When Freddie was born and we were told he had an undiagnosed syndrome I remember feeling so worried and alone. I couldn’t understand how they didn’t know what was wrong with him. I felt like we were the only family to be going through this and it was a really scary time. I would sit for hours every evening searching the internet trying to work out what type of syndrome Freddie had. I would join groups on facebook to try and get some support but I never felt like I belonged as everyone had a diagnosis. Then in July 2011 when Freddie was 13 months old I came across a group called Swan UK on facebook. A group specifically for children who have a syndrome without a name! I was so excited to join. It was quite a small group at the time and everyone was so friendly and welcoming.
A couple of the group members had blogs, theaandnatesmam and littlemamasaid. I had never heard of blogging before and was intrigued to find out more. So I sat down one evening to have a read. Both blogs made me cry. They both had very touching stories but the tears weren’t just for that. I felt so much that I could relate to what they said, like i wasn’t alone anymore. Our journeys weren’t the same and our children all had different issues but reading their stories made me feel like I had found somewhere I could belong and this spurred me on to start my own blog. I wanted to share Freddies story in the hope that one day somebody in my position may read it and feel how I felt. That maybe I could help somebody else with an undiagnosed child feel less alone.
My first blog post I did I wrote about Freddie and our journey so far. I found writing everything down really helped to get all my feelings out, my own therapy. From that day on whenever things got tough I would blog about it. So many feelings that I hadn’t spoken to anyone about I shared on my blog. The grief of having an undiagnosed child and the guilt I felt.
The Swan uk group has grown alot since I first joined and there are now alot of parents and grandparents that write a blog. I look forward to reading everyones blogs, it’s such a nice way to keep up to date with each others stories, to offer each other support and share information. They can all be found here on the Swan UK undiagnosed website.
Starting 21st January Swan UK will be starting to take nominations for the Swan UK blogging awards. More information on how you can join in or nominate can be found here
For a while now we have known that Freddie has Sleep apnea. He had a sleep study in February last year & the results confirmed he had both central & obstructive apnea.
On Friday, Freddie had his tonsils & adenoids removed to try to help stop the obstructive sleep apneas. His ENT doctor isn’t convinced that it’s going to make much difference as his tonsils are very small but we are remaining hopefully it will make enough difference to stop these apneas.
I’ve been dreading the operation for sometime now. It will be Freddies 5th operation but what makes this one different is that I would be doing it without having my husband with me. So there would be nobody to take over if things got tough, nobody to help with meds and feeds or to help look after Evie. And perhaps the thing that was bothering me the most was having nobody to hold my hand if things went wrong.
My sister had offered to come with me to the hospital to help me out and to care for Evie overnight while I stayed on the ward with Freddie. Before we were due to go to the hospital I had a chat with Evie to help her understand what would be happening with Freddie to prepare her ready for seeing her little brother poorly. In typical 3 year old style she skimmed over the parts to do with Freddie and only really listened to the part where I was going to take her to the cafe for her lunch!
Breakfast before op
The day of the operation arrived and I spent all morning running around trying to make sure we had everything we needed to take with us. All the right medicines, bottles, feeding pump, milk, syringes and plenty of clothes. We arrived at the hospital at 11.20am and took a seat in the waiting room. This was where things started going wrong. I got my phone out and noticed I had a text message. It was from Freddies ENT doctor saying they had no spare beds in the high dependency unit for Freddie so were having to cancel his operation! I couldn’t believe I was finding out via a text message 10 minutes before we were due to start getting ready for the operation that it was cancelled . I was furious! The amount of preparation that had gone into this operation seemed to mean nothing to the hospital. The mental preparation needed as a parent to send Freddie down for another operation, preparing Evie to see her brother poorly in hospital again, preparing childcare for Evie, as well as all the packing and travelling involved.
I went straight to the nurses at the reception desk and asked if they had any idea why I had just received a text message telling me the operation had been cancelled. They seemed as bewildered as I was that it had happened. I told them that if the operation didn’t go ahead today there would be no other time it could happened in then near future, and considering it was booked in as an emergency operation waiting any longer would not be good for Freddie’s health and development.
We waited around for an hour while bed management tried to find a hdu bed for Freddie and eventually one was found and the operation was on.
Cried himself to sleep before op
Now while I was massively glad that things were going ahead I was quite annoyed to end up being at the bottom of the operation list. It’s not that I want and expect specialist treatment for Freddie but it is undoubtedly harder to keep a child with severe learning difficulties happier than it is a child who can play and understand whats happening. Freddie had been starved since 7.30am and was getting very hungry and irritable I couldn’t explain to him why he couldn’t have food and to me it seemed a little cruel to keep him waiting till 4.15pm until he could go down for his operation.
We were finally called to go down to theatre and by then Freddie had given up the crying for food and was fast asleep in my arms. I laid him down on the operation bed and held his hand as he was put under anesthetic. I gave him one last kiss before leaving him in the hands of the surgeon.
The dreaded waiting around for news began. All kinds of thoughts drifting through my head, wondering if Freddie was ok.
We went to the cafe and I tried hard not to think of Freddie. I was lucky enough to get a room in one the Ronald Mcdonald houses for Evie and my sister to sleep in overnight. So after the cafe I went and collected the keys for the room and was shown around their fantastic facilities. . They are an amazing charity and made my short stay alot less stressful knowing Evie could stay close by.
I finally got the call to say Freddie was finished and I went down to the recovery room with the nurse to collect Freddie and take him back to the high dependency unit. He was still fast asleep and was dosed up on pain relief.
Back in hdu
As expected Freddie never had a great night. He was very tearful and in lots of pain. He didn’t want to drink any fluids so he was hooked up to his feeding pump through the night. I managed to grab an hours sleep on a chair next to Freddie’s bed but spent most of the night rocking a very heavy Freddie in my arms. At 4am the hdu nurse told me to go over to the room in the Ronald McDonald House and get a few hours sleep. My experiences with nurses in the past have never been great so I was shocked that they were going to take over and allow me to get some rest. At 4am i walked through the silent, deserted hospital and across the hospital car park in the pitch black and let myself into the house. I snuggled in bed next to Evie and slept until 7am.
The next morning I went straight back to Freddie who seemed alot brighter. He even managed some smiles! He was still on alot of pain relief but as he hadn’t needed any oxygen overnight we were hopeful he could be taken home. He just had to drink some milk first but it wasn’t looking likely that he was going to have anything orally. Just looking at the bottle made him cry. I tried to squirt a little milk into his mouth but this made him instantly sick. Eventually after a long afternoon nap he woke up hungry and drank 200ml of his bottle. The nurses then decided that it needed to be a proper pureed meal he ate before leaving. But after having a talk with them over Freddies feeding issues they decided that 200ml of milk was alot for Freddie to drink and they decided we were ok to go. We were discharged with 4 different pain relief medicines and told about the complications that can occur after this type of operation.
Night time meds
Back home Freddie went straight to bed and was dosed up on his night time medicines. Now we have to wait for 2 weeks to go back to the hospital to repeat the sleep study and hope that we see good results from having the operation and there is no longer any need for overnight oxygen.