.R.E. hopefully she will continue to be negative for that. At times we think she had pain so we are giving tylenol for that. She is also still on her 2 mega drug antibiotics, the venco and Refampin. These will continue thru surgery.
The past day or two her breathing has been a bit more harsh sounding at times. Last night I did call RT in and asked them to do an albeuterol neb treatment and it did help, so not sure what that was about, just praying she stays healthy.
Here is a picture of one of her incisions. They opened this up and removed her shunt. There is another incision where you can see where the ventrics go into her brain to drain the Cerebral spinal fluid outside her body temporarily. She also has stitches in her tummy from where they removed the shunt tubing there.

We've got some really amazing people helping us thru life right now and please know we are so thankful. It humbles us and shows us we are not alone. We have felt and seen your love from far and wide...friends, family and some we don't even know. All we are good at asking for is prayer, and if you have to few extra please send them our way. This has been a hurdle that we will get thru, hopefully very very soon. I just want our girl home with us, where she belongs. ♡♡♡

Wednesday, December 10, 2014

Fighting fevers.....

Sunday evening our girl began fighting her first fever. Unsure what caused the spike or where it came from, a full lab work up was done along with a blood culture and we wait.

Last night I got up there and our girl was so fussy. It broke my heart. I did get some smiles but I also got lots of sass. Its pretty hard when you get so many smiles but very challenging to explain to new nurses how she smiles.....but thru the pain. She is such a strong girl. So i fed her and snuggled her and tried to help calm her a little. She'd had a decent day and these fevers come and go, so we know her body is really fighting hard. Around 10 her fever was well over 102 and the doctors began to get concerned. Again a full lab work up and another culture. It was a really really long night of fussing and sitting sleeping upright in the recliner to help keep her comfortable once we got to that point. Until then while in her bed, we took full advantage of no magnetic worries right now and let her listen to her favorite videos to help calm her down.

They ended up raising her venco level of Iv antibiotic and changing it to once every 12 hours. So they are aware and checking things out. Again, she is still on these mega drugs so they should cover but will not cover a virus. Still waiting on a final date for neurosurgery to tell us when they will put the shunt back in. Between the 16th and 23rd, we hope the earlier of those dates.
Please continue to pray for our girl and that her fevers rid on their own and that tonight she has a far better nights rest for her daddy than she did for me last night ;-) Rest baby girl, lord please help her to rest well.~

Tuesday, December 9, 2014

Smiling thru and prayer....

Saturday and Sunday were pretty uneventful for Danielle. That is what we like, nothing alarming. Then Sunday night came and Mommy was on duty and noticed Danielle was pretty fussy. Just giving us a little bit of sass, not in a playful way. I had a hard time handling her, she was squirmy wormy, feisty and I started wondering if she was uncomfortable. Tylenol didn't cut it really. I fed her at around 9pm, dosed off while I was holding her and woke up to her seriously almost jumping out of my arms. I put her in bed and let her fuss to sleep. The nurse said she had been kindof warm but I was holding her so didn't think much of it.
Thru the night she was feisty off and on. Waking up crying. I was so sleepy, you know the deprived sleep kind that when your kids wake up you're not sure if its a dream because your head is so foggy. I would wander over to her, rub her back so she went back to sleep then make my way back to the couch hoping to fall asleep. We did this all night long.
4am she was up and crabby. I fed her, gave her Tylenol and held her in the chair and we both went back to sleep. The day shift came on at 7 and I fed her again and we went back to sleep. The docs came in and said her temp was off and on and they weren't sure if we'd been masking it with Tylenol for a few days. Ugh, that made sense, we were doing Tylenol based off of her heart rate at our discretion, not thinking about temps because she hadn't been running high. Well no more than a little while later I could feel her burning up as she was laying on me. This became quite the cause for alarm, docs in and out, a full workup now coming including blood cultures. I had noticed Sunday her lymph nodes in her neck were showing and that was not typical. It was like they just appeared. Well maybe that was cause for alarm then. The docs measured them at 2cm, over 1cm is alarming. So the workup was necessary.
As of today her labs seem pretty typical for Danielle and her blood culture prelim is negative. They will let it grow for 5 days. I talked to the CDC doc and he isn't sure if its a virus etc, but she's on the mega drugs for any illness, so she's covered there.... unless its viral. The plus is that her CSF cultures are still negative so they are just watching her close.

This morning brought the dreaded swallow study. We agreed to it because we have to be able to work a little and be parents to Dylan, and the reality is we just can't physically be there 24/7, although we are there about 20/7 anyway ;-)
So I arrived and went with Danielle and the nurse, with the full agreement that if I didn't like how they were doing things we would leave and stop the test. The docs told me we would be doing it and positioning her how we do at home. WRONG. We got to Radiology and I was quite frustrated. What's new right, kidding! But seriously it was a joke, I wasn't too happy. They wanted her to sit in a chair for her bottle and then 4 different textures of food. She doesn't sit in a chair at home for bottles!They wanted to test all textures even tho those may not be what she is use to at home. I was really getting aggravated, how can you test a kid on a texture she has never had before? Are you then setting yourself up for failure and is that really what they wanted, to be proved right? I am a positive mama and we know our child really well and this wasn't making sense. I was thinking this is just so unfair for her and I really don't want to put her thru it. PLUS she just had a chest X-ray on Monday when she spiked the fever and guess what it was clear! SO......if she is aspirating, we asked the docs, wouldn't that show on x-ray, yes it would was the answer. So that right there told us all we needed to know.....but we went along with the study just to make everyone happy and to say that we did.

Guess what, she did perfect, she passed, no aspirating and I tell you what, I was gloating. I knew it, we knew it, we believed in our girl, we knew her....AND the biggest lesson here, there are kids out there that will prove doctors wrong. I know what studys show, I know she is a noisy eater, I know, but I am telling you this is normal for her! The radiologist was actually in the room during the test and he was giving commentary, it was quite funny. The SLP gave her the first bite, we watched it on the monitor and the radiologist says, 'that looked perfect.' Then the next swallow he says,' that went right down.' Then the next one he says,' yep looks good again.' I am trying to hide my smile the entire time as the SLP is shaking because I think we made him nervous. That was not our intention, but come on, don't be sneaky with us. We left the study and that girl was starving. The docs came in, said we need to recommend positioning with how we feed her at home but they can now feed her if we aren't there which was great news. This relieves a large amount of pressure off our shoulders plus we know it really is safe to feed her how we've been feeding her for years. So we are all double sure now that things are a-ok.

So I left there and went to work a little bit. As I was driving I called my Dad and shared the news, called Brad, text a few friends and then I had time to think.....and I started sobbing during my drive. It is just so hard. Its so hard being  a parent anyway right? Its the most rewarding job ever, but I want to do everything right, I want to give my kids so much, as does any parent. And not just things because that doesn't necessarily show love, but I want to give them a life that they think it so good morally, that they can't wait to share those memories with their kids some day. I want them to know in their heart that they are loved, and their parents will go up a mountain to help them as much as we can, with anything within reason. I want them to have a good life, and more than anything I want them to feel confident with themselves. That is where my biggest frustration comes in with negative people, I just don't have time for it. How dare you speak that my child can't do something, or isn't doing something right when you don't really even know them in the first place. I know what the statistics show with kids that are delayed and have musculoskeletal issues. I just feel so bad for those people who are just negative and so statistically minded, like, I know they have a heart right, somewhere in there? And I hope they want to believe in these kiddos, so for once, follow your gut people!! Take that education, followed by your gut and talk things thru. I want her home with us, I want to snuggle her all night long in my arms under the white lights of the Christmas tree and I want to protect her with all of my might. I felt really good knowing that Brad and I knew in our hearts we were right, it felt good to know we were right, but at the end of the day I want more people believing in my daughter. That's all I want. I don't want that in your face thought when we show them otherwise, I just want a doctor, and we absolutely have a few that will say, let's talk this thru. Tell me what and why your thinking that and I will tell you the same. That is a plan of care. We have had it before with several wonderful people in the medical field, its just too bad that it doesn't happen more often. I don't want to have to get mad and frustrated begging them to believe me as a mama, I just want them to do it, just listen. That's all I want. I know they just were looking out for her safety and protecting themselves because they have to, but darnit it could have been so different if only that nurse hadn't jumped the gun and gone behind my back and just caused this huge spectacle. So, lesson learned for her I hope, absolutely.

We are still looking between Dec 16th-23rd for her next surgery and she will be home 2 days after that next surgery. Pray for us please. We feel your prayers and your love and strength and let me share something else.....Our Thanks....
You all are pretty amazing. You know who you are. We do not receive well, I don't reach out, I know its a flaw of mine but I'm not good at it. For all you all have done, for all you have sent and prayed for and shared, we are forever grateful. If you're here reading this, we thank you. Thank you from the bottom of my breaking heart. Thank you for loving our girl, for loving our family and for helping us. There are so many people out there hurting, with sick loved ones and so many people who I am sure have it worse off than us. This is pretty horrible for our girl, it is and its scary, really scary...so thank you for helping Danielle and thinking of our family. All we ask of if you find it in your heart is prayer, it helps us, we believe in the power of prayer, its proven to be God's work. We sincerely thank you from the bottom of our hearts.~

Saturday, December 6, 2014

Looking ahead!

We are looking ahead. This morning Daddy talked to Neurosurgery about a plan of action. If Danielle's CSF sample results continue to be negative, we would be looking at her next surgery date being anytime between December 16th and 23rd.
Whew, now its just getting there. Let's pray it is the 16th, I want our girl to have some festive holiday time at home. I want to be able to bake Holiday cookies with her, take our annual tour of Christmas lights, family pictures, waking up and seeing what shenanigans our Holub Elf got into, sleep next to her special pink tree in her room. All of things I want for my girl. Soon, very very soon. I pray. Please pray. Please send whatever love, strength, thoughts and prayers you can our way!!~

Friday, December 5, 2014

Thunderstorm...hopefully before the sunshine

If you know us, you know we are hands on parents. Let me start there, but first I'll share the promising news.
We are still waiting for a FINAL Negative culture, however the culture from 12/2 has yet to grow anything. This is awesome news, however this is JUST the preliminary results and it needs to sit and not grow for 5 days before the result is final. Then they start counting out 14 days of antibiotic treatment before they will internalize her shunt again. So if that test shows negative on Sunday for the final result, then today would be Day #3 of treatment, and we need to get to Day #14.

Danielle is doing pretty good. It is still really hard to tell when/if she is in any pain. So we are having them do Tylenol round the clock. Yesterday she only got 1 dose in the morning before I went to work, I then got up there last night around 8 and she was fussy, mega fussy. She just wouldn't calm down, she was squirmy and wouldn't sleep, chatting in a sassy way....and I am certain it was because she was painful. As soon as I fed her and gave her Tylenol, within an hour she was settled down and slept all night long, which was SO nice!

So we've been feeding her for a few days now and she's done well. It is of course very hard when we cannot be there because we are at the mercy of the nurses. Thankfully since we've been there, for over a week now, we have only had 2 nurses that we didn't know. That is pretty darn good, and bad I guess if you think about, really knowing that many staff from her previous hospitalizations. We've even had a few nurses who took care of both kids when they were in the NICU that are in the PICU now and have seen Danielle. So seeing the kids 6 and 8 years later is pretty cool for them.

2 days ago I headed off to work and the day nurse was going to feed Danielle. No biggy, I give them tips etc because she is a finiky eater, always has been. She ate great I was told, no biggy. Yesterday then, a day later, I am listening to rounds and they are standing in the doorway going over things with me so I could hear, because I was holding Danielle, we finish talking and they move on...or so I thought. So they moved just to the side of the door and the Fellow says, 'the nurse had a few feedings concerns so we are going to consult the feeding specialist.' Instantly my blood starts to boil, funny they say that AFTER they leave Danielle's room, little did they know I heard it all. It may seem like a small issue however it is not, for us.

So yesterday she had this awesome male nurse, who she had, had before. He was so great with her, got her out and put her in her stroller, played with her all afternoon while I was at work, fed her and she did great, just had a great day with Danielle. I asked him last night, 'so, what's with this feeding specialist, because he never came up when I was here today.' He explained its just a consult etc and that's it, no biggy. I was just testing the waters and it wasn't him who raised the flag so I let it be.

Today, we have the same nurse back that we had 2 days ago, the same nurse who alerted the doc about her concern. Mind you, if you are a nurse you may be rolling your eyes......yes we are 'THOSE' parents, the ones who step in because we know we can, I'll talk about that a little later.
So I stayed up there this morning. Fed Danielle and felt pretty comfortable leaving for a few hours during the day and I'd be back tonight. I knew this nurse fairly well, but I did tell her specifically what I didn't want done. I didn't want her bandage on her head changed, I wanted her fed this. and this at that time etc. and that I'd call to check in.
I called around 3:30 to check on Danielle. She was doing great. Super happy today, ate 6 ounces bottle, did a great job and the speech pathologist came in and she ate about 1/2 pouch for them, no biggy. Ok note I said she said 'speech pathologist' NOT feeding specialist. But whatever, I was at work and feeling good about Danielle's day and me not being there for a few hours.

SO tonight, Brad went to his company Christmas party for a much needed night out, Dylan and I had big plans to have a sleepover with Danielle, or we'd come home very late. It was going to be a fun night with my kiddos'. I get there and Danielle is asleep! I was shocked, the nurse said she was playing all day and just didn't have time for a nap so she was tired. Ok, so I started to get her bottle ready for when she woke up and the nurse saw me doing that, she came in and said, 'the docs don't want her eating until they talk to you.' I knew then exactly what was up. About that time it was a shift change, Danielle woke up and I flipped her from her belly to her back when I noticed what was exactly done today.....
Her head dressing was changed, her belly bandage was removed and her stitches were exposed, with no bandage covering, and her PICC bandage was also changed and iodine was everywhere. GRRRR.
So the Fellow doc comes in, poor guy knew I was mad. He put his arm on my shoulder and before I even say anything he starts apologizing. Saying she can't eat right now until she has a swallow study done, the feeding specialist today had a few concerns that she could aspirate, so we need to wait to feed her until the swallow study hopefully tomorrow. Ok he leaves and I am starting to get pretty mad.
Then the Resident doc comes in, poor guy....I explained myself again and this time I learn that they will let her have one of her antibiotics orally but not her bottle orally. Hmmm, coincidence that the med they will let her have orally is that REALLY expensive Refampin one, that treats her infection. Of course they won't let her have IV for that med, remember me saying the other day it was too expensive right. Well this just adds fuel to my fire. So you're basically telling me you are worried about her taking anything orally because she could aspirate, because she threw up a little bit after her bottle today, so she can't eat or have oral Tylenol, but she sure can have this huge 20ml dose of this super expensive medication??...makes total sense to me....NOT. So I feel my blood start to boil more.

So then the head PICU doc comes in, I start to tell him that I am pretty upset. He is a really nice doc, we've had him several times and he was there the night Danielle was admitted after her emergency surgery last week. He could tell I was frustrated and all of a sudden he says, 'go ahead, let me have it and let me know exactly what's going on.' Well he opened that door wide open, this mama let the big guns out and I let him have it. Water works started, which I usually refuse to do anywhere around Danielle, poor Dylan comes over and starts patting my arm because he knew I was so upset, and I just went off!! All of my frustration came out. We went thru this last time Danielle had this infection in 2013 when she had to be up there for so long. She was just starting to get better and it was a waiting game before they could do surgery, when all of a sudden you have this doc doing her round in the PICU for a few weeks, looking for kidney issues, she even told us that, and bam she see's Danielle's kidney numbers are elevated by .25 and all of a sudden she's paged Nephrology etc. I mean seriously.
So this time its feeding issues and someone looking for something. Granted if there is a problem I am not that ignorant to avoid it, but Brad and I have NO problem. I absolutely refuse to do a feeding tube for convenience, which is truly what I feel people do. It's been suggested to us before by docs for that reason, so we don't have to worry about it. No way, wrong parents for that! I flat out told him, today's nurse was purely mechanical, and if you don't know what my reference is here's my short one, some nurses are good with mechanics, more than one on one. So they are good with IV's and Vents and dressing changes etc, yet will leave her bed dirty all day long...then you have the hands on nurses, the ones who want to clean her up every time they are working, and give her cute matching clean bedding, and come in and play with her extra when they are bored and if she's fussy they will really try and figure out why vs. just giving her a med to shut her up, those are the nurses we like. If she needs a mechanical nurse like after surgery then great, but those kind are less desirable for us. They may be great nurses and I am sure they are, but we don't need a mechanical nurse right now. Today's nurse was purely mechanical and sneaky. If there's concern then let's talk about it, don't go around us parents and ignore the alerts you've raised, tell us what your concern is.

So I talk with the doc, and I vent, and the fact of the matter is, we can feed her, she eats great for us, they are comfortable with that which is great. Tonight she can eat....for us. However, if we ever can't be there for a feeding they will feed her via feeding tube. I cannot even express how much this pains my heart. Pains me/ us.. it is frankly impossible for us to be there for every feeding. She eats every 3 hours. We have a little 8 year old boy who needs us, we both have careers, we have a home, we have a home for sale we are trying to get ready for a renter to move in, we have only one place we can be at a time and as much as I like to try, we can't do it all. I hurts me to type that. Darnit if I can do it all I will give it my best to do it all. I am not a quitter, don't tell me I can't do something because then you've challenged me..

So this weekend we will do it all, we will make it all work. We will be there for every single feeding and not depend on them for nothing. My heart hurts. Tonight this mama is a mess. The Thunderstorm has finally hit, just as things were starting to look towards the sunrise. I knew it would happen and it did, I just didn't know what the circumstance would be. POOR peanut is hungry :-(

What is the lesson in all of this? Why Danielle to go thru all of this? I just want to take her and put us in a room until surgery and not let anyone else in, I want to do it all. She's my girl, we advocate for her. We are 'THOSE' parents..... remember! We stand up to doctors. We fire them from her care if we don't like them. Same with nurses, if you aren't positively going to do all you can to help my daughter reach goals, then we don't need you. Same with therapists, if you are negative and say that she can't or won't do this or that, guess what...we don't need you either. Some may call it denial, some may call it ignorance, some may say its perfectly fine because we BELIEVE in our child. It is our job as Danielle's parents to give her the BEST. I have vowed from day one, in that NICU when they told us that she had a brain hemorrhage, when they told us that life would be different for Danielle compared to how it is for Dylan, and it would be hard..... I looked those doctors in the eyes and said, ok, whatever....this is our life and we will do whatever we need to do, for her, to make it the best and to prove you all wrong. We've done well at that, and tried, and been successful, in many ways. We have really prided ourselves in certain ways because of how we took the time to think things thru, before jumping to agree to a suggestion that really wasn't in her best interest. Feeding is the perfect example. It takes time, I will give her the time, she is weak right now....she's on her 7th brain surgery in just over a year. Come'on people, for us she is O.K, and that is what matters. But for Therapy, choosing doctors, and even moving our family to pick the BEST school education for her. I don't succumb to statistics, I get that from my mama. She fought cancer the holistic way for 9 years. I know when there are medical things necessary for our girl, and right now her being in the PICU is a prime example. However, I want it understood that we still have a voice. We still want her to have her vitamins and omega's etc even tho she's in a hospital where she also needs drugs, and you know what, we do it. She's getting her greens, her omega's, her probiotics, her multivitamin and her Vitamin D3, because we know she needs it now more than ever. We will help her however we can. I will never ever stop searching to better things for her... Researching the best of the best out there for therapy or whatever it is, and promise, and I will get her to where she needs to be. You know, Dylan has this super cute song he learned in Kindergarten called, 'I am a Promise.' It makes me cry every single time because it's so cute and true, but you know what, it explains the life of every single child. A Promise. A Possibility with a capital, 'P'. That is every child, they all deserve a chance. That's our girl, she deserves that too. She's complicated, I'll be the first to tell you that, but how about trying to figure her out first before you jump the gun. I will tell you she has the best Neurosurgeon in the world, and she has even confused him. I told you she's pretty perplexing, but as soon as you see her twinkling smile you will forget all of that.
I Am A Promise! Listen Here!

And our All Saints friends made some super cool cards for our kiddos! Love that place!

I'm not sure if my lesson in this, is to give some of our voice away and trust more in others? I don't know. I don't think so. I just have a gut feeling and I've got to go with it. If you are a parent who is afraid to have a voice, don't be. You can have a voice. You can stand up for your baby or child. You CAN and SHOULD be your child's best advocate. We are that for Danielle, and we will never stop. It's storming pretty bad tonight, but we will get thru, all in her best interest. But tonight this mama's heart is breaking. I reached the point where I had to walk away and turn it over to her Daddy. Thankfully we balance each other well. He left his Christmas party and headed there to take over, care of our girl. I am at home with my little buddy, Christmas tree twinkling in the background and all I can think about is wanting my girl home. She deserves to be home, being loved, being snuggled and soaking up every ounce of Holiday around us.

I hope soon, very very soon. I knew this would be a long road and it wouldn't be easy. I will take a few deep breaths, some New You to help me dream sweet and tomorrow will be a new day. A day that we will continue to be thankful for all of the blessings around us, no matter how hard the challenges we are in. I will keep the positivity burning inside me, nothing will put out our flame. And we pray that this is just a little thunderstorm, but I know in my heart, the sunshine is peeking thru.~

Thursday, December 4, 2014

One Step at a time.....

Post secondary surgery day 2 was slow and steady. Surgery went as well as could be expected although the morning started off a little crazy.
They weren't to do her surgery until mid afternoon on Monday. So I thought I would stay at home in the morning, work for a few hours and when surgery time was announced I would make my way to Iowa City.
My husband called me pretty anxious at 740 that they were about to rush her into surgery, plans changed. UGH, I wasn't there, I was just getting in my car and I wouldn't be able to kiss my baby girl before she went in. Thank GOD Brad was there and was able to take her to surgery as we do each time. My heart sank and I just couldn't get to Iowa City Fast enough. A approx. 3 hour wait would seem like forever! An angel friend of mine just must have known that I was anxious, without even knowing what was going on, she called in a gift certificate for us and we promptly took a few minutes for a breather and coffee. Thank you friend, you were divine intervention that morning and it was a perfect distraction and wake me up!
 We met Danielle up in the PICU just as she was arriving. The surgery went well. They removed the remainder of Danielle's shunt that was in her brain and placed ventricular drains. These drains drain the Cerebral spinal fluid from the cavities in her brain to a bag outside her body. They take place of her previous shunt for now. These drains flow with gravity depending on how thy are set up. For that reason we are unable to get Danielle in and out of bed on our own. It would be very harmful if those drains drained too much or too little fluid, and they are only attached with one stitch, so if they pulled out it would be horrific. They have to clamp the drains when we move her and we have to get the help of the nurse, it is a two or three person job.

Later that evening we spoke to the CDC Doctor dater surgery and asked him some questions about her plan of care and what were they going to change. That is when he told me that she'll be here for awhile. They will not allow neurosurgery to go back in and internalize a new shunt until she has had negative cultures for 2 weeks. Wow! My heart sank, this is a longer road than we realized. We know for the safety of her and because this is the second time in just over a year, but holy moly, it's the holidays :-( and we are waiting for a final negative culture still.

Because her infection was so severe they are now treating her with an additional antibiotic that is also a Mega drug. Rifampin is the name. It is not commonly used however it is used to treat infection in hardware such as plastic, metal etc like Danielle's shunt. It's so powerful, and expensive that they would not give her a IV dose unless she really didn't tolerate oral doses. Also it is orange and not only turns her tears orange but also some of her skin in her nose and her stools! Crazy right! Thankfully she takes it we'll & is getting oral doses twice daily.
We have started feeding her again with her bottles and formula and also puréed organic pouch food and she is doing well. Of course she prefers dad and mom, & she has made a mess of a few nurses but is eating ok for them too.
We are all a little stir crazy. Not sure if we are coming or going. Dylan Is now home and it's just a lot to handle but we make the most of it the best way we know how......by being thankful for what we have, praying and having the strongest most possible outlook, envisioning us all at home again hopefully before Christmas.
Thank you for your love and support and checking in on our girl. We ask of only prayers and for you to never take any day or time with your children or loved ones for granted. It's very sad to see all going on around us in a PICU unit that is full. All of these children, including ours deserve a healthy chance at life and to be healthy enough to go home.

Tuesday, December 2, 2014

Post Surgery update...

Friends and prayer warriors thank you for thinking of our girl today. This is a quick update tonight, it's been a long day and she just now went for a MRI to make sure placement is ok..and it's just before midnight.
She had a ventricular drain placed this morning. The surgery took just under 3 hours and all went well. Daddy got the first smile late this afternoon. She's been pretty sleepy and a bit fussy so we are balancing the pain meds. More tomorrow. Here's our  sweet girl for now. Thank you for blessing our family ♡

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.

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.~