It's hard to believe that Rebekah has only been here for one week! In a lot of ways, it feels like weeks or even months since she was born. In other ways, it's amazing to think that she is already here when we weren't even planning on her arriving until the end of this week. She is definitely doing things her own way!
The results of the heart catherization today confirmed what the doctors have thought for the last week or more....Rebekah does not have an artery from her heart to her right lung. She does have several collaterals (small spaghetti-sized arteries leading off the left pulmonary artery to the right lung) that are too small to work with now, but the doctors are hopeful that in a few months they will grow. The plan is to use these collaterals, band them together and create a small pulmonary artery leading from the right side of Rebekah's heart to her right lung. She will never have "normal" function in her right lung, but she will hopefully have some use after the collaterals are reattached correctly.
Because of the situation with Rebekah's lung(s), her heart surgery is much more complicated. In fact, her surgeon, Dr. Hsia (pronounced Sha), has never seen anyone with Rebekah's physiology. There has never been a patient treated at MUSC with her physiology. Dr. Hsia had to call all the way to London (yes, as in London, England) in order to consult with a doctor who has even seen this type of heart/lung combination. The general consensus of Rebekah's doctors after much consultation and debate, is that completing Rebekah's heart surgery as we first discussed before finding out about her lung, will put too much pressure on her left lung. Putting that kind of instant pressure on her left lung could cause heart failure and potentially pulmonary hypertension (high blood pressure in her lung) that would be irreversible. Obviously, no one wants that to happen!
SO, what will happen? Rebekah will have open heart surgery tomorrow (Tuesday) morning at 8:00. The doctors will make an incision in her chest and through her sternum. They will put what amounts to a rubber band around the pulmonary artery branch that leads to her left lung. This band should limit the amount of blood flowing to that lung, allowing more blood to flow to her body. Right now, her lung is getting way too much blood flowing in to it. To allow that to continue would deprive her body of the necessary blood flow for Rebekah to grow and develop properly. At this time, the rubber band procedure is all that the doctors are planning for tomorrow's surgery. Rebekah should be able to recover much faster than she would from the original surgery.
Once Rebekah has recovered and has met her goals for discharge, we will be allowed to take her home! :) The actual amount of time it takes to be released will depend on how quickly Rebekah recovers and how quickly she learns to eat (could be a couple of weeks or several weeks). After we are home, Rebekah will be very carefully monitored by her cardiology team to make sure her heart is functioning in the way that they want it to. Rebekah will be allowed to grow for somewhere between 4 and 6 months (depending on how her heart and lungs are doing) and then we will return to Charleston for the "big" surgery.
The "big" surgery will be quite extensive - even more than we were planning on for her original Truncus surgery. She will have the collaterals grouped together and reattached to the right side of her heart to form a pulmonary artery to her right lung. She will have a conduit with a valve put into the right side of her heart leading to her left lung allowing only the blood that needs oxygen to flow to her left lung. And she will have the large hole (ventricle septal defect or VSD) between the two chambers of her heart closed. The good news about all of this surgery is that she will be significantly bigger in size and development. Her lung(s) will have several months of use to grow and develop more, and she won't have to learn to eat after surgery.
Overall, Drew and I are very satisfied with this decision. We feel that the doctors have made the most informed decision that they can possibly make, and we are very comfortable with that. Ultimately, we know that Rebekah's healing is in the Lord's hands, and we are trusting Him with Rebekah's heart. Thank you all so much for your prayers and encouragement. It has really been so encouraging to us.
We will post updates tomorrow as we get them, but we were warned tonight by Rebekah's nurse that things in the OR can get intense and a lot of times the nurses there forget to call with updates.
Nancy
2 comments:
Nancy and Drew, I will be praying for Rebekah tonight and through the day tomorrow. I will ask the Lord to guide her surgeons in every step and hold you two tightly in His arms.
All the terminology is very familiar as I have been a medical transcriptionist for 35 years and 10 of those years worked for a cardiologist.
Hugs,
Denise Poarch
Woodstock, GA
Praying for you all. May the Lord hold you close in His arms. Remember the wait is always always long. Hardly ever is it shorter than they say and most of the time it is longer. This is because they are a through and careful as possible. And yes it often gets so hectic that the time passes quickly for the nurses as they try to anticipate the surgeon's needs, and they do not update as often as one would like.
Just remember who is really performing this surgery on Bekah. He is in control.
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