Rock and a hard place

Well our trip to Leeds did not go quite as smoothly as planned in terms of medical stuff......

Road tripping

We arrived for bloods and to start a kidney function test but Erin's veins had other ideas. They were successful and getting a cannula in to get all the bloods that were required for testing but unfortunately it clotted before the special dye could be injected for the kidney function test, this was pretty much Erin's last 'cannula vein' gone. This test involves injecting dye then checking bloods 2 hours later and again 4 hours after. After a further 8 attempts (a registrar & consultant later) I called it off as it was clear they were unable to get a cannula started for the dye so it was extremely unlikely they were going to be successful in getting the required following bloods. The long and short of it is Erin has no veins left suitable for iv access. It was incrediably distressing and I was not happy about how things panned out. I actually left the room several times before I told them to stop, this is the first time I have felt so upset I had to leave during a procedure, I was hoping this kind of thing would get easier not harder. They were trying so hard to get a cannula in they lost sight of why we were there and how distressed Erin was. It took her hours to get over it, she is normally laughing after a few minutes she barely spoke for the rest of the day. Note to self, not to wait until it gets that bad before I call it off, I think I need to get a bit stroppier when my instincts tell me things are not right.

We put the morning events behind us and Erin had an ultrasound scan in the afternoon. It went very well, mainly because she was so exhausted that she lay nice and still and also because the radiographer was very skilled and scanned her quietly, I think she almost forgot he was in the room! We are still waiting to hear the full report but he was happy with her liver and the naughty artery that has caused problems in the past.
So the team are going to discuss if we can postpone the kindey function test until Erin is a bit bigger, maybe in the summer when she has re grown some veins, to be honest I'm not quite sure how they think they will do it otherwise. It is an important part of the regular MOT process and to make sure the medications are not damaging her kidneys but the words rock and hard place come to mind.....

Zonked

Eating out for breakfast is great!

You are allowed to make as much mess as you like!

Our trip was much improved by getting the chance to catch up with some of our liver friends. A family from Glasgow were also in Leeds for a week of pre transplant assessments for their beautiful BA baby girl. She is a year younger than Erin and at a similar stage of the disease progress as Erin was this time last year. It breaks my heart to see her poorly but she is a very tough little cookie and is always smiling. We had a nice evening with them and really hope a transplant is on the cards for her very soon. It's a weird state of limbo to exist in, you can't make any plans for the future nor live in the present, tomorrow is such an unknown when you are in the pre transplant bubble.

After our awful hospital day we were lucky enough to meet up with my friend Sam and her gorgeous girls Bethany and Eloise. Bethany had a liver transplant 3 years ago and is doing incredibly well, Erin was smitten with both the girls and they treated her to a lovely toy play food set which is currently strewn about the living room, I think Hannah has her eye on it!

Left-Right: Eloise, ''Fluffy'', Erin, Eeyore, Jamie & Bethany

One part of this whole liver disease malarky that still amazes me is how you can feel as though you have so much in common with people you hardly know, often far more than those you have known your whole life. I guess sometimes only people who have stood where you have can truly understand where you are standing right now. I have been very lucky to have the support of wonderful mum's, like Sam, who have been in the liver game longer and can offer their insight and experience.


So we left Leeds a little weary and glad to be going home. Today was day 21 of chicken pox exposure so technically the last day of 'pox watch'. Yip you guessed it, Little Miss Trouble had a rash with spots all over her tummy, back and down one leg this morning. Off we toodle to Yorkhill to get a second opinion, all the time thinking how the hell they are going to get an IV started. All the doctors and nurses who saw Erin today (there were a few ; )) agreed the spots were not classic poxy ones but no one could say they weren't for sure...... It is likely Erin would have a non classic presentation anyway 1) because this is Erin, she likes to be different and 2) because of the Immunoglobulin injection. We had to wait a bit and see if they developed but there were no changes so it was agreed the best course of action was to start her on some oral antivirals and hold off on IV meds unless we were sure. Phew, much relief. There was talk of a trip to theatre if IV access was required. We've been home for a while and the spots haven't changed, fingers crossed it's been a teething rash as she is currently cutting 2 canines.

Having a picnic in Yorkhill, naked!

So there we are, things are never dull. To add to the drama my little beagle Hannah has to go in for surgery next week to have 3 suspicious lumps removed from her shoulder, neck and back. She is 11 and a half so fingers crossed things go OK and she makes a quick recovery. She is not going to be a happy beagle but at least she will be a spoilt one!

Anxious Hannah in the vets

Our thoughts are with a special family right now, the Larsen's, who we met in Leeds last year. Their baby boy Tom was having a Kasai, having just been diagnosed with BA, at the same time Erin had her transplant. Little Tom has been on the transplant list since September but no liver has come. Tomorrow his brave mum is going to donate some of her liver to him. They are such a lovely family who are also blessed with 2 lovely daughters and we wish them all the best for both of the surgerys tomorrow.