Macsen - out!

Discharged!! Though the doc urged us to stay close to the hospital tonight. We have to keep an eye out for fevers, any grossness at his cath sites when we take the dressings off tomorrow. He has been very puffy from the sedation - couldn't even open his eyes he had so much fluid-and we are hoping a dose of Lasix will clear some of it up. He was also very very junky when they sedated him - they suctioned lots of gunk out of his lungs. Hopefully it is not a sign he is getting sick.

His cardiologist came to talk to us and she was reassuring. The good news is his heart numbers look better than they did before his last surgery. His tricuspid looks strong and the patch sewed on during surgery #2 is only leaking minimally His ejection fraction isn't good though - it measures how well his right ventricle squeezes- what percentage  of blood it is ejecting with each squeeze. A good number is anywhere from 50-70 so Macsen's EF of 30 is worrisome. His ventricle is stiff and just isn't working very well. So the plan is to try meds to help his heart squeeze better. And then a tentative date for surgery Summer 2015 if the meds seem to help him. They are still evaluating parts of the MRI. We hope to get more heart info and some information on his lymph accumulation. 

Tonight and for the next few days we hope to get lots of rest. None of us have slept well in 5 days and with the stress of everything we are just exhausted. Looking forward to the king size bed at my sister's house and seeing our girls.

Chiari?

Based on Macsen's spinal MRI today his neurologist DOES NOT think he has chiari malformation. The fluid around his brain is flowing freely and unobstructed. It is great news to know he will not need brain surgery - fantastic news. He also felt Macsen has all the precursors for speech - it's just going to take lots more work. Definitely doable. 

So great news so far

He is still getting his cath. Will update when we know something

Macsen's auntie G is here waiting with us. She was so great during his appointments/consultations yesterday bc she played with him so Aaron and I could direct 100% of our attention to the Dr. 

***Update at 11. Cath is going well. Another update at 12

Cath time

They just took him back. Not a second too soon - he was signing "water" and starting to get upset. They found an ENT that verified the tubes were blue plastic so M could get the MRI. Apparently older tubes were made of metal. Very annoying though because we had all his records sent - that piece of information wasn't anywhere to be found. I held him while they held a mask to his face - it was strawberry scented to mask the gross smell of the gas- and he was asleep in seconds. Then we had to leave him while they place his Ivs. It will be several hours before we get to see him again. I am praying all goes well - no reactions to sedation, good numbers in his cath and no complications.

In Philadelphia

Our drive up went very well. Kids watched lots of movies which helped a lot. 

Macsen did well with the neurologist - really impressed him with how smart he is. Macsen was really showing off - making all the sounds he refuses to do for his speech therapists. Pointing to all his body parts. Even playing jokes on the doctor. 

Now we are waiting on an ENT to look at Macsen's ear tubes - have to make sure they are plastic before he can get an MRI. It's been 7 hrs since he's eaten and he's going to freak out soon. 

Apraxia anyone?

Macsen's speech therapist threw out a possible reason Macsen doesn't talk yet. She said some of the mannerisms I have brought up are consistent with Apraxia.
"Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words." (From the American Speech Language Hearing website.) 
I have been looking here http://www.apraxia-kids.org/  for more info as well as doing what I always do when we get a new diagnosis - consulting Dr.Google, reaching out to my heart community. I"ve already "met" several heart mom's whose little ones are also battling Apraxia. 

Sigh. I hope she's wrong and Macsen is just stubborn and any day now he will just magically start spouting out full sentences. But a lot of the symptoms fit. Very little babbling. No mimicking sounds. Eating issues. Normal/age appropriate understanding of verbal language but severe delays in oral communication. Today I told him we could go get Daddy if he would just say Dada - he tried but all that would come out was Ma Ma and he started to get upset, doing his sign for "Daddy" and pointing at the door.
He's a little young to be officially diagnosed but I will discuss it tomorrow with his other speech therapist. I will also talk to his neurologist about it next week. 
Treatment includes intensive speech therapy - 1 hr/day  3-5 days/week w/ a therapist experienced in apraxia. In severe cases some children need a communicating box that speaks for them. It is kind of rare so finding someone experienced is important. Also, I have been reading up on how the use of fish oil has been helpful for some children with Apraxia so I ordered the ones I found recommended. Hopefully his cardiologist won't say they're not good for heart kids - they do have blood thinning properties.
Macsen is also still coughing and snotty:(It has been 2 months now and even though his cough sounds ugly his pediatrician says his lungs sound clear.  I am doing everything I can think of to get him well for his appointments/procedures next week. We really need some prayers. I'm so afraid we'll get all the way to Philly, he'll get his pre-op xray and they'll tell us he has pneumonia or something and all procedures are cancelled. We need answers. We need these tests so we can know what is going on with his brain, his heart, if his heart looks good enough to be a candidate for the 3rd surgery and when that will be.
The fundraiser went well at Nantuckets coffee shop. We met some amazingly nice people - the majority complete strangers- and they were able to raise several hundred dollars for Macsen. He was such a little charmer the whole night - waving to everyone, blowing kisses to say "thank you" and signing please if he wanted something. He also doled out hugs and smiles everywhere. He was just perfect and his sisters were very sweet too. The delicious hot cocoa and brownies helped, as did the products some of the vendors "sold" them for a quarter or a dollar - thank you Kristina from Perfectly Posh, Alex from Uppercase living, Angela from ThirtyOne, Nantuckets and everyone else who came out in support of our family. You are amazing humans

Happening tonight

The family will be there tonight. We will also have Macsen's T-shirts and car magnets. 

Onion backpack

Desperate times call for desperate measures. Antibiotics, steroids, and now .... Onions. A fellow heart mom shared a treatment she uses for her hlhser when she gets a cough. Onions slightly cooked, warm in a cotton towel and tucked into his shirt. We did it twice yesterday - he slept last night finally and didn't wake up in a pool of coughing induced vomit so I declare this old home remedy effective :) He is junky coughing now so I made another onion poultice and slipped it in his shirt while he watches Daniel Tiger. 

Happy Fall

It was 74 degrees today - hence the barefeet. Macsen needed some Vitamin D so we spent some time soaking it up outside - his favorite place to be. He is till battling this virus. I have been keeping his pediatrician in the loop - he just couldn't seem to kick it - and Monday it seemed to be getting worse so we brought him in. No wheezing but he was really rattly and working hard to breathe around all the junk. She put him on Zithromax and an oral steroid that is -HALLELUJAH!!! a dissolvable tablet I can syringe with a touch of water so he doesn't vomit it up. We started Monday and today he seemed slightly better. He wouldn't nap - maybe the steroids? He ate bone broth with a tablespoon of baby puree mixed in so it was still really watery. Some yogurt melts. A few bites of croissant, a few bites of pizza.And he downed 8 ounces of milk at bedtime - a first in his 2 years. He never eats more than 4 ounces at a time. I was so afraid he would vomit I stopped him 1/2 way through and burped him and walked with him upright, trying to get the milk to settle down. He zonked right out after that and hasn't moved for the past 3 hours. It's probably the steroids making him so hungry but I'll take it. He hasn't been cranky or mean -no 'roid rage this time- just seems to have more energy and is sillier if that's possible. He gets such a strong case of the sillies his eyes crinkle shut, his mouth stretched in a huge grin, and he grabs my face and squishes his cheek to mine. Aw, these moments are pure magic. Love that boy. 

He's still working all his speech therapists - he refuses to make their lives easy. He will show off for physical therapy and his occupational therapist who also works on feeding - but for his speech therapists he looks at them and shakes his head no when they ask him "Can you say'Boo? Moo?Mama?'" All sounds he makes everyday for his oldest sister - that girl is a natural speech therapist, a born teacher. Now if we could just bring her to all his appointments we might get somewhere!