June 30, 2012

Second Trach change




Changed Hannah's trach again yesterday. It went well! I was a little worried after the trach was out that the roll under her neck wasnt big enough, making it harder to get the trach in but it was fine. Hailey was super cranky at the hospital so I had to bring her home.. I don't know if she is sick or teething but she was up all night! Every time Hannah would touch her yesterday she would cry it was kind of cute. 








Hailey and my friend Dan visiting Hannah 

June 28, 2012

Trach Handbook Part 3 - Skin Care & Tie Changes


It is necessary to keep the skin clean and dry and ensure the tracheostomy tube is secure. Wet or dirty ties can lead to rashes and other skin problems. Ties that are to loose increase the risk of accidental dislodgement of the trach tube and formation of granulation tissue. Ties that are too tight cause serious breakdown of the skin. Skin care and ties should be done AT LEAST once per day. A good time to do them is after a bath because the ties usually get wet in the bath. Change the ties and clean the skin more often if the ties are wet, dirty, too loose/tight, or neck is irritated.


Special Considerations
  • Each time you change trach ties, check for signs off redness, riughness or rashes. Persistent rashes need to be seen by a doctor
  • Do not use powder or lotions around the stoma or neck unless prescribed by a doctor
  • spare trach's
  • Check the tightness of ties throughout the day to make to sure the trach tube remains secure.


Equipment needed for Trach change:
  • Pre made ties
  • Scissors
  • Tweezers
  • Two clean cloths one wet one dry



Emergency equipment to have near you for EVERY tie change
  • 2 spare Trachs (1 normal size and 1 one size smaller)
  • Suction catheter and machine 
  • Manual ventilator/Bagger
  • lubricant







Prepare the child for tie change by either laying flat or sitting. In small children it is necessary to place a roll under the shoulders to expose the neck. 

Procedure for skin care and tie changes
  • Two person job for small children
  • Everyone starts by washing hands
  • Have one person stabilize the tracheostomy tube using two fingers.
  • Cut and remove old ties
  • Use wet cloth to clean neck and stoma, always wipe away from stoma
  • Pat neck dry using dry cloth
  • Secure new ties
  • Test for tightness. Should be able to place the tip of index finger under tie. 
  • Triple knot ties on each side for security








How to make Hannah's Trach tie:



 Measure Hannah's neck to no how long to cut the molskine. Right now she's 14.5'

June 28th

Hannah's collection of Trach belts made by OT @ BC Children's hospital.
(the purple looks blue in the pics)
Yesterday I did my first trach change. It went well :) I was scared before I started but once it was happening it was fine. It was more scary watching my mom do it because it felt like so much more time was passing then really was.
Everything els about yesterday was pretty stressful. The Dr told me that my double stroller (tandem graco) wasn't going to work for all Hannah's medical equipment said the wheels weren't strong enough so I'd need to get a jogger($600-800!). Then the dr was giving me shit for not having a medical bag for Hannah yet which I only just found out about! It's suppose to be farly big but not as big as a regular size back pack/duffle bag a little smaller. It's suppose to have lots of compartments so you can organize everything good for easy access. It's harder then it sounds to find a bag like that! Then she told me that she couldn't fill out my EI forms only my family doctor can do that, which last time he had no idea how to fill out. And ontop of all that she tells me we will be getting transferred to Vic July 9!!!!! I was so stressed and grumpy but felt like I could cry at any second. Thankfully Jodi Kevin and Kash came for a visit cheered me up!!
Today the social worker told me Y.A.N.A is going to fund me for a stroller! There so amazing have helped
me WAY to much!







June 26, 2012

Girls play time


The girls played so well together today! It's the first time I'v seen them both interacted that well. Usually Hannah is full of smiles watching Hailey but kind of laying/sitting like a little lump, while Hailey isn't smiling and is destructive. Crawling away getting into hospital stuff or pulling all of the many cords Hannah has. Today Hannah sat in front of the mirror sit and stand toy and Hailey stood on the right side of the toy playing.
Hailey even was trying to play a "game" that me and her play. She or I will grab something the other one has then give it back and then take it back and so on. She thinks its hilarious. Hailey tried playing that with Hannah today but Hannah would refuses to let go get a little mad face but then be so excited when Hailey would give her back the toy. It was the cutest thing I've ever seen them do. I think the mean rolls are changing though, Hannah also would get mad and steal all the soother.
So happy my little Hannah is feeling normal <3

Trach Handbook part 2 - Suctioning

Why Is it important to suction?
 When a tracheostomy tube is in the airway the natural(coughing, sneezing ect)  removal of secretions is compromised. If secretions are left in the tracheostomy tube it can cause infection or block the tube. If the trach tube blocks it could be very difficult to impossible to breath.


When To Suction?

Your child should be suctioned:

  • If mucus is bubbling from the trach or making a rattling sound in the tube or chest
  • Frequent coughing
  • Sweating
  • Anxiousness or restlessness that isn't calmed by cuddling
  • Fast shallow breathing
  • Bluish, pale, or dusky color around mouth
  • Nostrils flaring
  • Skin pulling in tightly between ribs and over the collar bone
When your child has a n infection you will need to suction more frequently

The child needs to be suctioned during the night you can not leave them unattended, also because the ventilator may pop off.

Equipment for suctioning:

Place all equipment on a clean surface

  • Suction machine
  • Suction Catheter size ( Hannah is 10 )
  • Normal saline incase instillation is required and for rinsing catheter 
  • Gloves (If your out of the house or for nurses)
Suctioning Procedure:
  • Insert catheter without applying suction to the measured suction depth(Hannah's is 7.5). Do not suction deeper then amount told.
  • Apply suction; Rotate the catheter between fingers and slowly pull out catheter. Inserting and withdrawing the catheter should take no longer than 5 seconds. It is difficult to breath during this time and the catheter takes up space in the air way
  • Clear the catheter by suctioning clean saline from cup
  • Allow child several breaths to recover
  • Repeat if necessary
  • Place catheter back in clean wrap
Remember to always wash your Hands before dealing with the trach or any of  the equipment 

June 25, 2012

Front door



I made signs for the front door. Hoping to avoid people bringing sickness into our home. It's a little big but hopefully it gets the point across.




I learned today that Hailey HATES the noise of ripping large pieces of tape or opening a page from a photo album. I had to wait till she was in bed to do both.

Grandma's first Trach change

My mom/grandma got to do her first trach change and I helped with ties. She did it instead of me because she is normally here on weekends and they don't do trach changes on the weekends unless it is an emergency.
The change went well! I was more panic'd then my mom was(just because it was so red). I cut the trach,ties she pulled the trach out, I wiped the stoma, she put the new trach back in and I did the trach ties. I change the trach in Wensday and then after that I can take her out for walks!

The plan for moving to Victoria is the first or second week of July. Depending when we finish the ventilator classes. That's like no notice, I can't wait for us to be in new doctors hands!

June 24, 2012

Me Birth - Twenty one

I always thought the girls looked more like DB then me. After looking at these pictures I see a lot of Hailey in them, mostly after one year.




June 23, 2012

Room air!

Hailey and her uncle Kyle
Hannah's on room air! If only our doctor didn't want her to never ever to leave the hospital we would be ordering the equipment and out of hell(also known as the hospital). The equipment would only take 2-3weeks tops and my mom does her first Trach change Monday and I could do one every day until she leaves to be 110% comfortable with it. Hopefully the hospital gods give use a good understanding doctor in Victoria that wants us to go home.

June 22, 2012

72 weeks, 433 days, 10 400 hours


I found a day counter on google today. It starts counting for the minute Hannah was born (which is 2 minutes before Hailey). It is counting the time of Hannah's hospitalization but because she has not ever got to leave the hospital it also is counting the number of days since the girls were born. After Hannah leaves the hospital the next time(even though I pray never for a next time) I will put it back up and count the next stay.

494 Days since I was sent to Vancouver for close watching
433 Days since the girls were born.
83 Days Hailey spent hospitalized , 350 Days she has been home
14 Months, 72 Weeks, 433 Long days, 10,400 Hours, 624,011 Minutes Hannah has been hospitalized for

Gerber Contest

Please vote again for Hailey! It's the last week shes not to far behind 10th, and she only has to make top ten!
vote vote vote
 https://www.facebook.com/GerberCanada/app_436634953016095?app_data=3686

She ain’t heavy she’s my daughter


She Ain’t Heavy, she’s my daughter.

The road is long
With many a winding turn
That leads us to who knows where
Who knows where
But I’m strong
Strong enough to carry her
She ain’t heavy, she’s my daughter

So on we go

Her welfare is of my concern
No burden is she to bear
We’ll get there

For I know
She would not encumber me
she ain’t heavy, she’s my daughter

If I’m laden at all
I’m laden with sadness
That everyone’s heart
Isn’t filled with the gladness
Of love for one anothe



It’s a long, long road
From which there is no return
While we’re on the way to there
Why not share

And the load
Doesn’t weigh me down at all


♥♥♥
She ain’t heavy she’s my daughter

She's my daughter







Song found by my wonderful bestie SK

June 21, 2012

Video's of the girls

Clips of both of the girls on the same day 
______________________________________________

The girls playing together 






June 20, 2012

At home program/Social work

Went to a meeting with the ministry of family and children development for help with children with disability's.   Went over the things Hannah is approved for. $200 of respite(which is pretty much nothing when you consider you have to pay for a trained trach person. Thats like 10-15hours tops), At Home Program(that she was already approved for threw the hospital) and 4 hours a week of housekeeping which will help me out alot!

The At Home Program medical benefits provides the basic, essential medical benefits: 
  • Medical Equipment
  • bio-Medical Equipment
  • Orthotics and Splints
  • Audiology Equipment and Supplies
  • Medical Supplies
  • School-aged Extended Therapies
  • Dental/Orthodontic and optical benefits
  • Medical Transportation
  • Medical Service Plan Coverage
  • Medications and PharmaCare
Everything has to be pre-approved (guide lines at www.mcf.gov.bc.ca/at_home/guidelines ). So I dont know how much the dental orthodontic and optical covers 

June 19, 2012

IDP in CV - Physio



Things to work on with Hailey:

  1. Strech ankle - hold heel and pull away as you nend her ankle towards her nose
  2. Crawling up stairs - Encourage her to put her left foot up first 
  3. sitting with both feet on the ground , unclench her toes

Trach and bronchscope Video


Hannah getting her trach changed in the first clip. I stop filming the insertion of the next because I couldn't see well and had to pay attention. The next 2 clips are two separate times she got the bronchoscope inserted. Her coughing is because the scope touched her on the inside which feels like a tickle causing you to insistently cough.


saddest little face, eyes watery from coughing but not actually crying. Being a tough cookie <3

June 18, 2012

Trach change & bronchoscope

Bronchoscope machine, the scoop its self is a
small black camera 
Today my mom and I got to watch our first trach change. They changed Hannah's trach from a cuffed neonatal to an uncuffed pediatric. The pediatric is a little bit longer and wider in the throat so they had to do a bronchoscope after to make sure it wasn't to big for her. It was so neat getting to watching the bronchoscope. Because Hannah is trached it made it easier to quickly scoop her, all they did I add an extension to the ventilator and slip it in.
I'm also really excited that Hannah is doing well enough that she can tolerate an uncuffed trach! That means she can squeek and make small amounts of sounds. I swear she "screamed" at me. It wasn't very loud but it was sure noticeable.

Neonatal Trach on left,  Pediatric on right 

Now Hailey and I are off the the island for a week full of appointments; teeth cleaning, legal aid, social worker, brides maids dress altering, tooth specialist. Really stressed about legal aid because I was approved over 3 months ago I have to get re-approved and they only approve legal aid if there are charges or restraining orders. Which there were/are so I'm worried I won't get re-approved. But no matter what I plan to have things rolling again by the end of the week legal aid or not :)

June 17, 2012

Tracheostomy Handbook Part 1

The hospital gave my mom and I a hand book about tracheostomy's to read over. I wanted to share the important and interesting parts.
_____________________

A tracheostomy also called a stoma or trach is a small incision made in the neck into the trachea. A tracheostomy tube keep the stoma open so air can enter the trachea and lungs. There are two main reasons for a trach: bypass a blockage or narrowing of the airway, need for long term ventilation. Hannah is trached to bypass the vocal cords and for long term ventilation


Bathing: You should never leave your child unattended in te tub or out. Take extra precaution of what going near the trach. When washing a child's hair with a trach, tilt her head back so that water doesnt run toward the trach tube.

Babysitters: Extra care, monitoring and training is required when you are caring for a child with a trach. Other children may feel resentful of the attention you give to this child(great). You should try and have 2 other people who are trained in your child's care. Only me and my mom will be trained.

Parking: You will be able to apply for a handicap parking pass! which will be important on cold winter days or rainy days.  http://www.sparc.bc.ca/parking-permit


Things to Avoid:

  • Smoking, aerosol sprays, perfume - Tracheostomy provides a direct route to the lungs. Avoid spraying or smoking anything in the same room as the child
  • Pets - long haired pets and caged birds can cause problems from the fur and feathers.
  • Playtime things - Small toys or parts, sand, swimming pools, splashes of water
  • High populated areas - avoid people who are sick or have any kind of colds 

Routine Care

Washing your hands is required before practicing any of the following procedures!
  • Suctioning - Helps remove secretions that can build up in the airways.
  • Skin care and tie changes - Ties insure trach tube cant be removed. Skin care decreases the risk of rashes and other skin problems.
  • Humidification - adds moisture to the air that your nose would create on its own.
  • Changing Trach - removing existing trach tube from stoma and placing a new clean one.

Fathers day

June 16, 2012

Baby warp druing trach change


Another Trach baby mom blogs how to make a baby wrap to help during a trach change.
http://www.trachties.blogspot.ca
Such a good idea! 

Hailey day


Ever since I've had Hailey out of the hospital(2.5months/newborn corrected) we've been going to see Hannah everyday at the hospital. Because of that she has gotten very use to not sitting at home all day, always getting out of the house. So on days like today when Hailey has a runny nose(AGAIN) she turns into a cranky little monster. She has the highest pitch scream I have ever heard come out of a baby and doesn't nap/go to bed properly. It worries me when we finally get our Hannah home how bad she will be!

June 16

As well as blog I also share my story on inspire.com and discuses with other people their journeys. I came a cross a story today the same as Hannah's; born at the same weight, VSD, PDA, NEC(removal of part of the intestine), pulmonary hypertension, BPD(lung disease) , ect.
The girl is now 4 and a half, still trached. She was off the ventilator for a while but the got pneumonia and lost all her reserve(pretty much started back at the beginning of horrible lungs) and is back on the vent full time. Her mom also brought up how she is so attached to her parents if they are out of sight for a second she freaks.
That makes me so scared of the future. Am I ever going to be able to go back to work? How much extra would you have to pay a trach trained sitter? Is it even worth it making minimum wage? I hope that because she is a twin and will have hailey that will make it easier to leave her if she has hailey with her.

June 15, 2012

Thankful I didnt..

A thought just randomly popped into my head.

When I first got to Vancouver the girls father(DB) and I were talking about having me go to the Edmonton hospital. It would have been 8 hours from where him and I were living at that time instead of 14. Plus big factor is he wanted me to go there so that I wouldn't be close to the island where my family and friends live.
If it wasn't for my first social worker in the hospital looking threw my medical chart and realizing that me and DB must of not been together long since my family Dr. had my address as a different address as his she would have never realized we weren't common law and that I was approved for funding. Because she realized that she had reasons to talk to me more and picked up on little signs about our relationship. I actually owe alot to her. She forced me to bring home a book to read on abuse relationships where it explains all the different kinds, It really opened my eyes and I chose not to get transferred because I started realizing to the extent of how bad it was. Soo thankful! I would be 18 hours away from my family and friends completely alone in a city with Hailey. Wouldn't ever get to leave and go back to normal life away from the hospital for a weekend. The chances of a baby getting transferred to a hospital out of the province your in isn't very likely.

Account

As some of you pointed out my blog was temporary unavailable. I believe someone was trying to hack into my account, I wont name names because I don't have any proof. Thankfully Google has high security settings so they were not able to get in and will not in the future!

On  a side note I would just like to say I love my life! It may not be perfect but I wouldn't change it. I am so thankful to have both my beautiful and amazing daughters. Even though Hannah has her medical problems she is only going to better our lives. I believe in karma and I think she's made it for a reason. We wont take for granted the things most people do.

I love my baby girls <3


June 14, 2012