About my son & my life...
So my son has Hypoplastic Left Heart Syndrome or at least that is what they are calling it, because this is not what he has…However it is actually the right ventricle that is reduced not the left, My son’s heart disease is VERY rare & is actually history in the making, it is so rare. He will go in the books for future cardiac hospitals,…
They have actually decided to use a common surgery procedure for correcting my son’s issue. This is called the Norwood Procedure this will be his 1st OPEN HEART SURGERY he will have, after the surgery he will have to have his chest remain open for 10 days afterwards to allow swelling to reduce…Needless to say CRAZY! Right? .. He has had this surgery on the 12th he had one hiccup from it where the surgeons had to come in and perform another emergency surgery @ 1:00am in the morning the following Sunday…
Our son has been in the NICU since his birth, I have not told ANYONE this here until now, why have I decided to now? Because he finally gets to come home this weekend, this We3dnesday he is one month old & we have barley even gotten to hold him! Good thing about this is that the Cardiac Doctor’s actually found this on him because if we would have brought him home he would have died the 1st night & they would have called it a sids case but, this is not the case…!
He is at Seattle Children’s hospital , he has been there since 3 days after is birth where Swedish medic al has transferred him there…
He will have 2 more open heart surgery’s before his heart condition is corrected, one more at the age of 6 months (glen) & one last one at the age of 5ish (fontan)…
I shared this with you guys because he is doing well & will be home for the first time this week & because some times I hear life is hard for people around here, imagine this for one moment…
Just think about it, as a father I have not seen my son but only at a hospital & during some of the time his chest was pried open due to his surgery, He has had OPEN HEART Surgery something I most likely will NEVER have to experience. I have been taught how to put NG tubs down his nose into his stomach to feed him & check for placements & to give his medications…This will only be for a short while…I have seen sooo many tubs & wires connected to my son, crazy! Right? I have spent countless nights at hospitals now…I am quite sick of their food!!! But all is well & he will lead/live a normal life afterwards! You guys have seen pics of him, but I uploaded normal looking ones, later I will upload ones with his chest open & with bunch of wires connected to him… Give you guys a dose of my life at the moment…!
