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Day minus 2

Today was filled with a little more excitement than anticipated. It started out as any other day with our cast of hundreds doing their rounds and then it happened, Nate utter a few little words that turned our world upside down for 24 hours, “My ear is blocked”.

Now a blocked ear might sound harmless enough, though this morning he had also mentioned a scratchy throat, so putting those two symptoms together spelled eviction for Nate from the ward until we knew if he was infectious or not.

It might sound a little extreme, though when you are on a ward full of immunocompromised people, you really cannot take any risks.  Something as minor as a sore throat could be detrimental to someone with no immune system.  Though in saying that the positive pressure of Levi’s room and air-conditioning of the hospital play havoc with your senses and you are constantly left wondering if you really do have a sore throat or if you are just suffering from pseudo symptoms, the later always subsides by a quick visit outside for some fresh air.

While Nate ran around trying to find a doctor to clear his name to allow him back on the ward and most importantly back into Levi’s room.  I sat tight with Levi and Jude, hoping this wouldn’t be the start of a very long shift in isolation with both boys.

Our ‘Ward Granny’ Michele started her first day with us today.  The title ‘Ward Granny” might be a little misleading, as Michele is quiet young and doesn’t have a zimmer frame so we have renamed her our ‘Ward Friend’, which she is much happier about as well.  Michele and Levi enjoyed their first official play together and Levi really enjoyed having someone else to hangout with that wasn’t trying to assess him in some way.

With Nate having no luck finding a GP willing to check him out, we were lucky that we had prearranged for Angela to take on a nightshift.  Staying the night in hospital is a big ask under normal circumstances, though especially tonight when an emotional little man was missing his Dad, and now Mum was also leaving him too.  Though it didn’t take Levi long to embrace his new overnight guest and they partied the night away.  Thanks Ange we are grateful for all your help!!

 

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Blog Levi's Blog

A Modern Day Superhero

Tonight on the other side of the world a superhero is giving an amazing selfless gift, he is giving my baby boy the hope that he could live a CGD free life.

To the healthy 26 year old German man who’s bone marrow perfectly matches Levi’s in every possible way, I’m in total awe at the wonderful donation you are making. You are probably prepping for a painful surgery as I write this, for a little boy who you don’t even know and a family who are overwhelmed by your generosity.  I can’t thank-you enough.  We are looking forward to contacting you in 12 months time, to thank you personally and let you know how much our healthy little man is thriving because of your gift. Thank-you, Thank-you, Thank-you!!