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.