Atlanta appointment #2

Big sister keeping Bubs happy during his appointment

We just got back from HOTlanta - and boy was it ever hot. In the 90's. We were very grateful for the pool at the hotel after the 4 hour drive there. We saw GI this time. I feel like for the 1st time this GI doctor actually LISTENED to us- I really, really liked her. She has ordered an MRI to look at his head and neck. It's another hour of sedation which is terrifying with Macsen's history - but the only way to see if that lymph is affecting him in ways we cannot see via xray. They also want to see if insurance will pay for an intensive 6-8 week inpatient feeding clinic There is a long waiting list so maybe after getting the MRI, ear tubes, and ruling out any physical reason Bubs can't swallow we can get him to eat without needing to go to such an extreme method. It would be tough with the girls in school, Aaron working and me in a different state away from them for so long. We would need tons of help. I have faith we can make it happen if that's what needs to be done but praying we don't need to. And if insurance won't pay I'm afraid the clinic is out of our reach at $50-$80,000 so there's that.
The trip was hard on Macsen - he was irate and uncooperative for the first time at a doctor appointment :( He screamed through blood pressure check (so they were unable to get anything,) screamed through weight and height check, and screamed for about 5 minutes after getting into the room. Finally Nurse Mimi  went and got the rest of the family in the hopes it would calm him down. It seemed to help -  his older sisters played cars with him so I could actually talk to the dr without him screaming and turning my face with his little hands. He turns it so I have to look at him, like he's saying "I don't think you realize how upset I am - look at this face!"
I don't know if he is just putting 2 and 2 together that doctor appointments are scary or if it's his age or if it was his canine teeth coming in (you can just see them peeking through) but he has not been a happy camper. I hold him 105% of the time - even in the middle of the night he crawls onto my chest and rocks himself back and forth. It is all I can do to get a shower every 2 days and sometimes I just bring him in with me. He may have grown 3/4 of an inch - I never 100% trust his measurements when they are done in different offices - but a growth spurt could explain his crabbiness too... I think. Could be many other things - heart things, gi things, ear things.... so many things. Praying in the next month we can lessen that list - at least the treatable ones to make him more comfortable and give me a tiny break. You know to shower and eat breakfast.
We also met a nutritionist that was open to my need to stay away from corn syrup. Macsen won't drink any of those sugary calorie drinks anyway. We are going to try adding 1 tablespoon of gelatin to my breastmilk (spread over many bottles to mask it) to get in an extra 6 grams or so of protein in his diet. Hopefully he won't boycott eating all together which he has been known to do when I hide stuff in his milk.
I will keep everyone updated on the MRI and tube situation. I think it will be soon. Thank you everyone for keeping him and our family in your prayers. Sometimes all of this seems so overwhelming but then I look at how far Macsen has come and I know we can and will do whatever needs to be done for our little miracle man.
On a good note, we got to spend some time with one of Aaron's best friends from Maryland. We ate a nice dinner with him on his way through town. It's always nice to squeeze in a little normal on our trips and we appreciate Kenny and his buddy Lucky driving 200 miles out their way on their 1800+ mile roadtrip to come see us.

Our little clown

New day, Different doctor

Macsen had a scheduled cardiology appointment yesterday in Pensacola. Everything looks good according to his cardiologist. Still very minimal leakage with his 1 valve - his tricuspid - and no changes. He fussed for the first minute of the echo but calmed down and let Cindy get the pictures she needed - bubbles by Daddy helped. Strange to think I have been lying on this bed, looking anxiously at that same screen of my son's heart since 20 weeks before he was even born.

His oxygen saturations have started to slowly drift downwards - no longer hovering around 84% he now is luck to see 79/80 with dips into the 50's and 60s when he cried and several minutes in the lower 70's recovering from the briefest exercise. We are still on the whole "wait and see" path for when to schedule his next surgery. When he starts staying below 75 is what his cardio said yesterday - maybe around 3 but who can say. Could be next year, could be next month. My hope is we can do it next summer - away from all the cold and flu germs that plague us with the girls in school, and maybe we can have the girls close to help him recover. Getting him up and walking is a big part of the recovery process.
He is 21 months now and since his 1 yr bday his height has slowly been falling off his growth curve. He's always been pretty consistent with weight and height being around 3-4 percentile for children his age but now he has fallen off the charts for height and is around 2 percentile for weight. So we saw an endocrinologist yesterday as well. I think we love him. Probably the best thing he told us was that he doesn't think MAcsen's lack of growth is related to his inability to eat solids and that he is getting great nutrition from my milk. For his height his BMI is in the 90 percentile range and his weight for ht is 50 percentile. So he's a good size girth wise just not height wise - he's vertically challenged. A feeding tube won't make him grow taller - probably fatter which wouldn't be a good thing according to this dr. Music to my ears - seriously. So many experts have told me he's not growing b/c of a lack of nutrition but this expert says not so. I can stop beating myself up now. There must be another reason. Macsen was supposed to have all these labs done - ie blood drawn to test his complete blood count (CBC,) thyroid and levels of growth hormone but the tech, despite digging around for a vein for several agonizing and heart breaking minutes in both M's arms, was unable to get even a drop of blood. I refused to let her try again and we are going for round 2 tomorrow at a different clinic. Hopefully the next person will listen when I tell them he is a hard stick and heating packs really will help find the vein - this one obviously knew better than me - insert expletive here.

Blood draw fail = passed out from screaming

We had a truly magical day at the beach the day before M's appointments. We all spent so much time in the ocean - Macsen sitting on a boogie board riding calmly and happily over the top of all the big swells, the girls bobbing along in the salty water. We made a mermaid out of sand and shells and seaweed  then had a great dinner at Peg Leg Pete's. Our hotel was beautiful - the Hyatt near the airport is just gorgeous and the kids LOVED the indoor heated pool, modern decor and breakfast. A perfect day

Sandy the Mermaid