Jayden woke up not the best today and clearly feeling the effects of his counts being low. Hes amazing though and keeps on going. Faded pretty fast by the afternoon though and had a big sleep.
He vomited up his NG tube not long after he woke and we are now sitting in hospital waiting to have it replaced. The new NG tubes they have at the moment for him aren't weighted enough and the damn thing just moves so much when he vomits. This time when he vomited it came right out of his mouth so i had to pull it out of his nose. Not nice for him
at all. He just had his bloods taken and we will have to wait for those results as well. The results will determine whether he needs a blood transfusion or not which would require us to stay.
I had to ring my sister to stay with Luke and Layla before we left and we headed off shortly after she arrived.
How different a Sunday evening has become. Sadly my kids seem to be use to it all and think what seems like, nothing of it. when we tell them we have to leave but will see them later, when exactly we aren't sure as we don't know, they seem ok.
As we drove of leaving them behind I suddenly realized how normal this life really has become. Luke no longer cries when we leave, Layla doesn't ask when are we going to return and danny and I just jump in the car like robots with bags that are already packed from days ago. as for jayden, well, even after being told we are taking him to the hospital to get his tube in his nose put back in he just says,'ok'.
Its two hours later and we are On our way home. Fortunately
Jaydens blood counts aren't low enough yet for a blood transfusion so we can leave.
He had his tube put in which is one of the worse things to witness happening to your child. Hate it, hate it, hate it. The nurse was very good though and super quick thank heavens. I have seen it take a lot longer and a lot more traumatic so if you could call this a 'good one', then it was.
We are now all laying in our usual spots for bedtime and as always everyone's asleep but me. Beginning to think I may have some serious sleep issues.
Jaydens really restless beside me. I get that awful gut feeling that it's not going to be a good night. I hope I'm wrong.
Im so very glad we got to return home as every day home with him is a bonus. It's not a given. We have no promise that tomorrow he will be home with us or that he will be well. We just have to hope and wait and see.