The Time Has Come...

Well, almost. I am going to use this post to update throughout the surgery. One of the nurses from the OR is supposed to call every hour to hour and a half with updates. This surgery can last up to 12 hours, so there may be several posts throughout the day. I felt this was the easiest way to update everyone at once, as it will be difficult to call/text/email everyone every time, and I don't want to leave anyone out. I appreciate every single person that has shown concern for Cain. He is so very special and loved by many. The least I can do is let you know how he's progressing. You can bookmark this post and check back as you'd like.

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



Update 12: Updating has been hard. Today was another day with a lot of pain. Seeing Cain with pain so bad that he is scared to breathe or have anyone touch him is so hard. I feel so bad for him and so helpless when I know there is nothing I can do....or anyone can do for that matter. It is unfortunate, but the chest tubes hurt. They hurt adults, they hurt kids, but they're necessary. For the most part Cain says his incision is just sore, but it's the tubes that are making him scream out in agony. I am so thankful for my husband because when I don't know what to do other than cry for him, Zouhair is right there talking him through it and picking him up to reposition him. At one point this afternoon they finally hooked him up to a morphine pump which helped a good bit. We had to remind Cain several times to push the button, but its kept him comfortable since they attached it. Cain has been able to eat a bit, but mostly he just picks here and there. Cain was able to move over to a chair today where he sat for almost an hour before needing to go back to bed. He is making progress.

I spoke with the surgeon about his choice to use a bicuspid pulmonary valve when everything I read on the internet says you should abandon the ross procedure if you find the pulmonary valve to be bicuspid. He explained to me that he was born with that valve being bicuspid and after several hundred echo's no one knew it was bicuspid because it performed properly. He did a pre-op echo and and echo in the operating room and there was no indication it was bicuspid. When he opened Cain and saw the valve, he made the decision to go forward with using it because if it performed properly on the pulmonary side, he felt it would work properly on the aortic side. While he does admit it will probably not last as long as a valve that had 3 leaflets, it was still a better option than a mechanical valve. He estimates it could last 20 -25 years. Today he came in and said my questions prompted him to do some research last night and he said that in 1996 he did this same procedure, with a bicuspid pulmonary valve on a 5 year old girl. She just had a clinic visit in January and the valve is still working perfectly fine. That reassured me. I knew he had a good reason for doing it, I just needed to know what that reason was.

April 19, 2012

Update 13: Last night Cain was having some issues with his stomach hurting. I talked with Zouhair around 9 and Cain was in the background moaning. They gave him some medicine, but it didn't really work. Cain had some visitors yesterday and they had him up walking a bit, so he was exhausted. He did get some sleep last night though. This morning at around 6 they took him down for xrays. He was able to get out of bed and into a wheelchair for that. Around 10am he had to get on the scale for his weight 53.3 kilos (117.5 lbs). The physical therapist came in just after that and said she'd take him for a walk at around 11:45. My sister and I got Cain out of bed and into a chair so that he'd be ready for the walk. At 12:25 she was still not here so we asked the nurse to get her. When she came in it took all 3 off us about 15 minutes to get all of his cords untangled enough for him to walk. He stood up using the wheelchair as a walker and then walked about 4 feet one way and 4 feet back. We got him in bed and he was ready to sleep. That 8 foot walk had made him break a sweat and he was out of breath. He did really well, but it's physically and mentally exhausting for Cain to get up and do anything. Even scooting in the bed is basically impossible for him without the help of Zouhair or two nurses. He is weak and tired and drugged up and in pain.

Cain has two chest tubes that come down into a Y and drain into one machine that measures the drainage. Since the tubes are the main cause of pain, the doctor thought it'd be a good idea for each individual tube to be drained into its own receptacle, so if one wasn't draining, it could be removed. Three nurses came in to change the way the tubes drained. This doesn't hurt as they're not really doing anything at the incision site, but even being extremely careful there was some level of pressure that was being applied to the incision site with the tugging to reroute the drainage. Cain was in a good bit of pain, but he handled it well. As of now they said they're both still draining, but not a lot. The chest tubes may be able to get removed tomorrow....both of them. They said that usually once the chest tubes are removed kids bounce back right away. We'll see.

I took a CPR class (which was required). I took one 10 years ago but CPR changes so frequently, they want to be sure the parents know what they're doing. I needed the class anyway, I couldn't remember what to do from 10 years ago, and back then I learned on a baby dummy. Cains no longer a baby, so I learned on the adult dummy this time. CPR is really hard, physically....and emotionally. You just sit in that room praying that you never have a need for it. The girl sitting next to me had an 11 day old daughter, the woman across from me had a 3 week old daughter, and the woman next to her was the grandmother of a 2 week old baby. On the way back to the room after the class the grandmother asked me about Cain. I told her he had aortic stenosis, and was diagnosed at 2 weeks. She told me her granddaughter had aortic stenosis and they'd just done the balloon valvuoplasty and it was leaking really bad. I told her that's how cain started out and that if they were talking about replacing the valve, not to be too scared. Yes, it will be hard, but you can live a long life on that new little valve. I told her if she needed to talk she knew where to find me, and that if her daughter wanted to see how big that little baby could get on that valve, she was more than welcome to come meet Cain. The woman started crying and grabbed me and hugged me. She said that it was destiny that she met me because they're just so scared about this process.

Zouhair brought Zayd up to see Cain today. I thought Zayd might be scared to see Cain but he's not. Cain is kind of in a mood today, which is to be expected. I think he just wants us to be quiet so he can rest. The last two days have been hard for him to rest and I think if he could have anything in the world right now, it'd be some sleep. Unfortunately the hospital is really the last place in the world you get to sleep. Hopefully he'll be home in a few days and we'll be able to keep it quiet so he can rest.

April 20, 2012

Update 14: Yesterday mid-afternoon they turned the pacemaker off so they could watch how his heart performed without it. As expected, the arrhythmia's are still present, but hopefully in time Cain's heart will get used to the new valve working and the arrhythmia's will stop. They had the pacemaker set to start if there was an emergency, but luckily it never needed to start working. First thing this morning the surgeon came in and said that Cain's tubes had stopped draining and they could come out. Around noon they came in to explain to Cain what was going to happen. They would cut the stitches that were holding in both the drainage tubes and the pacemaker wires. The doctor would apply pressure to his stomach where the tubes entered the skin and they would quickly pull them out, then tie the remaining stitches to close the hole. They gave Cain a large dose of both morphine and versed. He was very anxious about the procedure although they explained there would be some pressure and a bit of a pinching feeling. Although the procedure went quickly, it was very traumatic. Cain's nerves got the best of him and he was hyperventilating and very upset. No matter how many times you tell him to look at you and not what they're doing, he likes to watch. I understand wanting to know what's going on with you, but at the same time seeing it often makes it worse. There was a good amount of blood and it was very scary for him. Once the tubes were out, it took about 25 minutes for him to finally calm down. He held onto my hand the entire time - from just before the removal to the 25 minutes afterward. It made me feel good that he wanted to hold my hand, I felt for the first time that I actually may be comforting him. The doctor and the nurses have repeatedly told me "once the tubes come out he'll be a completely different person". Although I trust them, I highly doubted that Cain would go from miserable to "fine". After the tubes were out he had to have an echo and his vitals taken every 15 minutes for the first hour, every 30 minutes for the second hour, and then once an hour after that. He also had to have a chest x-ray. All of the tests looked really good, and at 6:00pm today, Cain was released from the hospital! As I mentioned, I was not convinced that Cain would be ready to go home. I found it hard to believe that he'd be ready to, when just 7 hours earlier he was miserable, however, I am here to report that Cain is doing GREAT! Not only did Cain go home today, he opted to walk out of the hospital instead of being wheeled out. He walked from his room all the way to the front of the hospital where Zouhair was waiting to pick him up. We are now home with a few prescriptions (very few, in fact), and Cain is laying in his bed watching TV. At 8:30 he was able to have his pain medicine, but he told me that he didn't need it and would like to wait until later. I am blown away at the strength that this 10 year old has. Just 5 days ago he was in surgery and in the ICU on a ventilator, and today he's walking and turning down pain medication. I am incredibly inspired by this young man, and I'm certain that no matter how many times I tell him just how proud of him that I am, he will never be able to fully grasp just how much I mean it.

April 21, 2012

Update 15: Cain's first night at home was ok. At around 9:30 he asked for his pain medicine. He fell asleep around 11:00, but was up about every 45 minutes. At 3:15am he asked for more pain medicine. He got up for the day around 7:00am and although he didn't sleep much last night, he's stayed up all day. He's done a good amount of walking today, mostly from bed to the bathroom as he's on lasix, a water pill used to release unneeded fluid/water from the body.

Upon leaving the hospital, the physical therapist suggested that we set up a bed in our living room as all of our bedrooms are upstairs and she felt as if Cain should wait a few days before attempting to go up the stairs. Our lower level has a bathroom, but not a shower, and since Cain has not had a proper shower since last Sunday, and the incision needs to be washed everyday, I asked him if he thought he'd be able to make it upstairs. He said he'd try. It took us a while, but he made it upstairs. He needed to sit down once we got there, as he was out of breath, so he took a break while I got things ready.

He was able to shower and I changed the bandages on the chest tube incisions. They look really good and seem to be healing well. There is very little fluid draining from them and with the bandage changing we were able to get the sticky tape patches off that were left all over his chest, stomach, and sides. After a bit of a rest upstairs we slowly made it back downstairs where Cain was able to lay in bed and rest. He said he felt so much better after the shower and felt like he'd be able to sleep good tonight. He's not needed his pain pills every 4 hours, but about every 5 to 6 hours he's asking for them. He's doing incredibly well and is trying to do more for himself than I feel comfortable with. He says its because he feels bad that I'm doing so much for him and have to get up every 2 seconds. I keep reassuring him that I want to help him so he can recover and this is what any mom would do and to never feel bad about it. He's such a sweet kid.

April 24, 2012

Update 16: Yesterday (Monday) was my first day back at work. Zouhair was home with the kids and everything was fine. Cain had been getting around over the weekend pretty well. He was able to make it upstairs for showering again. While changing the bandages over the tube incisions we could see that they were barely draining and healing well. He was eating ok and taking the pain medicine less often. I continued to sleep downstairs with Cain and each night he was waking up every few hours with stomach and/or chest pain. It was a long weekend.
 Around 1:30 yesterday Zouhair called me at work to tell me Cain had some type of a rash on his chest, neck, and stomach. He said they looked like little goosebumps, but were red and very itchy. Cain was miserable. I called the surgeons office and the nurse practitioner told me it may be a reaction to the tape, although I had removed the sticky leftovers from the iv's and heart monitor/EKG/Echo stickers on Saturday. She advised me to give him a dose of benadryl and that this should stop the itching. I arrived home around 5 and gave him the Benadryl. At 7:30 he asked if he could have more as he was just really itchy still. Obviously he couldn't have it that soon, so I took him to the kitchen to inspect the rash again. By this time it had turned into hives...big puffy patches of raised red bumps. I also noticed that at the top of his sternum, the large lump (it looks like a ping pong ball under his skin and is normal after open heart surgery) had turned red and was hot to the touch. He laid on the bed and I saw his nostrils begin to flare out when he was breathing. I got nervous and at 9:00 I called the heart center and they told me they'd page the on-call Dr. 58 minutes later I'd still not received a call back and when I tried calling again the answering service kept me on hold for 20 minutes. I just decided at that point to take him to the local hospital.

The hospital closest to me is about 3 miles away. Although they don't specialize in pediatrics or heart surgery for that matter, I was unconcerned about the function of his heart and more concerned with the reaction his skin was having and the possible infection at the incision. I figured they could handle this, however, when we got there the nurse advised us "he needs to be seen, but not here, they will take better care of him somewhere else". I was surprised, but then decided to drive to the children's hospital 45 minutes away....until we got on the interstate and Cain began to have trouble breathing and seemed to be losing consciousness in the car. I immediately took him to the closest hospital, which was the hospital he was born at. I signed him in and they took him right back. They got him on monitors, put in an IV, took chest x-rays, ran blood and urine tests and then the doctor told me she was nervous with his heart rate, blood pressure, and the arrhythmia's. I told her his numbers looked "normal" for him. She said the rash didn't look like a normal allergic reaction and she'd contacted the surgeon. He told her to have Cain transported to the children's hospital. Forty minutes later the Children's ambulance arrived and took Cain to be readmitted.

I followed behind and we arrived around 3am. Cain was given Benadryl and had more blood drawn and had an EKG. The doctor came in and told me everything looked normal, even the bulge in the sternum. Twenty minutes later the nurse asked me if the doctor talked to me about everything. I said yes, he told me everything was fine. She said, so did he tell you they may have to reopen the incision in the morning to inspect and clean it. I said, nooooo, he said everything looked normal. She told me that is not normal and it was concerning. They'd be running more tests. Person after person came in doing test after test. In the morning the surgeons assistant came in to remove the steri-strips over the incision and she couldn't believe that the skin was raised and red in the perfect shape of every strip of tape. He was apparently having a bad reaction to all types of adhesive. He's never had a reaction before, even when he had the heart cath a few weeks ago. The surgeon came in a few minutes later and said that although the lump on his sternum did look concerning, none of the bloodwork showed any sign of infection. He said the swelling is very normal and likely, the redness was just from the tape. He told me Cain could go home. Keep taking Benadryl and put on a topical cortisone cream. Around 2pm Cain was released and we headed home.

Upon returning home both Cain and I slept for several hours. Both he and I have not slept more than 2 to 3 hours a day for almost a week. He has been through so much this week, and I really could not be more happy with his progress. Obviously, the rash was something we'd rather not happen, but it is something that is manageable. I am owning that there will be no more problems from here on out. We have a checkup with the Cardiologist next week and we're anticipating that to go great!