July 31st - Evan underwent a 4 hour open-heart surgery that was a sucess. After 4 weeks in the CICU, he moved to the 7th floor for recovery. The biggest difficulty was feeding him, and what he wouldn't take by mouth he had to take through a feeding tube.
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August 10, 2006 - Evan had a minor setback with his heartrate rising and dropping, a condition known as tachycardia (high heartrate in the upper chambers) and is fairly common in babies who've had cardiac surgery. So, he spent a few more days back down in the CICU. Although a step down, returning to the CICU was a nice reunion with Evan's favorite nurses and doctors! August 17, 2006 - Finally the day came!! After 38 long days, Evan finally got to go home! It was the first time he lay with NOTHING attached to him except his feeding tube! He finally got to see what his real home looks like! September 29, 2006 - Evan made a return to Children's for an outpatient hernia surgery. Didn't think it would be a long visit, but it ended up lasting almost a week. His heartrate started dropping again, and it took a while to wean him off of oxygen and monitor one of his medications, which may have been causing some of the stress. Amidst the excitement of this visit, Evan started smiling this week! October 5, 2006 - Home again! Now starts a flurry of visits from family and friends! Evan is now weighing in at 8 lbs 1 oz.
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December 15, 2006 - Evan is back home again, this time on oxygen, but will be returning to Children's in a week to have minor surgery to get a G-Tube (a feeding tube placed directly in his stomach). His lungs look chronically ill, and this surgery will help them heal. In January, he will have a heart catheter done to open up a blood vessel that has narrowed since his open heart surgery. He started laughing this past week and smiles all the time - what a happy baby for all he has gone through!!!
December 22, 2006 - The hardest days came around this time. Evan's G-tube surgery went OK on Wednesday, the 20th. However, he had some problems in recovery. He first spent some time in the NICU, where he remained intubated. His oxygen saturations dropped several times. He dropped to 32% (normal for us is 100%, and they're happy with him in the 70's or 80's). He was put on a paralytic to keep his agitation down, but he started to come off of that, so they decided it would be best to move him to the CICU. He was put back on the paralytic for the night, and his saturations were in the 80's by the next morning. However, they once again tried to remove the paralytic, and as he woke up and became agitated, his saturations dropped all the way to 7% before they were able to get him back up. His problems right now are many-fold, and we're not completely sure where it's all going to take us. He's still recovering from surgery, he has pretty bad lung disease, and he has a narrowing of one of the branches of his pulmonary artery (scar tissue from his initial surgery). They need to do a catheterization at some point to open his PA, but that was originally going to be down the road a month or two, but now they may need to do it sooner.
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December 25, 2006 - We finally have a plan in order...Evan's right lung is either infected or has some secretions in it that they need to take care of...the Pulmonary team will come to see him tomorrow to get a sample of whatever is in there causing so much stress. Although he is paralyzed and calm right now, they have to let him fully wake up each day so that he can use his muscles. Waking him is actually very scary because he has been desaturating so much. His heart catheter that was originally going to be in January will be done hopefully this Friday if they can squeeze him in. They are hoping that this too will help the situation and control the desaturations. Finally, the right side of his heart is not pumping well which makes it hard for the body to get the right amount of oxygen. Such a strong little guy!! On a happier note, Evan and his family had a very nice Christmas considering where they were. Grandparents, uncles and aunts, even Santa came to visit (and brought him a bag full of toys!). He also got his picture with Santa and Mrs. Claus! KDKA brought in stockings with stuffed animals and the wives of the news anchors made cookies and brownies. They really do everything they can to make the best of the situation. December 27, 2006 - Evan's heart cath got moved up to tomorrow (Thursday). His right ventricle is failing and his heart rate was in the 190's today to compensate. He was baptized at the hospital today with a celebration to take place later when we all come home.
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December 31, 2006 - Evan has been doing better since his cath, but is now still dealing with some lung issues. He is still intubated and each time they suction his tube, they have pulled blood up from it (except for this last time so we hope that it may be over). It starts out as brown old blood and then turns into brighter, new blood. They started him on steroids today to treat it and he'll get them for 5 days. His temp was up a little bit today along with his blood pressure, so they are trying to figure out the right mix of drugs to stabalize him there. It looks like he may be here a while, so Evan's parents Amy and Greg are trying to get into the Ronald McDonald house.
January 7, 2007 - Today Evan actually had to go into an unplanned surgery because his new G-Tube (the feeding tube in his stomach) had separated from his stomach and everything they put down it went outside of his tummy, probably causing the infection and fever that he has been having the last couple of days. When we left last night, Evan's tummy was very big, and they decided to stop feeding him and just put him on fluids. This morning they drained 10 oz of bile and stomach juices from his tummy and the areas surrounding it. Cardiology asked General Surgery to come by and look at the G-Tube area and they determined that it pulled away from his stomach. This problem required that he go into surgery right away so they could re-attach the G-Tube and get the fluid out from around his belly. It took about an hour and a half and went well. Of course the plan before all of this was to get the breathing tube out today, but that will be delayed for a little while now. Since this surgery, they have been trying to keep Evan calm and sedated, but he has developed such a tolerance to this stuff that he laughs at morphine, fentanyl and now cisatricurium (the drug that they used to paralyze him before). I hope they can find something to give him because he is clearly uncomfortable with the breathing tube up his nose and the stomach draining tube down his mouth. He has had 2 episodes of de-sating (his oxygen dropped a bit), but there was no color change that went with it so at least thats good. We're not sure of the immediate plan now except for trying to keep him comfortable, but we will update you again when we find out. Mom & Dad are going to be staying at the same apartment they had last summer until Evan's return home.
January 11, 2007 - Evan is scheduled for another open heart surgery tomorrow, Jan 12. It was determinined that the hole in between the upper two chambers is causing him much difficulty and as a result is keeping him from being extubated. The operation will be done to repair the hole and with God's help get him on to the recovery road. The operation is scheduled for sometime in the afternoon.
January 12, 2007 - The last couple of days have been very difficult. As you all know, Evan was supposed to have another open heart surgery today. This has been delayed until next Tuesday, reason being that Evan went into cardiac arrest yesterday. They were able to get his heart rhythm back within about 3-4 minutes. They responded so fast...they are amazing, but it was a bit numbing for Mom and Dad. It's a feeling that can't adequately be described over email or in any form of communication for that matter. They have since done an ultrasound of all of his organs, and so far nothing looks like it's been affected, THANK THE LORD!!!! He had a CT Scan done today of his brain and preliminary results show nothing to be concerned about. Evan's fever is still hanging on, so please pray that it will go down quickly. Please pray for the next 3 days before surgery as well as surgery day itself. And please pray for Greg and Amy to be strong right now. This isn't something that will solve everything, but it should help a lot!
January 15, 2007 - Evan is on for surgery tomorrow, last case, so probably sometime in the afternoon. He has had a good few days since the "event" on Thursday considering what happened. His CT Scan came back with normal brain activity, and his pancreas was a little swollen, but the swelling has since gone down. He has been having low platelets in his blood, so he has been getting a good dose of them every now and then. Amy and Greg are trying to be as strong as we can, but they are both still very nervous most of the time. They have been sleeping at the hospital in their sleep rooms, and leaving only to take a shower and eat lunch at the apartment. Everyone is praying constantly and hoping that this surgery will help him a lot. He is such a strong kid!
January 16, 2007 - So it's over...and Evan did great! The whole surgery took about 3 hours, and family was updated throughout it. Evan is back in the CICU looking so good...we are just amazed at this little boy. The next few days will be critical so please keep praying for him. Evan is in a "fixing one thing can cause another thing to happen" stage and there are still issues with his pulmonary hypertension (high blood pressure in the pulmonary arteries) that need to be dealt with. By closing this hole in his heart today, he could potentially have even higher blood pressure around his heart. So the doctors need to figure out the right medications to give him to treat this. A special thanks from Evan's family to THANK YOU all for all of your love and support. They feel truly blessed to have such wonderful family and friends.
January 20, 2006 - Well, we've been out of surgery for 4 days now, and the news is very good for the most part. First of all, Evan looked nothing like he did after his tetralogy surgery in July. He was much less puffy, had his chest closed, and really looked very good. In fact, he was on fewer medications post-op than we expected! Since his surgery, he has been weaned from his paralytic and is currently being weaned from morphine, which has kept him somewhat sedated and in less pain. He wakes up often now and seems fairly alert. The only real problems he's had have been some issues with high blood pressure and heartrate when he gets mad, but then again, who doesn't have those problems when they're upset?!?! The pulmonary hypertension we had been concerned about is a relative non-issue. He was weaned off of the nitric oxide, which treats that problem, and there are no immediate plans to put him on sildenafil, which also relieves pulmonary hypertension. In addition, Evan's heart size has decreased significantly since his surgery, indicating much-improved pressures in his heart, which in turn indicates an improvement in function. So all in all, things have been good. There are a few areas of concern, as there usually are. First and foremost is getting Evan off of the ventilator. They have not really tried at this point, so we're optimistic that his trials will go well and he'll be extubated soon. Please pray for this. Also, Evan had an MRI today which indicated "1 major concern and 2 minor concerns," as Dr. Orr put it. The major concern, which had shown up on his CT scans but until now were unbeknownst to us, is that Evan's brain has atrophied and is not the proper size for a 6-month-old. The doctors hesitate to tell us what this means long-term, as they don't seem to want to get our hopes too far down or too far up. They remain hopeful that a little nurturing and encouragement will keep him on the right path and aid his development. The minor concerns include a "blip" in his frontal lobe that can sometimes indicate stroke, but overall they do not feel that this was the case. Also, there was a "blip" in his occipital lobe that could potentially affect his vision. Again, it is unknown how much of a factor this will be. Time will certainly tell with all of these things. They had been concerned that Evan was having a constant gaze to the right when he first woke up. But while he remains "stoned" at times, his eyes have moved to the midline and to the left, and he seems to be focusing better on things he sees. Please keep Evan and his recovery in your prayers in the coming days and weeks. We are optimistic and hopeful that the breathing tube will be out soon and complete recovery will soon follow. The Lord has seen us through so much, and we are forever faithful that He will be ever-present in all that's happening here. And we thank you all again for lifting Evan up...it has truly blessed him and our entire family.
January 24, 2007 - So the last few days they have been trying to get Evan off of the ventilator again with no success. Today they were going to just take the tube out and see how he did, but then decided they would get a scan of his diaphragm first to see if it was working properly. It turns out that it's not working properly and could be the cause of him needing the breathing tube. So it can be corrected surgically, and we are tentatively scheduled to go back to the Operating Room on Friday. This is actually a good thing...at least there is an answer...so they will do this procedure and go from there. We're getting there... A friend of Amy's from the Heart Parents of Pittsburgh group always says "baby steps climb mountains," and she is right! Please pray for this to go well, it will be his 6th procedure in less than 6 weeks.
January 26, 2007 - Just a short update to let everyone know that the plication of Evan's diaphragm went well. Basically, the right side of his diaphragm wasn't working at all, so they cut it, stretched it out, and tied it down so that his lung can fully expand. The doctors tell us that he really shouldn't be affected by this, and that the diaphragm isn't even used much from a muscular standpoint as you grow older. What it hopefully will do is allow him to get enough air into his lungs so that he doesn't have to work as hard and can get the breathing tube out! Hold your breath (no pun intended)...it will be a day or 2 until we find that out!
January 27, 2007 - The tube is.......... OUT!!! We finally got the breathing tube out of Evan's little nose! He has been tube free since around noon today, and is sooooooooooooooooooooooooooo much happier. He is moving his head around more, his eyes are looking everywhere and you can see the look of relief all over his face. He is on 9 liters of oxygen right now, which is a lot for a baby, but his "numbers" all look terrific...so far so good! Thanks for the continued thoughts and prayers...we love you all very much!
January 31, 2007 - Evan remains in the CICU and continues to do very well! His oxygen is down to 1 1/2 liters (from 10 to start), and he continues to appear more alert and comfortable every day. They're talking about moving us to another unit or to the recovery floor in the next day or so...we'll see. Amy and Greg have learned to give him some therapy for his lungs and to suction them for when they get back home, as he needs time for his lungs to recover from being "beat up" over the last several months. So, after a period of some further recovery for Evan and learning the ropes for mom and dad, we'll be home! We cannot thank you enough for all the support and prayers!
LATEST - February 6, 2007 - We're moving up to the 7th floor today!!!! After 7 long weeks in the ICU, we are headed to the recovery floor. Evan is doing very well despite having some major withdrawl from his medications. We will be there for a couple of weeks while they slowly increase his feeds...he hasn't eaten in so long, his tummy can't handle everything he needs so it'll just take a little time to get it back to where it should be. As far as his withdrawl goes, we just have to wait it out. They increased his narcotics a little to help, but there isn't much else they can do. He seems better today then he did yesterday, so hopefully he's on the right track. Thanks again for all of your thoughts and prayers. Evan looks better then he has in months!!!