Not Great.

We didn’t have the greatest week with Logan.  He is really suffering from some unexplainable GI issues.  He has episodes that last from 2-6 hours where he is just inconsolable and really uncomfortable.  It usually starts after he eats.  Somehow eating is just not a comfortable process for him.  It seems to be getting progressively worse.  We had that one episode and took him to the ER several weeks ago, but now it seems it is happening more frequently.  I am going to try to get him into a GI Dr. on Monday.  My gut feeling (pardon the pun) is that somewhere in his intestines milk gets backed up, so his stomach empties and he is hungry and eats but then it has nowhere to go because there is still milk in his intestines and so then, he vomits.  Secondarily, when he cries he starts sweating profusely and this week, which by the way is very scary, he started turning cold and shivering WHILE sweating and crying (I know, that really doesn’t make sense and his cardiologist tried to explain it to me but I really don’t get it.)  His little legs, that are kicking frantically, turn more blue than ever now, and I believe that getting that worked up is uncomfortable for him so he gets even more worked up because he is worked up, and then somehow, something breaks and we get him to calm down and he usually then sleeps for A LONG time.  It was a pretty rough week on me emotionally because I just can’t get out of my mind that if Logan has to have a short life (which is very real possibility for us) I just wish it could be more comfortable day-to-day.  It just breaks my heart to see him that miserable.  THANKFULLY, I have the most patient cardiologist (Dr. Patel) in the world and he lets me call him and ask him a million questions.  And I mean that literally, I think I have asked him one million questions.   And also THANKFULLY, I  have a retired Father and a Grandmother who can come over whenever I need them. 

My Grandmother who is in her 90’s is absolutely convinced that Logan is having these problems because I eat too many salads and no amount of medical evidence is going to prove her wrong.  If I just eat more soup that’s what will fix Logan’s problems (however, the soup can’t have any cabbage in it).  

If only it were that simple. 

Oh, and, by the way, according to her he is growing a spleen as we speak.  (Hu ???) I have no comment on that, other than I certainly hope he is also going to grow a vascular structure as well to support it.  Nothing worse than a spontaneous floating spleen growth.

 Scott has had to travel a lot lately (M-F for the last three weeks), and being all alone with a teething toddler and Logan is quite exhausting and emotionally draining, especially since during the night Logan is still feeding every two hours.  I feel like if I could just get one good night sleep I could deal with EVERYTHING so much better. 

Logan had an appointment at the Heart Center on Thurs. he had another echocardiogram done.  He screamed and threw up during his echo which made it really fun.  To be honest the whole appointment was kind of blur because I was really exhausted and Logan was really fussy and I spent much of the time just trying to calm him down.  Dr. Patel wants to start him on a Beta Blocker, Atenolol in hopes to buy us some time before his first OHS (at least another month and hopefully two or three.)  He talked this week about a BD shunt, which I am sure is what he was talking about last week and I miss understood BT for BD but regardless they are different so here is a link to a BD Glenn shunt. Its a risky procedure for Logan because of his Heterotaxy and his age.  We have to now start looking into our insurance and figuring out where he is going to have surgery.  If our insurance lets us we will probably go to the Children’s Hosp. in Ann Arbor, MI

Here is also a couple of really cute pictures of Logan that my Mother-in-law took of him last week that I can’t resist posting. 

5 thoughts on “Not Great.”

  1. we will be praying for little Logan. I sure hope he feels better soon. I know it’s hard to see our kids like that, or any kids for that matter. They are going to do Lindsey’s surgery to correct her intestines and take her appendix out, the surgeon was talking about maybe taking her stomach and wrapping it around her esophagus to make sure all her food goes into her stomach. But we will be praying for Logan.

  2. Kristen, I am sorry to hear that things have been so rough for you and Logan lately. Have you been in touch with the folks in MI yet? They may have a whole different plan for Logan that will help him sooner. Maybe it’s time to get them involved in his care. I’m glad you have some backup [dad] and comic relief [grandma] nearby. You know how to get in touch if you need to.

  3. He’s adorable! Kristin, you should be so proud of yourself–this isn’t easy and although you don’t see it now, you will someday see how strong you really are to have gotten through these challenging times! Hang in there!

  4. Kristin,

    You are sure dealing with a lot right now. I hope you were able to get some sleep this weekend. I can’t imagine all that you are going through, but a good night’s sleep will help.

    BTW: Grow spleen…grow! I think that is a wonderful thought and even though it is not probable…I will pray for that too 🙂 You never know…Hope only had one kidney for the longest time and all of a sudden they found the other one…it is small and in the wrong place, but it is there!

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