“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”
Quote by Elizabeth Stone
My heart is feeling rather heavy and somewhat squeezed right now. It is full though and walking around in the hands of some pretty special little people.
I always pull the different holiday themed books out as each holiday approaches. We looked at some vintage ones and new ones and it was so obvious how the images have changed from days of old.. It used to be all about allowing yourself to be a little vulnerable while letting others know you care in simple ways. A handmade card or sentimental tune. Now it is sooo commercialized and all about the things people buy, the pressure to spend on a huge date nite or fill your kids with insane amounts of sugar. Cut to the soft lyrics of Oliver Twist's "Where is Love" ...but seriously.. where is the unadulterated, pure and simple.. Love?
It has been a tough weekend and days like these are hard to put into words. We are trying to get through a bump in his health picture.. It all set in on Friday when I was chatting to a friend while doing dishes and Sam had one of those serious, color changing, heart rate diving, episodes with reduced oxygenation levels to the 70s. I had to go into that adrenaline enforced "Go" mode. There have now been multiple episodes of that over the weekend and this is the stuff that usually lands us back inpatient at Sacred Heart. You never get comfortable with having to act that fast and worry that much... You don't sleep. Your heart hurts in those moments and it seems like God is the only one who knows how scared you are. Sam has my heart in his little hands. I hate watching him struggling to breathe and the transitionary periods make it even harder.
I am learning that when he starts having more bradys, more often, it is usually the first sign that he is being taxed by something..a cold or some other issue but it is hard to know what my next steps should be. If he is looking ok then I don't want to go hurling him back into the hospital so I sometimes slip into denial that anything is lurking. I have to find ways to keep him strong enough so that we don't end up in the hospital over a small cold. The central port for fluids could help and home nursing would be instrumental... but I am scared of another surgery, especially with no nursing in place at home.
So Friday's incident was just the beginning as Saturday brought difficulty breathing and more discomfort, fever and most importantly many d-sats of low oxygen levels (with and without heart rate issues). We ended up in the ER at 4 am Sunday morning. I hated to call my pediatrician at that hour but Sam was struggling so much and I just did not know whether to risk it getting worse and having to call 911. We had already had to put him on 02 and were deep suctioning constantly but getting little or nothing out. At the ER, he of course soon started smiling and making a come back (the most frustrating thing when you just spent the last 10 hours feeling like you might loose him at anytime and then have to explain how he was different 30 minutes before).We have been told this is common with mito kids..so we are supposed to have a protocol letter so they understand that he can have transitionary moments and then WHAM you are back in the thick of it.
So he seemed better and they ran some labs and hung a bag of IV fluids. I was so excited that they got a vein but then it did not last long as it blew and his arm doubled in size in a matter of a few minutes. The sats were great but as we packed up to go home things were taking another turn again. By the time we were home he was back in trouble and had a few d-sats to the 70s. I decided to video the distress mode and email this to the Dr for advise. We knew we could go in to the other hospital but we were more hesitant and wanted to avoid it if we could keep him comfortable and safe at home. About that time I realized I had a really painful eye that was getting redder and redder... pink actually..Pink eye for the first time just in time for Valentines! Great timing with Sam and everything else.. SO that required an excursion out for $79 antibiotic eye drops (don't ask..still no answer on insurance application). Things always happen all at once. I think I am a bit run down and lack of sleep is not helping me.
Sam is hanging in there and has had bouts of episodes mixed with puny moments and the usual concerning symptoms. He has a distended belly but so far we have kept all pedialyte and feeds in him. He is clearly not feeling very strong but if his GI does not shut down we hope to avoid going back into the hospital. I miss that sweet Sammy smile below from last week.
Two little girls were very excited about giving out their valentines and wearing favorite color pink to celebrate.
Valentines morning was particularly hectic on us all.. I had a million little V day party goodies etc to get delivered with the girls to their schools and could not imagine how to do it with Sam in tow. Thank you for friends who meet your car and walk your kids inside.. Why do we go to such trouble over the school parties etc? I love it and hate it at the same time. It was so wonderful to have cupcakes bouncing around on the plate next to me, getting smushed by the lunch boxes and teacher gifts but I can't say I didn't feel all warm and fuzzy when Bella told me my cupcakes made her feel special because everyone liked them at the party. On top of all the extra "stuff", taking Sam meant also lugging the feeding pump, bulky pulsoximeter, apnea/brady moniter and the oxygen tank. Yowsa. We made it though. Late.. but everyone arrived alive.
Then Sam had a Dr appt and they found an ear infection to add to our list..it was a day. But in the the end, I was thankful for loving friends, sweet valentines from the munchkins and a husband who laughs about the obvious difference between valentines of years past and the present. Our love is stronger for facing these challenges.
I was happy that I had the chance to attend Isabella's field trip to the local hibachi restaurant for a "round the world" kind of experience last Friday. You never saw so many lttle kids in little kimonos excited to see the chef make fire.
The only hard part was Jason had come home to watch Sam for the hour and he had just had the big brady episode.. how do you not take that worry with you and just enjoy your daughter's field trip?
I am thankful for much this week.. my loving mother who brought our Valentines a little early. She is so thoughtful and supportive. She wanted us to enjoy a V day treat even if we could not leave the house for it. I am also thankful for my mother in law who attended Bella's ice cream party at school today so she would not be the "only person without their family there." She was so excited to have her Yamma in attendance! And last but not least, I am humbled by the extreme kindness of our friends who brought dinner last night and dessert and wine and hugs. Thank you for always being there. We are so blessed by your friendship.
Overall even amidst recent stress about Sam's newest bout of illness, we are doing ok and our hearts are full of joy. We have sooo many blessings :) Happy Valentines to all families everywhere.. Forget the fancy schmancy stuff..Just count your blessings and tell those you love how much you care!
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