I have no idea what the title of this post should be!

I have been avoiding updating on here and I am not exactly even sure why.  Everything is so up and down and all over the place that it never seems like a good time to update.  I tell myself that I will update once a decision is made, or we have a better plan.  But maybe this is it.  Maybe things are always going to be up and down, maybe plans our going to always change.  That is a very hard concept for me to accept but I am working very hard at trying to be present vs.  constantly worrying about the future. 

Logan’s sats continually seem to be all over the place.  After his sats being being low 70’s and having the fontan discussion, we had a cardiology appointment last week and his sats were 87.  I talked with Dr. Del Nido on the phone (seriously this man is an angel) and he said that he does not want to do the fontan this fall unless his sats are really low or his valve is giving out.  He said recovery would be a very very long time (I imagine in my mind that this means months).  So this is terrific news.  I am waiting for Dr. Del Nido and Dr. Patel to officially have a conversation about this, but it is now looking like we can wait until the spring for the Fontan.  I am very excited about that news!!!

His last echo showed that his pulmonary artery is still very small.  This means that before he has a fontan they will need to do a cardiac cath to determine if his PA will even allow the extra blood flow that it would be getting after the connect the SVC directly to the PA.  So not being a canidate for a fontan is still a very real possibility for Logan.  I was looking up the statistics and many papers were reporting that only 25% of RAI (right atrial isomerism) babies are canidates for the fontan after the glenn surgery.  Not great statistics but Logan does have a few things in his favor right now.  Fairly good sats, no AV valve regurgitation, and no reoccurrence of PVS (pulmonary vein stenosis).  But his biggest obstacle is going to be his small PA.  I am trying very hard not to think about life if we can’t get the fontan…..I am imagining that this would mean transplant much sooner. 

Logan has been in a great mood for the past few weeks.  Even at his last cardiology exam everyone exclaimed that this was the happiest he has ever been! 

For the first time in his life he didn’t scream bloody murder when putting on and taking off the EKG leads….

He just played!!! He is obsessed with these little foam letters and numbers from Alex Jr.  They stick to the side of the bathtub when wet.  He loves them and even falls aspleep grasping them. 

He has been interested in things and has started letting other people hold him.  He still spends the majority of the day sitting in his swing but he wants to do more now.  Oh, and he officially has rolled onto his stomach all by himself.  Not a full roll yet but we are getting there.  He is now 14 months.  He weighs about 16 pounds and finally is in 6-9 month and some 6-12 month clothes fit him. 

I was shocked that he let me put him in this swing.  Typically that would be waaaay too much stimulation for him, but on this day, he loved it.  Because he can’t sit up on his own I had to stuff his blanket in there to prop him up, but he really really liked that baby swing that day!

He is still on his feeding strike.  Occasionally, we can get him to take 2-4 bites of chocolate pudding or something else irresistible but then he is done.  He wants nothing to do with food.  Nothing. Because of his very abnormal organ arrangement feeding tube placement was deemed too risky by his general surgeon.  So right now it just is what it is….

We did have a bit of a scare this past weekend.  Logan started vomiting on Fri.  and then for the first time I had ever seen he vomited up what appeared to me to be bile.  It was bright almost flouresent yellow.  I got very nervous and called his pediatrician.  Between calling the his ped, his ped card, and the on-call general surgeon they all agreed that it would be safer to have him checked out at the ER.  BIG UGH here becuase, although I have a tremendous appreciation for everything that has been medically done for Logan, the ER has never been a very good place for him to be.  The ER tends to be a place where none of the doctors know anything about him and they tend to love doing intervention after intervention in there. 

(Waiting in the X-ray room.  He always scrunches his legs like that when he is scared. )

(Labs that I was refusing…)

After the x-ray they determined that Logan didn’t have an intestinal blockage but they still wanted to do labs.  I didn’t understand why?  We were there to see if he had an intestinal blockage, once that was ruled out we should be able to go home.  I asked the attending why he would want to do labs now and he looked at me and said….’well, we always order labs.’

Ummm…I need a much more compelling argument than that.  Getting vials of blood from Logan is about as traumatic of an experience that you can have.  His veins are tiny and fragile, and it is very hard to get very much blood from him.  To fill up a bunch of those vials would take hours, probably 15+ pokes, sometimes ultrasound machines, and usually only the pediatric intensive care nurses or the ambulance transport team can even ever get a vein. 

Anyway, we ended up having to just refuse them.  They told me they wanted to check and see if Logan’s electrolytes were off.  REALLY??? He has been throwing up since Fri.!!! I can tell you his electrolytes ARE off.  Well, we want to know exactly how off (they said) my response was, his eyes and his Fontanelle aren’t sunken, and he just had HUGE crocodile tears in the X-ray room. 

My issue with labs beyond how traumatic and painful it is for Logan is that the doctors always find something ‘outside the normal range’ with his labs.  Then they get all worked up and start chasing those numbers.

But we succeeded in leaving the ER with the labs still sitting on the edge of the bed as we walked out…

(Haha Labs…you lose!)

Currently, Logan is still throwing up and not eating much.  Curiously, he has no other symptoms.  No one else in the family is sick, he has no fever, and beyond throwing up he seems to be in a great mood. 

To quote Logan’s cardiologist at Boston Children’s Hospital, “Logan ALWAYS has something up his sleeves for us….”

Next ped card appt. is next week. Most likely just a clinical exam.

 

4 thoughts on “I have no idea what the title of this post should be!”

  1. Good for you for refusing those painful labs! That picture of him scared makes me want to cry. You are such a wonderful mom and advocate for Logan. He couldn’t have gotten anyone better!! Am very happy to hear there will be no Fontan this year and that he is showing more of an interest in playing. 🙂 He is such a precious doll and I will be praying for him and for you. Love, Teresa xxx

  2. I’ve followed your blog since you were pregnant, we were pregnant with our heart babies at the same time. Just wanted you to know how incredible of a mother you are, you have educated yourself beyond some doctors, I truly believe that. Continue being the amazing advocate you are for your son. You are an inspiration to all mothers.

  3. I was just told about you and Logan from a woman on babycenter.com. I am 38 weeks and a week away from being induced. The ultrasound that revealed I was having a baby girl showed abnormalities with her heart. After multiple fetal echos the doctors have concluded that my baby, Ava, has a heterotaxy along with a complex heart defect and most likely asplenia. Her live stretches across her midsection and her stomach is not on the correct side of her body. She has a common atria, the left ventricle is significantly smaller than the right, she has only one valve separating her atria and ventricles, and she has inconclusive issues with her pulmonary veins and arteries. The pediatric cardiologists say they will have a more concrete diagnosis after she is born. The asplenia is assumed for now because they cannot detect anything through fetal echos. At first the doctors were suggesting that Ava wouldn’t live to be a year and the likeliness of her living to be any older than that were extremely slim. I ended up seeking a second and third opinion and the situation didn’t seem so grave after that. I have seen quite a few specialists, pediatric cardiologists, and the head of pediatric cardiology at UCLA. Although they have kept me very informed and are optimistic about the surgeries they plan to perform on Ava, you have been one of the greatest sources of information I have come across. After I am induced on August 30th, the doctors are taking Ava to NICU and plan to perform her first open heart surgery within 10 days of her life. The Fontan surgeries sound similar to what the specialists have been describing to me, which was surprising since you said that they dont normally do that procedure on babies weighing less than 30 lbs. I was told that they planned to perform about 3 surgeries: the first within 10 days of life that will increase the flow of blood to the lungs by connecting two arteries(or veins), the second at about 6 months to begin stopping the flow of un-oxygenated blood to the heart and begin to send it directly to the lungs, and the third between 1-3 years of life ending the flow of un-oxygenated blood to the heart so that un-oxygenated blood is sent directly to the lungs, then pumped to the heart, which will pump the oxygenated blood to the rest of the body. They said that Ava basically has half of a heart and so this would be the best set of surgeries for her. I am still very new to all of this and I was never told any names of procedures so I feel like I dont fully understand what the pediatric cardiologist’s plans are. I wanted to let you know how inspiring your strength is to me. You are extremely knowledgable and reading about your journey is very informative. Knowledge is comfort to me right now. I am sorry that everything is so up and down for you at the moment. I hope Logan has been feeling better and has stopped throwing up. Thank you so much for sharing your story!

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