Second Opinions.

 

So Wed. we got up bright and early and left the house at 7AM, sat thru over an hour of rush hour traffic, and made our way to the Cleveland Clinic to get our second opinion from their GI Dr’s.  I was pretty irritated by the time we got there because traffic was so bad but I was instantly put in a better mood when I saw that the Cleveland Clinic has valet parking.  I love valet parking. 

 

Even though Logan is barely three months old going over his medical history took over an hour.  Poor little guy.  This GI Dr. told us that they have two other kids with Heterotaxy and so they are pretty familiar with this condition.  That really relieved me because there is nothing that is more off-putting then hearing Dr.’s say that they have never seen this before.  We had one ER Dr. (a while back) come in and ask us if we knew that our child had Heliotaxy.  That didn’t inspire much confidence.  Anyway, they were very familiar with the associated GI problems and want to redo the upper GI tests and get some blood work on his liver because there is a small chance of a liver problem but most likely it would have shown clinical signs by now.  They did tell us that if he is malrotated that he will need the Ladd’s procedure on his intestines, they said that was standard. 

Logan had another good week without any major crying spells.  Well, other than he cried thru the night before we went to the Clinic. He was awake more this week and cooing and talking a lot.  He seems more interested in watching new things and looking at toys now.  Here is a picture of Logan with his Great Grandma (the one who says that he is growing a spleen right now).

He really likes his Great Grandma….

Most of the time….

Thurs. he had another cardiologist appointment.  His oxygen is still in the low 80’s which is very good.  He had an echo done and everything looked OK except for his A/V Valve is now regurgitating moderately instead of mildly.  Apparently this is not good and it may or may not be able to be fixed by the surgeon when he is in there doing the Glenn procedure.  If blood is leaking down then the whole pumping system isn’t working strong and it needs to if he is to get the Fontan procedure that will ultimately allow him to live.  The cardiologist said that it is common with these kids to have this problem and it will just be another hurdle for him.  I don’t want hurdles, I just want valet parking please. 

He upped his beta blocker medication and said he is hoping that buys us another 3 to 4 weeks before anything has to be done. 

He wants to see us back next week to get a pulse ox reading (just a little band-aid looking thing they wrap around his foot that tells them what his oxygen saturation is) and do an exam. 

Asleep.

6 thoughts on “Second Opinions.”

  1. I hate Cleveland traffic and the Clinic charges too much for parking.

    I have a question [or 2] for you. If Logan can’t have the Fontan because of the valve regurg, what other remedy is there? Will you have no choice but to go with a transplant?

    Love to see the pics with Daddy, but doesn’t Mom ever get a chance to hold him and have a blogable pic or 2 taken? 😉

    1. Ha, I just realized that I can replay to these comments. I am not sure about the valve thing. So far I have been told they can fix it. They can replace it even I guess. I will try to get some pictures of myself. 🙂

  2. Good for you Kristin! Second opinions are necessary in most cases these days; You have to do what’s in the best interest of that baby!

  3. Glad that you got that second opinion and praying that the test results all come back ok. Saying extra prayers for his valve leaking to get better. I know how stressful that can be.

  4. Hey Kristen. I’m sure you probably have more than enough people giving you advice, etc. but I just wanted you to know if you have any questions at all, please feel free to ask me. I have been exactly where you are with my daughter. She had her LADD done at 8 weeks. Her 1st heart surgery was at just under 4 mos old (Glenn and TAPVR repair) and she rocked right through both. I have been dealing with GI issues for a year now. C has had every.singe.test done and she still refuses to eat and vomits a lot. I have seen 5 different GI doctors. She is finally looking great and gaining weight with her g tube. Again, I know you have probably heard this from a million people, but I do understand where you are and your frustration.

  5. my lil boy Jayden has heterotaxy syndrom polyspleenia he just hAd his heart surgery aug 12. He is onley 10 months but he is the sweetest little boy.I see we are going thru alot of the same things.We live in Las vegas they have great Doctors here.I am only 21 and a single mom so I go thru all the appts by my self but I am a very strong mother.If you want to email me its jlkellerman@aol.com im sure there are lots of things would could relate to and could talk about.

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