some bumps

It was a loooooong night, so I'm going to make this brief! There will probably be lots of typos and grammatical errors; I don't want to hear it mom!! ;)

Surgery went as expected. Dr. Perkins was pleased with the pictures the laryngoscopy rendered; his airway looks great! He was also shocked at how large Noah's tonsils were. He wasn't removing them because they were causing any problems or because they were super inflamed. One of the other ENTs called them "innies", meaning some kids have crazy enormous tonsils that so obviously need to be removed, well Noah's were mostly on the inside of the wall of his throat. I asked if that was just genetic or his lymphatic malformation; he said both possibly. Anyway, because they were so huge it created 20-30% more room in his airway! This made me feel much better about doing the surgery.

He also said Noah had lots of adenoid tissue to scrape away, so now when Noah gets sick he shouldn't have nasal congestion. Adenoid tissue can regenerate though, not that its a big deal. I'm wondering if that now means he will just constantly have a runny nose rather than get plugged up?!?

Yesterday Noah was just in a lot of pain. Lots of crying, no-- lots of yelling and bawling. He didn't eat anything and just wanted to be held. Last night, it seemed like we finally got pain management under control and he seemed more comfortable in that respect, but he was increasingly having trouble breathing.

Apparently the floor of mouth is much more swollen than expected, and it is pushing his tongue way back in his throat and up, touching the roof of his mouth, which is obstructing Noah's airway. He's working hard to breathe and can't sleep, and his oxygen saturations were down to 88 and 89%. Not incredibly dangerous, but they began pumping oxygen in to his crib to help. Not down his throat or his nose, just sitting right next to his face. So that helped and his SpO2 is now cruising at around 95-96%.

After ENT made rounds this morning, they ordered steroids to help control tongue swelling. I'm headed to take a nap now in the closets they call "parent sleeping rooms" ha. Hey-- I'm grateful for a bed. Not complaining!

I'm anxious to see how the steroids help. In the past it has taken at least 24 hrs for them to take effect and decrease swelling; I'm not sure if they'll put him on a higher dosage considering the circumstances. I'll try and update the blog later tonight or tomorrow morning.

Many thanks for all the prayers... I had a feeling we might hit some bumps with this surgery. Hopefully they are nothing more than bumps!

Love,
Andie

I'm having a moment

I'm emotional.

With Noah's surgery coming up on thursday (and maybe the fact it's almost that time-of-month), I am holding my sweet boy so tightly and tearing up as I type this.

Just watching him full of joy and life, cruising around the house in nothing but a t-shirt and diaper (his usual uniform-- it would be just a diaper but he would pull out his g-tube!). Just breaks my heart that he will soon be in so much pain in his throat.

My biggest prayer: no swelling.

Please Lord, have mercy. No airway compromising swelling.

Please Lord.



Not that this surgery is even a big deal compared to the "big ones" that sit on our horizon. I know I need to just relax. And trust. But still, this is the first time we've touched even close to Noah's LM and I'm just worried and stressed. I'm 99% sure this is the right thing to do and the right time to do it... we are making more room not only for when he gets sick, but also in preparation for the big surgeries. I'm just asking for peace and confirmation from the Lord that we are making a good choice. Lymphatic malformations are unpredictable and scary!

"I will follow you in green pastures and sing Hallelujah to your name. I will follow you through dark disaster and sing Hallelujah through the pain. Even in the shadow of death I will praise you. Even in the valley I will say, 'Holy, my God, you are worthy of all my praise'"

(From Selah's "All my Praise", but pretty sure its somewhere in scripture!)