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!