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.~