It's been stressful! Plus MASSIVE HOSPITAL UPDATE!!

These past few weeks have made me want to crawl under a rock and stay there for eternity!

Monday 16th May: The day started as any other day. But when I opened Noah's nappy and was met with pure white poo.. I knew it wouldn't be like any other day. As a worrier, I got on the phone to my health visitor who told me the children's ward in my local hospital were waiting for me and it could be serious. Something to do with his liver. My heart raced! First his bowel and now this? What more could we deal with.

We spent all day up there and it dragged!

We were then sent home to be told 'fingers crossed it doesn't get worse!'. What doctor in their right mind would say that to a vulnerable mother?! 
That was it! I had enough. I posted everything on Facebook, fueled by anger and sadness. That we were being neglected and my poor baby was going unnoticed!

Within minutes my friends were commenting their support to us, some urging to go to the press and start a petition! so that's what I did. Over the 2 weeks I spoke to 2 major newspapers in my area. They took the story and ran with it. Last week one newspaper made Noah front page and the other dedicated a 2 page spread just to him!!

The petition was set up and the numbers grew! Within a week it had 1000 signatures from around the world! From close friends and family to people I barely spoke to people I've never even met! I am so thankful and eternally grateful for every single person who helped Noah and my family.

I had even phoned Cardiff myself and asked for his biopsy to be expedited, but they told me a letter would be out in the post in June for the biopsy for later this year!!

Am I the only person to understand that he needs this desperately and that it could be life threatening?! I ended the call felling deflated and upset that no one is understanding how ill my baby is?!

Then a few days later it happened..

Whilst our health visitor was at our house doing Noah's 1 year check up (More details in the next post!)

I had a phone call from a Cardiff area code. I had expected a scam call.. Like PPI or a cold caller but when the woman on the other end explained who she was. My heart stopped. Would they tell me its been pushed back to next year or that the biopsy would be cancelled! 

She began telling me that she had seen my petition and got a background story of Noah by reading my Facebook post and by my friends writing endless emails to them. She then wanted my side of the story. My voice trembled as I explained. I wanted good news so bad that I was so scared of what she was going to say. 

She continued saying that because she wasn't Noah's consultant she would have to speak to his consultant but told me she would try and sort it out for us. I was speechless, someone wanted to help. Finally! I ended the call thanking her. But as soon as I had processed it I felt defeated. I kept thinking that nothing would come from this phone call. That my hopes would be crushed as fast as they rose. I explained the conversation to my health visitor and Chris. We all were skeptical. We thought it would lead to nothing and still be treated as not urgent..


The day went on as normal until..


A Cardiff number rang again, I didn't know what to think, Would it be a cold caller, would it be the hospital asking me to stop pestering them or could it be the news I had been waiting a lifetime for?

It was the same woman as before.. She started slow and my heart sank. It was bad news! Why was I so stupid to think someone wanted to help Noah? 

June 30th she said softly? I must admit I had to ask her to repeat what she had say as my mind had wondered off thinking it was bad news. She explained that they could fit Noah in early morning of the 30th. 4 weeks away.. I was speechless, shocked, nervous! She asked if I would prefer coming up the night before as we live so far away. I jumped at the chance before she changed her mind! 

Her voiced then changed to serious and explained that if needed surgery would be performed at the same time. Meaning if it is Hirschsprungs Disease then he would have surgery to correct at the same time! Double whammy! Double good news. Life started getting brighter. There seemed to be a light at the end of the tunnel. After 8 Months, this was needed to pick our spirits up! 

Now its a countdown to the biopsy. 

30 days and counting!

In the meantime our health visitor has put us forward to meet community nurses and anyone who cares for Noah has to be taught how to change a colostomy bag, if worse case scenario. 

Also we have to meet with a pediatric dietitian to figure out Noah's calorie intake and how to make changes to get him what he needs.

Until then you will find me floating on cloud 9! 


Until next time..

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