Caden’s Page

Caden is doing much better today. We got out first full blown smile out of him this morning since the surgery. Right now Riley and Caden are sitting up in the bed watching Veggie Tales. We think that we will be up here until Monday based on early estimates of when Caden will be discharged.

Caden was transferred to 7C this afternoon at about 2:30 PM. It took a little longer than we thought because they had to remove his chest drain tube and arterial line before leaving the ICU. By the way, Caden did not have a central line while in the ICU. It was an arterial line which is basically an IV but it is in an artery rather than in a vein. Either way, that is a pretty serious stick. I believe that Caden has finally seen his last dose of Morphine. They gave him a small dose to get him through the removal of the chest drain. That tube is about the same diameter of a pencil and was inserted into the chest during the surgery to allow for drainage until things start to heal a little.

Thanks again for all the emails and kind words.

Please check out my Happy Anniversary message to Sherry.

Caden is off the ventilator. He was taken off earlier this morning. He went through a little spell after that where he had a hard time breathing. A chest x-ray showed a little bit of fluid/mucus in his left lung. Then did some deep suctioning, rolled him on his right side, and that seems to have cleared things up. The breathing issues have the doctors a little apprehensive about transferring him right away. There is still a good chance we will make it to 7C this evening. If not, then I am certain it will moving to a room first thing tomorrow morning.

We got a surprise visit from one of my fellow tech-team members from church today. It was a nice surprise and we greatly appreciate it when folks check in on us or drop us a note via email. Your prayers are felt and God will be glorified through this situation.

Please keep up the prayers especially for Caden’s comfort. He is getting pain medication, and he is sleeping a bunch. He still has some uncomfortable moments.

Thank you for keeping check on Caden.

Caden is still on the ventilator this morning. They tried weening him off last night, but they had to come back up on the rate because blood tests and observations of Caden showed that he was not picking up breathing on his own as the machine was being turned down. This is mostly because he is still coming down off the medications. They have given him a little pain medication through the night to help him rest. He looks great and has been playing with me a little this morning with his feet. His little arms are restrained to keep him from pulling on the ventilator tube and chest drain.

We thank God for His protection over Caden through these procedures. We give Him all the glory for the success in Caden’s health. Please continue to pray with us for a fast and smooth transition off of these medications. Pray for his continued comfort and rest. Caden got three separate incisions and we pray for rapid healing of those areas.

Caden is stable. He is still on the ventilator and will probably remain on it until tomorrow morning. He is coming off of the anesthesia medications VERY slowly but smoothly. We were told that Caden took an impressive amount of anesthesia medication during the surgeries. They said that he kept “eating medication” while under anesthesia . Caden’s nurse said to expect him to transition out of the ICU pretty quickly once he gets out of la-la land and is extubated (taken off the ventilator). We expect and pray that he will in his own room by tomorrow evening.

Caden has woke up a few times, but he has gone right back to sleep. He still has two IV lines, a central line, and one chest drain tube in addition to the ventilator and the normal ICU telemetry. I will keep you posted as things progress. Thank you for your prayers.

We just met with the surgeon. Caden is doing good. All of the surgical procedures went well. Caden has just been transferred from the operating room to the PCICU. We have not seen Caden yet as they are still getting him settled into the ICU.

I will post an update again later this evening.

Caden did not go into surgery until about 2:00 PM. We think the surgeon’s morning case ran a little long. We are waiting in the PCICU waiting room. We did decided to go forward with the artery/esophagus procedure. The doctors and the surgeon did not seem suprprised by our decision. They were actually well prepared for this decsion. The heart surgeon and ENT doctor spoke last night about Caden’s case. We even got a suprised visit from Caden’s ENT when we arrived today. He wanted to take a quick look at things and ask us if we also wanted to get Caden’s right ear tube put back in. Caden lost the right ear tube shortly after getting it installed back in January. The heart surgeon’s nurse practitioner said that this is a first. She has never seen a kid get ear tubes in during a heart procedure. We are grateful that it can be done without another visit.

We expect for the entire surgical process to take between three and four hours. I will post another update once Caden is out of surgery.

The new PCICU waiting room is way cool. It is dedicated to pediatric ICU cases over here in the adult hospital at MUSC. The last two times Caden was in the PCICU (the only children’s unit in the adult hospital that I am aware of) we had to wait in the area that served all the adult ICU patients and families. That waiting area got scary late at night on a couple of occasions when vicitims of shootings and stabbings start rolling in late at night. This new waiting room also has two computers so I can do updates pretty easily. Oops…spoke too soon. The waiting room monitor guy just came to tell me that the computer room will be closed down at 4PM and will not open back up at 9PM. It looks like future updates this evening will come from my trusty little Treo 650.

Yesterday was another whirlwind of a day! We got all the pre-op stuff done yesterday and it was a lot more than we expected. Caden was home last night and will be going into surgery this morning to get a pacemaker implanted. We will arrive at 10am with the surgery starting at noon. It should last about 3 hours and they suspect he’ll go to the PCICU for recovery.

We have wrestled all afternoon and night with a BIG decision to make. The heart surgeon is leaving the decision on whether to go forward with the artery up to Sherry and I at this point and it is a VERY tough decision. This procedure would re-rout or clamp off his left subclavical artery away from his esophagus (since he will already be under anesthesia and he’s the one who would work on it). If you remember we found out about this back in January. Here’s the link to that post and there is even a photo of his throat.

We have been told there is a 50-50 chance of the artery procedure helping Caden’s swallowing. Other than this procedure, ENT is at a “wait and see” spot not knowing where to go from here in regards to swallowing. There are a few slight risks to the procedure (less than 1%) and the heart surgeon has performed the procedure before though never for swallowing. It would mean that Caden would get another incision, in addition to the two incisions for the pacemaker, and that it is pretty painful (it’s called a thoracotamy spelling? under his left arm). The doctors say, it also means a little longer hospital stay. We have talked to 4 doctors and they all come back with an undecided response and have even said they could argue the case from either side. We have sought Christian council, even medical, and are praying for God’s will be shown to us and that we’ll know His will with peace that passes understanding. Please pray for us this morning if at all possible. We have talked and prayed together some more tonight and tomorrow. We have not made the final decision yet.

Thank you for your prayers.

Hank and Sherry

The subject tells the story for the most part. Caden will be admitted into the hospital tomorrow morning 6/14/06 in order to receive a pacemaker on Thursday. We received a call from Caden’s cardiologist last week and got stunned by his recommendation for Caden to get an internal artificial pacemaker implanted due to heart blocks detected on the last halter monitor. You may remember that Caden experienced third degree (total) heart block back in March which even required a few chest compressions to keep blood flowing. The sequence of events following that episode landed him in the PCICU for a few days. Caden was discharged after those heart blocks because the cardiologists thought the heart blocks were going away due to the steroids they had administered during the ICU visit. A halter monitor (mobile telemetry device) that was sent to us in the mail the week after Caden’s March ICU discharge confirmed that the heart block were still there but less severe. Caden then went in for a cardiology clinic visit at the beginning of May. Sherry and Caden left that visit with another halter monitor just to make sure the heart blocks were gone for good as expected. The new halter monitor in May was still detecting some second-degree heart blocks. This prompted the cardiologists to recommend that Caden get a pacemaker. We had a problem with understanding the recommendation from the initial phone call last week so we made an appointment to speak with the cardiologist in person. We knew that Caden had been discharged over 12 weeks ago after having a third-degree heart blocks in the hospital. What could possibly warrant a recommendation for him to get a pacemaker if he was having any heart block of a lesser degree? We decided that we need to sit down with the cardiologist to get a better understanding before we sign away for another invasive and potentially life changing procedure. They expected the heart blocks to have completed disappeared within a couple of weeks after the March discharge from the hospital. The fact that they were still around six weeks later was reason enough for them to recommend the pacemaker. The fact that they were the more serious form of second-degree heart block was even more concerning to them.

The conversation with the cardiologist last Thursday still did not convince us to jump right on board with their recommendation. We struggled with the decision to put Caden through another surgery that would be done strictly for precautionary reasons. This pacing device may never have to function if Caden never has another heat block. We struggled with the comments by the cardiologist that seemed filled with fear. The cardiologist’s only real reason for the pacemaker is to have it there just in case Caden were to ever have a heart block that he did not recover from on his own. The cardiologist’s term for what might happen to a patient with heart blocks that they don’t recover from is called sudden cardiac death.

We have been so strong in our faith for healing of Caden. We realize that we can still pray and believe for healing and have faith for it. While we wait for it to manifest, we are going to use the treatments and medicines available to get us through the symptoms.

Going into this we also wanted to make sure that the cardiologists were stepping back and looking at the big picture concerning Caden’s heart. Caden’s VERY unique anatomy around his heart has raised questions related to swallowing. Caden is 19 months old and still gets 100% of his food through a g-tube (feeding tube). He went in for a swallow study just over a week ago and showed no major improvement in swallowing functionality compared to the last swallow study. We have been told that his left subclavical artery is protruding in on the esophagus based on previous findings from the heart surgeon and the ENT doctor who EGD scoped Caden a few months back. It seems that there is some research on the effects that the protruding artery may or may not be having on Caden’s swallowing functionality. We may not know for sure until they try. The other heart issue is the outstanding diagnosis of a bicuspid aortic valve however the cardiologist does not feel like the valve should be repaired at this time. Our stance in these talks over the pacemaker were that we did not want Caden to be operated on more times than necessary. Could some of these other things be repaired at the same time if he was going to be under anesthesia and in the room with all the same doctors who would have to be there for any of the other heart repairs? We are still not absolutely sure if the pacemaker will be the only thing done on Thursday. The cardiologists wanted Caden on the schedule for this pacemaker as soon as possible and are currently discussing the artery/swallowing issues to determine if they will want to do any other repairs at the same time. One very convincing reason we are going forward with the pacemaker right away is because multiple cardiologists are in agreement that it needs to be done sooner than later. They were concerned enough to postpone at least on other procedure to get Caden a surgery slot this week.

Sherry and I agreed on moving forward with the pacemaker after much prayer. We spent an hour and a half of phone calls between us and MUSC’s pediatric cardiology, cardio-thoracic surgery, and ENT. We feel comfortable with the decision and are certain that this is in Caden’s best interest. We are at peace with it after a week of praying and consulting with Godly counsel.

Please keep Caden in your prayers over the next couple of days. Please pray for Sherry and I to have the discernment during our interactions with doctors and other medical professionals caring for Caden this week. Please pray for big brother Riley to understand and feel at easy with his baby brother being in the hospital yet again. The bond between these boys is such a blessing to observe as a parent.

Thank you for your prayer and support. May God bless you and your family.

Mommy’s Boys

We were on our way home after our first trip to the beach this year. Our primary goal was to get some family pictures taken. Caden is now 18 months and Riley is 3 1/2 years old. Sherry and I agreed when Riley was born that we would get pictures taken every three months during our children’s first year and every six months for the next year. Caden being 18 months made it time to get pictures taken.

We made a day of it at the beach today and it was fun. We packed a lunch. Caden and Riley had a blast. Sherry and I enjoyed watching them play. I forgot to put sun block on, and I am feeling the effects right now. I thing my nose is on its third shade of red for the evening.

It is hard to believe we have come as far in a year. Last year on Mother’s Day we had a baby dedication for Caden. We were looking at a big surgery to fix the massive reflux that Caden was experiencing. Life was much more difficult and we didn’t get much sleep. Now we are able sleep through the night without worry and able to spend the entire afternoon on the beach without the suction machine. PRAISE GOD!!!

We even made it through our trip today without the feeding pump. That was was not planned. We got in a rush and left the house without the pump and jug of prepared formula. That’s OK because we were good little scouts and improvised. It was our own little version of Osborne Survivor at the Ilse of Palms beach today. Fortunately we always carry spare formula powder in the van along with some bottled water and a few extra 60ml syringes. We even keep and extra feeding tube in the glove box. We were able to gravity feed Caden through his feeding tube using a syringe. This allowed us to continue with our day at the beach.

We ended the day grilling some burgers back at home. This was the start of a special weekend to honor the Mommy of the house. Sherry is the heartbeat of this house. She is the best Mom in the world and my best friend.

Happy Mother’s Day to those moms dearest to me: my beautiful wife Sherry, my mom Priscilla, my mother-in-law Darla, and my sister Becke!!!

Bonus pictures from our beach trip today.