Three Months in…..(Day+75)

I want to start out by thanking my wonderful husband for spending the past number of nights with Max. As I posted in the last update, I came down with a nasty cold last week, so Tim began doing the night shifts. Not only was my nose and head stuffed up, but my intestines had been brewing something unwanted for a few weeks as well. I thought by ignoring the situation, it would go away….not so. So, just to add to the already bad situation, I too was having stomach issues. I think the stress of everything finally caught up with me. 

It was such a vicious cycle - I felt so guilty being away from Max - but feeling rotten due to my own symptoms, I knew I was no good to anyone, yet this made me stressed, which exacerbated my symptoms, which kept me away from Max...... The last thing we needed was me being in hospital too! So my mother (love her!) decided to take charge arranging an appointment with my Dr. After seeing him, a small procedure was organised the following day for a little ‘look-see’ to discover that yes, my Crohn’s Disease has reared it’s ugly head…..crap! I have been put on increased medications myself, and I spent two nights in the comfort of “Club Relax” at my parents’ house where I was forced to do nothing! I am feeling better, but unfortunately it is not a situation that can be fixed quickly.    

As for Max: The large number of medical specialists looking after Max has now grown. The dermatology team came on board ordering a second skin biopsy to rule out whether Max’s new rash was actually something more sinister (TEN - Toxic Epidermal Necrolysis) in which the skin basically dies. Obviously this would have been horrid and honestly I didn't want to think about it. Thankfully, it turns out the biopsy result showed that his new rash was still consistent with GVHD. His blood pressure is also still a concern, so another med has been added. And another antibiotic has been prescribed…why not!  

Last week, in order to relieve the itching and burning of his rash, the Dr’s decided to try putting Max in ‘wet dressings’. This was done every four hours and involved lathering his body in cream, soaking cloth (similar to chux wipes) in cold water covering them over his arms and legs, then soaking bandages in the same cold solution and wrapping him up. Understandably Max HATED it and was extremely vocal! Thankfully, as of yesterday, this has been reduced to now just dressing his hands and forearms.   

As for the poo…..well, it’s still coming…..

We are hanging in here, and once again we must thank our awesome parents for helping us out by looking after Max so that Tim and I can have some 'get out of jail' free time xxxxx  

Thankyou to:

• All my magnificent friends who have called, texted and emailed. I feel so blessed to have you all in my life, I will get back to you....promise!

• Cards from Aunty Juda and Nana Shirley

•  Rach, Matt, Amelie and Harvey for the meal, wine, treats and gift

• Pip (Cus) for the meal and gifts for Max and Me!

• Angie for the book and beautiful card.

• Aunty Cheryle, Uncle Mick and family for the cool Jim Jams for Max!