Another busy week in the books for the Carroll clan.
On Monday Levi and mommy headed down to Chattanooga for the dreaded swallow study. Now that his vocal cords are showing movement, doctors all want to see if he is safe to drink thin liquids. Our end goal would be to not have to use the g-tube anymore for his nutrition but that will require 6 months of us never using it.
I felt very confident that he wasn’t aspirating thin liquids prior to his cords moving so I was certain he would pass this go around. But in order to check that box on everyone’s list we jumped through the hoop and went for a formal swallow study.
I will assume that none of you have had to witness one of these studies so I will describe the process a bit. Levi is required to sit in a special chair that has a real time x-ray machine attached to it. Liquids don’t show up on x-rays so they add something called barium sulfate (a metallic compound) to the liquids to help them show up. The problem is that the barium is chalky, white, and doesn’t taste good at all.
So lots of problems with this…
- Levi sitting in an unknown seat surrounded by machines all by himself.
- Levi drinking and eating anything on command, especially when it really is a new concept to him.
- Levi drinking something that tastes disgusting.
As soon as we plopped him in the chair the drama began, as we assumed it would. He took one swig of his sippy cup but as soon as the barium water hit his tongue he spit it out and didn’t swallow anything. We then tried barium laced applesauce and he refused that too and started panicky crying.
At this point my instinct is to pick him up and run, but as a medical mamma you learn that this isn’t really, TRULY an option. If I were to leave then the doctors would simply schedule another one and hope it goes better. It isn’t something we can simply just not do. So I went into medical momma mode.
Medical momma mode is a bit hard for outsiders to understand as it really does defy natural instincts. It requires that you remove all emotions from situations when you have no other choice but to embrace the suffering. Holding your child down for necessary IVs and blood draws, forcing life saving medicine down their throats, stabbing Malachi with two injections a day when he was going through his infantile spasms.
There is so much guilt when I have to go into this mode. I hate it. Genuinely despise it. And I always wonder what psychological impact this has on my sweet boys to see their momma doing things to them that causes pain and sadness.
So I forced barium water into my crying sons mouth, watching him swallow it instinctively with each inhale for more air as he grasped for me to pick him up and comfort him. And just praying that it would be enough evidence to never have to do this to him again.
We got the data we needed and then I did my best to rebuild the trust between Levi and I. What he did drink, even when crying, went down his throat correctly and none went into his lungs so he passed the test.
Speaking of tests, we still need to do one more overnight sleep study with Levi but this time we have been given the option to do it at home. Levi is no longer leaving his oxygen tubing and pulse ox sensors on at night so he has really been making me nervous. Last night he had a quick oxygen desaturation but most nights he has been holding his own after he tears his oxygen off. We will likely pick up the equipment for that study this week and try to knock it out.
Malachi and I made the trip to Nashville late Tuesday night and stayed the night in a hotel. And don’t worry- I packed my rubber gloves and hospital grade cleaner and scrubbed the fire out of the place before settling in haha. He was so excited about our “adventure” and loved the one on one time he got without little brother picking at him.
On Wednesday morning we went over to the hospital for two appointments, one with his orthopedic surgeon and the other with a spine surgeon. The appointments were routine, starting with x-rays. The orthopedic surgeon seems content with Malachi’s feet since his surgery in November. Malachi’s hips are both 100% out and we can now feel the head of the femur bone protruding all the way out towards the back of his butt. The biggest concern right now is pressure sores from the heads of those bones resting against things. But as long as they continue to no longer cause him pain we will leave them.
Malachi’s spine is progressively getting worse and there really isn’t anything we can do about it right now. He is at a 45 degree curve in the bottom of his back but the hope is to avoid any surgeries to place rods until he finishes growing. Sometimes with kids like Malachi the curve can put too much pressure on the diaphragm making it hard to breathe. We are nowhere near that point right now but will be followed by the spinal surgeon at least once a year to monitor the progression.
So no big decisions had to be made and no hard conversations had to be had. That is always a blessing!
Malachi was really buying into the idea that it was just him and mommy so I stretched out our drive home to make it a special day for him. We went to Chuck-E-Cheese and played games for about an hour. Overstimulating environments like these are hit or miss with him, and we know that strobe lights trigger his big seizures so I was a little hesitant but thought we would try.
He made it about 25 minutes and then had a massive over-stimulation breakdown, sobbing uncontrollably. These moments are so hard for Malachi; he wants to be there and play the games but his brain just can’t handle it. I asked him if he wanted to leave and he said no so we sat in the back corner for about 20 minutes until he calmed down enough to play a few more games. Poor buddy. But he didn’t have a single seizure so that is progress!
Here is a video of him playing one of the games. He loved it!
We used the tickets he earned to get some cotton candy for he and Levi to share. He liked picking out the colors for each of them and settled on blue (for Spiderman) and green (for the Hulk).
We went a bit further down the road and stopped for a dinner date at Cracker Barrel. I ordered him his very own plate of mashed potatoes and gravy (usually he has to share with Levi) and we played every game on the kids menu together. His demeanor was just so sweet throughout the meal as he soaked in all the focused attention. After dinner he got to pick out a toy in the gift shop area and also pick out a candy surprise to take to daddy.
Malachi has been getting up consistently between 6:10-6:12 each morning, which means rare naps in the late morning if we are home. He has probably taken less than 100 naps in his lifetime so I felt like I needed to document.
It was a nice little getaway for the two of us. Daddy and Levi also seemed to enjoy the one on one time. Levi helped daddy put up some new shelves in the playroom.
Levi keeps pushing Malachi’s chair into the play room so they can play with toys together. It warms my heart and Malachi loves it too!
On Friday Jake and I celebrated our 11th anniversary! We headed back down to Chattanooga to cash in on a gift card to the Cheesecake Factory that has been burning a hole in our pockets. Why has no one told us how amazing their food is!?!?!
Whenever I have to make a medical trip or go through a surgery with one of the kids the stress of the situation completely kills my appetite. Anything I eat makes me feel queasy and that sick feeling lingers for several days. I had been feeling pretty anti-food since Tuesday morning but that delicious meal knocked me out of that funk!
We then followed through with our anniversary tradition of going to the arcade to play some games together. It is something we can take the boys with us to do and we don’t have to worry about them being too loud or not sitting still.
The next morning I got a text from the boys physical therapist offering to watch the boys so Jake and I could go on a date! There are not many qualified people that we feel comfortable leaving both boys with, and frankly Levi has not been very tolerant of anyone other than mom and dad lately. But we figured it was worth a try so we dropped them off and headed to dinner. It was a Saturday night so we called ahead and reserved a table and somehow managed to eat dinner, eat dessert, and get back to the boys in just over an hour!
It is absolutely baffling to not have the kids with us. It feels so awkward to just walk in someplace without unpacking kids and wheelchairs for 5 minutes. Jake looked in the backseat multiple times, each time panicking because the kids weren’t there.
Levi didn’t even shed a tear after we sneaked out! Baby steps.
“Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.” Ecclesiastes 4:12
One really neat thing about the Word of God is that you can read the same scriptures over and over again and have God reveal something new each time you read it. His words are LIVING and ACTIVE!
As I read that scripture this week I felt chills overwhelm my body. I have heard this analogy and verse several times but for some reason the words roared to life as I applied them to my marriage.
I have told you many times about the staggering statistics that surround the marriages of parents with special needs children. The odds are most definitely against us, and when I see the stress level we are forced to function at I see why so many marriages fail.
When I read the Bible I do so keeping in mind the intentional nature of God when he had the authors write each verse. I read the phrase “two can defend themselves” and recognized that as Jake and I apart from God. We can fight for our boys, we can guard them from the world that continually threatens them. We can swing wildly and defend well. But we simply cannot overpower.
Our life requires the cord of three strands. It requires Jake and I asking God to intertwine himself in our marriage, in our family, and in our day to day struggles. God cannot simply be one aspect of our lives…He has to be in EVERY aspect of this crazy life for us to overpower.
I am so thankful that God aligned our paths all those years ago, in a meeting He most definitely orchestrated and ordained. I pray that we always see the cord of three in our marriage and cherish the presence of God in our family.
Thank you all for your prayers of protection as we traveled this week and tackled some big appointments. We are looking forward to a much quieter week with just a handful of routine appointments.
And one final note- we still haven’t seen the bear so I think it is safe to say he moved on. We have had lots of visits from the neighbor dogs, cats, and Hank the pot-bellied pig but no bear.
Earlier this week some people in our town noticed two baby bears that had been abandoned by their mother. They got the right people involved and the sweet babies were taken to a rescue where they are receiving treatment and nourishment as one was just a meager 4 pounds.
This is the baby girl that they named “Dandelion”. I thought you all might like seeing a photo.
God bless you all this week,