Monday, January 28, 2008

Peter - Carepage - January 28th, 2008

I woke up with a sinking feeling today, sort of sick to my tummy from nerves and quite anxious about the echo. I wish I could say my fears were unfounded, but they weren't....maybe a mother's instinct? Sorry if this is repetitive to all you who checked in with me today. But here is the synopsis. Peter got a cold on Friday which apparently is now "acute bronchiolitis" (not sure how that is different from bronchitis....still need to look it up). As a result, his lungs are "damaged". This caused his saturations to drop to the 80's, which in turn caused his pulmonary pressures to shoot up so over all the echo didn't look good. (His pressures should be under 30 and they were around 70) He is still breathing ok, but Dr Duster (our cardiologist) said if it deteriorates he could end in the hospital on a ventilator. Dr Duster says "the junk" is going around and is lasting 4-6 weeks....I am soooo hoping that is not the case! I'm hoping our beloved pediatrician Dr McCaffery will call me back - but either way we will see him tomorrow. When I gave the nurse the run down she almost had me going in for an x-ray - but decided to have us see Dr. McCaffery tomorrow first. Dr Duster also said given where Peter is now, he will have pulmonary hypertension for the rest of his life. He is optimistic it will remain reactive and not fixed which is the fatal form. He wants to get Peter to the point that he can live in Colorado Springs without oxygen during the day - but probably on it at night for ever. However, if he doesn't improve by July/Sept will have to put him on medications. The med is actually the active ingredient in viagra - so that should make diaper changing interesting! We may also get to the point of having to move to sea level so that Peter can have quality of life. So with that said - I need a nice glass of wine and a good cry! Then I can pick up my pieces and keep putting one foot in front of the other.....I have so much to be thankful for that I need to remember that even when I feel discouraged. Will keep you posted on Mr. Peter Bear over the next several days/weeks. Thank you for all your continued prayers! God knows when is the right time and way to answer our prayers - just once in a while I wish it was exactly like I asked!! Hugs! catherine

Saturday, January 26, 2008

Peter - Carepage - January 26th, 2008

Feast or famine on our carepage! Peter seems to have come down with a cold and is quite congested. His PT therapist cut his session short yesterday because she was concerned with his breathing. Of course too late to try and get into the doctor. We are taking it minute by minute. Of course Peter has his echo on Monday and I doubt this will help the numbers. Please continue to pray for Peter's health!! Peter had a rough night last night and was up a lot - which really meant bouncing between John and I as we took turns cradling him and trying to get some sleep. We were both exhausted and had planned to skip the 3am feeding for the first time - just so that we could get some consecutive hours of sleep. Peter had different plans! He is a little pale today, but as usual in good spirits and playful. He isn't coughing a lot, but when he does you can hear the congestion. It is hard to tell how much is in his throat vs his chest or lungs. a very sleepy state - just asking for more prayers for Mr. Peter. Will let you know Monday how the echo goes if not sooner if anything develops with Peter. Love to all! catherine

Wednesday, January 23, 2008

Peter - Carepage - January 23rd, 2008

Quick update on Mr. Peter he weighed in at 15lbs 10.5oz....yeah!!!! just over 5 oz weight gain in 2 weeks!! I can't tell you how relieved I am. I am so thrilled I want to call the feeding company and give them all their equipment back!! Amazing how I can get excited about ounces when I have plenty of pounds I could give Peter. I need someone to invent a way to transfer my unwanted pounds to someone who really needs them! Last night I had a dream that Peter's pulmonary pressures off oxygen were close to normal. It was so nice to wake up with that feeling of things being ok. I know it was just a dream, but it took the edge of the anxiety. Also, knowing that he can gain weight on his own is such a relief. No doubt one day I'll be the nagging mom that says "Don't stuff your face Peter!!" and I'll need you all to remind me of the days when I said "Peter - you need to eat more!!". I gave him a stern look today because he pooped right before his weight check...HELLO!! "Peter - we've talked about this pooping till AFTER the scale - we need to put the odds in our favor!!". Anyway....will keep you posted on little man soon....thank you for all your support & prayers & smiles & virtual hugs!! Blessings!! catherine

Tuesday, January 22, 2008

Peter - Carepage - January 22nd, 2008

Where does the time go?? I'm telling you I spend lots of time planning my next update and not very much time actually getting to the carepage. I'm sorry! I do think of you all and the amazing support you've given us frequently. I am so thankful to have a place to pour out my thoughts and feelings without feeling like anyone is staring at me or passing judgement. I am posting a quick update for two special prayer requests - first for our special friends Adam & Mindy. Just over a year ago they lost their beautiful daughter Emma due to a heart condition. Their second child Thad joined us all yesterday at a healthy 8lbs 10oz. He too has a heart condition, but different than his big sister. Thad is on his way up to Denver Children's Hospital and may have open heart surgery as early as tomorrow. So please lots of prayers for Adam, Mindy and Thad! Second, is to ask you to again pray for Peter. I wish I could tell you that Peter is gaining weight - but we aren't sure. After I last updated y'all he gained 2oz in a week. We haven't made it in since then. I'd say he is hovering around the same weight, but we are continuing to persist without the feeding tube. Every time we plan for a weight check something comes up. I'll post an update as soon as I have a weight. The reason for my update though is to ask for extra prayers in preparation of Peter's echocardiogram on Monday. He has had several since his surgery and each time the results showed no deterioration but no improvement in his pulmonary pressures on and off oxygen. To be honest, each day closer to Monday I am getting more and more stressed out. I didn't realize how much so until today when some friends at work - thank God for friends - had to hear me out on an emotional soap box about friendship, respect and sticking together through the good times and the not so good. Anyway, I realized how drained I am in anticipation. Emotionally and mentally I need there to be some improvement in the numbers - something to tell me we are headed in the right direction! Something to tell me Peter is getting better. My fear being that every day he doesn't get better is reducing his chances of beating the hypertension. So please, please, please - lets flood heaven with prayers for Peter. I think at some point God has got to get tired of hearing me beg for Peter's health! Well, trying to keep this short as I know I often get wordy. On a different note - Michael headed down to Peru a week ago. We miss him terribly and are so thankful for the technology that allows him to call home at any time! Now, he does need to fit us in between Spanish tutoring, swimming, Robotics, rock climbing, dinners out, weekends at the beach and all the other wonderful things we all wish we were doing with him. We miss you Michael!! So - here is to Mr. Peter! The wonderful, incredible and amazing blessing we've been gifted with!! He is the child that teaches us to enjoy life's little accomplishments. So while I often say my other kids are growing up too fast - with Peter he is growing up just right! He is going at just the right pace to allow us all to savor every moment and every accomplishment. If only every family could be blessed with a Peter! And here is to you - our support! Thank you for listening, sharing, laughing, crying and most of all for just letting me ramble. May God bless you all!! catherine