A catch up on the chaos

Well to be honest things have been far from great lately. I've been avoiding blogging for fear of sounding like a moaning broken record. I would love to be able to post a nice jolly post about all the wonderful things we have been getting up to recently but I'm afraid it wouldn't be true. I want to say these are little bumps in the road, nothing too serious but well I suppose the life threatening allergies, hospital admissions and many many sleepless nights are fairly big bumps.

Also Jamie's Nana sadly passed away on the 10th of April aged 81. She had been suffering from dementia for many years and took a declined in physical health fairly recently. She left a legacy of 6 children, 10 grand children and 10 great grand children, including Erin. She was very much a family lady, it was very sad to see her sufffering over the last few years and hope she is now at peace with her Jimmy.


To rewind a little we had a hospital visit on the 16th to get proper training to administer the Epipens we carry incase of further allergic reactions. It went well but unfortunatly Erin must have picked up a bug when we were in as she started throwing up on the 18th and didn't stop until the 25th. She was so poorly she had to be admitted again for 2 days to get IV fluids as she couldn't keep anything down at all. This is always a worry with her medication, any change in its absorbtion can be very dangerous either way. We managed to get home once she could keep down fluids and eat a little. As always with a d&v bug they took bloods to check her Tac level on the Thursday. We were expecting results on Friday but when we rang Yorkhill I was told someone would get back to me. On Saturday morning we were phoned to say the results were not on the system yet. On Monday morning I found out the blood sample was still sitting in a fridge at Wishaw General Hospital despite being told there were urgent bloods, someone decided not to send them for processing (*see rant no.1 below). So it was Monday afternoon before we found out whether Erin's Tac level was toxically high or rejection risk low. Thank god it was fine, a little high for Erin but not dangerously so. The sickness and diorrhea continued for a week, although it eased from its violent beginning, so we have been back for another blood draw to check Tac. Poor Erin is really having a rotten time, she is such a tropper though and will be smiling and playing a few minutes after throwing up. Stool samples showed it was Norovirus, her 5th gastrobug in 18 months. She has hardly seen another child in the last month, other than those we see in hospital, let alone had a chance to play.

And now I come to the ongoing issue of her tonsils and adenoids. Her tonsils are HUGE. She gags on them, wakes up screaming every 30mins-2 hours from choking (i.e. sleep apnea), she can only breathe through her mouth, has redness in her ear canals, tells us she has a sore throat all the time, will barely eat, snores like Hannah beagle.... the list goes on.  She is exhausted, we are exhausted. It might sound insane concidering what we have deblt with in the past but quite frankly it could be the straw that broke the camels back and send me over the edge entirely. Trying to juggle sick child, work, medical appointments and other commitments on 2 hours borken sleep a night is not the most sustainable life choice.

6 weeks ago we were told she had been put in as an urgent refferal to ENT, probably take 2 weeks. Last week I was told she had been reffered but it had been mistakenly put on the routine waiting list, which takes 6 - 8 weeks (eh, change it then?). On Saturday we received a letter saying she had been reffered and it would be 10 weeks. WTF?? So I went a bit mama bear and rang the hell out of every phone number of everyone I possible could and have come to the conclusion that very few people in Erin's care can actually DO very much to help (**rant no.2). Thankfully our knight in shining armour came in the form of Dr. B again, he suggested we come to his clinic this morning where he happened to know there was an ENT clinic running in the next room......So we pretty much ambushed the surgeon and he very kindly obliged and saw her briefly. In just 5 minutes he deduced Erin's tonsil and adenoids were causing sufficient problems, aside from their impact on her other health issues, to warrant their removal, although he did that annoying doctor thing where they say it is really up to you (hate that). So she is now on ANOTHER waiting list for surgery, he declined my many requests for clarity on time span but at least we are a step forward and Dr B gave us the impression it wil be fairly soon.


In between all of this Erin is growing up and developing so much. She now loves crawling everywhere but hasn't clicked its way slower than walking or running, she chats away all the time, is ordering everyone around (especially me) and generally wowing everyone she meets with her sparkly bright personality. She knows everything thats is being said in front of her and is already showing strong natural abilities in adult manipulation. 

Crawling through tunnels at last

Dance mat action shot

Laughing at Daddy in hospital

smiles in between spewing for Scotland

still posing

Loving her new Wellies

Enough hair for a wee ponytail at last

The rest of our lives tends to stand still when things are tricky with Erin. Friends and family are woefully neglected, as are dogs and horses (not literally please don't phone the SSPCA or anything). I have noticed some people are dropping by the way side, folks that used to show support don't even ring or text when Erin is in hospital. I suppose it's not that big a surprise when she is taken ill but it is still as traumatic for us I can assure you, it doesn't seem to get any easier. I assume some folks have limited understanding of the medical management involved in keep a child like Erin well, it can feel like balancing on the edge of a knife, when outwardly she looks like any other toddler. We have not managed to go 7 full days without a hospital visit in a very, very long time. We are nearly 2 years in to this unplanned rollercoaster journey, trying to bring up a child with complicated health issues, the reality is starting to hit home that things may never be simple, easy or straighforward. Maybe I've been deluding myself that things would be better by now and it's why I'm finding lastest issues such a struggle. I keep telling Erin it's just as well she is as cute or she would have been sent back long, long ago ; )

I really hope we are coming to the end of our bumpy spell, I have started doing the lottery I am that sure our luck has to change soon. 

*We are seriously pissed off about the unprocessed blood sample, it could have had serious consequences for Erin. We now have to deal with 3 hospital (Leeds, Yorkhill and Wishaw) and at every step in the chain there are regular break downs in communication. It is so infuriating I cannot begin to explain it well. I spoke with every doctor, nurse & pharmacist on the ward in Wishaw about what bloods were required and how urgently we needed the results, I even told them where to send the flaming samples. They all appeared to understand and were very helpful but it makes no odds sometimes, we are at the mercy of the beast that is the NHS...              

**You would not believe how many people agree with me in theory but in reality have no power to change the many NHS protocols about admissions and refferals. The processes are not able to deal with kids like Erin. I'm afraid on paper 2 recent bouts of tonsilitis don't really show the full picture of how low these issues are bringing her, the serious impact recurrent infections may have on her amazing new liver function, the fact she has very very poor veinous access once more making any iv access a total nightmare. Never mind the fact she has simply been through too much already to have to wait and see.....let face it tonsils rarely sort themselves out in such cases.