There have been stormy waters to ride over the past few weeks. At one point mummy stood in the corner of our hospital room where nobody could see us, holding me (Rory) tight, sobbing as she watched the world go by though the window at Sheffield Childrens Hospital. I stroked her arm with my hand and looked up at her. I know it made her feel better because she squeezed me tighter and said ‘I love you special boy’ but how did it get to this? And more importantly, little did she know things were about to get a whole lot worse.
So following daddy’s birthday, we had our last immunisations which made us a little poorly, we had to have our bloods took twice in one week, once at home and once at the hospital and I went to Sheffield childrens to meet with the surgeon who operated on my windpipe last time. It was a week full of appointments although it ended on a high when the surgeon cancelled my planned operation because she was happy with my windpipe. Mummy cried relief as she thanked her and cried all the way back to the car, telling me how proud she was.
We had lots of fun over the days surrounding these events….but it was a trying time because daddy caught a cold. From the first sign mummy kept daddy in quarantine and boil washed and anti-bac’d everything. After months of being told how important it is that we don’t have visitors, mix with other kids, go out to shops etc……the germs were in our home! And even though daddy was uber careful, germ dodging at school, taking vitamins, stripping off and showering as soon as he got home before he even entered the house….he was still responsible. It broke his heart, and almost broke mummy because she did EVERYTHING day and night until daddy got better. She didn’t sleep for almost a week. Literally. Especially as the events that unfolded made it impossible.
Although daddy caught her asleep in the space cave one afternoon….
So, Monday morning came, our lovely neonatal outreach sister came for her weekly visit and did all of her checks. Our numbers were fine and mummy felt assured that we hadn’t caught daddy’s cold (yet)! Only a few hours later, we were playing nicely on our tin foil blanket….
….when mummys next delivery came. She had ordered a rug for the living room ready for winter. She rolled it out in the living room and hoovered it because of all of the fibres in the air and she worried that it might affect our breathing. A few minutes later she put us on the rug and text daddy asking what he thought of the rug!
And then it came, the giant wave that swept mummy off her feet! I (Rory) began to struggle breathing. Mummy took me back to the other room and lay me on the blanket, she stripped me off and watched my chest chugging and the skin around my ribs and neck suck in as I gasped for air. Mummy knew that this was serious, she rang the nurse who told mummy to take me to hospital, except mummy was home alone with me, Austin and beau too and so she rang for help. She couldn’t get in touch with anyone, not even daddy. It was 3pm so the school office was busy. The phone rang and rang and nobody answered and daddy’s mobile was in his locker. Mummy rang Aunty Mandy and within minutes, the Range Rover roared up our street, mummy ran out with me in her arms and left Aunty Mandy in charge at home.
The entire way to hospital mummy was checking that I was still breathing, my eyes were open and she could hear the stridor as I gasped for air. Hammering it down the motorway she took and made several calls…..the nurse rang and requested mummy came to hospital by ambulance – too late, we were on our way, there was no time to stop. Mummy also managed to contact daddy and nannie H and ring Aunty Mandy with feeding instructions for Austin and Beau. Mummy sighed as she pulled off the motorway, knowing everyone was informed, everything taken care of and all she had to worry about was getting me to hospital -which was just around the corner…..but I closed my eyes and stopped gasping for air, I went silent…..mummy was shouting at me, driving super fast and shaking my seat to wake me up. It was the scariest moment of her life.
Mummy dumped the car and the nurse met us outside the door of A&E. Within minutes we were in resus and surrounded by lots of Drs and nurses, consultants, anaesthetists….ready to ventilate me so that I was safe. The next few hours were a blur. We saw mummys cousin Richard who works in A&E and some of the nurses stayed way past their shift to look after mummy and check we were ok. We will never forget the magic that happened in resus that day. The staff gave more than their job.
Eventually an embrace ambulance came and took us to Sheffield with blue flashing lights. I settled down for the night in the critical care unit. I had a settled night and moved to a ward the next day. Then I ended up having the operation that was cancelled, returning to the critical care unit and then back to the ward, having a ct scan and then waiting for a decision….mummy got very frustrated with waiting and had lots of difficult conversations…..amongst her thoughts was this….
Daddy bathed me with a rubber glove over my cannula….I still smiled a lot, the play specialists gave me lots of fibre optic lights and projectors…..mummy bought me some new toys for my hands and feet because I’m a wriggle bum….
And the decision was made. I was going to get my new super power….a tracheostomy. It would keep me super safe so that if my windpipe collapses I can still breathe, through my neck. There are some sad points about having this super power, I won’t be able to make noise, but I will gain a new skill called makaton. Daddy already knows this because all of the children at daddy’s school do makaton.
Mummy and daddy have lots to learn before I am allowed to go home. They have to be trained and complete theoretical and practical tests to show that they are competent in all areas. They were literally given a booklet with learning objectives and success criteria. We think mummy liked it a little bit.
Mummy and daddy have found this very difficult though and overwhelming, emotionally and practically, especially with a poorly Austin and beau at home. We are very lucky to have special people around us who will look after them whilst mummy and daddy are with me.
When mummy got her wind back, she threw herself right into my cares. The first week is just for observing but I had only been back from theatre about an hour when she jumped in before any nurses got chance to do my suction or irrigation. She has even changed my trach tapes which is a big job.
So what has Austin been up to? He caught the cold too…except it didn’t effect his windpipe. On one occasion mummy drove back from the hospital and took Austin straight to the Drs, on another occasion the community nurse sent him to A&E…I was upstairs on critical care unit and mummy and daddy downstairs in A&E with Austin. It was a very trying day.
Everyone has been monitoring his breathing, living on the edge with a bag packed and 999 on speed dial. A cold is not simple with a neutropenic baby who has no immune system, never mind in bronch season with a history of chronic lung disease. The odds were against him.
Despite this, he had lots of fun….
He managed a little walk in the fresh air….
He even visited me the day before my operation. We hadn’t seen each other for nearly two weeks. Like daddy said our family has been torn in half at at a time when we need each other. We both had an appointment for a hip check, which we both passed with flying colours, mum brought me down from the ward and daddy fetched Austin in fromhome and we met up in the waiting room. Daddy was feeling very sad so mummy said we Could sneak back up to my room and have some family time. We soon cheered him up.
Mummy was telling the nurses how difficult our journey has been but how being in the hospital gives her perspective. Family and friends on the outside, many who haven’t met us yet because of our health, feel really sad for us, yet mummy and daddy feel blessed because not only were there many times they believed they would never have a family but also that they see much poorlier babies and children every day. It could be much worse. Over the past two weeks mummy and daddy have both had moments where they have convinced themselves that they can’t do it any more, they lost sight of perspective and felt sad. Daddy had nightmares about tracheostomys and mummy stopped trying to take on the world by herself. She turned to friends and family for help. They were frustrated and angered by every day moans about sleepless nights, tantrums and teething. Women willing their babies to be born early because they have had enough….mummy would give her life to have kept us cooking longer so that we were born healthy.
Mummy and daddy think that people forget how poorly we are because we look so well.
So……mummy handed me over to the anaesthetist and went to wait with daddy. It seemed to be such a long time for them and for me and then I woke up with my new super power. I was very distressed at first, mummy tried to settle me, daddy was scared at first and stood back. Daddy had stayed with me at the hospital though and he is my fave so I wouldn’t settle until I’d had a daddy cuddle.
Let’s not dwell on how difficult it was for everyone involved…or all of the complications that come with this part of our journey….how mum and dad have cut off from the world to get their heads round everything…….instead lets check me out, still beaming……