Dylan's Journal

Update on Dylan. Dylan had the Ross Procedure done on July 19 and was in the hospital until the following Monday July 25 when he had his old pacemaker removed and a new one inserted. They discharged Dylan the day after from ICU. I was not prepared properly when we got home. A blood pressure machine and a thermometer was a "MUST HAVE" which we got immediately. Then I needed a notebook to keep track of medication times and vitals. Dylan was having a hard time keeping down his medications and started developing fevers and the left side of his body started swelling. The pharmacy was very patient me and my calls concerning his medication and symptoms he was having, as well as the on call doctors. It seemed like all h*#£ would break lose after hours. We brought him to the hospital clinic twice. And during the second visit they found out he had a blood clot (DVT) in his arm on the side of his pacemaker and he had fluid and inflammation on his heart which was causing his high white cell count and fevers. They ended up readmitting Dylan last week. His blood was not cooperating and he ended up having blood transfusions. After a week there they felt it was safe enough to discharge him yesterday. His labs are still out of normal range; he is still at risk for bleeding and infection. As they have him on Coumadin and his INR level is still high. He was taking 21 pills a day so hopefully he will be weening off most of them soon. Today he is walking to keep his blood circulated. He is breathing in his spirometer and so far holding down his pills. His temperature is normal but his blood pressure is a little high. He says he doesn't feel right. He has an appointment tomorrow with his primary doctor and Friday the Coumadin clinic. Please could you keep Dylan in your prayers?

Today 7/25/2016 Dylan had his surgery. Just before taking him down he asked if they were going to put a tube down his throat. When they said yes, bells and alarms went off inside him. I could see his heart pounding in his throat. He dropped his head and said, "Oh God I can't do this!!!" He was breathing in through his nose, out through the mouth. I started to panic inside for him and immediately sent out a 911 for prayer! When I saw that someone had written: "praying" I sat on the side of his bed, facing him, as he was sitting in the chair. Suddenly I felt this warm heat fall over me and a sense of peace. I looked at Dylan sitting there; he shut his eyes. I was watching the heart beat on his neck go from a hard pound to a normal beat almost instantly. He became calm and asked me if I could help him back into the bed. Not long after that they came to get him. The surgery took about two 1/2 hours. They brought him into ICU about 1/2 hour ago. His surgeon Rahul Doshi said it was a success. He pulled the wire that was broken, out through the leg, and then took out the other wire, his old pacemaker, and then put in the new St Jude Pacemaker! They said when Dylan came around he said, "Am I good? Is everything ok?" Thank God for surgeons!!!! Thank you for your prayers!

Today at 2:00 is Dylan's surgery. The picture is of him last night holding his external pacemaker that will be removed today during surgery and he won't have to carry it around any more! He had a rough night last night. They upped his pain medication so he's sleeping right now.

Dylan's Surgery Scheduled: Monday- July 25, 2016 They were trying to get Dylan in for surgery yesterday to replace his pacemaker which raised the level of his anxiety to a "Code Red" He was quiet and then would tell me his body can't handle this type of stress. He couldn't eat all day which made him feel worse. He told me he was just beginning to feel like he was out of danger, and looking forward to getting stronger, day by day. The doctors finally came in and told us the surgery is scheduled for Monday, July 25 in the afternoon. Which eased his nerves for a second. We have been talking a whole lot about life. How temporary it is, and that each day is a gift from God, and that we need to take advantage of each moment, and utilize the gifts he gave us to help others. - You are going through an ordeal right now, but when you get through it, you will be a much stronger person because of it. I know you can't see it now, but in time you will. I reminded him of what he just told me: that he was just beginning to feel like he was out of danger, and looking forward to getting stronger, day by day. It wasn't something he thought would ever happen the day before. He thought about it for a minute. He was quiet. I said, "A penny for your thoughts" He then said, "Now I know how Dana must be feeling." That is his best friends aunt, who is very young, fighting cancer. They will be going up through Dylan's leg to pull the broken wire out from his upper heart chamber. Then they will open him on the left side of his chest, sort of close to his collar bone, and replace the leads to his upper and lower chamber of his new dual chamber pacemaker. They won't be certain until they go in if the lead to the upper chamber will pull out of his heart; it could be stuck so they will have to sever it and maybe leave some in there. The surgery has it's risks as all of them do. Today (7/23) his anxiety level was high but as the day has progressed I have noticed it tapering down some. He's been doing his breathing exercises every hour and walking the hallways. When he's done he says, that's enough, I need to lay down. This morning he had all his pills lined up on a napkin on his food tray and had the nurse tell him what each one was for. Pause- We just got back from the nurse taking him for a ride outside. Ps: earlier I read to Dylan the posts from everyone who wrote, on his posts. Thanks for encouraging him with your experiences. How can anyone challenge them? Heart surgery is heart surgery and he was definitely taking it all in.

Today, they have been trying to help reduce Dylan's thinking to one thing, and to learn a few techniques that will help him to recover quicker, and to stay focused on those things, by not take on so much in his head. To say the least it was a rough day for him. He was afraid to take his medications because he thought his heart would have a reaction to them. The code colors that were called out in the hallway of the unit he thought it was something wrong with him. When The Iv pole machines beeped he got worried. The occupational therapist came in today and worked with him. He asked if the breathing treatment could cause damage to his heart while breathing in like that but he was surprised when he went past the 500 line something he couldn't do earlier. Now he will be going in for another surgery to replace his pacemaker. Which has it's risks and benefits but it needs to be done. Right now they are using an external pacing device to control the pacing of his upper chamber in his heart. They couldn't change it out during the surgery because it's a different issue than the valves. This is the electrical blockage between the two chambers. So they are trying to get him stabilized and do it sometime next week. Dylan was so happy that Melanie flew out to be with him before, during, and after surgery, but she left today to go back home to Florida.

Day 1: They are working hard to keep him stable and comfortable. They are gradually removing tubes. They got him out of bed this morning and got him started using a breathing apparatus. He started to get concerned because he couldn’t bring the indicator up over the 500 line. But they kept reassuring him that- “what he did was a good start”. He's asking questions, trying to process what happened and what's going on with his heart now. He said he wants to make sure he's doing everything right because he doesn't want to get pneumonia or have any complications with his heart. They removed the tube in his neck early this afternoon, and later another one in his stomach. He asked if it was going to hurt. They said they would give him pain medication and he will feel something, but he will feel much better once it’s out. After they took it out he said, “that wasn’t bad.” Good News: they moved him out of ICU into the postoperative unit. He's definitely got his work cut out for him. They gave him a Heart Pillow to hold against his stomach for when he coughs. It had a pen attached to it, which I didn’t realize it was for people to sign, until after he stared at it for a second, and then asked the nurse who was helping him, if he would sign it. He’s having a rough evening, complaining about being really hot. Melanie and I were fanning him down with a mouse pad and get well card. It helped until the nurse came in with a bunch of cold packs. He had me google everything. How to control nausea, how to urinate after surgery, etc... We learned that the stick to help suction the phlegm out of your mouth is called a yonker but really spelled (yankauer– named after Dr. Charles Yankauer who invented it)They sent a nurse and doctor from ICU to check on him. They have been working to get him stabilized. I am trying to be strong and not show any type of expression that could give Dylan a wrong impression. But I’ve had to leave the room a few times to hide the tears! Everyone has been very empathetic. All the tests they ran this evening– x-ray, cat-scan, blood… it all looks good. That put Dylan at ease and it definitely put me at ease. Dylan is sleeping.

It didn't take too long for him to come around. First the pointing of his finger from each hand (not the middle one) then an eye opened a few cringes and then both. Then they explained they were going to take the tube out and worked on giving him a pen and paper and he managed to to write: "let's do it" Then they removed the tube out if his mouth. His throat is dry and he's very thirsty so he was wanting ice chips. I'm really proud of him.

We got the call to the desk. Dr Starnes said the surgery went well. He did the Ross Procedure and after that I can't remember a word he said. We can go and see him in 20 minutes.

Tomorrow we are taking Dylan to Keck for final tests and prep. He will be having the Ross Procedure to replace his bicuspid, aortic valve, his Mitral and Tricuspid valve will be repaired and a new pace maker put in. Tuesday is his surgery. I don't want to write more until I figure this journal out. I don't know if I have to change the name on it to Dylan's name, or what. If I do, I don't know how to do it. I am backwards when it comes to computers. But I need this!