T&A, Tympanostomy tubes & MRI … on the road to recovery

We are at 10 days post-surgery, and thankfully we are surviving. On Tuesday September 22, 2015, Colton had his 3rd surgery for tonsils and adenoid removal, tympanostomy tubes as well as an MRI. For the first 2 surgeries, he had no issues with intubation. However, this time was different. Since he has hearing aids, I’ve been allowed to take him back to get him to sleep calmly. It was slightly different in that, it took about an hour after I left him with the anesthesologists to secure his airway. Even though we’d done a pre-anesthesia clinic and neck xrays, it still didn’t matter. Coltie is complex.

What I find interesting about the recovery from this T&A surgery is that some days he seems great and then quite suddenly he will be in pain… so he is still continuing on the regiment of pain meds. Though I’m missing the gtube, which I never thought I would. Giving meds used to be soooo much easier when I didn’t have to talk a 3 1/2 year old into swallowing it. He’s learned to sing ‘Spoonful of sugar helps the medicine go down’. And sometimes he takes it easily, I believe realizing that it helps him feel better. We’ve eaten lots of popsicles (store bought and homemade) and drank lots of wiggly worm juice. Colton has also received some sweet gifts… a care package from his Uncle, Auntie & cousins that included Cuddles the stuffie pup, books and stickers, as well as a Paw-Paw hat from his Grandma and Paw-Paw!

Next surgery to be scheduled

We had our yearly cranio facial team (cranio doc, otolaryngology and SLP) appointments this morning. Everyone was sooooo kind and happy to see Colton doing so well! He was walking and talking away, like his little charming self. :)

During our discussion with our ENT (ears, nose, throat doc = otolaryngologist) — she recommended that we get new ear tubes, tonsil and adenoids removed. The adenoids are glands located in the roof of the mouth, behind the soft palate where the nose connects to the throat. And she has been recommending that we do this for years. I was worried that getting the adenoids out would cause more nasal reflux, since there would be more space between the nose and and soft palate. However, Dr Sie (who is FABULOUS) said she would be cautious. I’ve heard from other parents that this one is a hard recovery, especially for our kiddos with breathing issues. But at the end of the day — if it helps Colton have less sleep apnea obstructive episodes as he is sleeping — having a rough 2 weeks as he recovers, is hopefully worth it. He has always sounded like a freight train.

Heart Update

It’s been 3 days still Colton’s PDA closure in the cardiac cath lab. He is doing GREAT!!! On monday morning, his surgery was the first one of the day for which we were so thankful. We checked in at 6:45a and were met by my dad (Grandpa Julian) and Bri’s mom (YaYa). There were lots of hugs for Coltie’s awesome grandparents and then Bri, Coltie and I went back to pre-op. We met with the surgeon, nurses and anaethesiologists. I was able to walk him back to the OR and sang him to sleep as he was given a gas mask. The surgery took less than 2 hrs and went soooo smoothly.

Here’s the image including before and after photos, showing the PDA and the blood going into the left ventricle where is should not be. And once the amplatzer ductal occluder I was in place you can see it’s all clear!!! What a MIRACLE!

He was back in recovery by 10a. I was also able to go back to the recovery room, which parents are usually not in and was there when he opened his eyes. He smiled and fell back asleep. We moved into the second phase recovery room and since his stats were soooo good, they made the call that we could take him home!!! We were home and napping by 4p. We are sooo grateful for the miracle of modern technology and all the love that was sent our little boy’s way. Mwah!!!

He’s been a bit clingy, wanting to be held and dance A LOT! So we’ve all been a little tired. But as of this morning, he seems to be closer to his happy self.

Hole in the heart

This year has been an incredibly busy time in our lives. Colton is now 3 and sooooo talkative. It’s wonderfully delightful to hear him form these fantastic sentences. We just weren’t sure what communication would be like in the beginning, and to be where we are now feels very validating that we are doing well by our boy.

When Coltie was born he had multiple holes in his heart, of which the VSD’s and ASD’s closed, and his PDA is still open. In our annual cardiology appt on March 26, 2015, we were given the news that it is time to go in and close this hole. The doctor’s do this routinely every day but to us this is anything but routine. Handing your baby over to doctors to cut them open is gut wrenching. We are staying positive and trusting these amazing doctors at Seattle Childrens Hospital. Usually cardiac cath pda closures are an out patient procedure. However, due to the complexity of CHARGEr’s and the affects of anaethesia the plan is to have Coltie stay overnight in order to watch him and ensure there are no issues before we head home. What they will be doing is going in thru the vein in his groin. The cardiologists will be using a catheter to guide a device into this hole and is permanently in his heart for the rest of his life. The heart tissue will grow around it and close the hole. On this friday afternoon before a monday morning procedure the day after mother’s day, I’m feeling very grateful for this technology that is much less invasive than having to cut open his chest to fix this hole. I’m also sending out positive energy into the universe that all will go smoothly. We’ll keep you posted.

2 1/2 year update

Oct 16, 2014, we had our 2 1/2 year old pediatrician appointment.

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Colton stats…
He is 2 years & 6 months. Wow – time flies.
weight: 25 lbs 8 oz (7-8%)
length: 36 inches (40%)
head circumference: 48 cm (25%)
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The doc was sooo impressed with Colton’s cognitive development and growth!

As of August 2014, in this year of eating, we have hit *MAJOR* milestone of eating all calories orally!  Woohoo!  Happy food dance in our home.

Loss of our dear pup…

Our sweet doggie Andalu passed away on 9/3/2014 at only 9 years old, so quickly. Within a few hours, she was just gone with no forewarning or showing any pain. Next week it will be 2 months since she has been gone, my heart still hurts from this loss. She was the best companion all her life and most especially in these last 2 1/2 years, since Coltie’s birth. She was always there to give us support, listen to any of our worries, and lean into for a comfort cuddle.  She was the best motivator to get Coltie to move. She loved our family unconditionally and gave us soooo much more than we gave her. Her absence will be felt for a long time, she was our first kiddo and the family feels incomplete without her.
Here are a few of my favorite photos of my girl.
These last 2 photos were taken in Ocean Shores, WA at our family beach vacation a month before we lost our girl. It makes me so happy seeing such joy on her face as she ran on the beach like when she was a puppy. I miss her so much.

TOP 10

It’s been awhile, since I’ve posted. Life has been busy and full of a long list of “to do’s”. I try to be present in my time with Colton, but I feel at times I’m not as good at it as I would like. The days are just zooming by…
TOP 10 about our little dude:
1. He’s now 28 1/2 months old.
2. He LOVES music! I was so devastated and worried in the beginning when we were told of his hearing loss. In those first few weeks of his life, I just didn’t know how we would ever enjoy music as we had in the past. And now today, Colton requests to listen to music all day, everyday!
3. Most days, he is eating his meals orally (daily calorie goal is ~1,000 calories)! Hummus, nanas, cottage cheese, avocado, potatoes and yogurt are top favorites right now. It’s been an unbelievably journey to get to this point and we are relishing in some normalcy of the typical toddler experience with eating and declining some foods.
4. Speaking of, Colton has very strong opinions these days and will get very upset if you don’t do what he wants right away or if you don’t understand him. It’s hard, but sooooo wonderful that he is exerting his opinions.
5. He can count to 100 verbally and using the sign language number signs.
6. He can do his ABC’s and his ZYX’s, next time let’s all walk to Texas. :)
7. We’ve not been to see a doctor since his 2 yr check ups with our team of docs 4 1/2 months ago. So I’ve no idea what his stats are.
8. He’s pulling up and cruising on everything. However, we are still working on his balance, and his falling reflex is definitely improving. Though when he’s tired, it’s much more affected.
9. He adores MICKEY MOUSE (yes, he can spell the name of his favorite mouse), his dog and his Daddy!
10. We are raising a lucky little boy that has sooo many wonderful friends and family that are always sending him their best juju. He was born into the perfect family that loves him unconditionally!

Update : In This Year Of Eating!!

Where to begin… we started seeing a new speech therapish right before Coletrains 2nd birthday. He goes every Thursday morning and loves it. In this last 4 months, our little boy has grown soooooo much! He has been using chewy tubes to strengthen and stabilize his jaw.

 

 

 

 

He is now eating 1/2 of his meals orally!!! I know to most people that have kids this would make no sense, but to this momma that has worked sooooo hard to get to this point it’s sooooo INCREDIBLY AWESOME!!! Last night after he ate 4 ozs at dinner in ~5 minutes, I breathed in the moment. I’ve been nervous that this was just a fluke and so haven’t really talked much to anyone about it. BUT it’s been a couple of weeks of good progress.

Here’s a video of the little dude eating his favorite … H-U-M-M-U-S!!!

 

And I made some yummy nectarine, banana, oats puree for brekkie one day… here’s his response: