Peter - Carepage - April 29th, 2008

Peter had his cardiologist appointment yesterday. Good news: he hasn't got worse and is responding to oxygen. The bad news: he hasn't got better. I went into the appointment ready to demand more action be taken on Peter's case just to have the doctor beat me to the punch. Basically we have "sat and waited" as long as we can for the pulmonary hypertension to improve and it hasn't. The cardiologist is at a loss on this, so now believes that the issue is caused by problems with the lungs and not the heart. I know this is going to get complicated, so I'll try to keep it at the 50,000 ft level. The original thought was the pulmonary hypertension was caused by the heart condition - which is the case in 90-something percent of the cases. Peter's heart was repaired last July 2nd. His pressure improved two weeks after surgery, and have remained the same since then. We now need to explore other primary conditions that could be causing him to not improve - so it is time to start testing the lungs. Cardiologist listed a bunch of different potential situations - none of which was minor....some are more "repairable" pulmonary conditions some are not, and unknown would be the damage already done to the lungs that would not be reversable. He asked that we see the one pediatric pulmonologist in Colorado Springs and get the tests done before our next appointment on June 9th. Called the pulmonologist to be told that the earliest they could get me in was August....mmmm... NO! So, I called good old Dr. McCaffery (our pediatrician) to enlist his help. He was honest in telling me I would not like the local doctor and would likely end back up at The Children's Hospital wasting time and putting Peter through the same battle of tests all over again. So he is currently working to get Peter referred up to TCH in Denver. We are waiting to hear back, but we could be there at least over night as the tests include a sleep study amongst other quite invasive testing. If the lungs don't show the cause for the continued pulmonary hypertension, then they will catherize his heart again and see if there is something they missed from a cardiac perspective. Needless to say I was quite emotional yesterday - but today am feeling better and ready to fight a good battle! And now is when I get emotional again - the hard part is knowing that we are racing against time now. While Peter is currently responding to oxygen, if that changes the battle is lost and it would be watching Peter struggle harder and harder to breathe until his lungs gave out on him. So time is not our friend right now. I struggle because I pray, and pray, and pray for Peter to be healed....and I know deep down inside that one day God will answer my prayers - but I also know that the answer may not be what I am looking for - the answer may be taking Peter back up to heaven. I try to get my arms around that - and wish I could say I am this inspiring faith-filled person that could accept that. But, I am not...Peter inspires me to be more that way - but the thought of not having him in my life to inspire me each and every day breaks my heart into a million pieces, tightens my throat to where I struggle to breath and ultimately crushes me. I refuse to give up hope even when I am told there is no more hope as Peter needs me to have that. So, with more tears in my eyes again - here we go - swords drawn and our eye on the prize, we begin another battle for our little boy's life. Please keep praying for Peter!! To end on a higher note - guess what? - Peter is even cuter than last time! I promise to get pics posted later tonight (so please come back!). He is doing really well at sitting, is working on army crawl, we are working on self-feeding but have a way to go there! We will be starting cows milk soon...and will celebrate 1st birthday on May 9th. Peter gives his best every day! I say it again - if I were 1/2 the person Peter is, I'd be a million times better than I am today. HUGS! catherine