So this week has been a little crazy, well when isn’t my life crazy. We started the week cleaning up sick. Alex became really unwell, he was being sick a lot. Throwing everything up. Poor baby. His temperature went though the roof. it Was 40.1, then even with a hour after calpol he was still at 39.4 so we called 111. Who sent us to Gosport for an out of hours appointment. Which was a total pain as they use to have out of hours at QA hospital which is about 5 minutes from us. But no they have now moved them, it’s either Gosport. And when I say Gosport I mean deep into Gosport. Or complain, which again is not close or easy to get too. If Sam wasn’t here or we didn’t have our car, we wouldn’t be able to get him to the doctor. Anyways, we took him their and his temp was still high. then they listened To his Chest and told us we need to get him to A&E ASAP. So off we went, popped home to grab a bag for Rebecca and some snacks. We dropped Rebecca off to my dad. Luckily he lives the other end of my road, and he is semi retired. Then we headed to the hospital. We arrived at A&E to be told we may have to go to the peads until. Then told we were in the right place. We were put on several waiting lists to see a doctor as he needed to be seen quickly. It was then that we found out he has tonsillitis, for the second time in 2 weeks. He was also Tachycardic. his heart rate was too fast even for a sick child. it needed to be below 150. But when we were at the out of hours appointment it was recorded at around 190. Then when we arrived at A&E he was around 170. My poor baby, he wasn’t my cheeky little monster. I just wanted him better. he was Given meds and monitored. we were given a portable DVD player and Showed me to their dvd collection, so we watched cars and minions. Watching him laid on that hospital bed, with heart rate tracker attached it broke my heart.
We were told that he needed to have at least one of these down by 12:30am if not he would be admitted the ward. He had to have either his heart under 150, his temp under 38.5. So we waited and waited, they kept him topped up with pain relief. Luckily his temp and heart rate came down. His heart rate was now sitting between 140 and 150. I was so happy when they said we could go home. So we headed home and put our little fighter to bed.
The next couple days, he would perk up for a little bit then just crash. He slept a lot. We met him do what he wanted. I just wanted my boy back. Then the sickness started again. I think I have cleaned up more sick this week then I have in the time I have been a mama.
Then we noticed he hadded 💩 for a couple days. Que friday morning. Woke up to Rebecca tapping me, at 6:45am saying mummy, Alex has been sick again so I get up put my slippers and dressing gown on as quick as I can. To go into his room, to find it wasn’t sick at all. It was poo. He has literally exploded. It was every where. Dripping down his leg. Smeared up his back. It was bad. So I rushed to the bath room and stood him in the bath, and shouted for sam. Sam gave Him an emergancy bath while I set to work cleaning this souplike poo off the carpet, off his toy boxes, washing it pretty much of his whole bedroom! It was a nightmare!! he still isn’t right today. We are having to push for him to drink as his wee’s are becoming few and far between.
It’s a shame that Alex is sick, as today it’s my dads birthday today. So like always all of my family are heading to his for a BBQ and a get to together. My brother is going to take Rebecca down, but I could tell that my brother Shane is moody with me. Not only because we aren’t going. Even thinis was my dad who said it would be best for us not to come. It’s for the best as Alex isn’t well, both sam and I have been sick. And my pain is so bad today I have passed out though pain.
its days like today I wish I could have my legs removed. I know some people will think that, thinking something’s this extreme is crazy and stupid. But I have come to a point where I am struggling to cope with the pain. The medication. the mobility aids. I hate that if you step into my bathroom it’s like something out of care home. With the toilet rails, shower seat and hand rails. I hate it, I hate that I have to rely on my amazing husband for pretty much everything. I wish I could be normal. I wish I didn’t have to take so many different types of medication. i wish that we could plan a day out and not worry if I can cope, or will I be able to move that day.
but I know that things aren’t going to change. I know that this is my life now, so I need to make the most out of what I have got. Luckily for me, I have an amazing husband who supports me. He truly is my rock, that man deserves a lot more that what I can currently give. So I hope that Walking with wheels is a succes, and then I will be able to give him the things he deserves.
I also have two amazing, beautiful children. They are far from perfect. At times they drive me insane, make me angry and don’t listen to me. Then again, don’t most kids? But these two tiny humans have had to deal with a lot. Alex has his own complex health issues. But both Rebecca and Alexander have had to witness their mama fitting and collapse in pain.
They have both been amazing tho. Sam tells me that when I have a fit, both the kids rush to me as they want to help mummy. sometimes I can hear them, and hearing them tell me they love me gives the strength I need.
I love them more then I could ever Say.
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Until next time.
The disabled mama xx