Levi had a week of rest as he recovered from last weekend’s setbacks. He had been weaned off of oxygen yet again and was acting like his normal, sweet self. Then Thursday night rolled around and Levi’s blood gas came back high, meaning he was retaining too much carbon dioxide (CO2).
Because of his high CO2 levels he was placed back on high flow oxygen at 4 liters. And we are yet again scratching our heads trying to figure this kid out. This is the first time since the first surgery that he has struggled regulating his blood gas.
I am at the point where all I can do is toss my arms up in the air in exasperation. If Levi continues to retain CO2 he is not safe to bring home. But we don’t have a clue as to why all of the sudden he has started with this change.
Each time Levi is placed back on high flow oxygen we start the cycle of setbacks. High flow makes him produce secretions like a wild man. He gags on those secretions and vomits frequently throughout the day, making it nearly impossible for him to gain weight. The high flow makes him extremely agitated (think of air blowing up your noise intensely 24/7) and his heart rate goes up. Because of his agitation he doesn’t sleep and his work of breathing increases because he is mad.
This is literally the exact same order of events for three weekends in a row. I have even passive aggressively made a poster and taped it up in his room so each new (to Levi) nurse will know to expect this reaction to the high flow.
The only solution to this cycle is weaning him off the high flow, and even then it takes several days for him to get back to normal. Instead during rounds they typically go the opposite direction and increase his high flow (what you would do for a typical child), which essentially increases the source of all these setbacks. I am doing a lot of throwing my hands up in frustration these days as the things they see are helping him are in fact causing him more distress.
He will be having surgery Tuesday morning at 7:45 to place a g-tube and they will be doing another MLB (throat scope) to see if there is any swelling or new issues. Post op we will be slowly introducing his feeds through the new tummy tube and the goal is to be able to take out the feeding tube in his nose (NG) within three days. This is kind of our “last ditch effort” meaning it is the last thing we can try to do to help his airway. The tube takes up space in his throat so we are hoping that removing it will give more room for air to pass.
If this doesn’t work we may have to revisit talk of a trach. I am so discouraged by this as it seems that we would be back at square one, but in reality the trach would be temporary until he grows and his airway gets larger. Had we not come to Cincinnati and attempted the experimental surgery there would have been a 50% chance he would have the trach for life (something we will now be able to avoid), so I am still glad we chose the route that we did. Even though this route is an awfully terrible and long one.
I tried to catch a cute picture of him in his swing, but he was not convinced it was an enjoyable experience. And yes, he is a naturally pale kid…something that is cited often when nurses are expressing their concerns about him.
Levi’s weight is up to 7 pounds 7 ounces and he definitely looks chubbier these days. His personality is also shining through and he loves to be silly. I took this sweet video this week of him playing with his tongue and smiling.
The smiling is a new thing, and oh my goodness I just can’t get enough!
He is also clearly expressing his annoyance to things these days- this week it was aimed towards his giraffe.
He is also absolutely fascinated by my hair. He loves to grab it and play with it, as you can see in this little video:
Malachi continues to be his sweet 5 year old self. He and I are connected in such a special way, and he tends to feel my emotions even when I don’t outwardly show them. Lately he has sensed my higher than normal stress levels and will cry at the drop of a hat. He won’t do it with anyone else but me, so I am trying really hard to not let the stress be felt by him, but apparently I am unsuccessful. He will burst out crying at least 4 times a day and it makes me feel so terrible!
The patented Carroll boy pout:
I have been trying to focus on Malachi more this week and make sure he feels loved and valued as much as baby brother. He has been able to go on several “adventures” this week and we find ways to celebrate him.
Here are some pictures from his birthday ice cream adventure last weekend:
And the celebrating continued with some mid week creme brulee; turns out he is a BIG fan!
My ability to function at 100% for both boys is dwindling by the day, and I am struggling with so much guilt that I can’t be there for each of them at all times. Malachi wants his mommy, present and actively showering him with love like I have always been able to do. And Levi smiles when I enter the room and wants to be held whenever I am there. Both of them need me, and I hourly have to choose one over the other. This just isn’t how parenting is supposed to be.
Jake’s school closed Friday and Monday due to a staggering amount of illness. What a blessing in disguise for the four of us! Facebook has a feature called “On This Day” when it pops up memories from the past that happened on the same date. WHAM those memories have been hitting like a ton of bricks…as I clicked through them this week I was reminded that this is the 3rd year that we will spend Valentine’s Day in an ICU.
Malachi was in the NICU in February 2013 when he was born; I remember very cautiously posting this picture as we were still unsure as to whether or not he was going to live:
Then back to the Pediatric ICU we went the following year when Malachi developed a scary influenza pneumonia in February 2014:
And here we are, February 2018 with our little Levi in the NICU:
Even through all of Malachi’s many, many hospital stays and surgeries I have never been as emotionally fragile as I am with this round with Levi. With Malachi there was always a plan in place and goals/milestones to meet. Yes, we had small and big steps backwards with him but even those somewhat followed the typical NICU route. With Levi there is just a laundry list of unknowns that grows instead of shrinking. I am so incredibly desperate to see a finish line, even if it is still miles away. I just want a glimpse of it so I can be assured that we are heading in the right direction.
When Jake came up this weekend he brought the mail for me to start going through. I haven’t been home since November 16th so the stack had reached monumental proportions.
I sat down on the bed last night and started chipping away at the stack. As I organized the giant pile into smaller piles I could feel so much stress welling up inside of me. I opened up bill after bill, many of which were already past due. We have well surpassed the million dollar mark with Levi’s bills ($1,129,658.75 to be exact) and still don’t have any idea when we will be able to go home. My shoulders grew heavy with the weight this has taken on us in so many ways…
Then I got to the cards. I spent over an hour opening up cards from many of you and read each encouraging note. I was awestruck at the kindness and support that has been sent our way. One of the most heartwarming parts for me was seeing that many of the notes were from people I have never even met! It was a much needed reminder to me that “…your Father knows exactly what you need even before you ask him!” (Matthew 6:8)
I think about the Israelites as they wandered around the wilderness, simply being guided by God. They started to complain about their basic needs not being met and the Lord heard their complaints. He made sure to meet their physical needs each day with manna (bread) in the morning and quail (meat) every night.
Exodus 16 tells us:
4 Then the Lord said to Moses, “Look, I’m going to rain down food from heaven for you. Each day the people can go out and pick up as much food as they need for that day.
17 So the people of Israel did as they were told. Some gathered a lot, some only a little. 18 But when they measured it out, everyone had just enough. Those who gathered a lot had nothing left over, and those who gathered only a little had enough. Each family had just what it needed.
As I read these verses, the last words seem to stick out to me the most…
“Each family had just what it needed.”
They didn’t have what they needed for weeks, months, years, or 13 weeks in the NICU unit. They had just what they needed for THAT DAY.
I don’t think I have ever been able to relate to the whiny and annoying Israelites as they wandered around the wilderness- that is, until now.
Let me tell you…I am absolutely wandering in a wilderness these days. I am whiny, I am annoyed, and I am wondering why in the world God led us here. Why are we aimlessly wandering? Where is this promised land we have been told so much about? I am THAT annoying Israelite.
But yet God continues to provide…despite all of my annoying attitudes and complaints. Each day I look to Him for my manna and my quail, and each day He makes it rain with His provisions. Even when I don’t deserve even a crumb.
He gives strength to the weary. That Bible verse plays on repeat in my mind as I walk 4 miles a day back and forth from the hospital to spend time with my son. It plays when I race back over to the Ronald House after getting a text that Malachi has had yet another large seizure. It plays when I walk into Levi’s room and find the medical team making more changes in the negative direction. It plays when Malachi wakes up at 3am, ready to play with mommy. It plays as I watch them wheel my son into the operating room for the 7th, 8th, 9th time. Boy, does that verse play on repeat.
He gives strength to the weary.
I don’t know what your week may entail. Maybe you too will be in the group with me as I wander through the wilderness. But let us all CHOOSE to lean on God for His amazing and supernatural provision. Let us be thankful for the strength that He gives, even when we don’t deserve it.
May our faith allow us to continue to look to the heavens and EXPECT our manna and quail, knowing that our needs are being met by a Father who loves us.
May we continually be reminded that it is in our moments of weakness that our faith has an opportunity to grow beyond what we ever thought possible. And may we embrace that growth with open arms and hands.
Please remember Levi this week as we put him back into the hands of the surgeons. Pray that this step will be the one he needs to overcome. And pray that our hearts are ready for the winding ways this week may take us.