A New Day!

Diagnosis- Chronic Obstructive Pulmonary Disease, or as her Pulmonologist put it simply, 'She has Chronic Lung Disease.' We always knew that her lungs weren't the best, giving her problems the second she was born, but we were always told it was simply: asthma. The doctor brought in xrays of her lungs to show us the hyper-inflation and the damage that has been for the first part of her life: possible under developed lungs, breathing issues at birth, RSV and Pnemonia at 6 months old, aspiration for several months before we knew, refluxing into the lungs, etc....the list goes on. Fragile lungs stressed and strained. They didn't want to do any more testing in Texas since all of her doctors are back here and 2 of the tests require her to be healthy, so their primary concern was to just get her home safely, home to Phoenix. They also wanted to do an EKG to see if her heart has been strained to make of for the lack of lungs, but the EKG was cancelled because of how feisty and terrified she was. The hospital social worker worked very hard for us Wednesday morning to get enough oxygen from a company that would allow us to cross through 3 states. My dear mother had driven down from Utah the moment she heard we were being transferred - 16 hours in the car to help her daughter, and her grand daughter. Didn't even hear from a couple family members, yet my mother, always going to the ends of the earth for her children, never ceases to amaze me! I guess it's in those dark moments, the moments that you may not be yourself, you may have nothing left to give, the moments you arent' sure where to turn or which way to go...it's those moments the true friends, the angels of the earth step up and don't let you fall. By Wednesday morning my mother, Jaden, Preslie and I were ready to go back to Hobbs with Kurt for the night and get ready for the 10 hour drive the next day. Preslie, although happy to be out of the hospital, was still not herself, still not 'ok'. She was pale, she was tired, she was still very sick and still fighting fevers, coughing and fighting to breathe. But we got her through the night and although we didn't want to leave the support and love of Kurt, we hit the road home. It was a long drive, stopping several times to 'fix' things, help kids, bathroom, food breaks, but finally made our way home late that night. Bitter-sweet in so many ways...

I entered our home with a very heavy heart. I didn't know much about this new diagnosis, but I knew on a whole new level how very fragile my princess was. And once again cords and tubes...such a familiarity I was hoping to forget all together. But in the end, we were home, familiar sights sounds, a real bed, normal food, no nurses coming in every 2 hours, and reunited with my Ky bug. I couldn't have done that drive alone - so mother, from the bottom of my heart, I thank you!

Finally home, she took kys hat, life becoming back to normal! :)

Since being home, Ive had a few 'releases'...letting the fear, the exhaustiong, the uncertainty out, hoping to finally exhale and get it all out. We met with Pediatrician, pulmonology and cardiology shortly after arriving home. They all agree with the new diagnosis, they all agree she is very fragile. Cardiology was happy to report her heart is fine, so good to hear that, so good to be at peace in that sense. I left the Pulmonologist with an entirely different feeling. Preslie doesn't have a broken heart that can be repaired or an illness that with proper medication can keep it under control.....no, the lungs are different...Preslie has a chronic disease and we don't know what to expect, we don't know how many more hospital visits await us in the future, how many years we'll have oxygen tanks, machines and monitors floating through our house, how many nights will I have to see her struggle to breathe or cry in fear each time a doctor or nurse enters the room. We can give her steriod treatments daily in hopes to give some strength to her lungs, but reality is, we don't know what to expect tomorrow, next week....the next cold, the next bout of crop, or what will ultimately get the best of our baby girl. The Pulmonologist wants to do a bronchiol scope as well as redo her sleep apena test, but even so, if the results aren't good, there aren't many options - c-pap at best and we all know how much a 2 1/2 year old will love sleeping with a mask on her face...but it's better to know, better to understand all we are dealing with then place one foot in front of the other and move forward! The doctor left me with this: 'She is fragile, she doesn't have the reserves that other children do, so when she gets sick, it hits her ten times harder and will take ten times as long for her to get better... and in the end, there isn't much we can do.' I left with a very heavy, achy, heart...trying to keep the fear and worry under control and look for every reason to smile. Could it be worse - yes, do I still have my baby girl - yes, are we home and out of the hospital for now - yes...but the fear is still there; I cant deny that, the worry still creeps in from time to time, the longing to just make her all better has now become a permenent part of my soul, but I am trying to manage all of those emotions, just breathe and enjoy every second of my princess....She is a gorgeous angel that has enriched my life beyond measure. Her eyes radiant and pure, her smile infectious and healing and her soul perfect as can be and for now, for now she is still ours, ours to love, ours to learn from, ours to laugh with, love and enjoy with each breath we all take together!



Getting settled back into her routine at home...always loves the balls in therapy, but today J had to get in with her!



Just being beautiful waiting for her Pulmonologist!