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!)

4 thoughts on “Confused.”

  1. That would be confusing to me too if he never ate/drank much and then gained weight.I hope its not fluid gain!!
    He does look a little bluer to me too.You have such a lot on your plate.Hoping for good answers for you.

  2. I know fist hand how frusterating the eating problems are, and how unsure one can feel. My son Luca had heterotaxy. You are not doing anything wrong! You are doing everything right,
    If it weren’t for your patiences and strength you wouldn’t be doing as well as you are. Trust yourself! I think it is amazing that Logan is about to celebrate his first birthday! Happy almost birthday Logan!! You remind me that miracle do exist!! I wish you many many more!!

  3. Hi Kristen,

    You are such a great Mom and working so hard to help Logan. It seems the early years have so many discouraging moments. I remember them well.I remember when Tess was 6 months just finished up with her second heart surgery , we went home and were so grateful to be home. She then developed RSV (vaccine was just emerging) and we spent another month in the hospital. It was such a roller coaster. Sounds like something is missing from the big picture here so I would urge you to have the cardiologist investigate further. A baby who feels well will begin to eat, trust your instincts. As for the developmental work, I will fly out there and treat him myself when he feels a little better. I am a pediatric PT and treated Tess during her surgical years and I also developed a course for parents /clinicians on developemental treatment for the child with cardiac disease. Also if you have to go back to Boston I just wanted to make sure you are aware of Angel flight, private airplanes that will transport sick children to the hospital. You seem to have a lot of knowledge but wanted to make sure you knew that in the event you have to head back to Boston. Tess spent about 6 months with O2 sats around 65-70 before her final stage of the Fontan, it hasn’t affected her overall outcome. I will be thinking of you and your family and am willing to help in any way.

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