My heart is broken, my beautiful daughter Meg, passed away on Friday 7th August.
Meg was born with a condition called Arthrogryphosis, the condition can vary from mild, affecting only 1 joint, to severe, affecting every joint, Meg had the severe version and the only joints that weren't affected were her elbows and jaw. The condition also means that instead of having plump stretchy muscles, Meg had stringy, tight muscles, she also developed scoliosis (curvature of the spine) at an early age and along with the Arthrogryphosis, this got more severe as she got older. Due the tightness of Meg's muscles, her rib cage couldn't expand enough to allow her to breathe properly and over the years she had adapted her breathing to suit, which meant it was very fast and shallow, the hospital told us, that she was using her diaphragm to get more air in, as her lungs just couldn't expand enough.
Meg was admitted to hospital with severe pain in her upper left abdomen and a CT scan showed a problem with her bowel. In a previous post I mentioned that Meg ended up having an emergency bowel operation and was going to be in the Critical Care unit, sedated and on a ventilator straight after the operation. The operation was a great success, but because of Meg's breathing problems it became more and more difficult to get her off the ventilator. At the first attempt her heart rate rose so high, that they had to shock her to get it back to a normal rate, (in Meg's case this was in the 120's, which for most of us would be the rate it would be it would be if you were running a marathon). They sedated her again and kept her on the ventilator until the next day, when they tried again, twice, both times Meg stopped breathing. They did finally manage to get Meg off the ventilator and onto a CPAP machine, (which was still doing most of the breathing for her), on the third day after the surgery, but it was too powerful for her small lungs and she couldn't tolerate it, during the night they had to take her of that too and just give her oxygen through a mask. Meg was also getting very distressed if her dad and I weren't with her, so they moved us into a private room on the CCU and brought a fold up bed in so that we could stay overnight with her.
Meg seemed to be doing a lot better, was chatting and laughing, (she even asked if she could have a Mackies once she got home) but couldn't breathe fully on her own. Suddenly that afternoon the pain that she was admitted with and that we thought was caused by the bowel problem, returned, the bowel operation was almost healed by this time and we knew it wasn't the cause of the pain. The pain got worse and worse as the night went on, her heart rate got faster and faster and was in the 160's for most of the night (more than double what it should have been), the alarms on all the machines she was connected to were going off all night and she was in a huge amount of pain.
They put Meg on a morphine pump, and every time it lit up for another dose we had to press it for her, because the pain just wouldn't ease up, they were giving her extra doses of morphine and other painkillers too, but nothing would take the pain away. Even though she was on 100% oxygen her saturation levels were dropping and she was finding it harder and harder to breathe.
Finally on the Friday afternoon, the doctors took us to one side and told us that Meg wasn't going to make it, which by then, we had already guessed anyway. We had a few difficult decisions to make about Meg's care, but couldn't bear to see her suffer any longer and decided it was time to let her go.
The hospital told us to contact any close family members and get them up to the hospital quickly if they wanted to see Meg before she went, so my daughter Stacy, who was at the hospital at the time, contacted them, and was about to leave to pick up my mum, when the doctor came back and told us that there was no time for the family to get there, Meg's death was imminent.
We sat with her as the oxygen mask was removed, she grabbed mine and her dads hands and pulled herself up twice, she didn't want to go and was fighting until the end, so we told her to close her eyes and go to sleep, to look for her grandad, take his hand, and go with him, she lay back, took a couple of breaths then she was gone.
We held her funeral yesterday, a celebration of the almost 25 years we had her with us, we didn't mourn her loss as she isn't lost, she will always be with us, in our hearts. The service was beautiful and fun, just like Meg, there were so many people there it was standing room only, and it was lovely to see that so many people loved and cared about her as much as we did,that her fun, sunny personality had made such an impact on so many lives.
Even through all her problems, including several major surgeries during her short life, she was still the happiest person I ever knew, our lives will never be the same without her, but I would rather suffer the pain I have now, than see her endure the intolerable pain she was suffering,
We still don't know were the pain came from, but suspect that it was due to the scoliosis, which was pushing her over to the left, we think that maybe it was squashing or trapping something on that side of her body.
Please take a few minutes today to give your loved ones a hug, or tell them that you love them, cherish every moment you have with them, because none of us know what is around the corner.
Thanks for dropping in,
hugs,
Colette xx
