Sunday, February 27, 2011
Friday was a busy and emotional afternoon.. Sam had a cardio appt in Pensacola that we had to leave for by 6:30 am after doing all his meds and getting all of us dressed, feeding pump primed, lunches made, paperwork gathered..a general nightmare of a way to start the day! It is about an hour drive to Pensacola but I sometimes forget rush hour traffic patterns can make it even longer. We also had to see the pediatrician as well in the afternoon.
Somewhere in between I found 5 seconds to meet with the ronald mcdonald house charities regional director about helping them with their caps for kids campaign. I will do a more detailed post in a few days but if you are interested in an easy way to support an organization helping so many families with children in the hospital, you can join us by letting your employees wear a cap or t- shirt supporting the caps 4 kids cause on the 27th of April (The cost is only like $12 per shirt or cap or $20 for both) and then they get to come to a special after work party to celebrate everyone's efforts. It is a sure win-win as employees will love the chance to wear something more casual to work while each shirt or cap will also allow a family to stay a night in the RMH house at no cost while their child is in the hospital.
This is a tremendously important cause that is very near and dear to my heart since the RMH was my home away from home for many nights and actually a month long stay as well. I have stayed in 5 different RMH houses over the last year at multiple hospitals. I can't put my appreciation into words properly. It was a place where my kids came on the weekends. We could actually sit around a dinner table to eat and pray together. It was a happier place than the walls of an ICU for those times when I just needed a break. It was a place for doing laundry and taking a much needed shower in peace. Most of all it was a place where there were others feeling the same vulnerable feelings that we were experiencing. Support the Ronald McDonald House because it is one of our best examples of a community effort that actually makes a tangible difference in people's lives. If you need more info on how to help, leave a comment, send me an email or call Jason's office at 850.609.2516.
SO in other news..I had my first bout of pink eye recently when Sam was sick a week or so ago and amidst Friday's chaos, I realized Sam seems to have it now too. UGH. We later found out it looks like whatever bug we were all fighting (most likely Sam's otittis ear infection) was the culprit. Bella was home for a couple days too this past week with 100.2 fever in late day and no symptoms, so I am guessing she was dealing with that same underlying bug.
At his cardio appt, Sam had another echo and EKG but all looked fine with heart function. He still has the PFO (hole in his heart) and shunting (blood passing from one side to the other) but this is not a "big deal" right now and not causing his problems. They still feel rather certain the sinus arrythmia he has is caused by autonomic dysfunction and hypervagal tone also known as dysautonomia. Dysautonomia is a major disability for some people and as my Dr explained, if it was our only problem, the pacemaker would be the way to go.. but Sam is tricky with his other Mito issues.
Invasive open heart surgery for pacemaker placement in a baby means it has to go against the heart which could be too much for his stressed system which I worry might lead to neuro, developmental or muscular regression not even to get into the risks of infection, GI shutdown etc. In Atlanta, when he was considered for the pacemaker, they pretty much put it in our court. He was being so good with hardly any misbehavior so they said we could try to stick with the meds and keeping him as healthy as possible since he seems to have major increase in events when sick or under duress. We opted to hold off but the day may come when we just have to do it. We are also weighing out the mediport that we were supposed to do last month but have been scared to do for the added infection concerns it can bring. I think we may be leaning towards getting it scheduled soon though as it would be our best bet for infusing him with electrolytes and fluids in heading off more illness. Decisions like these scare me..but if it wasn't this it would be something else, right. As Dr. Bailey put it so perfectly in one of my fav episodes of greys anatomy, "We're all scared!! If you're not scared.. you're not paying attention!!"
At the appt, the echo looked fine but we are now back on an arrythmia event recorder for a month. He had 2 drops just last night but neither was what I call symptomatic. Those are the worrisome ones where he actually grays a bit and seems not with it and then the more self corrected variety. So we have a new appendage. The poor kid is like a puppet on a string now. TOO MANY WIRES! They just want to take a look at our current status on his bradycardia events and also moniter for the strange Tachicardia we had last week when out of nowhere he sported a 256 for a few minutes. He did not look so good and his cardiologist said this is something we need to watch. If it stays that high over 5 minutes or is even less than that but is still elevated during an illness, he needs to be inpatient. This could be a sign of some new symptom or maybe it was a fluke..either way his heart should have stopped any messages telling it to jump that high. I am praying it was nothing. If not, there would be new issues of treatment since he is actually on a med for the bradycardia which keeps his heart rate up and lowers vagal tone. They are not adjusting that med right now since he is still the same weight as when he started it back in September. The treatment for high heart rate Tachicardia would be to actually encourage the vagal responce we have been downplaying so we get a lower heart rate. Sammy.. could you be any more complicated?
On the way out of Nemours, we ran into a little girl we first met in Gainesville at Shands Hospital..a complicated little girl with serious heart defects. Her dad is in prison and although the mom seemed to be very young, uneducated, and unprepared for motherhood.. she clearly loved her baby and wanted to turn things around. I prayed alot for her in the hospital and it was really nice to run into her in that lobby and see this little girl who has now been through 3 open heart surgeries and a long fight for her life, still fighting. She has a double cleft palette and is very tiny. In that hospital room 10 months ago, her mother confided that she was told her baby would not live to see her first birthday. It seems she actually reached it two weeks ago. I hope the road ahead is easier for that sweet little baby girl.
The other emotional part of Friday is that we may have found out some news that will make it maybe possible to get back the nursing care he needs... I don't want to jinx it but I am holding my breath.. hoping and praying this is a turning point. Hope to know more soon. In the meantime, we have a neuro appt tomorrow morning and will meet with the nursing company to do paperwork in the afternoon. Later in the week Sam will meet with an equipment vendor during his physical therapy about some special needs equipment to help get him more vertical.
I am thankful for so much. I love my sweet family and our friends and all the gifts God graces us with daily. All any of us can do is be thankful and take it one day at a time.
Tuesday, February 22, 2011
All the signs of spring are popping out a little early this year. There is this calming early morning sound I can hear outside..some kind of bird I guess but it echos with a hoo hoo type sound. Gives me goose bumps.. reflections of spring.. a very southern spring morning type of sound. I can almost hear my grandmother's screen door creaking open and the smell of bacon in the kitchen. New flowers and the feel of damp dewey grass under your toes. I hope this weather will continue but I dread the coming heat of another Florida summer.
This weekend Sam was able to catch up on some much needed rest while I was fighting off my own cold and general malaise. I think I just let myself get too run down last week and I needed a few down days. Jason was the heavy with the girls, taking them to the beach and spending time in the back yard cutting back the weeds that are threatening to engulf the fence. This week has some specific stresses weighing heavy on us and I am just hoping it all works out.
Sam has some specialist appts coming up as well. Always praying for solutions. I think the biggest one leaning heavy on me today is his weight. I know they told us to throw out our growth charts but Sam is at the same weight he was at back in september and yet we are feeding him all the time. Is it just running right through with little or no absorbtion? Should we change gears on his formulas or is this just par for the course and nothing will change this? I plan to discuss it with his Cardio, Neuro and GI this week and next as our pediatrician just does not seem to have any answers. We need a peds nutritionist who understands mito dysfunction but we there are no nutritionists for peds in this part of the state. I am getting concerned that we may need to look at a trip somewhere else for more advise. I don't want to wait till he has wasted away and requires full time TPN or something worse. I am not sure if that would even help anyway. SO..praying for answers as always.
A friend called late yesterday and invited the girls to come over and have a playdate. It has been quite awhile since we got together with any friends so they were pretty excited. The weather was fabulous! I was worried about whether Sam could handle a few hours outdoors but he amazingly napped and watched everything from the sidelines quiet and contently. He is usually very good that way. He does have his fussy moments but nothing like what the girls would do at this age. We have actually grown to appreciate his fussy periods as it really indicates he is emotionally quite appropriate. I think his biggest issue is communicating the frustations and joys of daily life. His laugh is soo faint and hard to bring to the surface but his smile and laughing eyes say it all.
The speech therapist says they have this recordable big button that we could use in his crib to train him to hit it when he wakes up. It would have some saying like "Good Morning Sunshine!" or "Mom, I need you.." With repetition of us hitting it when we find him awake, he should learn to hit it himself and alert us. That would be helpful. In the meantime, he is rather quiet and when he does voice anger it is one irritated grunting sound of EEEEh. The speech therapist was pleased with that actually and says she thinks he has used D, M, N and T as well. We know he has DA DA down as he uses it from time to time when he is feeling vocal.
So the weather was so nice..it was one of those memorable kind of days. I took these with just my cell phone in black and white but I thought they came out nicely and captured some sweet expressions. Black and white is very symbolic for my mindset right now. I have really dark moments full of worry and anxiety mixed with these really bright white moments of hope and appreciation for the little things. I know that in the end the, shall we say "colorful" stuff is not that important. The colorful stuff are the things that used to be paramount in our daily life. I just need to focus on the basics.. sometimes that brings out the clearest picture, where nothing competes for your attention.
I was thankful for a relatively normal day enjoying some friends and nice weather..can't believe I am ready to pull out the shorts already!
Friday, February 18, 2011
Sammy is doing better, making a comeback after a really miserable week. The days following one of his "crash" illness periods are always a strange phase for me. I find myself very thankful and I value each little smile and am so appreciative that he is breathing with ease. At least we avoided another inpatient hospitalization..knock on wood. I am keenly aware of how easily we all take for granted the special and unique gifts God has given us each day. No matter how many times I tell myself I am fully appreciating life more now, I still find a new level of appreciation when he recovers from each illness. Sam is still having periodic heart rate rate drops and d-sats. Slowly his smile has returned though and he is showing more interest in general interaction. It is a slow process of recovery each time on limited energy, as it is for anyone who has been sick..just more so for him. Some of these illnesses cause regression of skills. We work so hard in therapy and then to have one cold set us back weeks can be tough to swallow.
My Sweet Little Boy..tasting of chocolate pudding..
With the help of his sisters, Sam quickly began engaging and playing again, holding toys and wanting to be held and cuddled. He really looks up to them! One tough part of the last few weeks was noticing he sometimes was struggling with reaching and grabbing at times.. sometimes there is a shake to his hands. I know I should not over-analyze it since he had just been through such a taxing weekend and winter season, but I can't help wanting to bow my head and cry with the worry sometimes.
I watched him sitting there through dinner where I put a sample of spaghetti in front of him but after unsucessfully reaching out and not able to get what he wanted, he decided to just watch us eat the rest of our meal quietly. So I tell myself..well, he is not feeling messy tonight. The girls would have had the spaghetti noodles in their hair and on the walls by the end of that meal at his age.
Later he layed quietly on his mat while Jason and I discussed the details of our day. He never makes a big fuss, just content to fiddle with his rattle and smile when we make eye contact. If you have limited energy to spare I guess you learn pretty quickly not to waste what you do have on being cranky or needy. I just have to hope that his disposition is not signs that his brain is not getting enough energy to keep growing at the necessary pace. I know how it effecting his muscles and movement and GI and heart rate etc.. but the brain is a more mysterious place. He is sooo social and so all the Drs say they are encouraged by that.
My goal for the week is to slowly get back to our old pre- health crisis routines and push him to try some new things. He eased back into doing his PT today. Slow and steady wins the race I guess. Again we discussed future equipement needs like a stander apparatus and possibly an activity chair of some sort. The durable medical equipment rep is going to meet with us soon. Not going to allow myself to worry yet about how we will pay for that stuff.
I am trying to get back into handling some of the communications/ marketing for Jason's business. Every time I get started, Sam gets sick or we are a bit over scheduled. I am excited about having set up a seminar for next Tuesday with a local support group for him to discuss special needs trusts and estate planning, guardianship for parents of children with special needs. It never occurred to me that this area of his practice would effect our own family one day. There are many families adapting to this new role of parenting a child with special needs. Many people are unaware of how their own death could effect their child's access to disability and other needed programs or how to properly make sure their long term needs are provided. There is much to consider for ensuring a secure future for them.
We realized this year that if something were to happen to us, it would be a more complex issue on how to direct Sam's care than what we already layed out for the girls. It is important for all parents to lay out a plan arranging for how your children's care and the family's assets would be handled in the eventuality of their passing. I hope to see this as an area of Jason's practice that allows us to reach out to other families and support groups facing the same uncharted territory that we face daily with Samuel.
I have quite a few prayers to lift up tonight. The first is for the family of one of the other Mito children (Abigail) whom we have grown to know through the blogs. Recently, they lost their son after a preterm delivery due to complications late in the pregnancy. Already coping with the serious complex medical needs of one child and raising their other children, this family needs our prayers. I am praying for different members of my extended family with health concerns and my sister with a big move and a full plate right now. Prayers of thanks that my other sister got through a bad stomach bug overseas alone with husband deployed and a baby.
The other prayers on my heart are for other children in the hospital this week battling infections, cancer, illness and awaiting transplants. We have met some of them through networks online and actually share physicians with a few kiddos. Somehow it doesn't matter that we have never met. I am carrying their little ones in my heart because I know what those moms are feeling. It is so unfortunate to me that it took my own son's health issues to wake me up to how many families are out there with children fighting for thier little innocent lives. You don't see them in your daily life but they are there.. and it is not as rare as you may think. They are all the sweetest little angels and you can see the love they have in their families with communities surrounding and lifting them up. I am sending up prayers for wellness, comfort and getting back home to their loved ones.
One last thought before I get some sleep..I went to upload this cute pic of Sammy in his new red shades and all I can say that crosses my mind is the line from Amazing Grace. "(I) was blind but now I see.." I think I always thought of that line in respect to the story of Jesus giving sight to the blind man but it has more meaning for me recently. I have been so blind. Blind to what matters in life. Blind to what my fammily could face. Blind to how I could be a better person and mother. Blind about what my faith should do in my life. I am only now in my thirties finally able to see certain things more clearly and I am sure I have far more to see. It is like with our newborns... We are told when they are born that they have very limited visual depth but over weeks and months they grow better at seeing color and demension and at a greater distance. It has taken me a very long time but I think I am beginning to see more clearly.
Monday, February 14, 2011
“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!
Saturday, February 5, 2011
This has been a real seesaw of a week as usual. However..though it is dark and rainy following yesterday's collossal winter storm, I actually feel rather at peace this morning. Sam is quietly sitting with his dad watching roman history on the tube, the girls are having coloring time in the playroom.
Bella was star of the week in her class this week which meant I was invited to bring her class a special snack and read to them. This meant Sam had to accompany me to the school. I was concerned about shielding him from catching some kind of illness but what I did not account for was how he would react to the change from being bundled up for the very cold outdoors to adjusting to the heat of the classroom. It was warmer than we keep our house and due to his autonomic dysfunction, he does not regulate his temperature well. He immediately started getting blotchy skin coloring, red eyes and breathing rapidly and stressing out. I was stripping his clothes down but he was full of panic. He is so quiet and in that way.. it can be hard to read him. He does not cry like other babies do. He fusses, frets and arches his body with little grunts. Eventually after a walk outside, he calmed and fell asleep but I felt bad because I know what I witnessed was the beginnings of a metabolic meltdown. The rest of the school visit went well and Bella was sooo happy to have me apart of her day. For that aspect, I was so thankful I could be there.
We finally got a conversion health insurance policy number for Samuel which is good as the huge hospital bills were rolling in during the interim. The new one is ridiculus expensive and the rest of us are not covered yet while waiting for answer to our application. Alot of meds and specialty formulas have not been covered unfortunately and we are in the midst of a fight to get those covered.
This week Sam had a reevaluation by his therapist team (0-3 early intervention program) with a new plan. Even as they have huge changes limiting most people's access to multi therapies, Sam will be still getting each seperately (thank you Lord for this blessing) as he is in a higher level of need. There are some changes but overall it will still be complete coverage headed up primarily by his physical therapist who is absolutely wonderful. We will be backing off alot of the oral feeding we were trying as it was his mito docs opionion that he was being overly taxed, was not ready and would become aversive.
They think he will need more equipment in the near future which makes it all the more real that we are in an uphill battle. They said we may need to utilize a stander soon as he is not bearing weight on his own and never really has before. He still does not move his arms into position when on his belly to push up. He does lift up his neck and head when you set him up on his arms. He does have some kind of tremor or nervous movement that we are noticing in his little hands from time to time and shakes his head back and forth alot. Many of his nurses think this is a cute "no" that he is communicating but when I find him doing it in his crib hitting his head against the bars in the dark it feels more worrisome. He does now hold a sit for short periods when placed in a sit but is no where ready to get to a sit on his own. Baby steps for our little man but we will eventually get there. I have faith in that.
The end of our week was a solemn goodbye to a very kind man, my close friend's dad. He has long been fighting for his life and now he can finally rest in peace. I am so grateful to have known him. His family is in my prayers as they cope with this loss. I found this poem on another blog. It is so true and we all need to remember this when facing challenging periods in life.
When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,