Post #1: Peter and I are sooo excited - John and the kids are planning to visit tomorrow. I haven't seen the kids in three or more weeks so the anticipation has me giddy! The weekend was a rough weekend. As I mentioned we were moved to the ICC last week. Peter had a rough day on Thursday but seemed to be pulling through it on Friday and into Saturday. Yesterday was like taking steps back in time as he continued to be quite unstable with his oxygen saturation. The nurses we had felt very passionate about Peter's care which led to a bit of a confrontation with the cardiologists. As a parent my frustration peaked last night after the change in shift from one cardiologist to another when the treatment plan did a complete 180 and Peter was put on oxygen again. I think my frustration and request to talk to the doctors came through loud and clear - and appears to have been documented. When I arrived today Peter was back off oxygen. While he still takes plunges in his saturation rates, it isn't as often or as severe. To lighten the mood a bit he decided to squirt me while I changed his diaper....fortunately I was fast enough after the first signs to get the diaper on before the threatening rumbles developed into a storm of brown. And little man just had a little grin on his face the whole time! The new Neonatologist on call came by to talk to me today, as did the two nurse practioners in our unit. On a side note, I have to say I am realizing through this experience how important body language is in communication. Give me a doctor who will sit next to me and help me feel like my child is his only patient any day! We had a nice long chat about my concerns, my frustration and the lack of a "plan". (gasp...yes, I hear all my co-workers gasping in surprise that Catherine would want a plan!) I have requested a "care conference" in which we can sit with all the doctors involved in Peter's care. The doctor was very much in favor of coming up with a plan recognizing it may need to change/update, but something that puts everyone on the same page with care and treatment. It will probably be a couple of days to pull this all together, but it is such a relief knowing that we will have an opportunity to talk to the physicians at one time as opposed to going blue in the face telling Peter's story over and over and over again. I am also hoping we can get some continuity with the doctors and nurses as more times that not each day we have someone new who will acknowledge not knowing the whole case. Being with Peter every day, I feel empowered to be his best advocate as I can paint a full picture (from a parent's perspective) and hopefully be a part of his care plan. Anyway, thank you once again for your kind words of encouragement during the last several days - they were emotionally quite difficult. I hope to continue to have good news and updates each day as we get closer and closer to Peter coming home...when ever that may be. As usual I ask you to continue to pray for Peter and his recovery. I ask you also to please pray for my friend Terri who experienced a very difficult loss last week. Thank you!! Hugs & blessings! catherine 
Post #2: ok....going for two in a day! John and the kids will be up tomorrow, so we may be having too much fun to get an update out. I apologize for the medical mumbo-jumbo....and even more so to those of you with medical backgrounds who probably cringe at my spelling and over simplification! I'm just a mom taking a crash course to keep up with Peter's needs!! So, I ended up having an impromptu meeting with all the doctors caring for Peter this week today. The cardiologist who will be handling Peter this week and next week came to see him today. She had met John when we first got here, but this was my first time meeting her and she was a no nonsense kind of person. I liked her. While she was here with her team, I requested the Neonatal team come down so that we were all hearing the same things at the same time. Crowded around Peter's bedside and had a good chat. Rather than bore you with all the details - in a nutshell we finally have a plan! The cardiologist today indicated that while Peter is not following the norms for babies with a VSD, he is actually following a norm for babies with a VSD and Downs. That his saturation issues are not related to his persistent pulmonary hypertension (PPHN) or because of VSD shunting (blood flow back and forth between the ventricles due to the hole in his heart). Rather, babies with Downs tend to have higher pulmonary pressures than other babies, and can display spontaneous contraction of the pulmonary vessels for no reason (ie. stimulus, feedings, sleeping, etc). It made a lot of sense when she explained it as his episodes followed no real pattern. At this time he has been put back on oxygen so as to keep him stable - less ups and downs due to his pulmonary pressures changing. The amount of oxygen is as low as you can go, but seems to be doing the trick. They are keeping his oxygen saturation levels higher than the last 10 days, but still not quite normal. Over the next week they will track the progress on his kidneys healing (he was at 1.1 today and we are trying to get to 0.7) and his ability to gain weight. Last night he was finally at his birth weight, but appears to have lost 3oz today which makes no sense. If by next Monday he is gaining weight and his kidneys are normal, we will work with the doctors to get him home for weeks or months depending on his continued progress. If by next Monday he isn't achieving these goals, then he will likely have his surgery to correct the VSD next week. The expectation is that correcting the VSD is the first step to his lungs following suit, but there is a remote possibility that he would continue to have elevated pulmonary pressures. They didn't want to cross that bridge unless we get there - so I can't tell you what that situation would dictate as next steps. The cardiologist said that was unusual, and I think she didn't want me worry about an unknown at this time. The Neonatologists were pleased with the plan, so we are all on the same page now. Thank you again for everything!! One way or another we are closer to being home. If I skip tomorrow, expect an update the following day. Thank you for taking the time to follow Peter's progress and for your words of encouragement back...it is my lifeline to the outside world! Love & blessings, catherine
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