We had a bad day yesterday but today has not been so great either..looking at the positive though.. he is stable most of the time today and is not on the o2 and is sleeping at the moment.. or actually all day really.
Starting with yesterday.. He had a picc line placed in the morning and of course I knew going in that there would be complications..there always are. Sam is never predictable except in that I CAN ALWAYS count on him being unpredictable and suprising everyone by what we have begun to call "misbehavior". For those reading who are new to Sam..misbehavior is when Sam decides to stop breathing or his heart rate plummets out of the blue (no pun intended). This is called Bradycardia and for Sam who normally has a heart rate in the 120-140 range (normal for babies), bradys are times when his heart falls dangerously low..officially below 100 but not symptomatic on him till in 70 to 50 range. Picture below is example of him dropping from 130s..it eventually stopped this time around 70s and then headed back up so not a biggie. He does this fast and with no warning and sometimes he does not turn back up too well. This is bad in that his heart has stopped before for short periods which is called asystole. I know you were not planning on MED101 class but Jason teases me that I have gotten so comfortable with the terms that I don't take in the general public's learning curve on this stuff.
So yesterday I counted on more "bradys" during the picc line placement procedure down in interventional radiology. They do it with basic anesthesia and they usually only require an LMA tube placement which just keeps his airway open at the mouth and top of the throat. I made sure they knew with mito kids they have to take malignant hypothermia precautions. As usual, when Sam is given meds to relax...he really relaxes. So, he had to be intubated and that was our first unplanned aspect of the procedure. Then they found what was thought to be pneumonia in the top of the left lung and then to make things more fun, the usually easy insertion of the PICC Line was complicated by him not clotting well. This Picc line is a central line to an artery near his heart which will allow easier and less damaging access for giving him medication and TPN (liquid food). The radiology Dr said he had to put pressure on it for a while to stop the bleeding and it was not an anticipated situation but he kept telling me he could see how complex Sam was and how sorry he was for our anguish. Very kind man. What situation with Sam is EVER an anticipated one?? Maybe the blood clot issue is related to his dysautonomia or one of his many meds.
They did get his blood to finally clot and then were able to extubate him but he required 02 through the night. He has been off it and only has occasional bradys and desaturations of his oxygen levels at this point.
Part 2 of the terrible, horrible, no good, very bad day (I love that book..) was a not so thoughtful Dr who needs some "sensitivity training", as the social worker gal put it who always checks in on us. This guy was consulted for some reason and I have no idea which specialty but he came in and was having me fill out an insurance claim form he needed when he asked me about Sam's new diagnosis about the mito disease stuff and while here went on to say, "do you have other kids?" yes I said..two daughters 5 and 4. "are they healthy?" yes.. we are very blessed that they are very healthy. He then proceeded in a flat and rude manner to say, "good..cause it does not look good for him." and with that turned and exited our room....AHHHHH. WHO DOES THAT????
Lord, thank you for giving me strength to control my anger at that moment. Before Sam's birth I never experienced such crazy interactions as I have this year. I know I am the LAST person in the world to make judgement about what people sometimes say or do thoughtlessly as I am the one who often puts my foot in my mouth during awkward moments but I sure hope I am never guilty of knowingly walking into a critical child's room and wreaking unnecessary havoc on a beaten up family's emotions. I wasn't born yesterday and I KNOW Sam's situation is serious and he certainly could have a bad prognosis. NO - I would not want a Dr sugar coating anything but my goodness..I don't need that kind of negative attitude from someone clearly NOT that involved in his care or even looking for solutions. Which.. brings me to my last issue with that interaction. I had the social worker looking up who this guy was and they could not figure out from his signature who he is.. should I be concerned that this random guy in a badge made me fill out insurance forms and signed intials KM in the Dr. field of the consult spot on the chart?? There are soo many in and out of here that I often can't make hide or hair of who is with what service. I usually ask but I was so tired and then he was gone in a flash. I guess I just needed to vent about that and let it go..
Today we also had another chest xray and rediology told us it was pneumonia but the pediatrician thinks it is atelectasis?? which is when the bronchi are not being fully expanded with his breathing and so condenses in and that causes the cloudiness on the x rays? either way she said antibiotics are on board.
Big part of today was the Gastric Emptying Study under flouroscopy. He failed. It took him 121 minutes to move less than 2 ozs (6 ozs is a regular feed for him)from the stomach to the intestines by g tube. UGH. He will likely require a G/J tube placed to bypass the tummy and go on to the intestines. But my issue is also that the intestines are always really slow too so will it solve anything? He is on laxatives 3 times a day and colace stool softener and still sometimes goes like 9 days before he stooles. UGh. They can do a pyloro plasty but that is permanent and I so hate permanent stuff plus if this is an energy muscle issue.. will it solve anything to be just opening that up more so it can sit in traffic in the intestines? Plus he might not have good energy stores to get through another big surgery. He coded a bunch of times after the last one and then stopped tracking for two months..way too stressful for our little man.
On a sweet note..Sam does not laugh out loud but he has the sweetest impish squicky laugh that can only be heard with strong ears but has the biggest smile you ever saw when you play the animal finger puppets a friend sent us..Thank you Roake Clan! He loves them! His nurses have even jumped in on the act. We can't thank all those praying for Sam enough for all the prayer..we feel it and know you are the reason Sam stays strong. He is teaching me everyday about joy and God's gifts.. real gifts are love and family and friends and connections..all the other junk can just go out the door. If you don't have love and build bonds and enjoy the moment and learning from eachother and God..you have nothing. But through God... we can do all things! So that is where we are today.. terrible day or week as it is right now..we can get through it and onto bigger and better days.
God works in mysterious ways. First, He brought a kind friend to my rescue yesterday right after the not-so-nice Dr left..just as I was needing to get us checked into the ron Mc donald house here so that when Jason arrived with the girls we would have a resting place for the weekend. I needed a ride over there and was a little down and flustered. She called at just that moment and said.."guess what, I am right across the street." I can't believe she drove an hour with her family of 5 to have like 10 minutes with me but it was such a blessing and her family watched the girls while Jason and I got to pray with Sam at his cribside last night. It is rather rare for us to be able to do this as siblings can't be in the PICU. SO I thank God for her friendship and for all my friends who have been such a HUGE support.
Secondly, we ate dinner together as a family at the house as we were unable to reenter during shift change. That is a nervous time for me to leave Sam alone and then in walked Richard Lamar, a friend from Highschool whose baby was born 11 weeks early when his wife was forced to deliver due to preeclampsia and HELP syndrome. Their baby is like 2 lbs and in the NICU here. She is doing ok for now but Lord, please watch over baby evelyn and all those innocent little ones in the NICU. I hope we can be of support to them when they need it as we have become pros at some aspects of this experience. Their family needs our prayers and I know as this is their first child, that they are probably really overwhelmed.
The last little info I am trying to figure out is the plan for moving forward..should we be transfering to shands or atlanta and can we do that with the new insurance not in place and the old ending today? His GI surgeon is at UF and we loved him but hated neuro there for delaying the biopsy and dismissing him as a newborn who would probably "grow out of this" plus they kinda got to a stuck point and left us with the tracheomalacia diagnosis and no other ideas. They left me with the impression that likely the airway issues were caused in utero, at birth or after and this led to neuro damage leading to more systematic damage which could still be how the mitochondria started dysfunctioning but seemed they gave up on more investigation at some point. For cardio surgery if pacemaker was needed and for the mito GOD we loved atlanta...and so that is another good option. They only have one surgeon and a handful of outpatient type GI guys and so resources are limited. They can't even place the GJ till the surgeon returns from vacation next week...boy we live in a local yocal area if the only surgeon at the biggest hospital we have an hour from home is not even on-call!!
I need to see about how insurance issues would work with the agent.. He called today to say maybe we should sign up for cobra as a 3rd level of surity that we don't have a gap in coverage while we wait for independent insurance coverage.. I am sooo nervous. We can't afford ambulance again as we have been slammed this year in paying for those each time so would that mean holding our breath while we drive 6 hrs with IV poles out the back window and tanks in tow? yikes. What to do.. What to do.. well I will sign off for now..God Bless.