Be Brave Mom

 

Monday, January 25, 2021- The weight of my blankets only made me want to stay in bed longer. I'm not a morning person regardless of not wanting to face Myles' doctor appointment. Myles decided he wanted to wear his super Mario brother hat from Halloween. Sure, why not?! When we arrived at the waiting room for the clinics in Primary Children's Hospital, I was taken back by the emptiness. The hospital, dedicated to the care of children, always has plenty to do and multiple options in the waiting room. We were once there for a swallow study and someone had the sole job to blow bubbles and play games to distract Myles and keep him happy during his testing. Anyways, thank you covid for destroying the fun for sick and sometimes scared kids waiting to be seen. 😓

 We actually didn't have to wait long. The nurse took us back to the room they weigh and measure kids in. When I walked in memories flooded my mind of all the different times I've been in that room with Myles. The baby station even has the same mobile hanging over it. Myles screamed as a baby on that table every time we went. I'm grateful he's excited to be weighed and measured as a big kid now! 29.2 lbs and 40 in. Last time we were there in person he was right around 25-26 lbs. Greg started looking up what rides Myles could go on as a 40 inch kid at Disneyland even though we haven't gone in years. He always checks that...silly Daddy. That's why we love him.

 

When Dr. Patel walked in our room he asked, "How are you Myles?"
"Great!" Myles quickly responded.
"You are the first patient I've seen today that has been great! I'm so happy!" I think pediatric gastroenterology would be such a hard profession to be in, having to see sick kids and complicated cases constantly. (Watch the movie- Miracles from Heaven. I think it mildly shows the challenges of the mom and family as well as the gastroenterologist. I can't get through it without a good cry...) Myles showed Dr. Patel his super Mario jumping skills and gave him a high five.

I explained that Myles has been complaining about his button "hurting." He looked at Myles button and said, "Wow! You have a gut! This is the first time I've seen your tummy stick out!" Happy mom moment. He's right, Myles has a tiny gut...just don't look higher at his boney ribs sticking out! Dr. Patel explained that Myles' button is probably bothering him because he actually grew and needs a different size. He wrote up an order for the new size button...ugh.

We talked about Myles latest eating habits and accomplishments. He's keeping his food down, he's trying new foods willingly, he's eating more meats, and he'll even eat soups. Now I have to admit to Dr. Patel that I'm not giving him the Elecare formula feeds. He will drink it orally now (huge accomplishment, I never thought that day would come) although not tons of it. I explained that everytime I tried to tube feed Myles he would threaten that it was going to make him puke. He would usually be yelling this and the pressure of yelling and fighting would make the formula flow backwards into his tubing and bubble out the 60 ml syringe I use to feed him with. If I didn't catch it in time and close the clamp it was a huge mess. Picture forcing a burp out, but liquid is involved. Besides all this, he won't actually orally eat as much with formula feeds. I brought a bottle of a dairy free protein drink I found at Costco that Myles actually enjoys to drink. Dr. Patel examined the ingredients and did some math. He was ok with this helping calories out, as long as he also took a multivitamin. Done! Thank you Costco kid vitamins! 

The next thing Dr. Patel said surprised me. "So do we even need the tube anymore? You haven't used it in several months and he's gaining and growing." I'm sitting in shock as he talks about a pediatric surgeon needing to close the stoma because he's had it about 4 years. The surgeon will probably want to see it before the surgery is scheduled. Dr. Patel gets up and says, "I'll be right back. Let me see if I can find one here today."

I look at Greg, "Is this real?"
"I think so."
"Is he going to take it out today or just look at it?" My anxiety is rising.
"No, he's just going to look at it...I think."

No... this can't be real. I've been here before. The doctor was almost going to take it out and decided we needed to give it a few more months. Then Myles didn't grow in that time frame so the tube stayed. I built my hopes up just to have them crash down. This can't be real.

Dr. Patel came back unsuccessful in his efforts to find a surgeon. He started to explain that it is a really big deal if they have to go back in and do a second g-tube surgery because of placement and scar tissue. Myles has to keep progressing. Here it comes...he's going to decide to wait. We continued to chit chat about things relevant and not. Myles kept running around having fun. Finally, Dr. Patel handed us his business card with the surgery departments number written on it saying, "I've sent the referral over to surgery so give them a call."

We left taking pictures every step of the way and with the fish wall (we always take pictures there). After several minutes in the car, I looked at Greg, "I can't even text our family. It doesn't feel real. Is this going to happen? It's been so long."

Greg responded, "It's real! Text them!"

Instead I dialed the number for the surgery department. In a few short minutes they confirmed the referral for surgery to close the g-tube stoma and made our appointment for a consultation February 8.

Greg got out of the car to pump gas while I pulled up my phone to send a text out.

"Myles doctor appt went sooo good today. We are being referred to surgery to have Myles tube taken out and surgically closed. We have a consult Feb. 8. Then we can schedule surgery after that. I have so many mixed emotions from excitement and happiness to relief and some fear mixed in there!"

I hit send automatically without thinking. Very suddenly, it hit me. This is real. This is the end of his feeding tube. Myles will probably always have to watch what he eats. But no more tube feeds officially and stoma checks. No more worrying about infection if he gets in a lake before I can cover it with tegaderm. No more sore skin because his stoma is leaking constantly. No more finding his button pads all over the house because he ripped them off. This tube saved his life at one point. What if he needs it again? What if he stops eating? What if the years of work getting him to eat just disappears? He's had this tube longer than not. It's been a part of him and now it won't be. I'm so grateful and scared and...??? I don't even know. Then I’m crying. No, I'm sobbing uncontrollably. Full on ugly crying.

From the back seat I hear Myles ask, "Mom, are you ok?"

"Yeah, I'm just so happy for you buddy." Sob. Sob. Sob.

Greg climbs back in the car, "Oh their it is!"

Myles tells him, "Mom is crying Dad."

"Sometimes people cry when they're really happy."

After a pause Myles says, "Be brave Mom." From the mouth of babes. God askes us to be like little children because they are brave, and forgiving, and love with no end, and they trust us-their parents, and are full of faith. As we need to trust and have faith in our Heavenly Parents. What a lesson and reminder from my sweet boy.

When we got home all the kids greeted Myles with excitement and signs and homemade gifts! I was especially touched that several kids had donated a special dollar to Myles. When we left our vacation in Florida, a lovely woman we met there gifted each kiddo with treats and 3 cute folded dollars (represented the 3 kings). The kids liked the folded-up bills so much, none of them spent them yet. Myles was re-gifted several of these bills by his siblings. I love to see my children actually getting along.

 

I hope I can always remember that God has a plan for me, for you. Sometimes, most of the time, we don't know what this plan is. We struggle and sometimes fight it. But He knows what is best for us. We are being shaped and molded by His loving hands to be the best versions of ourselves one day. In these uncertain times, when prayers feel like they are not being answered as fast as we would want or in the way we want, I hope we can remember that He is listening and He has a divine plan for each of us and it is beautiful. I just need to remember Myles advice to me, 

"Be Brave Mom."