So as the title says we managed to get home on Monday YAY!! So we got the news that unfortunately it could take anything up to 2 months to get Leya’s humidifier sorted and we could stay until then (HELL NO was my answer) so we were sent home with extra nebulisers till this is to be sorted out!!
So I rang mum (we didnt have the car because of the MOT fiasco!!) to ask her if she was busy and if she wasnt could she come and pick ALL 3 of us up 😃 commence the shouting down the phone!! At first she asked if I was lying then put me on speakerphone to tell Leya’s Great Grandad (g-dog) and her Uncle Kyle and Cameron to say they were happy was an understatement!!
So mum arrived and her and Dan took our things to the car (there was a lot after nearly a month of being in here) and of course there was no parking spaces near but in car park E the furthest away!! They filled the car then the waiting began….and carried on and on and then finally we got Leya’s 2 carrier bag full of medicines (I would like to state here that my daughter is not a avid drug user but they supplied us with two weeks worth 😜). So we could finally escape.
We got downstairs and I swear both myself and Leya hissed and started to burn when we came into the light (yes a vampire comparison) we had been in there for so long that the light (it was a dim day) was just far to much for our eyes!!
So we arrived home (sorry the picture is dark) to the family who couldn’t quite believe we were really home. Well Tieran the most as they didn’t tell him we were coming home so his face was the best 😁.
Let the first night commence…all was back to normal Dan sleeping through the night and me not sleeping a wink just incase I missed Leya crying but once again our little piglet was fantastic and slept all the way through!!
So we were settling in, sorting out our new room, getting used to the equipment (your used to seeing it in hospital but its looks strange at home), teaching everyone how to care for Leya and the new sounds she makes all was good!!
Wednesday came and we went and spent the afternoon with our friends!! Which was amazing to catch up and see how much the not so little ones had grown!! Leya took a liking to Ethan and his arm which she decided tasted amazing.
So this is where the trouble starts. I take a walk to morrisons (in our new buggy which is amazeballs) to get some tea, Leya decides that she was to have a blue episode and stop breathing 😩 so I calmly suction her and helped her to calm down and she starts breathing again (i though I was going to have to do an emergency trache change) so i get home and she has another one not good. This is when the sinking feeling starts to occur, have they diagnosed the right thing, have we put her through all this for no reason??? So to be on the safe side we decide to change the Trache just in case its blocked. It was then we saw the Granuloma, for those of you who are thing WHAT THE HELL IS THAT?? It is basically Leya’s body trying to repair the hole that shouldn’t really be there, no biggy we put the new Trache in and called HDU to see what we had to do.
The ENT want to see Leya just to check all was ok, so of we went to Plymouth thinking we were heading for just a day out, how wrong was I.
Leya was seen by the ENT team when she arrived, they cortarized the granuloma and gave us some steroid cream but this is when she decided to go blue TWICE in front of him. Bring in the Peds consultant… “We are not happy for Leya to return home we would like to observe her overnight”
Mum and Cameron left with the new pump (yes this is the day one of her suction pumps decide to break) this is when my daughter decided that in front of the nurse and just for fun she would have quite a few apnea episodes, go blue and drop her oxygen sats!! Que me feeling sick to my stomach with worry as to what is causing my little girl to struggling to breathe again. On goes the humidification and back to our second home of HDU.
So bringing to story to a close we have been told we are back to square one, they think someone else is wrong but they are not sure what or where. She has had a chest X-ray which is clear, loads of blood test (i cried as it was a lot and her poor little hand is now bruised) and more tests to come.
Today she has been put on IV fluid as she has started to throw up her feeds again and has lost weight so she is dehydrated. We have been put into a cubicle as she has a viral infection (once again dont know what or where) which could be whooping cough so we have to be on the safe side.
So until we find out more or what is wrong with Leya and she has a had a prolonged period of keeping her oxygen up, not going blue and breathing all the time we will be staying in hospital. So as Dan worked out today our little poorly piglet has been in hospital for more than a third of her life already 😢
Oh and just to make life a little more exciting for us someone decided to reverse into our car and take the paint work and scratch our back bumper, just another think I need to be dealing with right now NOT!!!
So we are hoping that someone up there is willing to give us all a break and get us home again (for a long time) and let nothing else be wrong with our baby girl.
Lots of Love
Dan, Casey and Leya xxx