Infusion #4

Well it’s 4am. The cat is sleeping between my legs, Matt is snoring and Isla is making little sleep grunts and has been asleep since 2am. 
And I am WIDE awake. Great. Trapped between falling asleep (trying) and knowing I have an hour exactly till little miss glutton opens her pretty newborn eyes wanting milk. 
I would like to thank tonight for my old friend Hydrocortisone. The power juice … Whilst my brain is not fried yet, I’m not quite shaking like a leaf and manically euphoric – today’s infusion has pumped me up again leaving me with the old night insomnia. Fail. And what’s worse is tomorrow Matt is attending the obviously compulsory tradition of ‘wetting the babies head’ celebration (baring in mind it’s been a tough 9 months off the pop, one completely understands a game of golf and a civil drink is compulsory for a man that has been through such a lot this past week) …. No sarcasm intended! 
This means tonight I’m unavoidably wired, tomorrow I will be dead with the responsibility of all the night feeds whilst my better half tries to find his way back home probably with one eye and limited vision … Ugh standby for miserable Sal Saturday’s … (That’s one free pass in the bag though… Oh you just wait, saying that currently I think one wine would sedate me in about an hour which isn’t quite a free pass is it?!) 
This insomnia marks a lot for me though.. So hurray for insomnia. Today’s infusion of three hours went well, that means some small successes in my bowel fighting world: 
1. Next week is the first week without a visit to any type of hospital (planned) since January. Hurrah! Freedom. 

2. Infusion #4 means that number #5 will now drop to only 2 hours at a time – see you in October Mr Infliximab. Then once I hit 10 infusions I can dose up in a speedy half hour I have been told. That means by the time I’ve purchased my ritual costa hot chocolate , sat down , drank it, I’ll be done. 
Other cool things about today: 
3. I got weighed and I’m my normal weight already one week postpartum. (Okay sorry girls, but Crohns needs some positives at times and this is probably exclusively it. To balance things my hair is falling out in clumps since I gave birth so at this rate I might be shrinking but I will definitely be bald, thanks hormones) 

4. I got my jeans on today … Followed by doing a small air fist pump. 

5. I have to give a shout out to the lovely free NHS sandwich I had followed by some custard creams. Delightful. 

6. I was reacquainted with my old friend the bubble machine … My favourite model.. The trusty graseby … As if I was that bored in hospital I downloaded the user manual for this beast and spent a day reading it… My acquired knowledge still helps me avoid that awful beeping sound when it goes off so I knew it wasn’t a wasted education. 

So yeah, one week in and I am a thinner, balder jeans wearing mom that still consumes an unhealthy amount of biscuits and ice cream. Result! 
So I had to find Matt post treatment as he seemed to have got lost in the attention of all the nurses cooing over him, the swish pram and baby. He made out it was stressful and tiring but really he was loving life as an OPD (over protective daddy, self proclaimed). He did manage to sit with me for a little while on clinic which was nice, he got Isla out and proceeded to show all the patients how tiny she was, holding her like baby simba in the Lion King as his prize possession. Quite rightly, after all, she is. There is something really cool about being really sick but still being able to make a baby so perfect. Uplifting also to see the smiles on people’s faces even though they are poorly too it makes people happy, not just crohns sufferers and cancer patients but people suffering with awful conditions like rheumatoid arthritis too. Babies always make people smile and a prompts conversation, that’s cool as it’s often therapy in itself, happy talk. 

We also took a trip up to my ward 727 and 726 once I was done. What a strange feeling that was. Room number 6 was occupied with someone else, going through an horrendous time no doubt. Seeing all the sick people, and fresh new gastro and liver patients just reminded me that it really doesn’t stop for the staff .. Just a new day and a relentless turnover of patients. 
However, I made it out the other side for now, the day had come I didn’t think I’d ever get to experience. We wheeled Isla through the long corridor of 727. Past the three nurses stations and all of the fabulous team, not everyone mind that would be impossible but it was great to see some of the special girls that made my life slightly bearable for two months. Yay!! I might have had a new NHS tag on for my little day patient visit, but I still got to press the release button for the exit door on the other side. For most, it’s small, but to me it’s everything 🙂 

Oh and shout out to whoever made this comment in the car park survey … Yes I hate car parks and collectively my family and I have spent a small fortune this year on this particular one but still I couldn’t have said it better myself … 

5am – here comes another bottle ! 

About crohnsmamashttps://crohnsmamascouk.wordpress.comMom blogger with Crohns Disease, the more active the crohns the more active the blog ! :)

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