Month: May 2011

Long overdue update.

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. 

(fundiplication illustrated)

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.

Risks

Risks or complications following fundoplication surgery include:

  • 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.

Happy Mother’s Day.

We had a crazy emotional up and down insane week with Logan. 

So emotional I haven’t even had the energy to write about it here.

Maybe tomorrow. 

But I wanted to wish everyone a

Happy Mother’s Day

especially to my fellow heart Moms and other Mom’s of special needs kids because it is a bumpier road and a much trying path we travel as Mom’s.  I also want to thank my heart Mom friends for their unbelievable amount of support they have giving me this year. 

I know I have said it before but TRULY I don’t know how I would go on without you!!!

Love you all so much.

Confused.

 

So we met with the second GI on Tues. and without boring you with the details I feel much more comfortable with the GI doctor at the Cleveland Clinic.  He sees two other Heterotaxy patients and he is interested in kids with congenital heart disease.

I was concentrating so hard to take one of those phone camera pictures I ended up looking angry and I think I was squashing Logan! LOL But that is us waiting in at the GI docs office.

I am also very confused because the last week Logan has eaten very little.  I don’t understand why he all the sudden won’t eat.  After a couple of days of putting the Duocal in his formula he figured out there was something in his formula and decided that he was even going to drink much.  (picture me throwing my hands up in the air right now!)

(he is going to be a thumb sucker!)

So you can imagine my complete and utter shock when I called a weight gain in to his GI doc and he was happy with the GAIN??? What??? How could he have gained.  So when the new pediatrician called to check up on him I explained that I was shocked to see Logan gain weight because of how little he was eating.  His first inclination was that Logan may be retaining fluid and he called Dr. Patel to speak with him about it. 

Another thing that is very confusing to me, is that Logan has looked bluer to me ALL week.  His color just doesn’t look good.  I had the pulse ox machine on him yesterday while he was sleeping and it said he was 74-77.  Why is it down? I don’t understand.  He is still breathing heavy, now he looks bluer, and he won’t eat.  I am very frustrated. 

You can’t really appreciate his color unless he next to someone else.  So I put my hand in this picture to show you the color difference between me and him.  Right after his last surgery his color looked really good.  I don’t understand what is happening, is this collaterals again? Here is another picture of him laying besides his brother, just to illustrate the color difference.

(Smiling in his sleep!)

I also, have been thinking a lot about his first birthday (which will be on June 6th) Instead of being happy about this milestone I am sad.  I am sad for Logan.  I am sad that at almost 1 year Logan can barely hold his head up, can’t sit up, can’t roll over, doesn’t wave, barely babbles, doesn’t play peek-a-boo.  He has been thru so much in the last year and I just thought we would be further along than this.  Instead of moving forward I feel like we are stuck.  Stuck with this low weight, stuck with heavy breathing, stuck with a low PO (Pulse Ox number), and stuck with developmental delays.  I am so frustrated and confused.  And can’t help but think, am I doing something wrong?

His rectal problems have subsided that is the only good news of the last week.  Prolapse is gone and he has had no bleeding all week.

(Big brother Ethan on Easter!)