An open letter ...

Dear Friends,

All I can say is WOW! It has been a heck of a roller coaster and the ride is not over yet. What you may not know yet is that our life as we knew it before is over and a new one has taken its place. I will say that the readjustment has been extremely emotionally challenging, all time consuming and has dramatically affected how we will live our lives from here on out.

The high points of our new existence are these; Kya has had such a problem with her secretions in her lungs and not being able to clear them from her airway, causing her to go into pulmonary & cardiac arrest twice in the last 2 months, we were asked to consider giving her a tracheotomy (a permanent hole in her airway, through her neck) we consented and now everything has changed.

Due to Kyas chronic lung problems, she now is benefiting from extra pressure support provided by a ventilator to keep her left lung opened up and help it not to collapse. She still does all of her own breathing and if you see her around town or at church (maybe in a few months) she may not even be using her ventilator but these times off the vent must be kept short because she gets VERY tired quickly, her lungs start to dry out and then begins the problems with collapsing lungs.

Obviously our very special child now has even more very special needs. I am resigned to the reality that most of our own personal freedoms have to be put on hold for this season in our life. We must remain within earshot of Kyas monitors and within a certain radius of her person so we can assist her in clearing her airway in a timely manner, so as to avoid the necessity for CPR in the future. She is on a regimen of breathing treatments every 4 hours and medications every 6 hours. This dampers the social life a little bit.

Over the course of the next few weeks our nursing company will be able to get me more assistance and we will hopefully be able to get enough sleep to function as a human beings again, but for now it is night shift trade-offs and catching a nap whenever Kya lets us. Our anti-bacterial hands soap, hand sanatizer and Lysol purchases just quadrupled every month so now would be the time to buy stock. Also traveling anywhere (even the grocery store) is a two person job requiring a minimum of 45 minutes of prep-work to get out of the house and so it will be very limited from now on as well.

Although the emotional and physical demands are higher there are defiantly benefits to be had:

1) is that my house is spotless! Kya requires as much cleanliness as is feasible in a lived in home and I have lots of free time late at night. So Fly lady & I are good friends again!

2) I get to sleep in my own bed again…. YEAH!

3) No more dogs on my bed, no more dog hair all over my house and no more “accidents” to clean up. Yep, all the animals have been kicked outside (dog / cat hair & trachs do not mix!) and I could not be more pleased. I LOVE my animals but I am ready for them to be outside forever.

4) Last but not least, I have been reminded again about what is most important in this life, family! I am determined to enjoy every second I get to spend with my beautiful little girl and I will take every opportunity I have to spend time with my boys one-on-one while they are still young enough to let me. I am trying harder to be an awesome girlfriend to my husband and I am remembering to appreciate all of his hard work which allows me the freedom of staying home with my kids instead of carrying the financial burden as well. I have learned that my husband truly is named appropriately after Jonathan in the bible, who loved David and was unwavering in his devotion.

We sincerely want to thank all of you for your concern and especially your prayers. I know without a doubt that the Lord has heard and answered those prayers. We have received so many blessings of comfort, peace and also many tender mercies that I am unable to express with words what it means to me. Your faith is amazing and we would have been lost without your concerns expressed on our behalf.