In my attempt to take each day as it is and to deal with it accordingly...I am currently holding myself together with lots of Starbucks driven caffeine.
And a little frantic praying.
Any good day with Piper means everything is easy peasy and I have a smile on my face...this truly is unfair to Linley and all others in my path. I can only explain that the fear that goes with having such a sick child will encompasses every aspect of your self. Nothing goes unscathed when your mind is on something as scary as what we continue to battle against. Our good days mean I am able to focus more on Linley and relax...physically and emotionally. As you can imagine this makes me a better mom than on the days I get so antsy being away from Piper while with Linley. And I miss being with Linley as much as I miss the way Piper feels in my arms.
It's not fair for anyone and I don't quite know how to better help anyone now.
Pulmonary hypertension has become our biggest problem by a landslide. Pipers lungs look wonderful and she is able to be awake some even while being ventilated. Her scratching is horrible and because of this they give benedryl which causes her to sleep a lot. We would love to find a happy medium where she could be awake and playing but so many things have to work together and so many things are not. When she is in pain or uncomfortable because of the ventilator they have to give the fentanyl because otherwise her oxygenation drops because her heart is working too hard. Then fentanyl causes discomfort because of the itching so they give benedryl which makes her sleep. Of course too much of the medication given for her pulmonary hypertension causes a drop in her blood pressures...
It makes me tired to think about it.
Piper has had an ultrasound for her belly distention, a EKG/Eco for her heart and the normal daily X-ray for her chest and tube placements. Her belly shows some extra fluid but not enough to explain the swelling she has. Her liver is a little swollen as well and we hope its only because her heart is working so hard not toxicity or leukemia. And we are still waiting for the results from the EKG/Eco to know what is going on with her heart...if it looks larger today we will probably have to have a heart catheter placed to monitor her closely. If it does not look worse today then she will continue to receive sildenafill (Viagra) and we should see an improvement in her oxygen stats soon as they have upped her dose this morning.
Im ready to get some good news. Piper still has no counts which means she cannot fight off infections well and we are constantly exposing her to new elements. It's also concerning because despite Piper needing to fight for her life now we are still fighting against leukemia and what her counts do when they recover will greatly help the doctors make a plan of action. Too many things that again, must work together in order for anything to work at all.
Chad and Linley left today for the weekend. We are having the St. Baldricks fundraiser on Saturday and I will be getting two bald loves back on Tuesday. I know Chad is concerned about me and Piper both so please pray for an uneventful time here or even better yet, pray that we see improvements each day so he can relax and enjoy the time with friends and family and his sweet firstborn.
I'm sitting next to my sweet Piper as she sleeps and I am drinking my green tea shaken lemonade and admiring my newly polished toes. If not for the steady stream of medical personal and the wheeze of Pipers ventilator, I would be able to lie to myself and pretend I were on my balcony back home.
I wish it were so but instead we will continue to battle and work through what is going on on the meantime.
Prayers are coveted. I've mentioned before being tired and weary and downtrodden but I hope and pray above all else that I never become despondent at this hand we are being dealt. If I do, I will greatly grieve my own soul as my hope does not come from my daily circumstances but from the Lord. Good or bad, each day will change but God and His infinite faithfulness never will. I'm thankful.