Thursday, December 09, 2010

Diary of a Wimpy Mom (with an all-powerful GOD!)

baby Mason sleeping

So. It has been WAY too long since an update as usual. It has been a hard hard hard few weeks since Thanksgiving week. I say hard because if any of you know anything about me, it's that I physically cannot deal very well with pain and stress... not my own or anyone else's either. Starting in 3rd grade I had my first "episodes" of passing out - it was while watching some guy's arm catch fire on video for a stop-drop-and-roll first aid class at school. (Leave it to Bri to say "Oh yum, pizza!" at the sight of the third-degree gore lol.) Anytime I was stung by a bee, or stood still for too long, or got a shot, or IVs, or sunburned, or whatever...if pain was involved, I was checking out for a while. Once the stress of repeated IVs was so bad I passed out and had a seizure too. is for that reason that I did not become a pediatric optometrist or any other medical professional (because it is not the actual site of blood that disturbs me - I can look at dead stuff all day, disect, whatever...but LIVING people experiencing pain that I can do nothing to stop?? NO WAY. FORGETTABOUT IT. You will be scraping me off the floor all day long. I have ZERO TOLERANCE for severely hurting people because it rocks everything I am so bad it literally makes me unconscious. Prolonged stress is torture...

All this to say, what a shock that the enemy of our faith (that roaring lion who walks around seeking who he can devour) has decided to go after me exactly where I am the weakest...where day in and day out I have had to watch this tiny person, my own son, who I love more than anyone can  possibly comprehend, hurting in ways I cannot even imagine, and being absolutely powerless to make him feel better. Please continue to pray for me, for physical and mental strength to be the mom I need to be for Mason and Micah, and to stand strong when I am exhausted on every level and do not want to give in to attitudes and fears and spiritual attacks that threaten to crush me sometimes.

In spite of it all, it is so obvious to me that you have been praying...just when we have felt the lowest, people have swooped in to lift us up in ways we cannot even comprehend! Our church family continues to blow us away with their generosity and love. People we've never even met have flooded us with cards. And packages. And encouragement beyond anything we couldn've imagined, and right when we need it most. The timing has been surreal, and we cannot thank you enough... it is so clear to us that God is right here with us, walking through this and showing us His unending love through His people!! I am so thankful He is...otherwise I could not have gotten through these last two weeks.

Thanksgiving week Mason got congested. BAD. He could hardly breathe. The cause of the "goop" could've been anything ... a virus (Micah had one). Allergies (he'd just started a new formula with higher milk content/probiotics). Reflux. (He started retching 2-3 times with every meal, before or after or when his stomach was totally empty, (and by retch I mean, his whole face goes beet red, and he dry heaves so loud the whole house can hear him and he chokes/gags/struggles to breathe through the afternath...we tried to suction him often to keep him clear, but that triggered more retching. It was heartwrenching is the only way I can describe it; the pediatrician gave us more reflux meds but of course that does not stop reflux, it only keeps it from burning. He had 3 seizures. He stopped breathing for one for over 25 seconds. He had another EEG which was "normal" and so they did not change or increase any meds. Sometimes it seemed like his tummy would empty way too fast and he'd scream in pain during a dirty diaper. Other times, it was like his tummy took too long to empty (especially during the continous feeds, which were only 50 mLs (just over an ounce) an hour. We still did not have insight from a GI doc who can't see us til Dec. 21. And he was still getting too hot, too fast. We wondered if he had some kind of mitochondrial issue going on due to his nervous system dysfuntcions and not being able to regulate things well.

So we tried everything we could think of. We read retching stories from other fundo parents online. We didn't find much hope for relief - many are still dealing. His surgeon just apologized, "There are no easy answers for this situation." While there are drugs for potentially helping retching, they have severe withdrawal potential too. Or they say, "do not use this drug if you have seizures." So we asked his dietician and surgeon if we could drop back his calories and speed with which he was eating. (He was getting 110 mLs (not quite 4 oz) in 30 minutes, then a continous drip at night, which he hated, and would grunt in constant discomfort as if begging, "TURN IT OFF" until we couldn't stand it and did -the audio is below);

So anyway, we went down to 95-100 mLs and let it run more over 45 minutes and stopped doing any continous feeding; now he eats every 3 hours, day and night, by feeding tube.) We asked to be switched to Neocate, an amino-acid-only formula to prevent any possibility of allergy. And we prayed that time would heal his throat so that he could swallow better and get over his retch reflex enough to eat without gagging. After about a week he indeed seemed to be slowing down the retching. We found a nifty gadget called the Nose-Frida that allows for less-invasive nasal suctioning (beats the bulb by a million!) and got us through some tough times. He could finally change positions without his eyes filling with tears and getting a case of the hiccups. And the nose/throat congestion began to ease. Yayyy!! If his throat his clear he doesn't retch as much, doesn't seize as much, doesn't stop breathing as much!

Mason has an ear infection
 Things started looking up. I was optimistic that maybe the docs had over-reacted on his seizure problem - that maybe he didn't need to be on anti-epileptic drugs after all (which themselves can contribute to more seizures and developmental delay and only should be used in cases of true epileptiform seizures). If he has the same deletion as me, and IF that deletion is contributing to his problem, it made me hope that maybe his seizures were vagal in nature (caused by misfiring of vagus nerve, due to pain (like reflux), stress, sickness/fever/heat/obstructed-breathing issues. Vagal seizures like I had do not benefit from anti-epileptic drugs - they benefit from avoiding the triggers. True EEG-proven seizures are not triggered. They just happen. Mason, because of his Dandy Walker variant, is automatically more prone to true seizures than the average Joe. But his seizures so far seem to be triggered by things, with the exception of the ones he had while withdrawing from drugs. I hope so because it is his only hope to get off the AEDs and have more chance for a normal development.

But avoiding triggers, even if it's just vagal seizures, mostly, will be no picnic. Avoid stress and sickness? We found out at Cardinal Glennon Wednesday that he has an ear infection. A bad one.

gtube feeding baby Mason in the stroller
Between doc visits at the hospital, all geared up with the feeding pump "mobile stroller unit" in action.
He's had 3 seizures since yesterday since he's sick. Today he had a seizure while simply playing "slinky" with his vision therapist. He has surgeries looming - one for probable ear tubes (no way do we want to go through a year of suffering with non-response to antibiotics like his big brother did, and jeopardize his hearing when we already know his vision is severely compromised). He has also been referred to another specialist for a possible cornea transplant to try to salvage whatever vision he may have. He may need his tethered cord released (we'll find out next week when or if). This recipe is not a good one for someone in whom stress plays so big a role in his overall health. If you could see the level of pain and distress he has to go through just to have an eye exam (because of how photosensitive he is), it would make you cry. Not to mention the ordeal of IVs in a boy with microscopic veins. Please pray for us for direction in knowing what to do in each of these situations that have no clear answers. Please pray for his retching to improve. For the congestion to stay gone. For the ears to stay clear now that milk is not in the picture. For the seizures to be controlled much better and for him not to need more drugs. Pray for us all to stay healthy (we all have viruses now). For others in our family whose developing babies could be affected by a similar syndrome, whatever it is, if it is inherited somehow, and for guidance for the docs to figure out what it is, if so.

Pray for Mason's comfort. Pray that his stress and pain is minimal. That he is able to play and laugh and be able to thrive and grow into a fun-loving little boy. That this smile you see here which he manages to summon up even through the worst of his ordeals, will be something that will become second nature..that he will FEEL like smiling more!
smiling baby Mason

Lord, may Mason's precious smile remind me that "our God is bigger than I am! Strongest of all! He is able to make the summer turn into fall! He controls all that happens...His power is plain to see, and I know I can trust Him, for with His power He cares for me!"

PS - I have to remember this even now. I just discovered Mason has a dirty diaper leak. Now normally this would just be one of those "yuck" mommy moments. But with Mason it is not just gross, it is dangerous. The poop completely soaked his dressing for his unhealed G-tube wound. PLEASE pray that the combo of being on antibiotics for ears, a triple antibiotic cream freshly applied and super careful cleaning of his site will be enough to prevent infection. His mommy is not taking this well...

Mason's Mix

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