Surgery is scheduled!

Today was quite the day. I posted yesterday about Josh and I's frustration levels with the lack of communication and plans being made for Sawyer. We planned to attend morning rounds and voice exactly how we were feeling to try and make some progress. We also planned to request a consultation with the surgeon if we didn't get any answers from the doctors at rounds.

We showed up to the hospital at 6:45 AM to see Sawyer and sign up for rounds. You have to sign up and then they call you back once they get to your baby and you are able to go in to the CICU (Cardiac ICU). Rounds typically don't start until 8 AM so we went to the cafeteria to eat breakfast and wait. They called us back around 8:30 and the whole time we were walking back there I was praying that God would allow me to speak with intelligence and keep my cool, but also that we would have some answers. I don't think I was really prepared for how things were going to work out. 

Upon entering we were explained what was going on and how his x-rays were looking. They didn't waste much time before telling us that another surgeon (other than the one we were originally using) had offered to do the surgery TOMORROW. Our original surgeon, Dr. Kanter, has been booked up and could *possibly* do the surgery Friday, but it wasn't anything they could guarantee. The other surgeon, Dr. Alsoufi, offered to do the surgery for us tomorrow and all of the doctors in rounds highly recommended him and told us they would NEVER offer another surgeon if they didn't have confidence in his ability to do the surgery. We discussed some of our other questions and set up a meeting with Dr. Alsoufi to discuss the surgery and meet him BEFORE we made any decisions.

We left rounds a little confused. We had planned to go in there and either get a plan of action for Thursday, or to really give them a piece of our mind (as respectfully as possible) about how they were handling the treatment of surgery. I know this isn't the case, but it really felt like we just kept getting pushed back. As serious as they made his condition sound it bothered us that they weren't acting sooner and it appeared that they ONLY reason they hadn't done the surgery was because Dr. Kanter was busy and backed up. Dr. Kanter is one of the best in the United States so we would have loved to have him do the surgery, but it was becoming more and more evident that we were going to have to consider other options to help Sawyer and help get this taken care of as soon as possible. I called the pediatric cardiologist that had done the pre-natal care, and will continue Sawyer's care after Egleston, to get his opinion. He said he did not know the doctor personally so he couldn't recommend him based on his opinion, but he did call the doctor at Egleston that was a part of our rounds this morning and got his opinion. He told us that at this point it wasn't about the surgeon, but more about the fact that Sawyer needs surgery and needs it soon. Dr. Alsoufi is relatively new to Egleston, but his background and experience is EXTENSIVE, and we know they would not have hired him if he wasn't held up to their standards.

We met with Dr. Alsoufi and he explained that he would make the pulmonary arteries smaller, close the hole in his heart, and also add the missing pulmonary valve. He explained that the surgery would be about 4-5 hours long and Sawyer would need another valve replacement at about 3-4 years and then another at around 14-15 years. Sawyer's condition is VERY rare. Egleston only sees about 3 cases a year. The operations they will be performing are ones they do regularly, it is just the combination of them all that is the rareness. After meeting with Dr. Alsoufi we left to eat lunch and make our decision. Both of us agreed that we had an overwhelming sense of peace about using this surgeon and also that Sawyer would benefit from having this surgery sooner rather than later. With all that being said - Dr. Alsoufi will be doing the operation tomorrow at 10 AM. Sawyer is his second case, so if the first surgery runs over it may get pushed back slightly. Also, the nurses have told me I will get to hold Sawyer before surgery. The concern so far has been his breathing tube and the chance of it coming out, but since he will be headed to the OR tomorrow, they are more comfortable with me holding him then. He was on his back today for almost 6 hours and did GREAT! So, I don't think this will be a problem, but I am also not letting them change their mind. I will be holding my baby before they take him for open heart surgery. 

There are a few things I want to make everyone aware of in regards to surgery. This surgery is going to fix his heart issue and help alleviate the pressure off of his lungs BUT our road is FAR from over. Sawyer has serious lung issues and breathing problems that will have to be diagnosed AFTER they move the pulmonary arteries. They have to alleviate this pressure in order to see how affected his lungs are and also how they can function. He will probably need to be on the ventilator for another week after surgery, and there may have to be some additional intervention in regards to breathing. None of this will be known until after surgery tomorrow. We are closing one door of unknowns only to walk through another. I wish this one surgery would make everything better and we would be able to go home as soon as he has recovered, but his lungs have been compressed for so long through the development in utero. The doctors have prepared us for this from the beginning (ha, I have lost the meaning of prepared) and have told us that for the first year of his life we will need to be on the safe side because even a common cold could collapse his lungs again. The first year is when the lungs are continuing to develop and is really a key time.

No one can prepare you for having to take your two-week old son back for open heart surgery. No one can prepare you for not being able to hold him for two weeks. No one can prepare you for the emotional roller coaster you will ride. I tried to prepare myself before birth but I honestly failed miserably. I am thankful we found out before birth so I knew that the road ahead would be hard, but I never knew how hard it would be. I am learning every day to rely more on the Lord and the blessing He has already shown us through the two short weeks of Sawyers life. 

Please pray for Sawyer tomorrow and that he continues to be a fighter. 

Please pray for Josh and I to continue to remain strong.

Please pray for our families.

Please pray for the surgeons and doctors that will be involved in this operation and that God will guide their hands.

We are so thankful for the outpouring of love we have received from friends, family, and those we do not even know. Words will never be adequate for what that means to us, but it really does mean a lot. All of the prayers, words of encouragement, and donations have been one of the big blessings we have received. Thank you all so much!

Here is the link to buy tshirts and keychains - sawyermurphy.com. Enter the website WITHOUT www in order to get to the correct site for ordering! The proceeds from these orders also go directly to our family to help offset costs, and they are both really awesome!

There are two other fundraisers going on right now:
 
The first is through our friend, Harriett Brawner and Lia Sophia jewelry, www.liasophia.com/harrietb . You can order anything from the catalog, you just have to enter Ashlyn Murphy as the hostess. If you have any questions - let me know and I can pass them along to her! All proceeds from this also go to Josh, Sawyer, and myself.

The second is through a friend of a friend, Danielle and Origami Owl jewelry. The website is  www.danielleshiflet.origamiowl.com and you can order anything from the website. At the checkout screen, select "Fundraiser for baby Sawyer Murphy" in the Jewelry Bar Information section. All proceeds will be donated to our family!

Love,
Ashlyn