Disappointing Day

Louise didn't get on so well today.  After her amazing effort yesterday she sat out in the special little armchair for a few hours where she dozily watched the Wiggles until she fell into a sound sleep.  That was during quiet time so I went home for a while.  While I was there PICU 1 (High Dependency) rang to say they were going to sedate her to remove the mid-line drain, the biggest of the three. When that was removed she could go to the ward.  The wards are much more specialised now so children can spend less time in PICU.   So we waited a while and went on up with the three eldest children, the younger two going to a friend's house.

When she spotted her big sisters Louise burst out crying with huge tears.  I think she was just overwhelmed with her situation.  Over the next few hours she basked in their attention and they even got a brief smile.  I hoped that it was the lift that would boost her recovery.

Unfortunately, the night didn't go so well.  She vomited up everything she had managed to keep down.  It was quite a task to clean all her wires and drains.  While the nurses were changing her bed I managed to get my first cuddle with her.  She just snuggled in so pathetically like a little broken bird.  As we were moving her back into bed I managed to accidentally tug at one of her drains...she screamed so loudly.  My stomach flipped in the way it does when you see a child hurt.  To be honest I was completely traumatised to have caused her extra suffering.

On the good side here is that as I was stroking her back I was completely amazed at the realisation that there was no roughness...the gritty whoosh that was her heartbeat is GONE!!!!

Later in the night, due to the medications she had, she completely saturated her nappy (she's more or less out of nappies at home)  as well as the bed.  Another bed change but they managed to do it without lifting her right out.  I don't think I got too much sleep as she wanted me to hold her, and stay close.  She slept more or less all night but with frequent wake-ups to call me.  By morning I was feebly trying to convince myself I was asleep while at the same time reaching up to stroke her hand.  From about 6 am I noticed that her tight swollen little hands were feeling hot.  Sure enough by morning she was running a temperature.

So of course that meant sending urine and bloods for culture They can't be taken from her central line because of something they put in there which would contaminate the sample.  She has barely a vein left that's available for bloods and the sample needed to be 6mls x 2.  The doctor tried and tried but fell short of the required amount from the only veins he could find...in the instep of her foot,  she cried and cried telling me it was sore...and when he had gotten the last drop he could, she had the good manners to thank him.  Dis-heartedly he sent off the samples hoping it would be enough.  They phoned down this evening apologising that no...there wasn't enough...they have to try again in the morning.

So all day Louise was listless and miserable.  The physiotherapists came down hoping to be able to walk her to the playroom to continue her therapy.  One look at her told them she wasn't up to it.  They even decided against trying her in the little armchair.  All she managed was to blow a few bubbles through a straw in a cup of water...this is important to release the secretions in her lungs.  After a few puffs she fell asleep.  They'll try again tomorrow.  In the afternoon I found an iPhone app where you blow out candles and we did that as much as we could with her..  Her only lift was looking at a little video her cousin sent her wishing her well.

John came up with all the children except Rebecca who had gone with her friend present shopping for Louise.  The Tinker-bell balloon she had so eagerly anticipated got barely a glance.  As the nurses were changing her sheets yet again after a little (or big) accident, she sat on John's knee.  I think it was just the secure arms she needed.  She dozed on and off.  The good thing was that in that upright position her oxygen saturation levels rose to the low 90s which is great.

John is staying  with her tonight.  I think that will help her because when I'm there she's clingy and won't let me even stand up without worrying I'm going...which makes using the bathroom a bit difficult.  She doesn't do that so much with John and so is more relaxed.  Her temperature has risen a bit again but luckily the cardio-thoracic registrar came around tonight and said she's not worried about the fever, it's not too high and is typical enough. She told John they could remove a drain tomorrow then looked at the volumes and said no it won't be coming out after all.  Seems this drainage is complicated with Fontan.  It's interesting how many nurses and doctors have said...'well she is a Fontan'.

So Louise still has some way to go.  I'm at home and heading up for a good night's sleep.  I'll be back to staying up in the hospital tomorrow.  She has come so far, I know she'll conquer this final mountain.  I'm praying the prayer of the two Andes Survivors  who tramped off into the mountains to look for help not knowing whether they were walking in the right direction or further into the Andes...'Lord, make it difficult...but don't make it impossible...'

Tomorrow is another day.  I think it will be better.

Please continue to entrust Louise to God's loving care.

Jennifer xx