LIFE WITH A MEDICALLY FRAGILE CHILD!

I know i always try to be upbeat on my blog!This post will be a bit different.Allot of days its difficult at best with Jaxson being full time care.Some days is tougher then others as we get used to all his care needs.I don't regret being his mommy for a simple second at all.But some days it can be overwhelming.He has had his trach for almost 2 months now.Some say we should be used to it by now.Yes we have the care of his trach down but there are days where it is very difficult.Sleep for one...with feeds and medicine schedule and his pulse ox beeping because he moves and it falls off..or the couple of times his heart rate dropped and we needed to readjust him.The turning him as he is not mobile enough to roll himself.All this takes up most of the night.Michael and I try to tag team it but some days we are literally walking zombies.
The other thing is being able to jump in the car and go somewhere..This has been a hard fact we have to do less of.We joke that we need a u haul to go places...This is what we pack to leave the house...Diaper bag,CPR kit bag and extra trach supplies,suction machine,Feed backpack with feed machine and feed supplies.It is allot of work to get out the door with Jaxson.Plus if it is to bitter cold we cant take him out.So leaving the house is very limited.
Michael and I go through spurts of feeling depressed and closed in..Not always but sometimes.I am by far not trying to say Jax is to much for us..Just stating that it can be overwhelming at times.I don't always feel this way just some days.I love Jax and his bright smile and when he looks at us with those beautiful brown eyes.The love i have for him is deep and i am so very blessed to be his mommy!I tell him all the time that GOD made him just for me!
Another hard thing is..Michael and I cant leave Jax to go have a date night!NO ONE in my family or my friends is willing to learn trach care.It scares them !Our insurance will not pay for nursing so its not like we can get a nurse in here to watch him while we go out.We are working on a supplemental insurance that will pay for some nursing care.A night out even just for an hour is what Michael and i need right now.
So in order to get some one on one quality time with my husband!We have coffee together while the kids are sleeping.We are in need of a break!