April 16, 2012
Update 1: We got on the road at 5am and arrived at 6. They took us back fairly quickly and asked all the usual questions: What time did you last eat? What time did you last drink? Any changes over the weekend in your health? At 6:35 everything was answered, so the nurse brought Cain two dosing cups of medicine.
One to make him sleep, one to dry up bronchial secretions. The medicines were Pentobarbital, Demerol, and Atropine. Fifteen minutes later Cain said he was tired and rolled over to sleep. At 7:25 the anesthesiologist and one of the surgical nurses came in to tell us it was time. We gave him big hugs and kisses (although he was asleep) and they rolled him out of the room and over to the OR.
Update 2: 8:55am, they've just made the first incision and will have an update in about an hour. Not to be too graphic, but they'll be sawing his sternum and then opening the sternum and ribs to see the heart.I'm not positive, but I believe this is the point they'll put him on the heart-lung machine, so the surgeon can stop his heart to work on it. I hope that with the next update they'll be able to tell me whether they're going to be able to move forward with The Ross Procedure, or if he'll have to have the mechanical valve. Please pray hard that he doesn't have to get that mechanical valve.
Update 3: 10:10am, Cain has just been placed on bypass. They do not know yet what procedure they're going to do. It may be another hour or hour and a half before they're able to make a decision.
Update 4: 11:10am, Thank God, they are doing The Ross Procedure!!!
Update 5: 12:30pm, Wow! They have already moved the pulmonary valve to the aortic valve position and are currently working on attaching the homograft to the pulmonary valve position. I am so happy!
Update 6: 3:00pm. Spoke with the surgeon. He was actually surprised that not only is Cain's aortic valve bi-cuspid, but his pulmonary valve is as well, which is quite unusual. He said that the procedure went as well as they could expect. He isn't sure that the valve will last 50 years, but its working now. They are transferring him to the Cardiac ICU and we will be able to see him in an hour.
Update 7: We were able to go in and see Cain. He is currently on a ventilator and has an external pacemaker. His ICU nurse was great and explained everything to us. He has two large drainage tubes coming out of the bottom of his chest. They cut through the original incision scar so there will be no additional scarring there, however with the drainage tubes they had to make two additional incisions to the five he already has. He has a central line in his neck area, an IV in both arms and an arterial (I think that's what they called it, I am entirely too tired to google right now) IV in his wrist area. And some kind of line in his stomach so they can give medicines and monitor something or another. He also has a tube through his nose for suctioning and he has a catheter. When I saw Cain he was asleep but was opening his eyes a bit and was able to understand what was being asked. When the nurse said, "Cain your parents are here" he started turning his head to look for us and attempted to talk, which he couldn't because of the ventilator. That's where I lost it, I just couldn't keep it together any longer. He was given morphine and fell right back to sleep.
When we first arrived we asked the cardiologist in the ICU what was going on with the bicuspid pulmonary valve that is now in the aortic position. I wanted to know what it meant that it only had two leafs instead of three. The cardiologist told us, "honestly, it is so rare for a ross to be done with a bicuspid pulmonary valve, that I don't have an answer for you. I'm not even sure there is literature on it, so I will work to find out if there is any information I can give you, but for now it's working". The arrhythmia's are still there, which we were told to expect, however his heartbeat is irregular and they needed the external pacemaker to pace the heartbeat. His blood pressure is stable and his glucose is a little high, but he was given insulin to bring it down. I asked the nurse if she could just tell me, based on what she knows about the ross procedure, was Cain doing as well as other kids. She said he was doing great and that they expected him to be removed from the ventilator sometime in the morning.
For now, the hospital was gracious enough to offer me a room to sleep in so I could be here throughout the night. The room is tiny but it has a bed and I am so very tired. The ICU nurse will be sure to call me if there are any changes while I sleep. It's been an incredibly long day and although things went fairly good, there are new worries with this valve that also has a defect. I will try to rest a bit and spend a good portion of my time researching this situation.
Thanks for following us today and praying for cain. I will update tomorrow as I have new information.
April 17, 2012
Update 8: I was able to see Cain last night around midnight (for the first time since 5:30). I'd kept calling after shift change, but the nurse told me Cain was very agitated. He was trying to get his breathing tube out with his tongue. His blood gas was too high (or too low, whichever is bad), and he was still retaining too much fluid. At midnight she called me to tell me they had taken the breathing tube out and I could come see him. I ran down there and he was awake. He smiled when he saw me and then started crying and said it hurts so bad every time I take a breath. The nurse went to get Morphine for him and I told Cain not to wait for me to say if he's in pain. That the nurse was there to help him and he needed to ask whenever he was uncomfortable. He said ok. Once the morphine kicked in he asked me if he could have his Edible Arrangement that his nanna told him he'd get, and he asked me where his quarters were for the vending machine, and he asked the nurse if he could walk to the teen room to play video games. Apparently he's hungry, but cannot yet eat. His nurse told him she'd have them bring a mobile video game cart to his bed in the morning. Cain wanted to hold hands with me and asked me to stay for a while. I stayed for a few hours until he was sleeping good and I got a few hours of sleep. It's now 7:30am and I've already been down to sign up to be present at morning rounds. I have questions about the valve that they used. Everything on the internet said you don't use a bicuspid pulmonary valve in the ross procedure. So, I'm uncertain why one of the best surgeons in the country did that. Obviously he has his reasons, but as of this moment I don't know why.
Update 9: I went to the doctors rounds, which was fine. I mean, it wouldn't have been a big deal to miss it. They said he was doing good, but continues to need the pacemaker for the time being. They are moving him out of the ICU and into a regular room in a few hours. I just used this opportunity to talk to Cain a little bit and give him a kiss before I got kicked out again. He's still in pain, which is to be expected, but he wasn't crying, just couldn't really move much and said it wasn't just his incision that hurt, he said his ribs hurt and generally his whole chest area. I didn't explain why, other than to tell him this was normal with open heart surgery. I will, hopefully, have a chance to talk to his surgeon tonight when he does rounds, as he was in surgery during this mornings rounds.
Update 10: At 10am my sister and I were able to go in and see Cain. I stopped to talk to the nurse while my sister went over to Cain. He told her he was in terrible pain. I went over and he was crying and moaning. He was having a hard time breathing due to the pain associated with it. He was very upset and couldn't calm himself down. The chest tube is quite large and is in between his lung and chest wall. The area gets irritated on both sides of the tube and it is painful. Even the Morphine was not helping. The nurse asked my sister to leave so they could get him more medicine and get him more comfortable. When she mentioned me leaving Cain grabbed my hand and his eyes got big. It is so hard to walk away from your child when you know they need and want you, and so hard at the same time to know that your staying there will not help in the littlest. I walked back to the waiting room while bawling my eyes out. This has been harder than I remember.
About 12 they moved him to a regular room in the Cardiac Unit. Cain was getting situated and was asking about food. We're not sure if he has a mosquito bite on his back or the morphine is making him itch, but he's constantly asking for me to scratch his back, which is difficult as he's laying on it. I do manage though, but shortly after arriving in the room while I was scratching his back, he said in a panicked voice, "mom, my armpit hurts, my armpit hurts, my armpit hurts" getting louder with each time it came out of his mouth until it turned into blood curdling screams. I ran and got the nurse and several nurses came in. He was demanding ice. I had to leave because I was thisclose to losing it with the head nurse who acted as if he was annoying her with his demand for ice. My sister stayed and my husband was just coming in. I stayed out for about 10 minutes and when I came back he was a bit more calm. The nurse practitioner told me that it was the pain from the chest tube that was radiating into his armpit and upper back area. They said it is very painful and their plan was just to give him pain medicine on schedule as opposed to waiting until he needed it. Every few minutes it would hurt again and he would cry in pain. It is incredibly hard to see him go through this and I would gladly take his place. No one should ever have see their kid like this.
April 18, 2012
Update 11: Last night Zouhair stayed the night at the hospital so I could go home with Zayd and get some rest. Through the night Cain had several episodes of extreme pain, but with repositioning and ice, he's been able to get through them. They removed his large white bandage from the incision and its now just covered with Steri-Strip's. The incision looks really good and I'm certain that when it heals the scar will look fairly close to what it looked like prior to surgery. Cain's white blood count is a bit low, for now they're monitoring it to see if it will come up on his own, if not, he'll need a blood transfusion. He's had probably 100+ blood transfusions in his life, so this is no problem. They are going to put him on a morphine pump shortly, so that he will be able to push the button to administer morphine to himself as he needs it. He was able to stand up for a bit just to step on the scale and get his weight. He said his feet hurt which is normal, but they're insistent that he get up today to walk a bit. He's pretty hesitant to do that, I think he's afraid it will hurt too much, but I know he will at the very least, try. He is really being so brave and I am so inspired at the way he is handling himself.
|First time up since surgery|