I’ll be editing this post intermittently through the day as we get more information. We have lots of anxious waiting to do all day.
6:00am – We headed back to the hospital and I held Brendan all morning. Lots of signatures and people coming in and out to prep his bed for transport.
7:00am – The surgical conference should be starting where the doctors will make a final decision. The lead OR nurse said that it will take about an hour to get all the necessary lines in, the ENT doctor will do the bronch right away. They are putting in an atrial line and possibly another PICC in his neck, plus another possible IV.
8:00am – We hugged and kissed Brendan a thousand times and walked him down to the OR.
8:40am – The ENT doctor came out and showed us shiny color pictures of Brendan’s esophogus. There is definitely no sign of fistula and his airway looks pink and healthy. While paralyzed by anesthesia, both sides are open, it is only while breathing that the left side wants to collapse. The only other thing we heard is that they are still working on installing the lines. The radio controlled clock in the waiting room advanced itself an hour for the daylight savings time and totally threw me off! I am glad we don’t mess with clocks here.
9:30am – The surgical nurse just came out and said lines are all done and things are going very well. We have not heard anything about the conference outcome, but they appear to be moving forward with the Glenn. The nurse said they will come out shortly and give us another update once they do a few more checks. The waiting and lack of information is what is the most stressing.
10:00am – They completed a transesophageal echocardiogram and are going ahead with the full DKS/Glenn heart repair. Since they are only starting to open his chest now, we are looking at at least 5 hours before we even think about seeing him back to his room. They will be calling the nurse frequently with updates for us along the way.
One of the cardiologists and Brendan’s case manager NP came to talk to us. More than 20 physicians and specialists debated Brendan this morning and determined that this was the correct course of action for him.
He did get a right atrial line, a new PICC in his neck and a regular IV in his right hand. They have prepped us to expect that he will have LOTS of drips running so a huge tree of IV pumps.
He will most likely be on a ventilator with nitric oxide support added to help reduce pressure in his pulmonary arteries.
There is another drug called Sildenafil that he will be taking that relaxes the arterial walls and decreases resistance to help his blood flow through to his lungs. Although pulmonary hypertension was the original reason this drug was developed, research showed that another unexpected effect of the drug would make it extremely popular and profitable. Today it is marketed under the brand name Viagra. 🙂
After the chuckles about a 4 month old taking Viagra are done, the ugly side of this is that it will take the NP all day to jump through the paperwork nightmare to get the insurance company to approve and pay for this treatment, and to find the right pharmacy to compound this in the correct dosage for Brendan. Just another step along this journey that makes you just shake your head in amazement.
11:00am – The update from the OR is that he is open and has been on the heart/lung bypass machine for more than 15 minutes and is doing well so they are moving forward.
12:00pm – No update yet from the OR. I just wanted to share this graphic that I made to TRY to explain what they are actually doing in there. I got images from several different websites to put together in to one that truly explains Brendan’s heart.
The more simply I tried to explain it, the more of a mess I made. Here it is, as concisely as I can manage while still trying to have it make sense!! (Click to view large) Making that kept my mind busy while waiting, now Bill and I are going to walk down to the cafeteria to get some lunch and try to pass more time without pacing.
1:30pm – We got word at 12:45pm that he was off of bypass and about 15 minutes ago, they said that the surgeon was happy with the results so far and that he was going to close his chest! He should be coming back to the room in approximately one hour. We will be kicked out of the room while the huge team of people cluster around and get him settled in. He will get xrays and another echocardiogram, so we will probably be waiting at least another hour before we can see him. The surgical nurse practitioner was smiling to come tell us news, and we like that. When the doctors look a bit squirmy when they approach you, you know nothing good is about to come out of their mouth.
2:00pm – He just came back to the room and we got booted out. I got to peek at him in passing. He is swollen and very blue, but somehow he does not look as bad as I anticipated. The surgeon just came to update us and said that technically everything went very well. He is a little discouraged by the initial oxygen saturation, but time will tell as they get medications on board and optimize his ventilator.
The next 24 hours will be very scary. Things could change suddenly even as I type.
3:40pm – We have been allowed back in the room. Brendan’s color is looking good, they are finding his sweet spot of med doses and support. We were told that he will get worse for the next 6 hrs or so and then will start to get better. It is pretty overwhelming trying to take in all the information and process the answers to the questions I have asked. He is not very swollen at all but I was told that he will be very badly puffed up tomorrow. The worst is yet to come for me.. waiting to see if he reacts the way they expect him to, if he can be extubated (which is critical to do asap). I won’t be updating again for at least a few hours while we try to cope with all this and understand his true status.
