I am not sure why I am blogging today as I have no time and am flooded with a million to-dos but I guess I need an outlet. Late in the evening, I have been trying to work on a little photo video project of Sam's first year and honestly I am having a hard time getting through it. I am a total emotional mess. I look at his sweet face on the day he was born and I think... what a nightmare it all was and yet the most beautiful little man came into our lives amidst traumatic events. I can't let go of the anger I have about the events leading up to the birth. The very complicated pregnancy and how my Dr kept saying everything was absolutely fine.. I know I have to let go and that God wants me to do that. I need to process these rough feelings and in some ways, I need to allow myself to grieve the transition we have been in this year to where we are moving forward with a positive and hopeful attitude for him. It is just easier to say it than to overcome it.
Sam slept most of the weekend and although he initially had a rough time with the introduction of the MCT oil to his diet, he seems to be handling it ok today. Praying he has gained by the next appt tomorrow. His little diapers are seeming to get bigger on him and I realize they are not growing..he is getting smaller. He has not been able to hold the stance on hands and knees as he did for the physical therapaist the other day but it gives us something to work for. He sat in his little bouncy seat for a few minutes during my impromptu garage sale saturday morning but as it warmed up he seemed taxed, eyes getting red and showing fatigue and so he went back inside. We are supposed to have nursing care start with full time day coverage and weekend nights soon but they are having trouble getting it staffed. One of their issues is that all their nurses are smokers..crazy insane! I have to set limits though and he could not handle the smoke he smelled on a therapist's clothing and it nearly put him over the edge every time she walked in our door so I am going to listen to him on that one. His mito Dr said smoke is a HUGE problem for mitochondrial production.
In an effort to get my mind back in rainbows and sunshiney places..I am going to try very hard to tackle a few big home projects this week. I feel like alot has been allowed to slip through the cracks this year and the cracks are beginning to show!! I need to put more work into my new years resolution of shedding out the clutter in my life (physical and mental)so that is the name of the game this week..after we tackle therapies, Dr appts and all the normal craziness! Well better run get my kids from various schools... The day is gone in such a blink!
Monday, April 4, 2011
Friday, April 1, 2011
Answered Prayer
If you saw my facebook post this week, I had this sweet moment with Bella. She came to me in our backyard. She said, "This is for you, mom. It's us, your 3 hearts!" It was one of those squeeze em tight and hope they stay like that moments.
We had a big prayer answered today. Private nursing at home. Let me rephrase that to say.. full time private nursing at home (for however it lasts) 11 hr days and 8 hr nights. Finally. Finally a chance at accomplishing some normal activities and focusing on more than all the medical stuff surrounding Sammy's daily needs and intense demands during crisis periods. I love nurturing him and being there for all his extensive needs, even during the hard times, but frankly I am so exhausted sometimes and there are other parts of our life that have disappeared or require more attention.
What will the nursing free me to do? Hmm..
1. Work - contribute financially or be able to support Jason's business.
2. Get involved - with my girls on a closer/ less distracted level.
3. Sleep - what would 8 hours straight feel like?? shoot - 4 hours on my bed already feels like heaven over a pullout hospital couch for any period.
4. Turn it all off - Not always have to be "ON" or locked and loaded as we put it..ready for any crisis that might take place unexpectedly..because if Sam is in any way predictable it is that he is always unpredictable in falling off the metabolic cliff of sorts.
5. Get Organized - collect myself a bit. I feel like all the interruptions of routine that have taken place in life have left me scattered and cluttered. I am doing better at my priority resolutions..but need to do more.
6. Reconnect - with my husband. Maybe actually have date nights in our future and not have to beg, borrow or steal to convince family that he won't die on them or require resuscitation measures in the 2 hours we are away. They might be able to only take the girls and he would have the nurse.
7. Enjoy Outdoors - Not worrying if we will pay for it after a taxing stroll round our street earns us a trip to our local ER with basically mutisystem breakdown over a little heat.
Most of all..
8. Enjoy Samuel for just who he is..not a medically needy, chronicly complex little science experiment but our little boy, who needs carfree bonding time with us when we can snuggle up not overly exhausted from the methodical measuring of medications, setting of pumps and responding to alarms - big and small. Not feeling the negative effects of constant periods of racing adrenaline in your bloodstream while intervening during crisis. It is toxic to our health, but also to how we interact with him. He is not a priceless glass vase. It would help if we could sometimes forget the medical..just be mom and dad. That is why when we had nursing before for only those 2 short weeks (60 hours) prior to and following the last hospitalization we had this tease of an experience and such a short glimpse at what life could look like if we had some relief. I hope this time will be more longterm but for now I am just sending up my thanks to God for answering this prayer. I spent the day filling out paperwork and meeting one of the nurses who seems just wonderful.
I am also sending up prayers for a friend who is going through a tough time emotionally right now while at home with her kids with her spouse away in rehab for personal concerns. I know she has had to be a rock for them all for so long and is at a real low point this week. I hope God sends an angel to hold her up and show her all that is right in her world. Her sweet children and supportive family and friends. I hope God whispers in her ear that she is not alone and has a multitude of soldiers in his ranks standing by to help her through this. If I have listened to anything God has shared with me in those quiet moments of prayer it has been that none of us are alone on life's journey and that he may not be able to right the road you are on or make it perfectly easy to walk on.. but he will make sure that the road ends where it should.. eventually.
To recap the last week, there were lots of highs and lows for all of us. After Sam's ER trip and shots of yet another antibiotic for the ear infections that would not respond to tons of antibiotics and seemed to bring on the rest of his issues, we had a seemingly full recovery of the infection with shots of rocefin directly to the bloodstream!! YAY! However, we did have some concerning news in that Sam continues to lose weight even having returned to his full diet and caloric levels. He gets roughly 700-800 calories a day of formula in his GJ tube in the course of one day that is fed at a slow rate of about 45-55 ccs of beefed up 24/cal/oz formula for about 19-20 hours a day. He now ways a little over 15 lbs and was 8 lbs at birth. He weighs less now than he weighed in August of last year. He is 26 inches long and was 19 at birth. He is proportional looking in appearance (no ribs showing or anything) but is going down in clothes and diapers a bit even having only lost about 1 lb. He is not on the growth chart by any measure at over 1 year of age now but we threw that out awhile back. The perplexing part is that kids do usually slow in weight gain at this age but usually because they are running or cruising around burning more fat and building more muscle mass. Sam spends most of his life asleep and laying down.
It is due to the weight loss and stagnant gains that his Dr called for addition of a new supplement to his food. It is called MCT oil and is a medium chain triglyceride, fancy name for a type of fat that is more easily digested by the body...or so they say. Apparently Body Builders are big users of this particular product. He is his father's son.. The idea being that if for some reason on a cellular basis, Sammy is burning through an insane amount of calories and needs more, this might infuse him with more calories that don't increase his volume of intake. Basically the intestines can't take much higher rate of food or more volume so this is more concentrated.
(Reader Beware: poop-talk coming down the pipe)
However... MCT oil has been known to cause diarhea and mal-absorbtion syndrome since it can coat the intestinal walls and make them slick and less likely to absorb nutrients, which if you follow my ramblings, you know is something I already worry is taking place on another level. I have seen how well he absorbs things put right into blood stream (TPN and meds etc.) and wow what a quick responce we see. I worry about making a bad GI even more complicated. Sam rarely has formed poops, rarely even poops period but when he does they tend to be loose. SO.. when his Drs say he is often constipated I have to correct them and say that it seems more dysmotility than actually a blockage or back up situation requiring more fiber/ fluids. SO..we had big decisions about trying this new solution and made the call to proceed. Well.. we started it tonight and he acted in pain minutes after I put it in his tummy (left me wondering if it should have gone direct in intestines like the food?). He did finally settle down and go to sleep. Hope it puts some meat on my little man. We go Tuesday for a followup on this to check weight and GI status. On another note..remind me not to run into people in the waiting room there and even slightly try to explain answers about his status or prognosis...end up feeling like crawling in a cave.
ON a more exciting note.. Sam has made some PT and OT progress. He tried new moves with reaching across midline for toys and reaching out of his arms reach to maneuver his body to get where he could reach something he desperately ached to touch. He is showing good endurance during his therapy sessions, but then is still tanked most of the rest of his day. The biggest step forward though was this morning, shortly before we heard the nursing news as the therapist placed him in a doggie type postion on knees and hands. Usually he would kinda be a spaghetti noodle and not work to tighten up and hold himself. WELL NOT TODAY! He actually held up his body carriage himself and looked around too! This from a boy who hardly can pull upper body off the mat during tummy time! I was amazed! It is crazy to me that he might just figure out how to crawl before he figures out how to get into crawling or sitting postion. I, of course, grabbed the trusty camera and here is the exhilarating moment of accomplishment.
What you can't see is his therapist and I squealing in delight at this show of strength and perseverance. He was working soo hard and putting every bit of himself into this, which is also hard to capture in a quick photo snap. It is these moments that I wish I could sign, seal and deliver to every nay - sayer I have met along the way who discouraged the hope for our little fighter's future. Love to see him brave new territory.
Life sure is a CIRCUS! (Ness - thinking of you and our circus year!)
As for the girls, this last week was spring break and they had some great times, even amidst Sam's recovery period. We had a few very memorable playdates and the inaugural swim, kicking off the warm spring and summer seasons. Sofia returned to school and had a circus program intended for dad's to enjoy. She was a pretty cute little acrobat in my most biased opinion! I am going through a can't-get-enough-of-her-curls phase! I would easily trade those in though for less drama and driving me mad moments! Ha Ha. Thank you Lord for forgiving my less than graceful moments hollering at her over unbuckling her seat belt 50 times on the way to the grocery store.
As a last call, I am finishing up the collection of orders for T shirts to be worn to support Kaps 4 Kids on April 27th raising funds to "share a night" for a family at our local Ronald McDonald House. This is the home for families of seriously ill kids in the hospital. It was our home away from home during some hard times at 5 different locations. The house is fully independent and not run or financed by McDonalds, contrary to popular belief, so these funds make it possible to reach and touch many families like ours. The shirts or hat or visors are $12 and if you get a hat and shirt it is only $20. That one shirt means a shower to another mom whose baby is in a NICU on life support or a place to pray for a dad whose child is undergoing chemo or surgery. For us.. it was a place to reconnect and share a meal as a family on weekends when my girls could come. Call me if you want to help support this worthy cause. Local businesses support it by letting their employees wear the shirts as a casual day on the 27th of April and there will be a pre-party event at Scullys on the Bayou in Ft Walton Beach on the 20th to celebrate your support. I do need to drop off the list by 2 tomorrow (april 1) and funds by the 7th. You can email me at afewnegron@cox.net if interested. Thank you for all those supporting this event.
God Bless and I can't say how thankful we are for the prayers that have paved the way to good things in our wake this week.
Tuesday, March 22, 2011
What a year!
What a week or rather..What A Year! After a most full week celebrating Bella's 6th Birthday and Samuel's 1st birthday, a goodbye visit with my sister and her family of 6 before they leave for Belgium, Samuel's long awaited baptism, a field day at Bella's school, st pattys day, and a rather big shift to a new pediatrician and then ending on a most foul note with a turn in Samuel's already precarious health for the worst and spending all day in the Sacred Heart ER yesterday... I am officially DONE.
I am most thankful for the times of family togetherness and making memories but I could easily have done without the illness, mad dashes to the store for forgotten "absolutely necessary" birthday food, plate items etc.., and the all round feeling that there was impending doom in the cards for Samuel hanging on to that magic baseline of good health. Jason says every time we scheduled a baptism (3 times to be exact), I was basically ensuring that Sam would end up in the hospital again. SO.. I am thankful we had the chance to introduce our sweet son to God this weekend but I was not suprised when his teetering health decided to fall off a cliff that night.
So to recap the week..
Bella's field day was mid week and she had a great time. I will have to post those pics later as this will be most likely my longest post ever! Bella's actual birthday was on Friday and started out with her favorite breakfast and she was pretty excited too that it was a non-uniform day at school kicking off spring break. She wore her favorite color blue and looked like such a grown up little lady to me.
Bella's big gift from her grandparents and family was the wooden playhouse that Jason had spent most of the day Friday putting together with his dad and a friend. Thankfully the friend is a general contractor (a huge help!). That project might have dragged on forever had it not been for his expertise.
At that point, Samuel was doing well and rested in his little reclined chair most of the day watching from the back door since the weather was so amazing. While the men worked away at the playset, I took Bella and her sister to meet 5 little buddies and their siblings at a local play park to celebrate her birthday.
They had a lot of fun and it was a low-key, low stress event for me. What more do you need than a beautiful day, a playground, friends, a kite, some bubble blowing, and popsicles? It was a great time and I am glad we did not try to take on a much more involved type of party.
Halfway through the party I had this realization that in all the chaos of this year, my little girls had grown up. I wasn't having to panic about if they would run off in the public setting or have a tantrum. No toddler moments anymore. They are little ladies.. don't get me wrong, they still make me pull my hair out with sibling issues and drama but overall they are far more independent. I can't believe she is 6 now.
Then the girls were so excited when they got home and saw the new playset. I am certain it will be a lifesaver this summer since I don't see us heading to the beach too often with Sammy in the heat. The pool and the play set will keep them fairly busy.
Sam's trouble all started that Friday night after being touch and go for weeks fghting an ear infection that has not wanted to budge. He had already gone though cefdiner, augmenten and just finished a z pac which we hoped would be the ultimate warrior. We were wrong. After a nice calm day watching the men work on the playhouse, by nightfall he sounded wet and was struggling a bit to breathe. His GI was beginning to give him the cramps and I could see trouble in our future. By Saturday (his 1st birthday) he was switched to pedialyte and in general a fairly unhappy boy.
Sammy watched quietly through most of his family birthday party on Saturday.
When it came time to blow out his candles, I told him we would make some wishes for him. He really did not want to touch his own cake or even get messy. He just enjoyed watching his sisters and cousins playing
together. I made wishes for him for good health and relief from all these transitionary periods of horrible pain. I wished for weight gain and acheivement of milestones. I wished for him to have a voice so he could communicate. Most of all, I wished for more birthdays. Healthy, happy ones.
That night (as with most nights during illness) he was again miserable. He woke up however acting stronger and we decided to proceed with his scheduled baptism. We went to the contemporary style service for this as we knew it would be more difficult with the girls and all the family and cousins if we tried to make it work in the traditional service. Sam seemed rather good and even smiled and bopped to the contemporary rock band music. He was incredibly tired and overall just done in when we headed home for lots of rest. I worried it was too much for him. We snapped a couple photos of him but he was not in the greatest mood for family pictures either. He later had a bad night with the Ears, GI, Breathing issues again. I really wanted this week starting his 2nd year to be happy, hopeful and bright.
Then Sunday night took the more worrisome turn for the worse and after two nights of not sleeping, I was full of panic about being able to have all my faculties in place for taking action if needed. He had only had 1 symptomatic bradycardia over the weekend but was now having more short drops. Yesterday we went to the Dr and they felt he was in respiratory distress, not good o2 saturations, and still had incredibly infected ears. How did none of the antibiotics do anything to help him? He also was dropping weight and was now down to 15 lbs 13 oz. from 16 lb 7oz last week.
So off we went to the ER an hour away at Sacred Heart. They know him there rather well and immediately ran chest x rays and blood work, put him back on o2, started an IV with fluids and a shot of antibiotics. Lab work came back with high white blood count, low blood platelets and a bunch of slightly off figures. We had a long talk with the resident and made the decision to avoid another hospitalization at home and get another antibiotic shot the next day at the Dr's office but return for admission if anything esculates.
He did not get the medications that help regulate his bradycardia while we were in the ER and so it made for a not so fun trip home. He had 3 low brady episodes and then a rather bad night at home with bad breathing and moaning in pain. I was a nervous wreck all night but by 4 am he finally seemed rather restful and caught up on some sleep. I am giving only pedialyte today with hopes he will keep tolerating that and avoid total GI shutdown. I am just worried he will loose too much weight in this process. He weighed more than this 6 months ago. We had a followup appt back at our pediatrician today and he got another shot of antibiotics. All of this has made us consider the medport that was once before recommended but never placed. It would allow easy IV access for fluids, blood draws and antibiotics but could open him up to more infections. I just don't know whether we should do it and it seems it is up to us to decide.
We have been praying for a friend and his wife who had a big day yesterday with his wife receiving a kidney transplant, donated by her mother. It went well and I pray the Lord holds their family in his arms through recovery.
I am also praying for my sister who returned to Tampa yesterday before a big move to Belgium soon. This week was our last time to see each other before the move. Very hard for all of us. My girls are really going to miss their cousins. Both my sisters will be in Europe at the same time though so hopefully they get to see each other more often. It just will seem like lightyears away from us here. We said goodbye to them down at a park on the beach. More pics to follow at some point.. I realized our kids will probably all be big when they return and that is a tough one. They grow so fast.
I spent much of this week reflecting on that very point. Our lives sail by so fast and if we blink, we miss it. This year was such a blur and for all the hardship and challenges it meant for us, there were beautiful memories too. If I get a few moments to work on it, I am hoping to post a little memory road project reflecting on Sam's first year. What a year it has been!
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