Peter - Carepage - May 7th, 2008

Quickie Peter update (ha ha - we all know I'm not a person of few words!). First let me tell you one more time how incredibly blessed we are to have our wonderful pediatrician Dr. McCaffery! He personally called up to Children's Hospital and talked to Dr. Abman - a pulmonologist who leades the heart-lung center. He spoke to him for 30 minutes and asked him to personally take on Peter's case. The next day Dr. Abman's PA called us to ask question about Peter and start gathering the appropriate information. Dr Abman is going to be out of the country for a couple of weeks in May, but when we told them we needed to get in before the cardio appt on June 9th they said they see what they could do. Earlier this week they called - we have an appointment for May 27th. The exciting part is that they are in essence doing the sleep study at home. They are coordinating the delivery of equipment that we need to use at night - and that will in turn transmit the data to Children's so that they can review the data before we even go up - together with his operation notes and most recent echo. I am very hopeful about the care and thrilled with the attention Peter is getting. To top it off, Peter was featured in the newsletter that Children's sends to it's cardiac families....I'll need to see if I can scan and insert here some how. It is so cool that he was in this month's newsletter with Peter's first birthday being on Friday. I am taking the day off and plan on spoiling Peter more than he already is....and shhhhhh, don't tell him - we are getting him a seat that he can use to take baths with Tommy. Of course big brother Tommy is in on the secret and very excited. Tommy is taking his role as big brother quite seriously and is studying his sign language skills....now I know he is all boy because he repetoir so far includes eat, drink, cracker, cereal, diaper and potty. Hmmmm.....wonder if he had been a girl what he would have focused on learning. Of course diaper and potty are his favorite and he gets a big laugh. No doubt he'll soon be signing passing gas - as if the noise and odor were not already enough!! More Peter updates....he still has the cold he seemed to come down with last week right after his echo (maybe that impacted the numbers??). I thought it was a sinus infection because the drainage was thick and green and he was just not his normal happy self in the mornings. His appetite decreased which we are still struggling with. Dr. McCaffery put him on anti-biotics as he said the drainage plus dirty fingers in the mouth had given him a throat infection. I am hoping the meds kick in soon because he is totally off eating - even his favorites: strawberry yogurt and sweet potatoes (not together!). Extra prayers for Peter's healing. Yesterday Peter had his first eye exam. As I had shared with you before his eyes tend to roll into the middle - one eye more than the other recently. We never were too sure how much he could see. Well, doctor told John that Peter can see remarkably well....not sure what exactly that means - but that was encouraging. She also said that Peter needs two surgeries - one to fix a tear duct issue, and the second to correct the muscles that are causing the eyes to roll in. Unfortunately (or fortunately depending on perspective) Peter is not a good candidate for surgeries given his pulmonary hypertension and the severe de-sat episode he had under mild sedation for his hearing test. So until we get through the hypertension (holding onto hope here!) we need to massage his tear duct and..drum roll....need to get Peter little glasses to see if they will help his muscles. Have a feeling based on our experience with oxygen tubes that we will need super glue to keep them on! I told Peter that he is just so darn cute already, and the women go crazy about him that this might be too much. We will get him sexy little gold rim glasses for that professor-intellectual look and he'll be fighting off ladies! HUGS!! ck