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.~

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