Last week we got a confirmation that we will be having Cameron aka Baby Mogg’s third open heart surgery called the Fontan on Thursday, August 21st 2014. This is the scheduled surgery date as long as there are no emergency cases for the office and pre-Op will be the day before on the 20th. Many ask ‘Is this the last surgery?’ & ‘Does it fix his heart?’ but the answers are not that simple… Yes the Fontan is the 3rd and final scheduled heart surgery in a series of staged reconstruction of the heart so a child with HLHS can live. No there is no current cure or way to fix HLHS our options are a series of operations (The Norwood, Glenn and Fontan). or transplant. We HOPE the surgeries give us Cam for as long as possible, BUT with any surgery and/or heart condition if there are complications now or later down the road it could lead to more surgeries. And well anything can happen… it’s all up to God, Cam and these incredible Doctors, Surgeons and Nurses. Prayers are welcomed!
One of the biggest concerns is how long will a HLHS heart last after the reconstruction. The reconfiguration causes the right ventricle to do double the work pumping for the absence of the left ventricle. Sometimes they can make it to adulthood and may need a heart transplant down the road. Adult heart donors are more available and matchable then children or even baby heart donors which is one of the reasons to choose these series of surgeries for HLHS. Another concern we have in Cam’s case is pleural effusions because we had them after his last heart surgery the Glenn. I have heard if you have them after the Glenn you are likely but not certain to have them after the Fontan surgery. Also, since the child is bigger the pleural effusions can come in larger amounts of fluid drainage so I have been warned to expect some complications. Cam may need chest tubes which is considered surgery to place them. Sometimes the pleural effusions can take months for the body to handle and recover from but it’s all up to his body and each case is different. I have heard the actual heart surgery recovery time is weeks and these kids are quick to recover. We will be required to limit or avoid our visitation and/or activities to public places after the surgery due to his immune system being compromised and at such a vulnerable level, which is sad because he has become such a social butterfly. He always wants to go find some friends to have a play day it’s super sweet.
Another common question is ‘Why 3 surgeries?’ and there is a long medical and professional reason (Search HLHS) but my go to answer is the baby’s body needs time to develop enough to handle the reconstruction. We are lucky enough to have Cam during a time when the research and development of these surgeries are available. There is more information available on HLHS and learning more on the subject creates awareness meaning our goal is being reached as a CHD family. Hopefully awareness sets the stage for more research and development for future families.
The following portion of this post is all about the previous hospital visit for the Catheterization on July 8th just so we have a complete journal entry.
The Cath was a sedated testing which required us to stop all food and fluids the night before July 8th. Cam sometimes has a late night or early morning milk cup (pediasure) which is a bad habit Mommy has had a hard time breaking. I feel the pediasure is what is keeping Cam’s weight on for now and seeing as weight is important for this surgery I am waiting to end that habit along with other eating issues. Anyway we stayed up late so that the 6am trip to the hospital and the waiting wouldn’t be about getting the next milk cup. We checked in did the weight, height, blood pressure and o2 sats. Waited again in a shared room with many distractions iPad and new toys. Cam did very good up until the blood sampling which was understandably upsetting. It seemed like a forever wait avoiding the hunger subject since he couldn’t eat and luckily he only asked a few times right before they were ready to take us down stairs. They put scented lip gloss in the face mask and gave him a practice one which I think makes it easier on the expectations. Cam was given the silly juice and they took us down to the surgery hallway which broke me. I was devastated and heart broken to see Cam go down that hallway again… All of my emotions were screaming I wanted to go with him to help him through this in any way just to hold his hand. Most difficult to explain but trying my best…
They completed a Cath and other testing, the process took about 2 hours total. Nick and I were taken back to the recovery to see Cam coming around waking up since they had him sedated and intubated for the Cath surgery. He was much more calm then I ever expected but I could still see he was upset and uncomfortable. Cam was laying down as they require him to lay flat and still for a few hours after the Cath. He had a entry in his neck and leg as well as a iv line in his arm. Sadly we had to wait until he took some juice so we could move from recovery back to a room upstairs. However, Cam was a tough and strong man doing just fine with his juice although he asked for water poor dear! We went upstairs back to the shared room and had to remain there until later that afternoon to be released as well as required to keep Cam’s leg flat for some time. Cam was groggy and tired we just laid with him trying to get a movie on to keep his attention until we could leave. Cam was truly a brave little warrior at this age handling such a difficult day, we are truly proud!
Now the aftercare was simple bandaid changes but that was the toughest part with this event. Cam did not like me to change the Bandaids and would get extremely upset at the mention or action of touching them. I think they irritated his skin and peeling them off was intense with him that upset. Cam would keep his neck straight and was very aware of the Bandaid lightly touching it checking it. He would tell me ‘be easy with me’ as I put him in and out the car and even at home just picking him up ‘be easy with me’ no danger dude which is what I call him when he’s wild. We took it easy after we were home they said no parks for 3 days and Cam was back to himself in no time.
They suggested after the testing Cam was a good candidate for the next surgery but the Surgeons would need to review it the following week which is why I waited to post. I was aware there was an expected level of development, weight and age for this surgery and with the Cath testing they were checking his pressures to see if he was ready for the Fontan. If the pressure was off medication could be required to correct it before any possibility of surgery. Also, they require the kids have no cavities to be eligible for this surgery due to possible infections. Sometimes they could need to have multiple Caths to ensure they are ready for the next surgery so we were fortunate to have reached this point. Now the plan is set for Cam to have the Fontan on Thursday, August 21st. We will post here on the Baby Mogg website when available keeping all our family and friends as up to date as possible. Thank you as always for the continued support and prayers much of it will be needed and appreciated with the upcoming surgery.