It has been a long time since I was able to write about our journey with Diyanna. 2019 was a big year for our family. It was the last year of our family as we knew it.
Just like the year before 2019 started with a visit to the ED. Diyanna was having on again off again fevers and a persistent cough started at around 9 at night. Gradually her coughs turned into coughing fits which lasted for an hour. At the ED an X-ray and nasal swabs were taken to see if there were any signs of an infection. Her chest which was clear and since there was no significant change in her eating and drinking, we brought her home.
A few days later she had a coughing fit that lasted for 3 hours. In the ambulance she was given steroids to help her breathe. By the time we got to the Hospital Diyanna was sleeping and exhausted after what had happened. Her chest was not clear so bloods to see if any infection was present. As a precaution, it was decided to keep her for overnight observation. She had her dinner and meds and was fast asleep. But at 9 o’clock she started coughing and wouldn’t stop. The nurses tried giving her oxygen but that didn’t help. The last time Diyanna had this, High Flow Oxygen Therapy had helped her recover. Unfortunately, the nurse said that only a doctor can prescribe it. So, we waited for more than an hour. During this time Diyanna continued to cough. After the doctor arrived, she gave her a shot of adrenaline. When that too didn’t work, they finally got the High Flow machine for Diyanna. By this time Diyanna had been coughing for more than 2 hours. She was starting to tire her breathing became more strained. While she was being hooked up to the machine Doctors from the PICU were called in. Even on the high flow Diyanna was not improving and was starting to deteriorate. Out of all the times we have been in hospital, this was the 1st time that I felt that I could lose her.
By now she had been coughing non-stop for 3 straight hours. We didn’t know how long she could hold on. The call was given to take her to PICU and I had to give permission to incubate her if it was necessary. On our way down we found out that the high flow machine was faulty and that it had not been setup properly. Once in PICU a whole team of doctors and nurses were trying to help her. They tried different oxygen flows with varying masks. Finally, due to pure exhaustion and a combination of meds, Diyanna fell asleep and her coughing stopped. These few hours were the hardest. It was now 3 am. Dinesh and my mum came in I was in tears and exhausted. I didn’t want to leave but I needed to eat and have some rest. So, we prayed and I left while my mum stayed with Diyanna. When I came back in the morning Diyanna was still asleep.
A nasal gastric tube was put in so that Diyanna can be given her milk. Diyanna slept the whole day her breathing improved, her cough sporadic. She was also closely monitored by her palliative care team who also brought in an ENT team to further investigate her coughing. By the end of the day they were able to step her down from the high flow therapy. Diyanna opened her eyes a few times the following day. She was still extremely exhausted. By day 3 Diyanna was up being a bit more like herself. The level of oxygen was dropped to 2L and there was talk of sending her back up to the ward. The next morning Diyanna was able to have her breakfast and within 24 hours we were back home. Diyanna’s turn around was nothing short of amazing.
Unfortunately, the frequency of her seizures increased and with-it the ferocity would harm her. She feels them now. She feels the pain and you can see it in her face and in her eyes. You can see the fear. She cries during the seizures and after it has happened. And every time it breaks my heart. It makes me angry, frustrated, sad and hopeless all at the same time because there is nothing that I can do to make it ok for her. There is nothing I can do to make the it better for her.
We increased her medications and changed her diet. But we still were not able to get her all the way to what we consider to be her baseline. In June, she got RSV and so we were back in the hospital for a week. She was coughing for long hours without stopping and having nose bleeds. Something strange happened with this hospitalisation which made us rethink what was triggering most of her seizures. For the first time since her diagnosis Diyanna had 2 weeks without having a clinical seizure. We are still not sure how that happened but that gave us some hope that we can get her to a point where her seizures will stop.
Our biggest wish has always been to try and have some normalcy in our lives and on Mother’s Day we got our first real good news in a long time. We were going to be a family of 4. Balancing Diyanna’s health has been the center of our lives for so long that we forgot what life was like before her, what it was like not to constantly worry and not to calculate how to keep her living and just enjoying the little joys a child brings.
The pregnancy was joyful but it also brought alot of anxiety and fear. A fear that we may have another child just like Diyanna. Keeping Diyanna alive and healthy is a struggle even with the help we have; we knew that we could never take care of two children with this condition. During our first ultrasound for the new baby, Dinesh thought that it was having seizures in the womb and almost had a panic attack. The head of the Maternal Fetal Medicine team came in and reassured him that the movement was normal. The next ultrasound Dinesh came attended was towards the end.
I don’t think anyone can understand what it’s like to live our life and how Diyanna impacts every single aspect of it. During the pregnancy we had various people from doctors to family members giving us advice that they thought were helpful but it only made the anxiety and fear worse. This not only caused friction in our marriage but also had an effect on how we saw the new baby. Dinesh became distant with the pregnancy he was cautiously not bonding. I reacted by pulling rank and tightening the circle of people around me. I knew in my heart that the baby will be fine but having negative remarks relating to Diyanna, telling me what I should do as a mother and making both of us feel that we were not making the right decisions for our little family was not helpful. Thankfully, after may tests we were told that the baby did not have Diyanna’s mutation. But the anxiety didn’t completely disappear until the moment Gabriella was born.
Caring for Diyanna during the pregnancy was extremely hard. But with the help of my parents, Dinesh’s mum and Diyanna’s carers, I was able to pull through and finish 2019 with healthy little addition to the family.
Cindy – you & Dinesh are amazing!!
…..& how has Diyanna’s health been 2020, during this tumultuous COVID era??….. an extra ‘challenge’ (not strong enough a word!!) for you all 🥴
I am deeply moved, Cindy… and once again brought to tears by your journey. But my admiration for your courage and strength keeps growing. How hard it is for you both, and for Diyanna… to stay strong and level when trauma and distress hits so hard and you both feel powerless. What amazing parents you have been… and how hard for you both, not only because of your different physical and emotional roles, but because you have different ways of coping within yourselves so that you can find the extra energy and strength to be supportive. I am deeply impressed…
I admire your strength Cindy. It’s an amazing journey of ever growing love courage and hope of a mother. Thank you for sharing your story with us… God bless your family! Diyanna and Gabrielle looks adorable !
Cindy my darling, May God Bless the 4 of you and all those who help you. Diyanna my little warrior girl, you definitely got your strength from your mama !
We’ve never met.
I’m a cousin of Dinesh’s from Montreal, Quebec, Canada 🇨🇦!
It’s wonderful to read about your strength and courage through all the trials and tribulations that have come as roadblocks. Cutting off with the negativity was a healthy first step. You & Dinesh are adults and are responsible individuals and it shouldn’t be nobody’s business.
Stay strong. Miracles do happen… God is listening but it may not be his time as yet, to give your precious Diyanna the complete healing and a new lease of life, without all the pain, discomfort and suffering her little body is subjected to.
We will continue to uphold her and your family in our thoughts and prayers! Continue to be strong and never ever give up!
Love ❤️ & God’s blessings,
I am the father of a child with cacna1e, from China. I saw your experience through social networking websites. My daughter has just been diagnosed. I want to know about the treatment of cacna1e and relevant information through you
Hi sorry fir my late reply. its been busy. at the moment there is no proper treatment for CACNA1e. Diyanna is on CBD oil, lamictal and keppra