Neurology Highs and Pulmonary Lows

A lot has happened over the past few months! First, Mason is off of Sabril! We have loved Sabril in that it has given Mason seizure freedom but we're also really glad that he can be off of it now. He's still on Topamax as a maintenance med but it doesn't have as many side effects as Sabril. It has been 2 weeks since his last dose of Sabril and i'm trying not to stare at him and stress out about seizures coming back but boy is it tough.  I've always tried to be cautiously optimistic but I wish I could just get rid of that "cautiously" part sometimes! So far so good, deep breaths.

Mason had an EEG at the beginning of this week to make sure the hypsarrythmia is still gone. The hypsarrythmia, or chaotic brain wave patterns, is the worst part of Infantile Spasms. It makes infants unable to process information normally so naturally getting rid of it and keeping it away is the goal of treatment. The actual EEG recording (not the results) was the worst one yet.  Thankfully all our other ones went pretty well but for this one just about everything that could've went wrong, went wrong. First it was a 3 hours EEG which is asking for issues.  Most routine EEGs are 90 minutes tops, but Dr. Bozarth wanted a longer one to make sure everything was good.  Once we checked in I was praying and hoping that we'd get our favorite EEG tech, but no we got my least favorite one.  Mason was supposed to sleep for at least half of the EEG but slept for probably 30 minutes.  He also pooped a few times (which really bothered the tech), threw up, and the bag that his food goes into got clogged so I couldn't feed him at all during the EEG.  We made it though and the next day got a call from Dr. Bozarth that everything looked great!! Yay! Now we don't need to see neurology as often and we can move neurology from the active treatment column to the maintenance column. This is HUGE!

The specialty that is still in the active treatment column is Pulmonary. Pulmonary treats sleep issues and lung issues. Mason got cleared of sleep issues after his last sleep study came back good but over the past few months we've had a lot of lung appointments to figure out how to help Mason with his constant "junkiness", chronic cough, and vomiting. The main concern with Pulmonary is aspiration.  Mason can't swallow effectively so he aspirates a lot.  When he aspirates fluid goes into his lungs which causes inflammation, pneumonia, and other issues. When Mason can't swallow all the phlegm in his throat he gags or coughs to clear it but because his lungs are weak he can't clear it so he throws it up which also increases the risk of aspiration.  In the past the doctors have thought his "junkiness" (or loud, gunky breathing) was due mostly to reflux, but now they think it's also due to inflammation due to aspiration. Aspiration causes a constant never ending circle of sickness for Mason. The doctors have been trying different treatments, starting with the least invasive, to see what can help Mason's lungs stay healthy and help him breathe well. The first thing that was tried was an inhaled corticosteroid (Flovent), which he's still on.  We think Flovent has helped a little but nothing major. Last appointment Albuterol and Prednisone were added. Albuterol is also inhaled but it's a rescue inhalant for Asthma. The pulmonologists want Mason to use it every 4 hours to help his lungs out. The Prednisone helped Mason tons.  While he was on it he didn't throw up or cough much.  He's off it now because the doctors don't want him to be on it long term.

During this past month since our last appointment with Pulmonary Mason has been sick a lot.  He has been throwing up his feeds a lot more than usual and since coming off of Sabril he has been having withdrawals from it.  He cries a lot more than usual, and sometimes cries so much he throws up.  It is so incredibly sad. The day after Thanksgiving I had to take him to the doctor because he seemed sicker than usual.  Turned out he had a sinus infection and the pediatrician said his lungs sounded like he had some mild pneumonia. He's been on a strong antibiotic since then and thankfully he's doing better. In short this past month hasn't been a good healthy one for Mason so I was anxious to meet with Pulmonary today to find out what the "next steps" are. The appointment didn't start off great when Mason got weighed and he had LOST weight this past month. When the nurse told me I felt like I got punched in the stomach. All that worry about losing weight is back. Arg. Doctor Soares spent a lot of time talking about what we should do next for Mason.  In her opinion the best next step is switching Mason to a G/J tube.

 I talked a little bit about a G/J tube in my last post and I've been preparing for it a bit but it still will be tough. Change is extremely tough for me in regards to Mason's treatment.  It seems like when I finally get comfortable with something it gets changed.  Such is the nature of treatment with a special needs child I suppose.  A G/J tube is just like Mason's current G-Tube except it has 2 ports, 1 for feeding the G (the stomach) and 1 for feeding the J (the jejunum).  Mason will be fed into the jejunum instead of his stomach.  This helps with the throwing up issues and also cuts reflux down a lot.  The major concerns that I have with a G/J are that feeds need to be continuous through the jejunum.  The jejunum can't hand a large bolus feed like the stomach can.  Right now Mason only gets bolus feeds so we'll have to change to continuous.  This mean that Mason will always be hooked up to his pump and his pump will be feeding him at a slow drip for 20 hours a day. This is a huge change, doable but definitely tough to get used to.  Another concern I have is that the G/J tube will have to be placed while Mason is under anesthesia since the J port has a long tube connector that bypasses the stomach and goes into the jejunum.  This is done through interventional radiology.
I talked about my concerns with Dr. Soares and she said that we'll hold off on placing the G/J tube until the beginning of February and in the meantime start with continuous feeds through the G to see if there's improvement.  If there's improvement he'll still be fed continuous but he won't need to get a G/J placed.

I've realized that I really have no control over what happens with Mason. This lack of control used to give me anxiety, but lately it has given me peace. I've realized that my lack of control is a good thing.  God is in control and I don't need to be.  He knows what is best for Mason, and I need to have faith. Faith is what give me hope.  Not necessarily hope that everything will be perfect and Mason will get better but hope that I can be okay and accept God's will.   I am so grateful everyday for this perfect little angel boy who has given me so much happiness and love.  He has taught me more than I could have ever imagined I could learn.

Now for some comic relief. This story is too good not to share on here. We went to a high school basketball game over the weekend to see a boy in our ward play on the Sophomore team. There wasn't much seating because it was in a small gym so we sat right behind the away team's bench. During the last few minutes of the game Mason projectile barfed his yellow food all over the away coach's back. Mason doesn't usually projectile barf but of course right then he did. We were dying. Casey tried to wipe it up but it just smeared on the coach's nice blue button up shirt. We tried to explain to the coach but it was a close game at the end and he just looked weird at us and thought we were trying to bother him or get his attention so he just said not right now. At the end of the game the coach jumped up to shake hands with the other team and the home team coach put his hand on the coach's back onto all the barf. It was horrible. Casey went and explained what happened and gave the coach money to get his shirt dry cleaned. The coach was really nice but we were glad he couldn't see the extent of the stainage on the back of his shirt. That yellow food stains big time. I wish I would've taken a picture but I was too horrified to. It was so sad yet so funny.

Mason with his awesome sisters and amazing daddy