Bob Hair Roadtrip

One of the two things I love about going on road trips with J is that she LOVES to blast music super loud and dance like nobody's watching.  Even if the people in the cars next to us are watching.  She doesn't care.  I don't care and we both have fun just dancing and singing as flat as we can.  Well in my case super breathy can only get 2 words out before I'm out of breath lol.  The other thing is she feels so special wanting to pay for EVERYTHING for everyone.  She must think she has unlimited money in her account.  I think her mum would beg to differ.  Lol. She is such an amazing generous person and I'm so lucky to have her in my life 24/7 even if sometimes she gets mad at me and wants to call her mum to tell on me lol. 

We had an amazing time away and so glad we were able to spend the night with Leanne and eat way too much junk food. Chinese was good.  Sorry Aunty Sharron.  Lol.  Road trips are meant for food and loud music at least we passed on the alcohol. Hehe. 

This morning we drove into town where J gets her hair done (she calls it Bob hair like Bob Marley) and patiently waited for Sam to arrive.  She loves Sam though she doesn't love getting her hair done because it hurts.  She also made me stand with her the whole 40 minutes we were there.  Lucky I love her. 

When we were done with her hair we stopped in at Albany mall and had tank for lunch.  Also managed to lose the car keys but luckily we only went to 3 places so I back tracked to the 2 food places we went to before going to information where someone had handed them in.  Nearly had a mini heart attack. 

Tonight we are at dinner with Js Poppa at the bowling club and having fun together.  We are so lucky that we get to spend time with him and I know that J loves being here.  Secretly,  I think she just loves the food lol. 

Busy couple days but home for the weekend before heading to Auckland again Monday for surgey then a night with a friend Tuesday and home again Wednesday.  It wasn't a very smart thing for me to go to Auckland twice in a couple days but J needed her hair done and I had an amazing time away with her.  We need to do more road trips together I'm thinking. 

Where to next...

Trachy Study

A couple weeks ago I received a phone call from Auckland DHB ORL team wanting to know if I would be interested in participating in a trachy study.  It wasn't anything big but I thought the least I could do was participate in the hopes it helps other people. 

The study was broken down into 2 sections.  The first one being a face to face interview where they asked question on how I dealt with the trachy.  How it affected my life.  Did I feel I got enough information when I got the trachy or left the hospital.  I really enjoyed it and even though I had only just had surgery the day before I still managed to talk and share how I felt having a trachy had affected my life.  Or even enhanced my life. 

The second part of the study was last week where they had a design work shop and everything was related to the design of the trachy.  And how we could get more information from a personalised website. I loved the design side of it.  It was a personalised website based on the type of trachy you have and what sort of information you were after.  Mostly they wanted to see what information was missing from the site.  What needed to be added.  Taken out.  It was great. 

The other side of the design aspect was the way the trachy looked and if there were things that we felt needed to be changed.  For me personally I wouldn't have changed much aside from how far out the trachy protrudes but other than that I was and am happy with the current design.  The design student who is doing her honours had made different types of designs using a 3D printer.  She also had made different types of straps which all were awesome.  I wish I had taken a photo but I was too excited to check out the new designs lol. 

I loved being able to go and participate in the workshop and know that what information I provided based on my own experiences would hopefully help other people who have trachys or for those who have family that need trachys. 

I gave my email address to the students in case they wanted more info as the workshop was only done that one time. 

As much as i am over having a trachy I'm still so grateful that I have it as it helps me to breath.  I'm also grateful that there are people who are willing to study and work towards helping others with information and different designs. 

Surgery Galore

For the last month and a bit I've been traveling to Auckland every 2 weeks for surgery with another lot coming up again October 3rd.

Things are slowly progressing to a better end result but we've also had to deal with a lot of complications along the way too. 

When we first did the flap surgery back at the beginning of August all went well.  It was a 3 hours surgery,  I spent 3 hours in recovery but all went well.  I spent 4 days in hospital before being discharged home however I was back in hospital a few days later where an NG tube was also inserted as I was having difficulty eating and swallowing.  After a week the tube was out.  I was able to eat albeit soft foods and was booked in again for more surgery. 

Since that last major surgery I've since had a couple more.  Most have involved steroid injections, checking of the flap along with lasering any granulation that has formed.  The clips had also come away from one side of the flap so last week we went back in where they used some glue to glue the flap down.  The flap is looking healthy and amazing and we have high hopes that if all goes with with it and that we can get it to stay we can look at talk about trying to decannulate.  At the moment it's sort of a waiting game to see how the flap heals and to go from there. 

My surgeon did also say we've run the course of doing surgery endoscopicly soo anymore surgery we do will all be done externally.  It's more healing time and more time in hospital but I'm feeling rather good about the whole being able to discuss and talk about getting the trachy out. 

There are a lot of downfalls about hospital and one of those is the food.  It's not good at all.  Lol.  Wait I lie,  the jelly and ice cream is good but for the most part it's gross.  I always go to the supermarket before hand and make sure I've got food on me so I don't have to eat the 'amazing'  hospital food.  I've been quite lucky as a few times I've had a friend bring food for me soo that's always awesome. 

Another downfall about hospital,  though it's more of a me thing is having to be 'sharp scratched'  allll the time.  I have no idea why they say sharp scratch as they're about to stab you with a needle but they all like to say it.  I don't have good veins but my veins aren't bad either.  They're great until you stab me with a needle then they run away.  Hence the million holes I end up with in my arms when they're trying to get a line in. 

Even though I don't know what it's going to look like just yet I'm super excited about what the future is going to look like.  To be honest I don't think I'll know who I am without a trachy and I'll probably still be the block the trachy when I talk person for a while.  I know it's still early days but like I said,  I have high hopes.  Things can only get better. 

Moving Forward...

"Don't hold onto thoughts that don't allow your mind to move forward." 

Last night for some reason I was feeling blah and when I woke up this morning that feeling hadn't gone away.  I took it out on people who didn't deserve it and I didn't like that at all. 

I didn't want to do anything this morning and to be honest all I wanted to do was stay in bed and mope all day.  I knew though that that wouldn't help how I was feeling. 

Finally 9am rolled around and I got my butt out of bed changed into some workout clothes and hit the pavement.  I made sure to turn the music up loud and I just keep walking.  I don't know how far or how long I walked but I do know it helped clear my head.

I still don't know what was/is making me feel like I'm in a funk but I'm feeling a lot more better than I was last night and this morning when I first woke up so that's something. 

I think sometimes we can get into a funk that can be hard or difficult to get out of and I'm so grateful that I can use music and exercise to get me out of a funk.  I know it's not always something as simple as music for others but I hope if anyone was feeling in a funk they'd have or find something to help get them through.