Tweaking the Meds..




Mom - Can't you see I am resting here..!

 
Today was all about recovering from a tough day yesterday... lots of sleep. Sam had been on a new medication to stop the Bradycardia called Robinul. It is a anticolinergic medication that drys secretions which would then help with relaxing an overstimulated vagal nerve that seemed to be causing his heart to slow and actually pause for periods.. very dangerous scenerio. It also has an increase in heart rate as a side effect. Immediately we had watched it dry out his lips, mouth and eyes..all the congestion becoming thicker and harder to pass. Then yesterday Sam went into respiratory distress and could not seem to breathe on his own... my belief is the meds dried up his congestion and then blocked the airway..sats started dropping etc.  He was badly retracting (more than usual), nose flaring and pretty stressed out. It probably did not help that he was emergently intubated the day before during his MRI when he stopped breathing on the LMA tube (smaller breathing tube only going down to the larynx). So yesterday his blood gases were high for CO2 and so they were about to intubate him when one of the docs said we should try other steriod options and breathing treatments first keeping in mind his history of vagal responce to stuff placed in the airway.

His chest X ray showed no infection and all secretion tests are clear of the main big viruses.. I was glad we avoided another intubation.. he has issues with those probably from the tracheomalacia paired with the hyper sensitive vagal nerve. SO.. after some cpap and such he was weaned slowly down to currently being on room air by nasal cannula at only 1.5 liters. He spent the day resting today and being constantly suctioned. Now he is moving to a lower dose tweaking the levels so we find a balance between stoping his bradys and not overdrying out his body of all secretions. He had yet another floroscopy upper GI done to confirm for final knowledge that he is NOT refluxing and his fundoplication (the surgically placed stomach flap wrapped around the espohagus) is NOT too tight. Jason would love to stand on the roof tops and shout "FOR THE LAST TIME.. THERE IS NO REFLUX!!!!!" That might feel good to shout but won't convince the docs .. so we had to continue radiating the poor boy.

All kidding aside.. it was all as it should be on those tests and apparently they are that much closer in the understanding of what is going on with him. It seems that they think his vagal nerve is unconventionally way over sensitive and so much so that it has big implications on the autonomic process of the heart. The heart has autonomic and sympathetic forces for the firing of the electrical impulses that control heart rate..his was not firing right because it was constantly getting messaged by the vagal nerve to slow down or pause. I am not a Dr.. so forgive me my laymens simple understanding..but in addition to this vagal sensitivity they believe that possibly other parts of Sam's autonomic and central nervous system may be getting mixed messages due to a problem with the mitochondria (powerhouse of the cell) or some other part of the metabolic or neuromuscular process..That is why a muscle biopsy next week may be able to enlighten us as to the origin of his problems. It is incredibly scarey to read anything about mitochondrial disorders of infants. Don't even look. Whatever it is I need to know and then I can fight like crazy for him. They talked about how the main benefit of knowing is that you can possibly watch for outher multisystem issues that could be down the pipe.. "other multisystem issues??" I said. Could more happen to my baby then what we are already dealing with..?

I prayed about it after they said that..and realized they are right..better to prepare our hearts and minds that something bigger may lie ahead and pray for strength but to know that even with the diagnosis if one is within reach..we may not be able to treat it. Living in the dark is not in my nature and I don't want to live in fear. God made me in such a way that I am never satisfied to just let stuff happen to me.. or to stand by and not give a good fight. We are constantly working to improve, better ourselves and our understanding. But he tempered that need to constantly expand our knowledge by saying that we should not lean on our own understanding...we have to trust Him that He has a plan..we can't expect to know or understand everything..it is too vast and deep for our greatest efforts to begin to fully conceive. I was so happy that Jason got to come share lunch with me and visit with Sammy. He is trying to come again with the girls tomorrow as we have a room for the night at ronald mcd house. I really miss my family! I was also thankful to have a visit from Sam's developmental coach today.. a sweet friend we have made through all of this. She came last weekend and is always an uplifting presence to us. Some people are like kindred spirits drifting in just when you need them in life. This is something my best bud at age 8 used to call those unique friends that God meant you to make in life..she past away when we were 12. She could have been 60 for all her wisdom.

I was reading a recent blog update from a mom who recently lost her son to neuroblastoma cancer at 5. She is in so much pain and I know she must be repeatedly asking..why my little boy?..why us? How can you not ask it when you see that your sweet innocent son is put through the horrors of endless medical procedures and pain when serial killers and drug dealers walk the streets without issue..but in my understanding and maybe it seems twisted.. but maybe because they are blessed sweet innocent angels they struggle more.  It is not that God makes these challenges for them.. I don't believe God would create harm for any of us..but that he created a world that included injustice and pain so that we may choose the good in our humanity, that we may be thankful for our gifts and find the right purpose for our lives. Our growth and strength comes in the choices he gives us on how we handle every step of our lives. We fight for defenseless babies. We aspire to follow those who overcome adversity. We help each other when we are low. Those are our choices. If I look at all the harder times of my life, I see times of personal growth even if I feel anger that I had to endure it to become stronger. If we are lucky enough to not have to go through trials in our lives..we experience empathy by choosing to relate with others. So I am trying to keep reminding myself that Samuel is teaching us and helping us to be better..He may not have choices at this point in his young life but we do..we have to choose the right way to live amidst these challenges.

I want Samuel to have a chance to experience all that we have one day. I doubt he will ever take anything for granted in his life. He will probably appreciate the gift of breathing easy and swallowing each bite once we get to that stage. He will appreciate a warm bed at home without the interuption of beeping machines and constant poking and prodding. I hope he will never question being loved. And although they are not experiencing his pain themselves..my hope is that our girls won't take any of that for granted either. Thank you Lord for the gifts of appreciation in our lives and help us find a greater purpose for our lives. Right now our main purpose seems to be to protect and care for our sweet children, trusting God about the path ahead.
   
  Prayers for tonight are for my friend Robin's father still dealing with lung cancer and pneumonia concerns, for a friend Susan from my church back in the hospital, our choir director and his family as his wife Renee fights cancer that has spread to the brain, and for two special highschool friends, the Anderson family, who welcomed their second child yesterday and who is fighting respiratory problems in the NICU..their anguish I remember too well. Finally.. I have a big praise of thanks for the news of a new baby to join the Kelton family. God bless all these families.

Breathe Easy..

Yesterday Sam had been having alot of little bradys and I think the cardiologist got even more concerned when Sam had an asystole which is when the heart pauses or stops. His stopped for 4 seconds after an episode yesterday morning...scarey. We soon found out they had a new plan for Samuel regarding the Bradycardia he has been experiencing.The cardiologist came to me and explained there is a medicine Rubinul ( i think this is also the same as atropine) and that it would suppress how the vagal nerve relates to the heart in terms of lowering the heart rate. He then explained that we would know within the hour if the medicine was going to work. And we would take it for 3 days to see if it was sufficient coverage on its own. If not, then we would need a pacemaker placed surgically which in an infant is much more major surgery as they have to place the pacemaker in the chest against the heart behind the ribs (from what I understand). With adults they utilize heart catheterization through the leg and don't have to open the whole chest. So we started the Rubinul which also has some other effects that may become concerning of themselves. Sam continued to have episodes for 6 hours or so and then had a long stretch at night of no problems...Yay! We did have maybe 4 episodes today but far less than what had been happening before. They will continue to watch to see if he will be able to avoid the pacemaker. If he had been going to Jax by life flight for that they had intended for him to be seen by all the other specialty teams agains and recieve the muscle biopsy during the surgery. Now we are faced with questions about whether there is a reason to consider other hospitals anyways if no answers become available soon. Boston, Texas among many others seem to have well ranked neuro and cardio specialties. UAB is another thought..hate to have to go to another hospital but it seems the answers are just out of our grasp..

As for this morning, it was a bit of a stresser...we were supposed to have his MRI done under general anesthesia today and I thought they were also going to intubate at same time. Then when we got down there the anesthesiologist said they would use gas and just put in an LMA tube for him to breathe through. I explained his misbehavior in the past coming off anesthesia and while intubated as well as during any procedures but I am not sure he gathered how serious it becomes in his case. I was sitting in the waiting room talking on the phone and could not help staring at this tobacco free hospital sign that said "Breathe Easy." That said it all.. Please Sam .. breathe easy. Within a few minutes the anesthesiologist came back out looking a little spooked. He said Sam stopped breathing on the LMA tube and had to be intubated and bagged. D satted pretty far down but no brady.. strange - that medicine must have helped heart rate I guess.. maybe it helped that it has his heart rate up near 180 as opposed to 140s.. He did fine after that for the MRI of the C spine. I guess they were trying to look for any lesion or compression of the nerves. I have since heard through his nurse that it was all normal..no issues. So thankful!

Then when they went to pull out the intubation tube it was full of yellow gunk..which was odd since chest xrays have been clear.. He spent the afternoon zonked and having some trouble with labor of breathing and retractions which we had not had since maybe saturday night. He did have about 6 small episodes this afternoon. I say small becuase he did not go below the extreme lows but it is insane to see your childs heart rate drop from 165 to 73 in about 3 seconds flat. He is sleeping now although he is having a really hard time with his breathing and congestion. The new medication dries up bodily secretions and fluids so his lips are all cracked up and it hurts him a bit. Here is a picture of those sweet cracked lips..such kissable cheeks.

They had done a flo upper GI check to see if he was by any chance refluxing (one last check I guess) yesterday and filmed the barium in the tummy and small intestines but now want one more swing through it (our 4th or 5th time at this same type of test) just to put a little in by mouth to see if the fundo is too tight.we know it is not too tight as he does not wretch all day but anyways..they may come in the night for him so I better get some rest.Not sure if he can handle much by mouth but we will give it our best shot.

I am so thankful for the love and support of friends and family..whenever things feel particularly heavy I think about how blessed we are to have people lifting him up in prayer. My in laws have been a huge help this week with the girls. My mom and sister are helping the rest of the week. They got to come here today and we got to have lunch as the nurse was willing to watch over Sam while we were down in the cafeteria. It was nice to have some time with them and get out from this room a bit. My prayers seem to have been answered about the meds helping so now we just have to be patient and see what lies ahead for him.








     

Busy days ahead it seems

For fear of jinxing things..yesterday was a reasonably calmer day. We seem to have these "uneventful" periods where other than some belly breathing and a little congestion, he seems fine... and then I see him out of the blue have heart rate drop like lightening and I realize we have to get to the bottom of this. Those also seem to come in a series and best that I can tell are usually when asleep or resting. They are planning to do a muscle biopsy soon and they want alot of blood for lab tests this morning..ugh..and they are doing an MRI tomorrow of his throat upper chest area?? I said.. why there? He has already had cts of that area and x ray.. well apparently they are looking to check for any nerve issues. I slept from midnight to 4 which is probably longest all week but am beginning to feel really out of it.. can't even form clear thought bumbling with his wires just trying to hold him but feeling so tired and disoriented. I need more sleep but how can I check out with him doing this? How will I ever sleep at home if this is still happening then? I don't know if they will order for nursing in the evenings or something but I can't keep this mode up and what if I don't hear the alarms..? This happened one night this week when Sam was having more episodes..we were so exhausted finally crashing and then when I checked on Sm his moniter showed he had a low heart rate alarm that I had missed..I know usually he self corrects on his own..but those few times he has not and went on down down to like 30 heart rate is absolutely shocking...well.. better try to close my eyes for a minute while sam is back to sleep.

Sam's 6 month birthday

Today was Sam's 6 month birthday. He was supposed to be baptised today but of course that will have to wait now. He had ups and downs all day after a long night and now tonight every time I think I will fall asleep I realize he is dropping his heart rate fast again and alarms are going off, people running in etc,, It looks like the EEG continues to show abnomal encepholopathy readings indicating sharp wave over the temporal left lobe with general background slowing. He has some non brady related seizures that began this summer but were not shown on the EEG as he did not have any of those since we arrived in the PICU. His neurologist does not think the bradys (major HR drops) are caused by seizures and we know they are not proceeded by apnea or dsats or work of breathing or stress of any kind...they really don't seem related to his tracheomalacia diagnosis from Shands. So the neurologist wants a muscle biopsy to look at mitochondrial function and disorders or possible myopathys. These could effect the autonomic heart rate among other systems. Plus..his white blood count was low the other day and could be effected if the mitochondria are not transferring out the necessary white blood cells needed for fighting infections. He continues to not run any fever but feels pretty miserable anyways..His simple congestion is proving to exacerbate every thing and since he does not have a cough reflex.. it is proving pretty hard to get rid of and clear the already small airway of his secretions.

Tonight I am praying about this new avenue and all the tests they want to run .. it will be good to have an answer that helps us to understand him but I am so terrified of a bad prognosis. I am praying he calms down and sleeps well tonight so maybe I can shut my eyes. His nurse is watching carefully which helps as I fear his HR drops will  end badly if I am not watching. I am praying that Sam is strong enough to go under general for the biopsy. Today was his 6 month birthday..wow - what a crazy 6 months it has been. He is our little fighter. as I typed this he popped HR down several times pretty low but always reovering..not normal to go from 130 or higher down to 70 in like 3 seconds only to start the climb right back up. I don't get too nervous until his sats fall into the mix because I know if HR is way down and sats jump way down we are at risk of a major problem and as they can't seem to get or keep an IV in right now on him.. I fear them scrambling to get emergency meds in quick enough to save him in a crisis. It is so scarey and I know God is keeping me strong but if I had to go home with him like this I know it will be the end of me.. We have to find a solution before then. Bless his heart.. I am thankful tonight for all the prayers of friends family and even strangers.. My Sr. Pastor was here today when Sam was in a good mood and it was nice to see a friendly face. Sam's dear therapist Randi came out here today as well. Sam is so blessed to be surrounded by loving kind people who lift him up. She lifted me up to with her bright smile and encouraging support. God brings people in our path for a reason.. make no mistake.
I have a big prayer on my heart tonight. A new baby is here that may not make it and maybe I am not supposed to know much about her but in these close quarters it is hard not to hear all the hubbub and concern over a new admit. Seems this baby has experienced shaken baby syndrome from an abusive situation..I sat in here holding Sam's tiny hand thinking of how dear and precious he is to us..in agony that someone else had not realized the blessing of each of God's sweet babies.. wishing I could go to that baby and hold her. Later I heard them say the baby may not live through this..so sad..as we go day to day these past 6 months fighting for answers to make Sam ok..and then to hear another baby who had every reason to live..to be snuffed out in a moment of rage. I pray she feels no more pain and can be at peace. We are all here with our own set of purposes on this earth and I do believe however short our life may be..it matters in a big way.. our lives impact others, leaving a mark for others to follow. Countless people have left that mark on me and tonight it was this baby in making me think deeply about the gifts God gives us in these defensless children. She left an imprint on my heart. It is 2 am and I am going to try to rest as Sam is doing..
Amanda

trying to stay more calm and patient

So last night's post at 2 am was about as raw as it gets for me.. I actually wrote hell in a post!! Jason would say..what a scandal - amanda must be really on the edge. He pretty much has always teased me about my awkwardness in expressing raw language or feelings..He is right. My vernacular is a bit conservative..but hey I had to express the real deal last night..complete frustration and pain.  I would apologize but I hope those reading (mom I am thinking of you..) will understand that I was about as thin emotionally as I could be...nerves totally shot. I was feeling completely alone in this room..but after writing the post I sat and prayed. I prayed for Sam yes but even more for calm and patience and to keep up my faith.  Sam and I were not alone in this room. I am never alone in any of this. It is not just pain that Sam feels or our family feels, for that matter.. Jesus does not leave us alone in pain. He felt all the pain so we would never have to be alone. I don't know why human nature is to not want to be alone in your tough times but I think most people feel that emotion. My husband happens to be the contradiction to that rule as he likes solitude and keeping things more internal. But for the rest of us, we feel strength in numbers. I think the whole reason the social networking stuff has taken off with facebook and my space and blogging is because we have this desire to be knitted together with others..to have ties and share in each other's experiences. I was always the one who said I would never join into that social networking online trend.. heaven knows I am neck deep in live social groups but in the months of dealing with Sam's needs and being somewhat more isolated socially.. my view became more open and it has helped me to feel less isolated. So I will continue to share on here but if it is ever irritating to read about my daily saga and emotional ramblings..please don't feel the need to follow it. I think it does help me to process and along with my prayers will help me to come through this without going crazy...(and no mom - I am not going to go crazy with sam worries.:) )

My prayer today..
Dear Lord - Thank you for putting friends and family along our path. We are so blessed by friends who have been there for our family during this whole ordeal. Thank you Lord for the village you built for us. I hope it teaches my daughters the value of being there for others as it has us.Thank you for speaking to my heart in sad moments when I begin to lose hope. Thank you for helping me to be strong and stand my ground advocating for Sam when all I want to do really is let someone fix it all for me. Lord forgive me for becoming so tired that I might not be who I want to be in my stretched thin moments. Lord, as I continue to pray for answers whatever they may be about Sam's health, may I so humbley ask that those answers lead to a window for us so I can get past this dark feeling. I know whatever answers you provide are ones we can handle and will lead us down a path that you deem necessary.

I pray for all my loved ones and their individual struggles..are there really any out there without some prayer on their heart? Hear them all and specifically those concerns for deployed family members and friends fighting illness. I hope even the simple prayers of calm mornings or joyous celebrations can be met in such a way as to leave no doubt that a power greater than ourselves is in ultimate control. It all comes down to control..I can't control this situation but I can focus my energies and any gifts God gave me on following the path he has set for us in a way that pleases Him. I will give God the glory for each step higher on this mountain climb but not blaming him for the rocks we have to climb over to get to the top. I love the story of the mustard seed and how all we need is faith so simple and small and yet we can move mountains.. I feel pretty certain I have moved a few mountains by now in this life.. none without those mustard seeds..so I am going to keep my faith for God to watch over my Sam too.  My beautiful, couragous boy. I pray you give him strength and clear him of the croup inflammations that are somehow exascerbating his condition..Help him to breathe and to keep up his heart rate.. to not scare his mommy and daddy so much. I pray for his medical Drs. that they are wise, cautious and purposeful in their skills. I pray for Jason caring for our girls and helping them to understand all that is going on with Sam. I pray, Lord, that you place your hand on Sam's head and his heart and set the pace for us. Let him grow old. Let him show us what he has overcome by growing into someone who is thankful for the chance at a life of joy. Happiness and success sound so nice in the short term but joy and peace are the true gifts.
Amen.  

  

 

Back in Sacred Heart..

This past week was not a good one for us. Now we are in the PICU at Sacred Heart and have had some pretty intense and horrible moments... I am trying to look on the bright side that we have gotten through some tough trials and maybe amidst all the specialists here we might find answers. God has a plan for us this week and I have been praying about it.. I think we are going to get a better picture on things soon.. I can't explain it but I just feel it. We have to.. this is pure hell. I never talk that way or use words like hell often..but that is how this feels. It is the lowest of low and I am so distraught that I have to believe there will be some light at the end of this tunnel or I will go crazy. I am sitting here at nearly midnight and I listen to Sam's labored breathing and looking at all his eeg wires and heart moniters and feeding pump tubes and I think.. it won't.. it can't always be like this. This sunday was supposed to be his baptism and 6 month birthday bbq with family..but that feels a million miles away now. Tonight I am back in the dungeon that was his first few months of life. Sam is enduring more right now than most of us will in a lifetime but he will get past this .. I know he will.. there has to be a better future for him. I have to have faith that whatever Gods plan is for Sam and our family, he won't let us wait too much longer to get an inkling on what to expect. Living in the dark is exactly that.. dark. I think part of the way I think of Jesus as the Truth and the Light is that is what my faith is standing on for me...light and truth amidst darkness and few answers. I have to have a foundation or I am just falling down a well. I have to have hope against all my natural fear and doubt. 

Last week I may have written that we had a day when he experienced some bradys, rough breathing and then some colic like crying and then silence type seizures in a long series over about a 1 hr period on and off. We had called the emergency number for our neurologist who ordered an extra dose of his seizure meds and an increase in the dosage. Our pediatrician had listened to his lungs and found them clear but we continued to hear some sounds from time to time. Then two days later after being put down to bed he awoke with what seemed colic like crys and yet it had a spastic stop start rhythm that concerned us.. I think it was also seizures. He then went several days of alot of sleep and not much change. Then this week on tuesday night I recorded a middle of the night brady (low HR) event that left me quite unsettled and worried.

The next day he had a therapy session. His therapist and I discussed the fact that he sounded somewhat wet in breathing, possibly fighting his secretions. But his lungs sounded clear to her, a nurse. We wore him out on tummy time and put him down for a nap and she left. In a little over an hour, I heard Sam's alarm and I ran in to find him bradying silently while sleeping. His color was washed out and then he seemed to awake from my presence and start arching and then into a sezure looking brady event. I moved him to his side but he still sounded quite wet when it was all over. He proceeded to struggle in his breathing to the point that he seemed unable to manage his airway.I had called the Dr and discussed things like bulb syringing him among other things but in the end nothing was working and I decided it was time to hit the ER. My mom got to my house and took over watching Sofie, Jason took off to pick bella up from school and Sam and I raced out towards the hospital. He had 3 brady events on the way and was in the posture that looks like a seizure when we arrived in the small local ER. Nothing much was accomplished in the ER that night as he seemed to get exhausted and relax. They did breathing treatments and chest x rays for the loud breathing but basically told us we could go home and watch him for changed or go on to Sacred Heart. We probably should have just gone on to Sacred Heart but it seemed like he might be past the worst of it. Well.. things got worse.. That night and the next day were a hodge podge of him looking just fine for a few hours of the morning to down right struggling at night...even with an oxygen tank that was ordered for him on him. So today after a chest x ray and rsv test in FWB, we are now here in pensacola at Sacred Heart again. He did not have RSV and his chest was clear but clearly..he was getting worse.

Once here.. Sam began to have little HR drops and d sats. I got annoyed because the intern on his case immediately kept drilling in her view that he must be refluxing...ahhhh.. I about walked out of the room. That is when I had to explain that way back in the beginning we had heard that possible opinion before..it was not right. He had a reflux study with one possible reflux in a situation where they chugged barium down his throat in about 500 the rate that he usually would get it and then layed him down flat.. any baby would leak some or spit up..or internally reflux..not sam.. He does not have reflux.. but.. even further we had the reflux surgery (fundoplication) done anyway for fear of the prevention of any future reflux that perhaps he could not handle if it did appear. He also takes prevacid everyday.. he is not refluxing. So I bit my tongue and let her gab away about the severe power of reflux..and I wanted to say... does it make you unable to suck, swallow? Does it make you have low neck and trunk tone? Does it make you have seizures? I would love to believe it was reflux but it is just not the case. apparently many parents of kids with odd diagnosises and syndromes begin this way.. with a question of reflux..so strange.

This same intern really amazed us though when Sam's HR moniters and d sat moniters were going off and we called for help and were slow to receive it.. she finally got there when he was on the way back to normal a few steps behind the nurse and said to us..it must have just been the leads..he is fine. I explained that this was not a false alarm and that this one was indeed true. The nurse then confirmed that he was dusky when she got to his bedside and that was after he was about done. The worst part of our night so far came however when we watched Sam have an episode where his HR got down to 30s and dsats to 60s before he started recovering.. it lasted much longer than usual at about 3 minutes total. We captured the end portion on video.  horrible moments for us..over and over..everytime I am left shaking. I was thankful the nurse was there to have eyes on it as I hate having to relay things. It was hardly reflux. So due to that event..we were moved to the PICU where he now is undergoing a continuous EEG. He must have worn himeself out beccause he is sleeping better than he has in 3 days albeit wheezy sounding with small bradys and dsats.. So Jason has gone back home and we will see if they can come back in a day or so. For some reason I am feeling a bit nervous about being here alone when they read his EEG results.. will it show improvement or a new finding.. I have been leaning heavy on a fear of something called infantile spasms. I have no reason to know if that is something he could have.. but for some reason I can't put it out of my mind when I read about it..I think about sam's quick stiffening moments when he arches his back and neck all day long.. could he be seizing then too?

As I was about to finish this post Sam had a MAJOR blue brady episode (I really thought he was going to die..) It was soooo horrid. WAY WORSE THAN BEFORE.. How can I see these things over and over.. it is absolutely horrifying!!!!  I think it was a seizure with super low HRs and d sats I can't even post.. the nurse said she saw 0 and hit our room like a bolt. I know I was seeing dsats in 40s myself minutes into him going back up. I am utterly in shock. Everyone was in shock. They all kept saying it was good that we had come to the PICU. He was bagged and resuscitated over a very long period. I thought they were going to have to intubate him or get a crash cart when I saw them bagging him for so long and he still delayed in recovering for minutes. Since then he continues to have small bradys..will this night ever end?

      

Smoother waters..

My van full of kids at school pickup time..Bella, friend Landon, Sofie and Sam (not visible here).

It is funny the phases you go through in life and how it all comes full circle. I was driving the brood home from school today and of course I always ask the kids how their day went and what was their favorite part. Today was one of the days we car pool with Bella's little buddy Landon (son of my friend since middle school, Robin). He is quite a sweet, percocious little boy and he explained that his mommy asks him to rank the day with a 0-10 scale. I have this other girlfriend whose son has had a great day if he comes home "on green". Well, Bella had a warning code the other day.. which to the horror of new kindergarten parents means she was warned for a behavior..in this case singing in art class. Only my child.. So after much family discussion over when singing is appropriate, I was of course ever eager to hear if today was a better day. It was, and as I drove along I thought about when I was in 2nd grade and we had the Sailing Ships scale. There was a long strip of water above the chalk board (yes chalk - it was a looog time ago) and if you were having a good day your ship would hang out in smooth waters.. but if you were having a rockier day.. it would mean turbulant seas for you..I can't tell you the range my ship would travel thru the course of a day.. chattiness landing me in the rough and overly exuberance with raising my hand to give right answers pushing me back to the smooth. Well nothing has changed in that department it seems..

After Sam's brady episode tuesday night, I feel doomed to rough waters but with the start of a new day and some good progress in his speech therapy session along with a visit from my sister Erica from Germany (here for a few months with baby daughter in tow), I began to think we were smooth sailing. I noticed some raspy breathing but figured he might be fighting a bit of teething extra saliva and headed out for a rare lunch date with a friend who had yet to meet Sam. It was a wonderful lunch and then upon heading out I offered that she might want to hold him. I barely touched him and upon rousing, he began to have a small brady episode. The alarms did not go off but I knew HR was dropping fast, he was tight and stiff with very subtle color change and then..he was back up and looking ok again. What I would call a light episode. I should have known this was the turn to stormier waters for our ship...

Afterwords, I noticed he sounded more wet in his breathing but we have had this before with the tracheomalacia. I went ahead and made a Dr appt within the next hour. Before we got there he experienced a major blue brady episode.. the kind that sends me reeling. I am on the side of the road..in a panic. No mother should ever have to see her baby in this manner. It is absolutely horrifying. By our appt time somehow his breathing had cleared but they wanted the neurology people to give feedback which of course we could not get them on the phone while I was there.. so we headed home. The pediatrician said we needed to ask the neurologist about emergency seizure meds, adjusting his current seizure med levels and possibly writing a script for an oxygen tank to have at home for emergencies. They seem to concur with the cardiologist that these episodes are seizures and not obstructive apnea from the TM that then cause the HR to drop to dangerously low levels. Upon getting home Sam was sleeping and taking a feeding in his crib when I heard him crying out. He seemed oddly arranged in his bed and would cry out and then get quiet but not respond to me. He would turn his head away and seemed distant and every now and then his hand twitched a little. He would then seem to suddenly come out of it screaming. This same behavior had been noted 2 weeks ago but Jason and I were not really sure if it could be seizure related as it appeared differently than the one instance when we were convinced of seizure activity.. I think waking up seems to be a time when this happens if I can draw any correlation. Anyways, at least there was no brady during this strange period from 4:30 - 5:30.. just alot of strange back and forth and me being completely confused. Jason came home and shortly after he must have gone into some postdictal behavior as he laid limp and moaned quietly in his arms. All the while I waited for the emergency neurology nurse to call me back. She did call and ordered an increase to his meds and an extra dose. She said sometimes the levels are too low and also said his seizure threshold may have been lowered if he is fighting off anything. It was a rather long night of no sleep and worry. Stormy waters for me for sure.

Today however has gone better. I did not do anything productive and held Sam quite a bit as he was having more of the wet breathing from time to time. I hate to run up to the Dr each time it sounds that way only to find it has subsided.. I end up videoing much of this stuff because I think if I do run up there and they listen and he is fine..maybe they won't think I am a loony toon mom. I then mainly spent the day holding him and enjoying his sweet face and so all in all.. today was far smoother waters. I hope all of your days end in smoother waters. I have a new prayer to add to my list for my choir directors wife who had all of a sudden gone into remission from treatments for her stage 4 cancer but apparently is now no longer in remission. My heart and prayers go out to their family.

labor day weekend

Labor Day weekend was a nice break with the family after a rough week of emotional ups and downs. I am just trying to ride the waves a bit. One minute everything is going pretty well and I feel like I can take on just about anything and the next minute I feel pretty beat down by all the worry and details and lack of control. Prayer helps me to stop looking so far ahead and just take it slow..day by day or even hour to hour. Some of Sam's therapy sessions leave me feeling really excited, optimistic about all that Sam is accomplishing and then others make me feel completely blindsided by some little negative movement or lack of movement that I am not tuning into on my own. I have stopped comparing to the girls..he is his own little man right now. So quiet and sweet and although not really rigorously playing or moving about as I would like at this age..there is this sweetness and his eyes speak louder than anything. He is doing this cry that sounds like "ddddaaaaaady" and jason thinks I am silly to distinguish that word but his therapist hears it too. He is very social and engaging. He just doesn't quite have the dexterity to reach out as much in exploring and grabbing the way the girls did at his age. We will get there. Very rarely we get him to roll over but he looks at me like "what is the big deal mom?" and then I think maybe personality is playing a part in this. I have grown to hate the phrase, "They will do it when they are ready" even though it may happen that way. I love his new little laugh..he has accomplished much in the last couple weeks. I just need to be patient and try to stave off the worry and glory in the positive steps we are making.

It was a little bit hard this week to realize it would be impossible to help out in Bella's class like all the other moms. Bella asked me "Mom, when are you going to be there to help my teacher like all the other mommys?" Surely working moms are not able to be there but it hurt just the same. Afterall this is why I wanted to be a stay at home mom. This is the good stuff that makes it so much fun. I thought I could work it out on friday as that is a day sofie is in preschool and family would be mostly home and possibly available to watch Sam.. but once I started investigating this avenue I realized not even our own family is really wanting to take on the task of watching Sam for fear of all the medical what ifs..not that Jason and I are any more equipped for the what ifs but we are his parents and unless I can get connected with someone who is designed to provide medical day care..we are probably out of luck for those rare occasions. Of course one of my closest friends who is also an experienced nurse immediately offered to help with this.. but how can I ask anyone to do it just so I can go help with Bella's class.. in an emergency I could see asking.So I am doing what I can from home with cutting coloring etc class stuff. Why was this such a big thing to me? Would it have meant anything before I strapped on the guilt of feeling so divided and at times a bit low. It has just been a roller coaster over the last year between my mom, the crazy pregnancy and then Sam.. I just sometimes want off.. I want normalcy and maybe helping out in her little class somehow seems just that..normal.

I went to my mom's dr appt early in the week. I had a prayer the night before and really felt God pressing on me that this might be a downer for mom and I.. the other shoe dropping. It had been a while since I last attended one with her as all of this with Sam kinda left mom going on her own. After such an intense year with her last 7 huge surgeries and managing much of her recovery and the many many hospital stays..it is such a blessing that she got to a farely stable state right before Sam arrived. It was almost scarier for me though to not be going along with her to appts.. as I know mom is almost entirely deaf nowadays and with the one eye and horrible balance..I worry so much. What might she be missing at those appts..was her care falling through the cracks while I shifted my focus to Sam? Was it too taxing helping with the girls in the afternoons while I was gone those couple months? Was she taking care of herself? I hope that all this has not made things harder on her. It was not a great happy go lucky appt.. But she took it in stride and seems so strong in spirits. She is always encouraging and ever inspirational to me. She is always filled with beautiful joy and peace. God has gifted her that amidst the nightmare she has undergone.

 We talked the other day about how someone had stopped her and said that their son wanted to know what happened to her face..well mom had no problem explaining about the cancer and all the surgeries and radiation etc. I then channeled that story in my mind the other night when a girl who saw us with sam eating dinner asked me,"What's wrong with him?" in a less than compassionate tone. This is hardly the first time that phrase has come our way in public..so I thought of mom and how she would have answered. Jason was of course waiting to see me break down and say "absolutely nothing..can't you see what a beautiful gift from God he is to our family! Please don't say that in front of his sisters!" but instead I explained as simply as I could that he had a rocky start on things and that the wires and tubes are there to help us make sure he is safe and able to grow stronger. I know I have been quilty of not thinking before speaking or saying the wrong thing so I know it is actually just an opportunity to let someone else grow from that moment. I have sure had my growing moments over the years and will surely have many in the future. So I pray to not be too sensitive. It only matters how perfect he is to us.

Well with that last paragraph typed I heard Sam's brady alarm go off and I took off for his room as I am supposed to record any and all events for the cardiologist on this event EKG recorder and have to hit the button fast. Well I thought I did everything right but then when I called it in the tech said it recorded the minute before his brady accurately but not the following 2 minutes. The leads must have gotten disrupted.. ugh. We had not had a brady in over 2 weeks and as insurance covers this test for one month.. so without sounding loony.. we actually wanted him to have an episode so we could record it and once and for all deem cardio out of the equation as the broken piece in our puzzle. His heart rate is hanging low right now and so I will probably stay up and make sure he rests easier. But not too easy... (I never thought I would find myself making light of these horrible experiences but I guess it is the evolution of our way of coping.) 

Right now I am praying for the recovery of two close friends, one just out of cardio surgery and the other battling cancer and pneumonia. May they find rest and recovery. I pray for the sister of my good girl friend who is trying to remain pregnant amidst a rocky end to her pregnancy. I am always praying for my sister in law who has recently been diagnosed with MS to find peace of mind and keep focused, not letting it bring her down. I pray traveling mercies for my sisters, one coming from Germany with her baby alone and my other sister coming from Tampa with 4 little ones alone. Both of their husbands are deployed. God bless them. Here are some highlights of labor day weekend in the pool and of the girls and Sam. Sam will be 6 months on 9.19.2010 and we are having him baptised that day. I am excited to plan a special day for him.

Silly Sofie

I am loving the water and my cool shades!

Dad and his gang of fish..