October 16, 2012

BS hospital experience

Well the last few days have been stressful.
  We once again had to go back to Victoria hospital because Hannah's GJ tube fell out AGAIN. This time it fell out with the tube still inflated with 3mls of water... OUCH! The tube was actually put in really quick, 2 hours after we got there. We stayed the night because I felt there was something else wrong with Hannah. Her heart rate has been 150-180 for the few days before the tube fell out, she was needing oxygen and her respitory rate was between 60-80.  Last time we were at the hospital the GI doctor ordered that we stop draining Hannah's G tube because it is preventing normal functions of the gut and by stopping draining making her have stuff to puke up potentially causing her to aspirate into her lungs making her at high risk of pneumonia. Sure maybe I was being a little paranoid that she had pneumonia but Hannah is not normally like this and the first thing you learn about going home with oxygen is that it hides the real problem.
  The hospital agreed that maybe she was aspirating so they put blue dye in her feed for the night so it would appear in her secretions if she was. She never puked for them... Her lips were a little blue though so she defiantly has a little bit of reflux but still cant be sure if she aspirates. Well the Pedi's ICU was full and there was a big car accident on the malahat and a little girl needed to be admitted so Hannah was being kicked out. I asked for the doctors to please do and xray just to make sure it is nothing, but the doctor still said "I see no reason to give her one". I didn't really agree but the doctor should know best. Maybe she is having a reacting from being over suctioned to the point where she was being suctioned for just taking a breath. Ya that must be it..  Our spot was given up at 3pm, we were given a take of oxygen to bring over to Jeneece's place and the stored all mine and Hannah's stuff in a spare room. Once I got over to jeneece's place another Trached mom was in the kitchen and before I even said what was going on she comments "Man she's breathing fast" . Which then made me think ' if she could notice by just hearing her for a few seconds and her child isnt even on a ventilator maybe something is wrong' . So we keep talking and I explain the situation and decide I better get a second opion so I call children's to ask what they think.
 The doctor at childrens tells me that its hard to asses over the phone but that it doesn't sound normal and if they are to full to accept her back in Victoria that they can send a helicopter to vic to get us but first he needs to talk to the doctor in vic to make sure she thinks Hannah is fine. Well of course, she wont admit shes wrong.. He calls me back and says to take the ambulance home, if once we get home if I still think something wong go to the local hospital and they will send a helicopter there to come get us. So now my plan is to get the F*** out of here so I can get to our hospital so we can go see a doctor that actually gives two shits.
  6 oclock rolls around its med time for Hannah and they are at the hospital and its POORING rain and we don't have a rain cover for the stroller so I call the hospital to ask if they can get someone to bring her meds, after all she is still technically their patient.  Nope they wont bring them, says to bring Hannah over there to get them or get them when the ambulance comes. Who knows when that will be. So I let Hannah sleep as long as I can before its to long after the meds were to give them. I get over there (soaking) standing in the ICU and Hannah starts to decate(oxygen level drops needs oxygen). So I put her on half a liter of oxygen and shes still decating.. I put her on a liter of oxygen and she is STILL DECATING. The nurse says to me "Does she normaly need this much oxygen?" UMMM NO!. And that was the end of that they packed up my meds and said ok go back to jeneece's place we'll call you when the ambulance is here. "um can you please call them to see how long its going to be? its pooring out side and Hannah shouldn't be out there" .. She wouldn't  She said if we weren't going back over we could sit in the entrance of the ICU were there is a bench. For real. Not only does my daughter not get assessed and I don't get taken seriously now we are treated like garbage sitting on a bench.I am so angry by this point I honestly feel like my face is as red as a tamato. Every time one of Hannah's alarms rang off a nurse would walk down the hallway to make sure it wasn't one of their patients. The nurse that sent us to our bench eventually came around to check on us... told me "Oh Hannah probably just has a cold, if you still think shes got something bring her hospital in a couple of days". So now I go from being so angry to thinking omg am I crazy?? Am I just over reacting? Is this how all trached children are when they are sick? Worst feeling ever I feel like I want to puke.
  Well it was 11-11:30 before the ambulance even came. EIGHT HOURS AFTER THE GAVE OUR SPOT TO SOMEONE ELSE. 3 and a half hour ambulance ride home full of high heart rates and oxygen. We get home at 1:30am and our night nurse is waiting at our door for us(thank god). By this point the lack of sleep, not alot of food and crazy emotions I feel like I've been up for days and hung over. We got Hannah in side the house and she tells me to go get some sleep..  I don't even bother putting PJs on because I doubt it will be a long sleep. 30 minutes goes by and I have my ear plugs in but I can hear the amount of times she needed a suction so I get up and as I'm standing in the door way with my hands over my face because the lights so bright she yells "BONNIE".
  Thank god emergency was dead and I had my nurse with us. I was in NO shape to explain what was going on never mind take care of Hannah because the dont know anything about trachs and vents. The take her tempature under her arm pit and if feels cold so they try it anally so gross). Yup she has a fever. So they take a bunch of blood tests(something Vic didnt do) and send her for an xray. The blood tests take a few days but the xray came back showing what looks like pneimona, so the start treating her right away. They said that its a stable Pneimona and there's no reason she should go to children's  except thats wrong, Hannah should NEVER be treated at the local hospital, but either way YAY someone finally listened to me. Then the morning crew came on at 7.. goes from good to bad. They wont listen to me about not sending me to vic or even calling them. I want Hannah to be threw children's because we were just at vic and they clearly don't care. 11:30am finally the doctor was able to talk to victoria and ask what needs to be done.. they come up with this GENUS plan that Hannah should just receive her treatment at the hospital there, (talk about effing stupid) that would mean 3 or more days of being there where no one in the hospital is trained to take care of her. The next idea was she would go home and an RN could give her the IV anti biotic . I have one day nurse for the next 4 days and she isn't an RN and I cant drive my self to the hospital.. Next plan, send her home and give her oral medication for a longer period of time.
  By this point im in tears because I have hardly slept and this all should have been delt with properly in victoria, I shouldn't have to get out of an ambulance and go to a less qualified hospital. The doctor then tells us we don't even know its pneomina, it doesn't really look like it to the radiologist but were going to treat it as if it was pneomina and play it by ear. Nice let her be in critical care before she gets the proper care.
  Then I get a HUDGE lecture from the nurse at the hospital about how I dont have anyone to help me with hannah and that I donèt do anything for me I spend all my time focusing on the girls. Then the hospital social worker comes in and also lectures me about how I spend all my time focusing on the girls and never do anything for me. Get f***in serious, obviously I spend all my time focusing on the girls. I'd love to go back to work or go out for friends but there isn't time for that and even if there was that's no bodes right to say I care to much.
  Today we went to the same paediatric that saw her in the hospital in his office. He says Hannah isn't better or worse today. She's not on oxygen but thats the only improvement. He gave her a swap for RSV(which I had to bag vic into filling out the vaccination forms for)  and said its still not sure if its an infection or if its a virus and we just gotta wait it out. We'll go in for another xray next week to take a look at her lungs and make sure there not worse. she's getting 4 puffs of ventoline every 4 hours to help her weeze, which is way worse today.

It's so frustrating have no one listen to you, just because your not a doctor. It's so annoying to be called a child by one hospital and have them claim I'm not strong enough to take care of both girls and have another hospital say I worry to much about the girls. How about no one comment on my as a parent because I don't get to tell them what I think of their parenting style. Next month I'll be 23, that may not be 30 but OH EFFING WELL.


Baby sitter took her to homedepo for crafts

Eating happily at the sitters 













2 comments:

  1. Bonnie, You don't me and I only know you through your posts of your beautiful girls. While my preemies haven't had as many complications all at once like your beautiful Hannah, my life with them has been far from rosey. My youngest is approaching surgery 14 this next month and it might even reach 15. I have heard from numerous providers that I'm not caring for him appropriately, that I shouldn't be his mother, that I don't desereve me. Horrible, dispicable things in my mind. I didn't sleep through the night for almost 2 years straight caring for him, that is on top of the 2 years with his big sister that I had been getting up at night responding to her alarms that she was setting off. My preemies still require lots of doctors appointment almost all specialty. They require as many as 6 therapy appointments a piece. My oldest preemie has a frontal lobe that isn't developed right and this affects not only her behavior but also her ability to learn, making school a nightmare. I fight daily for her to have the right to learn like her peers. I just spent another several weeks in the hospital with my youngest. I get so tired of hearing how small he is, aren't you feeding him, what's going on. My thought, you chase him. YOu pleasd with him to eat. You people didn't want to g tube as I already had one child with one and it would be too much, well maybe it wouldn't have been. Now we will never know. After having two needy preemies, I lost all my friends. THe relationship with my husband has crashed and burned. He is there in body and that is it, he is no help. Doesn't know how to relate to his kids and they don't know what to do with him. Bonnie, keep your chin up. You are doing a great job. I look forward to hearing how you and your girls are doing. If I was closer, I would offere to help any way I could. If you need to talk I can be that ear.
    Rachael

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  2. Bonnie, I know exactly where you are coming from. We always go to Seattle Children's when Raygen needs anything. The local doctors are scared of her and there is nooooo way our local hospital could handle here. They would look at her O2 and freak out. We have tried one other hospital besides Children's and it was like we took a step back into 1970 and I really felt I was more qualified then the nurses. Which as our girls mom, we are more qualified. It's so stressful knowing something is wrong and no one will listen. I'm so proud of you for standing tall and fighting for your girls. Your a great mom.

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