What a month

We have had such a busy summer - lots of driving to and from Atlanta and Pensacola. Macsen picked up a few new doctors - in addition to Cardiology, ENT, GI and endocrinology last week he added 1 more - Hematology. The blood tests for endocrinology revealed abnormal results and I got a message they believed he had thalassemia - a genetic blood disorder I had never heard of. Dr.Google revealed very mild case with no treatment needed all the way to extremely severe cases that result in organ failure around the 20 year mark. Before our adventures with HLHS I would have immediately assumed our child had the mild version and not worried - nothing like that ever happened to us. Blame it on the PTSD from prenatal diagnosis or just our life since then but I jumped to "Oh my God! He has the severe kind - he has another diagnoses on top of HLHS and all the other stuff he has to deal with. How are we going to manage another stumbling block to a healthy child?" I was in full freak out mode - searching the internet, contacting all his doctors. His pediatrician tracked down his newborn screening in Philadelphia - it was normal. How could this have been missed? All the genetic test he has had - and us too! We met with the hematologist and after some discussion of history etc he says "Well, just looking at the numbers I would say it is very likely he has thalassemia but since you just said he is still only taking breastmilk and no food it very well may be only anemia." !!!!#$%^&*%$%^#$ Really? 3 harrowing attempts to find a vein in his tiny arm to yield enough blood to do the test later and the verdict is in - severe - SEVERE- anemia. He almost has no iron in his blood at all. So I start googling it and my first thought is why none of our battalion of doctors ever told me to give him - my child that exists solely on breast milk- a fact I repeat over and over to every dr he has- no one told me to give him iron. I feel like such a failure. His lack of growth, delayed motor skills, extreme fatigue, higher heart rate, nonexistent appetite, and just general discomfort in his own little body could have a lot to do with this anemia :( And I didn't see it. I feel sick. google reveals all kinds of awful side effects of severe anemia for normal, whole hearted people. Macsen is already struggling because of his low Oxygen levels and here I have made it worse - shorting him red blood cells he desperately needs to carry oxygen.
And with all the marvels of modern medicine treating anemia is a very slow and kind of outdated process. He was put on oral iron - ferrous sulphate - a disgusting metallic mixture that not only constipates but also is barely absorbed - I think I read only 2% is actually absorbed... awesome thought as I'm holding Macsen's retching mouth open, forcing in 3 ml 2x/day while he sobs "Mama mama mama"then vomits. It wasn't happening. The kid won't eat applesauce for goodness sakes - how am I supposed to get liquid metal down his throat? I found something else through the suggestion of the health food store owner. It still tastes slightly metallic but is a food based supplement that is not nearly as vile and about 25% is absorbed vs the 2 from the other stuff and not constipating. He still struggles to push everything out with his tongue while I squeeze his cheeks together and beg him to swallow - often wiping most of it off his chin and neck where he spit it out, but he doesn't vomit which is a plus. He has been complaining of headaches too - pointing to his head in the middle of the night, half asleep and crying. The hematologist thinks this could mean the iron isn't being absorbed through his gi tract and we need to start iv iron infusions -in Pensacola, 3 hours away- a slow, 2 hour process where my 22 month old would be "sitting still" with an iv in his arm. The process of finding a vein terrifies me already - flashbacks of him screaming, his fractured heart pounding - his body so slick from sweat it took 3 people to hold his arms the last time - they looked in one arm, then the other, then back to the first arm to take blood. And I have to do that to him every week? Not to mention his veins are already pretty wrecked - I can't imagine what this would do to them? Would they end up needing to place a port again - a PICC line like he had before his 1st surgery because his veins kept blowing and they couldn't keep a good iv? And his team of doctors is not in agreement at all on this - 1/2 say iv iron the other half say too many side effects. What do we do? The pediatric infusion scheduler called me twice today to set up the appointments and I told her I would have to call her back.
Today Mister seemed a little better.  I got a great video of him rolling on the carpet and giggling. He asked to try some of the stir fry I made for dinner-  chewing the tiny pieces of ground beef for just a second before poking his tongue out and saying "ehhh" until I scraped his tongue. But he tried it! He is learning new signs - his favorite is "book." He loves lift the flap books and will ask me to read him 10 at a time - it's impossible for me to say no when he's signing "more book please" over and over. I'm so grateful for sign language. Praying the tube surgery in September will help him hear better so he can start talking more. It will be so much easier when he can tell us exactly how he feels.
We have another trip to Atlanta coming up this month. The girls will have to miss a few days of school but Macsen has a few days of tests and I didn't want to have to leave them with friends. We will have fun the weekend before - it is our oldest's birthday and she wants to visit the aquarium in lieu of a party. YAY!!! Parties are fun but I admit I am relieved when she choses to do something else for her birthday. And we will see Nana and Grammy who will fly in from Maryland. We are very excited to see them and celebrate her big day with family.

Macsen misses his sisters when they are at school