Beyond Prevention

April 22, 2015

We are now back from our most recent trip to the Mayo Clinic and are slowly settling back into our routine here at home. This last trip was hard. Levi underwent 3 different heart tests and participated in an overnight sleep study. He also met with 4 different doctors. All of this happened in a matter of about 32 hours. When we arrived home on Saturday it felt as if we had been gone for at least 2 weeks when in reality we had only been gone for a few days. I will attempt to recap the trip in as few words as possible…

 

Levi had an ECG and echocardiogram done on Thursday morning. He had to fast for the echocardiogram, and considering the test wasn’t started until 10am he did really well. He also had a Holter placed that morning that he wore until the following morning at 6:30am. All of his heart tests checked out okay. This is to be expected. In LMNA-CMD (or L-CMD), troubles with the heart have been shown to start later in childhood, around age 8 or so. We are happy to report that, so far, this is holding true for Levi. We will continue cardiac follow-ups in Fargo. We feel very confident in his pediatric cardiologist at Sanford.

 

 

The sleep study did not go as “swimmingly” as the heart tests did. Levi had so many different wires and monitors connected to him that I lost count. They were superglued to his head, face, chest, back, and legs. He did NOT enjoy any part of the sleep study, and it was not an easy night. I sat by the crib in the dark, held his little hand, and sang Jesus Loves Me while the tears just streamed out of my eyes. The pain of watching your child suffer is unimaginable and indescribable. It is a pain that neither of us would wish upon anyone.

 

 

 

So that was day 1.

 

Day 2 started with a blood draw. Not the best way to wake up… especially when you haven’t slept well and you're still connected to multiple machines. Needless to say, it wasn’t the best start to the day. Kyle and Hannah then picked us up and we were able to go back to the hotel to let Levi roll around for a while. We met with the sleep doctor at 9:30am. We were told at that appointment that Levi should be using a bipap at night. This was devastating news for us. We very quickly moved away from preventative care and into dealing with the very real symptoms of Levi’s condition. It was observed during the sleep study that Levi was having both central apnea and hypopnea. Central apnea is when breathing repeatedly stops and starts during sleep, and hypopnea is abnormally slow or shallow breathing. The concern is that because of these breathing “episodes” Levi’s oxygen saturation level drops. Enter the bipap. We are scheduled to return in 3-4 months to have another sleep study done with his bipap to check and possibly adjust the levels that they have prescribed.

 

We will be picking the bipap up this coming weekend in Fargo. It was recommended that we get him used to the mask before using it at night as not to scare him. We have been working on that this week, and it’s not going the greatest. I know that he will eventually grow to at least tolerate it, but right now he wants nothing to do with it. It was also discovered at the sleep study that Levi has restless leg syndrome. Most children have up to 5 leg movements an hour during the night. Levi had numbers averaging mid-30’s. The doctor believed that this could be caused by low iron, and his blood draw proved her theory right. Iron supplements here we come!

 

Following that appointment we met with cardiology, had more blood drawn (to check his iron), and met with Levi’s neurologist. We met with the cardiologist to follow up on the previous day’s tests. That was a quick appointment (thank goodness!). The meeting with his neurologist was very uneventful. We basically updated her on Levi’s life and that was it. We will see her again when we go in 3-4 months for the sleep study. We both agree that seeing her once a year after that should be adequate. Day 2 complete. Mayo visit complete. :)

 

 

In other news:

 

-Levi received funds from an event put on by Altru called “Spin for Kids.” Those funds are being used to order him a jogging base and bike trailer attachment for his Kimba. We are VERY excited to put those to good use once they get here!

 

-We are 11 sleeps away from moving into our new home. Packing starts tomorrow! The boys are very excited about this. I will greatly miss our current yard and location. However, this new house will allow room for everything Levi needs. He will have his own bedroom very close to ours and we will convert the formal living room into a therapy room for him. We will get to work on a lift for that new home right away.

 

-We have started the ball rolling on getting him a power wheelchair! This is also very exciting news as this will give Levi the independence that he craves.

 

 

-Levi’s stander has been delivered to his physical therapist. We will have him fitted in it during his session on Friday and then they will deliver it (as it is a HUGE piece of equipment) the following week. It will be wonderful to have another position to rotate him in throughout the day.

 

-Our friends and family are throwing a benefit for Levi on May 16th in the Cavalier city park. It will be an afternoon/evening of family fun! We would love for you to come out and meet Levi. He is quite the little guy, if I do say so myself!

 

 

We appreciate the prayer so much. I know that I say “more than words can say” a lot, but it’s true. This last trip to Mayo has thrown us for a bit of a loop, and we feel as if we have been knocked out. We will get back up, but only by the grace of God and your generous prayers. I have posted this verse before, but it holds so very true for us right now. Even in our darkest hours, the Lord is near. We may not always be able to palpably feel His presence, but we take great comfort in knowing that He will never leave us.

 

 

“The LORD is close to the brokenhearted and saves those who are crushed in spirit.” 

Psalm 34:18

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