So after being very confused about how Logan can be doing so great heart wise and yet still be blue and breathing heavy, I pushed Dr. Patel to do an echo sooner rather than later. For my own piece of mind I just couldn’t wait another 2 weeks. My biggest fear was that he had pulmonary vein stenosis once again. This is what caused us to have the last pop-up open heart surgery. unfortunately, if this does happen to Logan again we will most likely have to put him on the transplant list. I was A WRECK waiting for this echo. I mean really a complete nervous wreck.
Luckily Dr. Patel was able to squeeze us in fairly quickly. Once we got there the nurses immediately commented that he looked bluer (thank you this is what I have been saying – Mom’s know these things) and once his pulse ox was taken it became very apparent, his oxygen is now around 72-73 instead of 80.
(watching Elmo while getting his echo done)
Long story short Logan heart still looks good. There is NO pulmonary vein stenosis that is visible. His last sutureless repair on his pulmonary vein stenosis still looks excellent, his Glenn looks great, his valve is still holding up. The only thing is that he still has relatively small pulmonary arteries. So most likely because his pulmonary arteries are on the smaller side blood is finding alternative paths to travel down i.e. collaterals. Heterotaxy kids are known to have abnormal vasculature so this crazy collateral growth is more common in kids with heterotaxy. But keeping in mind the perspective that he could have had pulmonary vein stenosis, I was hugely relieved. I mean collaterals….come on, that’s just a cath fix.
So the plan right now is to do nothing until Logan’s PO (pulse ox or oxygen saturations) drops further he is going to need a cath to coil more collaterals off. This poor baby’s chest is just full of platinum (that is the metal used in coiling) his chest x-rays look really bizarre with over 25 metal coils in there right now. I can’t imagine what some doctor one day is going to think when they do a chest x-ray and they don’t know about him.
And then there was the G-Tube drama. I just can’t get over how something that is typically no biggie in 99% of population quickly becomes so complicated and life threatening to a child with heterotaxy. It was a one situation that clearly illustrates what Logan is going to have to struggle with for the rest of his life. So to begin with, the pediatrician (who by the way- should we win the award for best pediatrician EVER!!!) had set up a conference call between Dr. Patel (cardiologist), our GI doc, myself, and him to discuss the big picture plan for Logan and to go over different contingencies (this phone call was one of the most helpful things we have had during Logan’s care and with a whole post in-an-of-itself) but one of the unanimous decisions that was made was that Logan needs a G-tube put it to help him gain weight.
You would think that this would be a pretty straightforward and simple task to get accomplished. Well, not for a heterotaxy child. As it turns out his mixed up abdominal organs make placing a G-Tube much more risky. Because Logan has a small misplaced stomach and a hiatal hernia he is at a very high risk for aspirated milk into his lungs. Because Logan is asplenic and any major infection could kill him the last thing we want is milk sitting in his lungs and causing an infection. So to avoid this risk a fundiplication surgery would also have to be done.
Basically wrapping the top half of the stomach around the the bottom half of the esophagus.
*Excerpt taken from WebMD.com
How Well It Works
Studies show that laparoscopic fundoplication improves GERD symptoms in about 6 to 9 out of 10 people who have the surgery (depending on how experienced the surgeon is). But no studies have proven that laparoscopic fundoplication surgery is effective in maintaining healing of the esophagus over the long term.1
- A successful surgery does not guarantee that you will never have symptoms again. Some studies show that only about 1 out of 10 people who have fundoplication surgery done by an experienced surgeon have symptoms come back in the 2 years after surgery.2 But there isn’t much research on how many people have symptoms come back after more than 2 years.
- About 2 or 3 out of 10 people who have surgery to relieve GERD symptoms have new problems (such as difficulty swallowing, intestinal gas, or bloating) after the surgery.2 These new symptoms may or may not respond to treatment with medicines.
- Difficulty swallowing because the stomach is wrapped too high on the esophagus or is wrapped too tightly. This complication may be more likely to occur in people who receive fundoplication surgery using a laparoscopic surgical technique.4
- The esophagus sliding out of the wrapped portion of the stomach so that the valve (lower esophageal sphincter) is no longer supported.
- Heartburn that comes back.
- Bloating and discomfort from gas buildup because the person is not able to burp.
- Excess gas.
- Risks of anesthesia.
- Risks of major surgery (infection or bleeding).
All I can say to the above information is NO THANK YOU. Logan has enough problems as it is. And to do a surgical procedure for aspiration which may or may not even happen and potentially end up with a child who can’t swallow? Not to mention the fact that some studies are showing only a 60% success rate? And these risk are actually very minor in comparison to the major risk would be how Logan’s heart would handle such a large operation. So needless to say, Dr. Patel and I had a long talk about this and decided very quickly this is not the path we are ready to embark on. So after countless hours on the phone talking and discussing and go back and forth between the pediatric general surgeon, the GI doc, Dr. Patel, the pediatrician, and myself. We all settled on the fact that the once unanimous decision to have Logan get a G-Tube is now a resounding NO.
We are very lucky to have such an experienced and insightful pediatric general surgeon on our team. He was a surgeon at CS Mott’s in Ann Arbor MI (one of the nation’s top Pediatric Heart Centers) before coming to the Cleveland Clinic and has tremendous experience with him. He has experience with heteortaxy kids and has seen how quickly things can ‘get messy’ with them.
A little side note here on second opinons……GET THEM. This whole situation clearly illustrated the importance of finding a surgeon with actual experience with the type of illness you have. I have spoken with 2 general surgeons and 3 GI docs to get a team I felt comfortable with.
So after I had finally excepted that Logan was going to get a G-Tube I began picture him growing, and starting to sit up, and develop at a much increased pace and I started to get excited about the idea….until it was pulled out from under me.
As Logan is quickly approaching the one year mark, I have been particularly emotional. It is so much to take in, where we have been in this last year, and the road ahead as well. The other issue with his 1 year mark coming up, is that I have been avoiding calendars, timelines, charts, ect… in hopes of not having to worry about the comparison. The comparison to where he is and where the average child is. It is heartbreaking to see a baby almost a year old just start to have enough strength to hold his head up and for my own piece of mine I block out all the comparison charts and just accept him for him. With his birthday looming it pulls me out of my world and into The 1 Year Old World. The world of 1 year olds is crawling, walking, talking, waving, peek-a-boo, babbling, clapping, eating, sitting in a high chair, ect…. Logan can’t do any of those things. In terms of physical strength Logan is a 3 month old. This has been so tough on me that I have even considered canceling his B-Day party.
I have come around though and accepted that Logan is very special and been thru a lot and it would be a shame not celebrate his life, because even though he is very small and weak, he has fought battles larger than most of us fight in our life.
Logan’s birthday party is open to anyone in that would like to celebrate his life with us. If you are interested in coming on Logan B-Day Party which will be on Sunday June 5 please leave a comment with your email address and I will give you the details. I look forward to meeting some of my fellow heart Mom friends that I only know thru words.