Peter - Carepage - July 17th, 2007

Peter will be 10 weeks tomorrow! I will be going back to work some time next week. It's amazing to think of all that has transpired in such a short period of time. I just wanted to send out a quick update on The Man. Yesterday he visited Dr. Duster - our cardiologist - whom was tickled with how well Peter is recovering. His wounds are healing nicely, he scored well on his oxygen saturation rates both on and off of oxygen, great EKG and a great echocardiogram. The echo showed that Peter's pulmonary hypertension is close to gone - yeah!! The pulmonary pressures were slightly above the higher end of normal, but the doctor seemed pretty convinced that Peter is doing great. He cut Peter down to a single dosage of diuretics and is going to leave him on oxygen for a little longer. He wants to give the lungs some time to heal after all they have gone through. I am hopefully Peter will be off oxygen in the next 3-4 weeks. Today Peter had a visit with our awesome pediatrician - Dr. McCaffery. He weighed in at 9lb 14oz, so about a 6oz weight gain since leaving the hospital a week ago. Amazing! And we don't need to fortify the breastmilk any more....we just need to keep an eye on his weight. His right lung sounded good so he continues to or has recovered from the collapsed lung. All is else was good and Peter just about threw himself off the exam table. He has learned to arch his back and push with his feet to turn around. The only set back we seem to have experienced since Peter came home was his feedings. As most of you know, the topic of feedings has been stressful for me with other kids - and I was loosing strength running into this with Peter. He had slowly been increasing the amount he was taking orally until this last weekend when he took a huge turn for the worse - barely taking anything orally. It became quite stressful as I was convinced I had "broken" Peter by pushing him too hard to take more orally. He was pushing everything out of his mouth and quite mad at it. I started working with the pacifier and he did great with that - just not the bottle. I have spent a small fortune on different nipples - just to have it work once and then be rejected after that. John and I had been concerned with Peter's throat while we were at the hospital, but cardiologists just don't check that out no matter how many times you express the desire to have it checked out!! :-) We assumed things were getting better, so unsure on the rejection of the bottle. Dr. McCaffery spotted that Peter's throat seemed quite red, and has given us some medicine to help him heal it. He concurs that Peter has what it takes to eat well, we just need to help him get there. Peter has shown some improvement this afternoon, and I hope that with the medicine he will continue to improve. It would be great to be off the feeding tube as I am sure it is no fun having a tube dangling down your throat. I ask that you continue to pray for Peter and in thanksgiving for the miracles of healing he continues to receive. I continue to pray for this too, and have felt the need to pray for Peter to be strong against the threat of leukemia (sp?). Children with Downs are at a 15 to 20 times greater risk than typical kids, and it is something that has bothered me since we received Peter's diagnosis. Peter's Godfather Bob received a miracle of healing from this same illness. I pray that Bob carried this burden for the family and that Peter will be spared challenge. Thank you to all again for all your many gifts and blessings!! Love, The Krauses.