Duke, Surgery, Post Op Day 1 and 2

Hi All! It's been a hectic couple of days but I'll try to update and not be too long winded.  

We arrived at the Ronald McDonald house on Sunday and were able to meet with a geneticist that

Post Op Day 2

spoke with us about Keller's participation in a research study to hopefully answer some questions about why Keller is the way he is.  The test may not give us answers but at the worst it might help out some other kiddo with a similar condition.  They have already taken blood from Keller and will also be collecting blood from Phillip and I as well as swabbing Norah's cheek.  It could be months before we hear anything from this but it is nice to be a part of. After dinner we met the grandparents of another heart baby that is 5 weeks old and has had a rough go of it.  The baby's name is Miles and his grandma said I can share his name with those following Keller's blog.

Monday was a long day.  We reported to Duke at 7am for several tests.  Keller first had a sedated echo and then waited in PACU until he had a room on the 5th floor.  There were some concerns about his quick breathing but after he was able to get some of his usual medications he perked up and started smiling again.  They moved us to a room and after that he was able to get an EKG and eventually his CT and chest x-ray.  The CT was delayed because he had another spell with his breathing. Some of it was Keller's oxygen sats dropping and some of it was this team getting to know our Keller and what is "normal" for him.  We found out in the evening that Keller would no longer be the first case on Tuesday because Miles' would be first in the OR.  Miles' surgery had been postponed because baby Hudson, that had been in the news, got a heart and his transplant took place Monday.  Monday night I stayed in Keller's room and helped with his pre-op things. 

 The surgeon came in around 7am Tuesday and said that Keller's tests showed no new surprises and he would be able to do the repair as planned.  Next, the waiting started.  We were told it would be mid-late afternoon.  Because we knew the baby in the OR was Miles we were able to pray for his specific needs during the surgery but we also had some insight to Miles' situation and knew it would be a lengthy surgery.  The staff was very kind in regards to Keller having to be without food and coordinated with the staff in the OR so that we  could get a 2 hour warning before surgery, that way Keller wasn't without food all day.  We got our 2 hour notice at 2:15.  At 4:15 they took him to pre-op.  At 4:45 the anesthesiologist took Keller from Phillip's arms and walked him to the OR.  What a crazy feeling to willingly give your baby over to go be operated on.  While your are sad and scared there is still a feeling of "we made it!" The OR staff had our cell phone numbers so Phillip got our first phone call at 6:10 that surgery had started.  The phone calls happened hourly and went like this "Proceeding as expected,"  "on bypass and repair is being done," "proceeding as expected," "off bypass." The surgery was completed around 10:30.  Phillip and I saw the surgeon a little after 11 and heard the excellent news that he was able to repair Keller's heart.  There is a "residual ventricular septal defect" and also a little mitral valve leakage.  But Dr. Jaquiss is happy and so are we.  We saw Keller after midnight and stayed with him for a while, he looked better than we had pictured.  He had a breathing tube in his nose, a dressing over his chest incision and two drain tubes underneath the incision.  We got a couple of pictures (for the baby book of course!) and then went to get some rest so we could be at rounds. 

Wednesday Keller had a really good day.  In rounds they discussed some rapid breathing overnight they also decided they were going to remove his breathing tube.  Keller was a little restless but his nurse felt that once they could extubate him he would relax, and he did.  Phillip and I were able to spend some time with Norah and Poppy, Nanny and Mimi stayed and took turns being with Keller.  Over the course of the day his chest tubes (drains) were removed because they were not draining much and because he was getting active with his feet and no one wanted him to remove them himself.  He looked so good and it was amazing to us that we could already tell a difference in his breathing from before the surgery.  

**Side note** Keller is going to be a part of another research study.  During heart surgery on babies part of their thymus has to be removed for access capability.  That part of thymus is typically discarded but it actually can be used to help a child with DiGeorge Syndrome.  Keller's thymus tissue (pending a few tests) will be used to help a baby that is at Duke and in need.  By placing part of Keller's thymus into this baby's leg the baby's body can learn to make T-cells and in 5 months have some immune system.  It's actually an amazing study and Duke is the only place in this hemisphere that does that procedure.  We hope that his thymus is viable and can possibly help save a life.  If you are curious about it, ask Phillip, he has done some research on it all. ***

Today, Thursday, has been a kind of rough for our little champion.  He started fussing and acting uncomfortable before 6am and continued to cry and fuss until around 11.  He also got a fever in the middle of it all.  They are doing blood cultures, urine analysis and urine culture, and an ultrasound of his head.  They also have started giving him pedialyte in his tube and changed a few medications to "by mouth" or for Keller "in my tube, please."  We feel that part of his irritability can be blamed on hunger.  He certainly gets "hANGRY" and he hasn't had formula since 10pm Monday, pedialyte will only cut it for so long and he hasn't had that (except for the 10mL they just gave him) since Tuesday at 2:15.  Now that we can use his G-tube again he was given some pain medications through that and finally is resting.  His fever has dropped some now and we are praying it goes away and doesn't come back.  

Thank you all for your prayers since the beginning of our journey but especially since Sunday.  We have felt them.  We have been humbled by comments, prayers, and "shares" of Keller's story.  We have people praying for him that don't know him and don't know us and we truly thank you all.  Words cannot express the feelings I have in my heart.  I get choked up every time I think about it.  Phillip and I have been trying to sort through our emotions and thoughts now that the surgery has been done.  We are relieved, we feel like we can breathe a little bit because the repair has been done but we also know that this time is critical so our guard is still up.  Sorry this is so long.  5 days in hospital time goes slowly and there was a lot to cover.  

For those interested in following and praying for Baby Miles he has a facebook page you can follow called "Team Mighty Miles and his Journey"