November 2010 - Moving ahead

Everything is moving forward!  Gemma is recovering well with her new trach and she is handling position changes well.  Being ET tube free is allowing her to have more mobility, her physiotherapists are working with Gemma to sit her up supported, trying to encourage her to wiggle and lift her limbs.  A belt was made for Gemma to keep her trach centered for when she has cuddles or sitting in her tumbleform chair.  It is nice to see Gemma get to do things she couldn't do before!

Now that Gemma has had her trach surgery it means getting ready for nursing training to prepare us for going home!  Yes, those amazing words we longed to hear for many, many months!
Our Vancouver townhouse with stairs, stairs and more stairs was definately not going to be suitable for Gemma coming home with a special wheelchair so we had to sell and move, asap!

When it already seemed like a lot of adjustments were happening, we were thrown another curve ball when Charlie lost his position with Disney after five years.  His project was canceled, the whole team got laid off and then shortly after the entire Vancouver stuido shut down.  At first it seemed like the worst possible timing but then it occured to us that it was a blessing in disguise, it was the best possible timing!  Charlie was able to be around after the trach surgery, he would have time to do the nursing training that was provided during the day by the hopsital, he would be able to help sell our home and help us find a new place.
We lucked out selling our home and shortly after we found the perfect home for Gemma, a ground level home with lots of light, a big bright bedroom with a washroom for the nurses and a private garden.  We moved in November 22nd!

Getting Gemma home is becoming closer, we are moving ahead!







October 2010 - Gemma's Tracheostomy, a new beginning

There were many times that we had said 'if' Gemma gets a trach, it took a long time to commit to the possibility of it becoming a reality.  We were put in contact with another family, Marie & Andrew Haak who went down a similar path with their son Josiah who had a rare disorder, he passed away at two and half years old and we knew that we needed to speak to them for advice about our daughter.  We needed to understand what they experienced and what advice they could give us about moving forward with Gemma's care.  They answered all our questions and put our minds at ease, it was a call we were so scared to make but they comforted our fears and put everything into perspective, we will be forever grateful for their advice, support and friendship.

After weeks of having the trach surgery postponed due to first the surgeon having to cancel and then having to cancel because Gemma got sick, the date finally arrived on October 8th, 2010.

We didn't know what to expect as we wheeled Gemma down the long corridor to the OR.  My heart was racing, fear swept over my body but this day also meant moving forward, to give Gemma a chance at a future. 

After a few hours of pacing around the hospital Gemma was ready to be picked up.  Luckily one of our primary nurses was on that day so we walked down to escort Gemma back to her room.  Gemma came out of the OR very swollen, sedated and under full body paralysis.  This was the beginning of a very difficult week ahead.

Luckily I did some pre-op research and spoke to families on a trach forum about what to expect but it didn't quite prepare me for how hard those next few days would be.  Gemma had to lay in an open-top incubator under overhead lights, naked and not able to even move her eyes and it felt like she was in a coma like state for four days.

After Gemma was weaned off we noticed that a huge bed sore had formed on the back of her head.  This was caused by her not moving for days and she was also very swollen from fluid retention.  Any position change with the new trach would cause Gemma to shoot into desaturation episodes.

It was a difficult few weeks but bit by bit Gemma was healing and after her first trach change things improved.  It was a very hard adjustment but we know we made the right decision and we can finally see our beautiful daughter's face!