September 07, 2012

507days in Hospital 1 and a half out

507days in Hospital : 1 and a half out, at least its a start!!

    Hannah defiantly was not adjusting to the move home very well. I was completely unable to sooth her. Her heart rate was ringing off high for most of the night at around 160.. Which is really high for Hannah, her normal is usually around 95-112. The heart med she gets slows her heart down so I was very concerned that it was ringing high. Even at her maddest times in the hospital I had never seen it ring high.. it beep low tons.
    The worst part about having to wake up when the nurses leave is going to be Hailey. Surprisingly she sleeps through the alarms fine but she demands cuddles between 12-2 EVERY night. Shes getting worse to.. before I would bring her to bed have her fall back asleep put her back in her crib and then go back to sleep. Well now she realizes when I put her back in her crib and screams bloody murder, which guaranteed would wake Hannah up if I let her cry it out. So I just keep her in my bed all night.
    The first night I was able to roll her off of me when the nurse left. The second night even before the nurses shift ended if she rolled off of me she would wake up cry and climb back on top. Then come time for the nurse to go home there was no way she was letting me leave her in my bed.. so she came with me and then though its play time!! Little sleep for me.
    This morning on top of my little sleep Hannah's GJ tube fell out! If it were just a G tube that would be no problem quick fix. Hell I could have even put the new one back in right there on her change table. But since the J part of the tube goes in the Jejunum that meant it would have to be done by a radiologist. I knew we would end up back in vic hospital, I called vic hospital right away and asked... "Does this mean were coming back?" The nurse told me "No, just go to your Hospitals Emergency they will be able to put it in". I doubted that they could do it in town so I very quickly(because you only have 2 hours to put something in the stoma before it closes over) packed me and Hannah a day or so worth of clothes, all her meds and all her equipment plus the cords. Sure enough our hospital doesn't even comprehend the situation. I repeatedly told them at the admitting desk that it was NOT a Gtube it was a J. I figured by looking at Hannah they wouldn't even make us sit in the waiting room..Trach child in gross emergency waiting room full of very sick people... not the best place for her. When this one lady came in the ambulance attended said to the other "Make sure the truck is properly wiped down". Then I over heard them saying something to her like "No mam you need to get checked out, you have something brewing in your lungs or throat". So at this point I'm really watching the clock stressed out my daughter is going to get VERY sick.
    So we finally get in the room with 15 minutes until the 2 hours max time to get something into her stomach stoma.. You know how it is.. You get in the room and they don't come for at least 15-30 minutes. So It's past the time when the doctor comes in and she starts talking to me and says "Oh I was told it was a G Tube, K let me go make a phone call". EXCUSE ME. I've been repeating my self to everyone and you don't have time for a phone call.
     Finally when they put the catheter in to keep the hole open they had to do a few sizes smaller then what she had in. So I'm not sure how that works for tomorrow, if they just shove in the big one or what. They wouldn't let me give hannah her 12 o'clock heart medication through the catheter. They called Hannah's local pediatrician and she said it was ok to miss it for a few hours and that nothing should be given through the catheter. Well on top of the fact it took us 3 and a half hours by ambulance to Victoria making it time for her 6 o'clock meds (so she completely missed one of her doses of heart med) they gave all her meds through the catheter!! I was furious. I need to work on my momma bear because that is NEVER going to happen again.
Jeneeces place is full tonight so I'm staying in a room at the hospital. Tomorrow she SHOULD be getting a new GJ tube put in and they say we are going home tomorrow. We will see about that.


Lessons learned today:
1: always give meds even if you have to do it behind a doctors back. Giving a med and risking the chance of her refluxing is much better then not giving a med.
2: if a feeding tube falls out throw it out. It fell out for a reason

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Victoia pedi's parents room


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