A Day in the Life of Mason

Have you ever woken up in the middle of the night worried that if you got hurt or died or something horrible happened OR you just want to go to IKEA alone for a day no one would know how to care for your high maintenance child(ren)?  Casey is amazing and would be able to do this, but this has always been a fear of mine and it may sound silly but since Mason was born I have felt even more worried.  To help with this I am always telling Casey how I do things.  He laughs at me but a huge weight is lifted off my shoulders when I know I'm not the only one that knows how to do something.  Worrying aside, I just wanted to document all the fun new-to-me ways I get to take care of the sweetest little boy in world. 

Schedule

7 am- Wake up, change Mason

8 am-pull ACTH out of the fridge to warm up, get 3ml Topamax and 1ml Vitamin D in syringes

Mix 1 packet Prilosec with 15 ml of water.  Let sit for 2 minutes then draw up in a syringe. Give Mason the Prilosec FIRST since he has to take it 1 hour before next feed starts.  Slowly squirt it out in his mouth or put it through the tube. Give him the rest of the oral meds. If anything was given through his tube make sure to flush with 2ml water. 

Get supplies ready for ACTH injection: 2 alcohol preps, 1ml luer-lok syringe, needle, and tissue. Give injection. Put needle and syringe in sharps container. Put ACTH back in fridge! Give Mason big loves. Get food ready for other kids

8:30-Get Carly on the bus

8:45- Get Mason's formula measured out so it can start warming up. Add it to the feed bag and prime the tube. Hook it up to the pump and hang on pole. 

9:00- Start Mason's feed.  He needs to be elevated while he eats. Run the feed over 40-45 minutes. 

9:45-Unhook Mason and rinse out bag. Keep him sitting up for at least 15 minutes or else he'll throw up the feed. 

Next feeds are at 12,3, and 6. Make sure pump charges when not in use.

8 pm-pull out ACTH from fridge and get injection supplies ready. Also get Topamax ready.

Give injection and give Mason big loves. Change him into his jams. Get night feeds ready. Measure out formula needed for 9, 12, 3, and 6 o'clock feeds and pour into bag.  Put the bag into backpack with an ice pack behind it. Zip it up and hang it on the pole.  Connect it to the pump and make sure to set pump to feed him every 3 hours and slow rate of feeds down to an hour. Carry pole upstairs and put Mason in bed. 

relax, then fall asleep on the couch ;)

Food

Mason is fed on a pretty strict schedule every 3 hours (even throughout the night). He gets between 90 to 120ml.  It's a wide range because sometimes he'll throw up if he gets more than 90ml, but other days he seems super hungry and he'll only relax after 120 ml.  On most days he gets 100 ml.  He gets Similac Sensitive and thankfully our insurance covers it.  To make things easy I mix a large batch of formula every morning. I used to have to fortify Mason's formula to different calorie densities. The normal calorie content of formula is 20 calories per ounce but for a few months I had to mix his formula differently by adding less water to equal 24 calories per ounce.  As he started gaining weight better the dietitian lowered it to 22 calories and now he's on normal 20 calorie (thank goodness). I weigh out his formula to make sure he consistently gets the same amount of calories.

Then I add a 1/4 tsp of probiotics to the formula

Meds

This is the $30,000 per vial stuff.  ACTH a a corticosteriod and works very well at treating infantile spasms. It has a honey consistency, and is solid when cold.

The glorious Prilosec packets.  These keep Mason from throwing up constantly.

Side effects of ACTH: All day irritability, no sleep, no smiling, high blood pressure,  and high blood sugar, but IT'S WORTH IT! (only 2 more weeks of injections)

Topamax. Long term medication to control Mason's seizures. He'll stay on this for years.

2 weeks on ACTH

Some of you have asked for an update on Mason and how we're doing. My goal in all this uncertainty has been to try to be positive and optimistic and, because of all your prayers, it has thankfully been the norm for us to feel this way. As you can imagine there are some tough days. Randomly some days I'll get emotional when I see little boys running around or a baby holding her head up or a baby drinking out of a bottle or other things "normal" babies or children do. Carly had a basketball game a few weeks ago and halfway through I started crying and I had to take Mason out of the gym. I saw so many little boys playing basketball and it was really hard for me to watch.  When we found out we were having a boy I was so excited for Casey to have a little boy to play sports with. I know he can play with our girls too but I felt a big sense of loss for this part of Mason's future we were looking forward to. We don't know if Mason will be able to play sports, or be able to talk or be able to do anything normally. That has been the hardest part of all of this. People have asked when Mason won't need to have a feeding tube anymore.  This is also an unknown. We wish he didn't need one but we're grateful he has one so he can grow. Our answer to a lot of questions is the same, we just don't know yet.

Since Mason has been on the ACTH injections for the past 2 weeks life has been pretty hard for him which has made life hard for us. ACTH steroid therapy for Mason is 4 weeks long; 2 weeks of twice daily high doses and then 2 weeks of cutting down on doses and weaning him from it. We have gotten over the anxiety of having to give him the shots it's just the horrible side effects of the ACTH we're dealing with now. ACTH makes Mason really fussy and seem in a daze.  He doesn't full on cry but he moans and groans all day and night. His first few nights home from the hospital a few weeks ago he didn't sleep longer than a few 30 minutes stretches and the rest of the night he moaned.  It is the saddest thing ever to see your child uncomfortable and in pain and not be able to do anything about it! A few days last week I just turned up the TV and  radio really loud for some relief from his groans. The ACTH also raises blood pressure and blood sugar so we have a home health nurse that comes to our house 3 times a week to keep tabs on them.  I have been emotionally and physically drained. I wish so badly that my sweet little boy didn't have to go through this! On the other hand I have still been able to smile and laugh and do everything that I need to do as a mom (moms always find a way to do what they need to do!). 

 We don't have any answers to the cause of the seizures or a prognosis yet. In many children with infantile spasms the cause is unknown and prognosis is unknown as well. Some kids may respond well to treatment and then continue to develop pretty normally. On the other hand, some children with infantile spasms will grow up severely delayed. Genetic testing results will slowly start coming back to us and hopefully those will give us some answers as to why Mason is having seizures and what the future may hold to him. Thank you again for all your prayers and sweet messages and offers to help out. You all have been answers to our prayers!