Alone on the hospital room

So here I am up at 11:38pm sitting alone in Audriannas dark hospital room. Typing away on one of the hospital laptops that Child life has so kindly been letting me use to keep me somewhat sane since I have been here. We do have a roomate well this is our second roomate since we have been here a lil tiny baby. Who was born at 33 weeks and had a shunt put in. The mom is nice we haven't really talked much. She asked a lil bit about Audrianna and then told me they tested her daughter for cerebral palsy. She doesn't have it or is ok so far. The mom looked relieved when she said it.
Some of us aren't that lucky. Audrianna was 37 weeks she wasn't really that premature and she has cerebral palsy. it's crazy. Every time we stay at the hospital I don't really seem that out of place or uncomfortable. Its like a second home to us. I really wish Audrianna wasn't here as much as she is. But really theres not a whole lot that can be done about it. We luck out when there's kids that frequent the hospital alot here they try to make sure that the nurses that are familiar with those patients get them each time. That's what I love. Audrianna and I know the staff that keeps an eye on her. We know the drs, and the nurses and they know Audrianna very well. They know the difference between a sick Audrianna and a happy healthy Audrianna. Yesterday we didn't have nurses that we usually have and I knew somethingelse was wrong with Audrianna besides the fact that the chloral hydrate that was administered to her for her eeg wasn't wearing off. She hadn't peed since the 27th after getting 2 small boluses of iv fluids. She barely was drinking and she wasn't eatting. I brought up my concerns and the nurse said she would keep and eye on Audrianna. I can't really blame her for not noticing that something was really wrong with Audrianna because it was hard to tell because Audrianna was really fatigued from the chloral hydrate. But anyways Audrianna woke up this morning well really its almost 12am so yesterday morning. And she still didn't look right she would sit up and fall right back over and she just looked exhausted still. So we run into her day time nurse who was now in charge of Audrianna. I trust this nurse fully we always have her and she knows Audrianna very well. I told her my concerns and she looked at Audrianna and Agreed something was definatly wrong with Audrianna so she asked me when the last time Audrianna drank and how much, when was the last time she peed ect. Then she said She felt Audrianna was dehydrated and that she was gonna page an on call dr and let them know what was up. Since they page over the pc I could see what was being she put all Audrianna's symptoms and that she was worried. She said if the dr didnt get back to her soon enough she was gonna go ahead and give Audrianna a bolus of fluid. As myself, the nurse and one of Audriannas other fave nurses are watching her at the nurses station the dr comes over and so does a resident. They check her stats her o2 fine but her blood pressure and heartrate are a lil tacky. So they order a bolus of iv fluids for Audrianna and then they put an order in for Audriannas med levels. Which as said in the previous post her levels were very high. It also turns out Audrianna apparently was very very dehydrated. Once they got those fluids in she seemed much more happier well until she ripped out her iv. And of course later on she ripped out the ng tube. Which took them an hr to get back in. Now she has arm restraints so she cant do it again. It sucks shes been so worn out shes been sleeping all day shes been up for maybe 1-2 hrs max. She's asleep now and getting a feed through the ng tube there starting her off slow and slowly increasing the speed of the feeds shes getting nutren junior through the ng tube. The nurse she has now said she wonders if Audrianna would drink it from a cup. She probably would so i'm gonna talk to the gi dr tommorow about it or before we leave sometime in the next few days. because I don't like seeing Audriannas arms in restraints the poor girl can't even move her arms. But u take them off amd she goes after the tube. I know the ng tube isnt permanent they said most likely she will be getting the gtube put in and that scares me but not as much as the fact that audrianna was almost 29lbs when we got here and now shes 26lbs 1oz. They want her to stay in the hospital through the weekend possibly the week too they want to get her weight up and the nutrition she needs in. It sucks first we were supposed to be overnight just for them to evaluate audrianna then it was supposed to be today after Audrianna was alert and now who knows when we go home. It's weird I see parents when I walk the halls who are upset cause there child has to stay a day longer in the hospital or the ones who are complaining that its taking forever for the paperwork to be filled out so that they can leave the hospital. And I think to myself wow if we could only be so lucky and be able to go home too. Some of these parents can go home with there kids and move on with there lives. I go home and wonder whats next what illness is audrianna gonna come down with next, whens she gonna have another big seizure, whens the next time shes gonna refuse to eat or drink and end up dehydrated. Mostly when is she gonna end up back on the hospital and how long is that visit going to be? Or even worse how many more times are we gonna come close to losing her. Its already happened a few times. I sit her staring at my baby girl who is so extremly brave She doesn't even complain when they draw blood several times each day, or when they put the feeding tube in and then re put it in while she was awake even tho she screamed through it both times she still managed to stay strong, The girl whose med levels are extremly high and who was very dehydrated and weak still manages to get up just enought strength to flash a semi smile or a small wave when she shes one of her nurse or drs. The girl who manages to hold a bottle long enough to get atleast a few sips out of it before shes to weak to hold it any longer. The girl who gathered up enough strength to give her teacher, her one on one and two of her therapists hugs when they came to visit her thursday night with balloons. Only for her to be so exhausted after that she whimpered and could barely hold her head up or keep her eyes open. Her neurologist made the comment thursday when she first saw Audrianna that even when Audrianna is at her worst she still tries to focus on the task at hand like when the nurologist was getting audrianna to follow the nurologist fingers with her eyes Audrianna did so and then fell back to sleep cause she was so tired. Sometimes it scares me to think about Audriannas future so I tend to focus on each day and be thankful that we have Audrianna each day that she is not sick I am thankful because on thsoie days shes 100% Audrianna happy, laughing, giving lots of hugs and kisses just being herself. On the days that she is sick but able to be at home I am thankful that she's ok enough not to have to go to the er or be admitted to the hospital. And On the days like today when shes extremly sick and in teh hospital I am just thankful that she's still here with us and that god is giving audrianna more time to be on earth and thankful that he is letting us spend time with her and be with her longer. In all honesty we don't ever know how long we will have to be with our kids or how long they will be with us. With all that we have been through in 4 years I count my blessings daily that Audrianna is alive and that her father and I are both alive. Its not easy to be a parent to a special and needy child but it's never an easy job to be a parent anyways regardless of if ur child has a disability or is perfectly healthy. I would love Audrianna just the same if she was healthy as I do now. God chose me as her mom for a reason.