Moms Caring 4 Moms: Feelings of uncertainty

Moms Caring 4 Moms: Feelings of uncertainty

Feelings of uncertainty

So we are at another stalemate and not too sure as to what direction we will go in.  After Adam having his tonsils out and all the trouble we had there relaxing in this house hasn't been the easiest.  He's much more mellow yet has a consistent energy level which is so nice to see oh and now he never shuts up lmao.  It's been pretty amazing in that sense.  Watching him and talking to him feels so good because he acts like such a little man.  We had his echo yesterday and everything is generally still the same.  There has not been any changes since his echo when he had his surgery so it wasn't the outcome we were hoping for.  He will be presented at the next cardiological conference in the beginning of May for the opinions of what we do next.  We may not be doing anything but lots more medications though it may not apply to Adam.  Right now he is functioning quite well and his heart is still squeezing well which is the most important thing though there is some more thickening of his heart wall meaning there is more blood flow through the lungs which could pose a problem down the road.  Adam's hole is very big so we won't know how much of an effect it has on his disease until we go in and make the hole smaller with open heart surgery and then we have to cross our fingers that it was the right decision to make in the long term.  The closing of the hole is so dangerous for him it's unreal and they are afraid that putting him on a heart and lung machine during surgery will be even more dangerous because his pulmonary pressures are so shakey so ultimately in the end we have been left with more uncertainty and questions than before.  I don't even know how to feel anymore, I don't know what direction we are going in and I am not sure how much stress I can handle.  This was the first time the Dr and I talked about the fact that people with Adam's disease are at an increased risk to literally just drop dead and that him getting better is more of a dream than a reality.  He will have a lot more medications in the future I'd say and thus far Adam's dream of being a pilot certainly will not be a reality.  Even though I want to have another child I am now torn and leaning towards that not happening.  There is so much stress and uncertainty that I don't know if I would be able to handle bringing another child into this world and always hoping and praying to not be saying goodbye to my first born.  There may be surgeries, there may not, there will be lots more procedures and tears and fears and right now all I can hope is that Adam will remain the same and not get worse.  He's only 2 with an entire life time in front of him and I know in life there are no guarantees especially with where your kids will go in life, with Adam it feels like things are on a string that could literally snap at any time.  Not only do I not know where he will go in life, what he will do I don't even know how long I have with him.  I don't know how long his life will go on for, how "normal" it will be or how many things we will have to hold him back from.  It breaks my heart and makes me want to spend as many moments with him as I can which makes working hard some days.  I love my job which is why I still go and I know how good it is for Adam to go to the dayhome and get away from me lol.  If I had an awful job or dreaded it or saw no future in it I would have left a long time ago to take care of my boy even though it would be soo hard financially.  I am just happy to know that in May we are taking a family weekend trip to Calgary to bring Adam for a Thomas train ride and to play with his buddy.  All I can do and all I do to get through is to cherish the great moments we have and the positive things we can plan and do.  He is my world and there is so much still to do.

Life....

Well it sure has been an interesting period of time over the past little while.  Between the appointments, cancelled surgeries, Adam having croupe and then his tonsils finally coming out there has been a lot of ups a downs.  Adam's croupe was a bad bout and he needed treatment for it which pushed his tonsilectomy back.  It has finally happened and he had surgery on the 25th.  He spent one night in ICU doing well except for having to wake him every few hours for medications. We spent another day in Cardiology where Adam could see the LRT so he was excited to see the trains and then we came home.  36 hours later we were rushing back due to Adam bleeding and bleeding a lot.  One of his clots let go way too early and he was bleeding into his belly.  Luckily I had him laughing otherwise I wouldn't have known until the dreaded time of him puking blood, thankfully that was saved for the ER though still terrifying.  It was sooooo scary to see him like that, going pale, going lethargic and the Dr's not liking his pulse.  All I wanted to do was help my son and I couldn't do anything but hand him back over to surgeons and hope for the best.  Luckily Aaron and I acted fast and got Adam there right away because they were able to help Adam and not have to give him a blood transfusion though he was close.  It was literally the worst case scenario that happened.  The shining light is that Adam is better and is soooo amazing through all the hard and scary times.  He is still recovering and after what happened it's been hard to relax until we know he is better 100%.  I am still having nightmares about the ER and seeing him covered in blood, so it's been hard to sleep.  I feel so much love for my son and I am so happy that he is alright in which it also humbles me because some of the other children in ICU may not be the case.  We are very fortunate to have a child who is 2 and is able to function well at home.  I also learned to let go a bit as Aaron did the night shifts at the hospital to let me go home and sleep so we both have a new perspective as to what each other experiences.  I will now be able to go home when the big surgery comes which is going to do me some good.  For the next while Adam gets to be a kid.  With everything that has happened Adam's heart is still functioning very well thus no rush for surgery, therefore surgery will not be most likely the end of June.  We'll make sure to get in as many good times before then including hopefully a camping trip with Children's Heart Society.  As scary as things are we are finding great support networks and have been lucky to have such great friends and for that I thank you!