Day before surgery in Philly

Chris and I arrived in Philly yesterday late afternoon (Wednesday). We were fortunate to be able to stay at the Ronald McDonald House of Philadelphia. What an amazing place. Over 300 volunteers and almost everything donated. It is the first Ronald McDonald house and it is housed in a mansion donated by a 19th century newspaper mogel. We met a woman there who spent more of the last 9 years of her daughter's life at the Ronald McDonald House than at her own home 3 hours away, because her daughter has needed intensive treatments at the Children's Hospital of Philadelphia. Without the support of the house and it's services at $15 per night, she would be bankrupt with nowhere else to stay to be close to her daughter. They offer free food, drinks, game rooms, arts and craft classes for kids, internet access, transportation to and from the hospital, wash facilities and supplies, all for that minimal fee. And to answer your question, no you do not get happy meals or fries there, only healthy food!

Chris typing here now - Victoria is in the NICU with Maya and her friend from Philadelphia visiting while I keep our place at this public PC. Maya has had a rough day. They had to sedate her for a CT scan with contrast, and they had to stick her 4 times to get a good vein. Just like her father - weak veins that hide, poor kid. Dr. Flake (the surgeon) discussed the game plan with us this afternoon after receiving the images. He said the CCAM is approximately the same size as pre-natally, and occupies the 3rd lobe of the right ling, but rests/is attached to the diapraghm on the right size. He reiterated the importance of removing this type of CCAM, because in the case of the type that rests against the diaphragm, it has a possibility of filling with fluid and bursting later in life, which would instantly collapse her right lung.

The Dr. told us that one of two operative procedures would be used. Ideally, he will go in thorascopically (basically a laparoscope that goes into the lung area) and carefully remove the CCAM via two small incisions that avoid cutting muscles between her ribs. This type of operation is delicate and takes 4 hours or more, but results in the least pain for Maya. If he decides early on in the surgery that the removal is too complicated by the CCAM's attachment level to the good lung tissue, he will switch to an "open" procedure, in which he cuts the muscle tissue between the ribs for more working room and pulls the lung partially out of her chest to work on it. During the surgery she will be sedated to the point that her lungs will deflate, and a breathing tube will be guided into her left lung for a machine to maintain breathing for her. The open procedure is faster, and is a 2-hour operation.

After the operation, a tube is inserted into her chest cavity to monitor for air leaking from the right lung. When the lung is declared sealed (usually one or two days...) they will release her...

At least that was the plan until we heard from a cardiologist later while we were in the NICU with Maya. She told us she did an angiogram of Maya's heart and discovered that she has a "PDA" (Patent Ductus Arteriosus ) as well as a "PFO" (Patent Foramen Ovale) , both conditions which are usually resolved at birth or soon thereafter. PDA is the more serious of the two. These are sometimes nothing to worry about and the PDA when monitored may close by age one or two, or it may need surgery. They will now be monitoring her VERY closely during the CCAM surgery and after, looking for signs of fluid buildup out side of the lungs. She may need to stay longer for monitoring. If there are signs of distress due to the pressure buildup on the top of the heart due to the PDA, they may need to inject her with medicine to close the PDA or even do open-heart surgery. If nothing is done during this visit, we will need to follow up with a cardiologist to closely monitor the condition. It is stressful because the cardiologist could not give us a prognosis or a timetable, like the nice if/then scenarios we were given for the CCAM.

Victoria here again. I will be staying with Maya in the hospital tonight. Should be interesting since they are saying no feedings after midnight and maybe surgery at 7am. That is a LONG time for Maya with no food and she will be VERY CRANKY! Maybe they will change their minds when she is screaming for a long time.

So needless to say we are exhausted and with the new cardiac information, a little stressed. We will be doing our next update post surgery...