September 30, 2013

1st Vblog

My first "Vblog"

Its allot harder then it looks to sit in front of a camera and talk! Its hard not to say um when your trying to remember what happened and I found if I wrote notes to remind my self of what to say "um" would come out even more!! But I did it, i'm proud of my self and will work on controlling my ummmmmms.

September 21, 2013

Upcoming appointments

  1.  Next week Hannah needs to be brought to Victoria for the day to get her G-tube put in and see the cardiologist
  2. October 1st I have a court date with DB for child support 
  3. October 8th Hailey Has an allergy test in Victoria
  4. October 9th Hannah has Physio & Occupational therapy ( at home)
So much back and forth to Victoria 

September 15, 2013

Happy Happy

Found a computer in the hospital so I'm going to write a longer post of whats going on.

   Lately(before admission) I've been getting really frustrated with this hospital. I feel like i'm never heard, there isn't a plan for Hannah's health and they aren't pushing to get ride of things. It was to the point where I was strongly considering switching hospitals because not only did I feel that I wasn't heard and she wasn't being pushed to get better I also didn't feel like the way they were going about things was right. Like doctors not talking to specialist, tests being run to make sure the changes weren't hurting her.

    Two or three times ago that the Jtube fell out I asked the doctors and nuteritonest about testing a Gtube and got shot down. One person even fought with me when I told them that Hannah had a gtube for the first year of her life. Since Hannah wasn't in this hospital when she had a gtube, they didn't see it and wouldn't believe me. The idea was shut down instantly.
   When Hannah got her granuloma removed I asked the ENT to please while he was doing the bronchoscopy to please check her vocal cord functions and take a look at her lungs. Since he was going in already it would be nice to know how shes doing and not have to set up another appointment. Didn't check any thing.
    End of july I contacted her doctor about setting up a sleep study to test Hannah off the ventilator, they said they would get back to me in a few days. In that few days she started having ventilator troubles because there was a large leak from her trach. 2-3 weeks later I still hadn't heard from them so I had a nurse email the doctor with all of our concerns. Nothing was dealt with in that email, no date set up. Felt like the didn't care. They told us the PICU was full and to contact the ventilator company because they thought it was the ventilator, even though they hadn't seen Hannah or the ventilator.  Two weeks after that when finally I demanded I be given at least 3 weeks notice to when we were coming not just be told the week of. We were told maybe come on the 22nd but not to book off the nurses because the date might get pushed back.
   I know a sleep study isn't life threatening and it is a small PICU, but we still deserve to have the medical attention we need to live a healthy life. Sooner rather then later.

    So the point of that story is I was coming to the hospital expecting the worst prepared to have the doctor once again blame the Jtube falling out on me and my nurses, to not be listened to and feel like we got the bare minimum care. But that wasn't the case this time! We got to trial a  Gtube WITH OUT ME SUGGESTING IT! I think that's almost the best part.. (almost ;) the gtubes still the best part). We did the sleep study and it went great. WE TALKED ABOUT A PLAN TO DECANNULATE! Quickly, but I heard it and now know and estimated amount of time as long as everything goes smoothly.
  • Hannah naps with out the vent for 6 months
  • Comes back for a night time sleep study
  • Few months after that we start working on decannulating ( smaller trach, ect) 
So excited about that! Id estimate that at a year and a half.. Then she could stay with anyone, go out of the house with no equipment, catch less colds, no home nursing, BE A NORMAL KID!!!!!

The G tube feeds have been going fantastic. Shes on normal strength formula at a rate of 50ml running 24 hours a day(right now) and not puking, amazing. The night nurse started a few hours ago and told me that last night in the middle of the night the GI surgeon(who I swear just hates us) and was pretty peeved that she was getting feed via gtube. She made them run half pedilate half formula for longer then the original plan was. Since Hannah was doing so good she had no right to say stop the feeds untill she could have the jtube put back in. So I will be FOREVER great full that we came in late Friday night and there was only one doctor working to make all the calls or nothing would have ever changed. My home nurse said earlier on Friday that everything happens for a reason and I'm defiantly feeling that right now.

The other day I was thinking about how it doesn't make sense that Hannah needs her vocal cords to breath. I know its a proven fact you need them to breath. If her vocal cord is stuck open, how is she loosing air with every breath but not with a trach? There isn't a valve in the trach that closes every time you inhale. So I asked the doctor on why you need your vocal cords to breath. She said its because usually there stuck shut and you have a hard time breathing in air around it! Which is not how I was told Hannahs vocal cords were so I asked her to check her old files. There isn't any in this hospital she'll have to get the information from children.... I hope i'm right and that what I was told(or think I was told) is true, ill have so much faith in Hannah's trach coming out.

I don't know how much longer we are going to be here for, probably fine out tomorrow. We need to get her pulmonary hypertension checked (its been a year :|), and I spoke to the doctor about getting the ENT to take a look at her air way and vocal cords. So either we will be here till thursday or we will come back around the 26th.

Missing my other H

September 14, 2013

No vent nap!

  Originally our plan was to come to Victoria General Hospital on September 22nd to have Hannahs trach leak checked, have a sleep study done, check her pulmonary hypertension and meet with the cardiologist. We were going to take wheels for wellness for the first time to get here and were hopefully going to be here for about a week.
  Yesterday (September 13th) Hannahs jtube fell out because the balloon in the tube was no longer holding water. EVERY time the jtube falls out it has to be put back in by a radiologist and has to be done at Victoria or children's hospital. Because Hannah needs to be sedated for the procedure she needs to be at a hospital that can take care of her airway. So we went to the local hospital who then sent us by ambulance to Victoria general.
  We got here (Victoria general) at 9:30pm, the doctor didn't come in last night because Hannah looked good. The doctor instead of giving the nurses directions to so stat an IV to keep her hydrated until the jtube could be put back in, gave the nurses direction to start running pedialite through the foley catheter!!! It ran all night at 40mls an hour and never puked, so today its running at 50mls an hour. Next they are going to run half pedialite half formula at 50mls/hr, then all formula and then try to increase it from there.. sending us home with a gtube (if all goes good)! Very very exciting.
   Today we also trialed Hannag off the ventilator while she napped! At first it wasn't looking good... We had her flat on her back with the trach cuff deflated and she was ringing off between 85-93. So we put her back on the vent, inflated the cuff and lifted the head of the bed. 20 minutes after we put her back on the vent we took it back off and she did amazing! Maybe she wasn't use to having a belly full of fluids and laying flat on her back or maybe she needed her cuff inflated, but fingers crossed she keeps doing good off the ventilator during naps.

September 12, 2013

Wilton basic cake decorating: lesson 2

  Yeay for mommy time, today was the second class of the wilton basic cake decorating course. We had to bring to class a cake iced with filling in the middle and a few colors of medium thick frosting.
  Before this cake I had never made a cake from scratch! Origonally I was going to make a really tall cake and baked two cakes to stack on each other.... but I discovered after making my first cake you really need to follow the directions of when you add things.. its not throwing everything into the bowl and mixing it hahah.
  We used wax paper and pipping gel to transfer a cupcake picture onto the cake. I can already see me using this technique.. it would be so easy to transfer a picture of dora onto a cake.

  Next week we are filling and decorating cup cakes!

I realised after I should have colored the filling 

September 09, 2013

Mini sock bun

How to make a sock bun for a toddler or small child

Take a baby, toddler or child's sock

   Cut to size of bun needed. Haileys has is really short and fine so I wanted to make hers really small
Roll sock and test in their hair

Color with a washable marker as close to their hair color as you can

Put the sock in a cup with a FEW SMALL drops of water,
 not to much or you will lose the color

Let it dry completely 

Put a pony tail in the child's hair

Then place sock around the pony tail 
(Note my sock bun wasn't dry)

Cover hair from pony tail all the way around the sock

Put another elastic around the hair and sock, 
make sure you put the elastic around at least two times(more is better)

Bobbie pin any hair thats sticking out and your done!

September 08, 2013