Laundry LIst of Lessons Learned

Asher was in the intensive care unit from the day he was born July 16th 2009, to Dec 23, 2009.

We learned a lot during that time!

I personally learned that Asher does what he wants to do, when, and how he wants, and usually he does it slow.

I will go down a list of mishaps that occured while admited....

Day after norwood, first surgery, Asher went into Cardiac Arrest,, wallace and i were bedside, and witnessed how fast, and furious the staff at All Children's saved his life,, i trust those people, and always will.

Then days later Asher's chest tube was dislodged causing his lung to collapse,, he was put back on the vent.

Days later, Asher went into congestive heart failure, werent sure why, he went to cath lab, found he has a prety leaky tricuspid valve, and needed to stay on the IV drug milrinone till next surgery,, no one knew for sure, but we were all hoping the next surgery would take some work load off his heart, less blood volume in heart meant less leaking, meant no more milrinone, meant HOME.

Days later, Asher went into Respitory Arrest for no known reason,, he was put on the vent,,, he was later given a feeding tube.

In between this episode and the next we were moved to a private room, and besides a few blood clots everything was normal,,,minus the very loooooong painful, and sad process of weaning him off morphine,,, see asher wasnt allowed to cry,, asher was miserable due to lack of oxygen, and he just really like his morphine to take the edge off, so it was rough getting him off.

Months later, Asher got a fever, Asher began to struggle breathing,, asher had a situation that involved respitory support he had a clot in his PIC line that delivered meds it was located in his head,, the clot trapped bacteria, that caused him to become ill,, if we had not been in the hospital, he would not have made it,, i had time to get down the hall to get help, and that was with a nasal canula giving him 100% O2,, so God was good to keep us there.

Then because really he had no other access, and everyother day we were crossing our fingers that the IV team would get an IV in so he could get his heart saving med milrinone,,, they decided he should have his second surgery,, at first the schedule was looking at after christmas, then the dr.s surprised me with dec 5th!

It was better that they surprise me, truly i freak out, and if i had an entire month to stew would have probably ended up in the hospital next door (: jk.

The day came fast, everyone was a bit on edge,, the OR nurse held him, let him keep his clothes on, and take his bear with him,,, the nurses were ready, they all wanted to help,, they were attached to Asher, and we were all hoping this next surgery would be easy, but pretty sure deep down, we all knew it would be tough,,, little did we know how tough.

Asher had scar tissue, this caused a problem,,, after the actual repair was complete, he bled alot, they had to reopen him, and put him back on bypass.

After he came out of the O.R his oxygen was low, blood pressure high, all symptoms that happen after this surgery, also symptoms of a stroke.

The morning of Dec 7th 2009, I noticed asher wasnt making eye contact with me,, I told the nurse, she took notice,,,. I left to get a drink, she stood by Asher's crib,, she noticed a rythmic movement in his fingers and hand,,, she put her hand on him, he kept moving, she ran down the hall to get the Dr.,,, she took notice,,, she called to have cat scan.... our world changed forever.

Asher had a massive stroke, that involved his left frontal lobe, but that was causing massive swelling, and seizures..... wont go into detail, but will thank a few nurses, the Dr working the CVICU, and Dr. Jacobs,,, they fought to have nuero do surgery on a kid that really they didnt think would make it anyway, and they werent to eager to save.

So they took Asher back for a craniatomy,, this scared me bad,,, two major surgeries in such a short time,, i kissed his head, and cried.

My husband and I were prepared for all things cardiac,, we were in no way ready to even begin to understand that we may raise a baby/boy/man that may never function normally??? How did that happen? How were we alone in his room waiting to hear how his brain surgery turned out??? How were we going to wait the weeks it was going to take to find out how extensive his brain damage was,, we knew there was damage, but not what it had done to him.

I will never forget sitting with wallace in asher's room where his crib had just been,,, waiting, waiting,, i cried, and was so upset i just sat there and threw up,, over, and over, my heart was broken,,, i remember calling my parents and crying so hard, asking my dad why God did this? what plan was in this????

For days later Asher had seizures,, but he everyday would progress,,, i never left his side, and if I did we made sure either wallce, my mom, or wallace's parents sat with him, but that lil boy was never alone,,, I wanted him to know he would never be alone, and if he went to heaven we would be with him when he left this earth.

Each day he got a bit better, each day the nuero team would be surprised, they would huddle around the crib, and discuss, each day they would retract some of the debbie downer news they had said the day before,,, asher would react to pain, he would move his leg,,, nobody knew if he right side would ever move again, or if he would be able to turn his head again,... he does it all now!

Asher is a living Lesson, that God uses ordinary people to to extaordinary things, he used that special nurse a married middle age woman with kids, one of her kids is a hairstylist,, to save my son! He used Dr. Jacobs a man that was once a boy just like asher develop the desire to perform a surgery so complex most cant even grasp the general concept on a heart the size of a walnut!!!!

Asher taught me there is always hope,, as long as he is alive he will fight, and even if the day comes that God takes him home,, i still have the hope that I WILL SEE HIM AGAIN, we will never be completely seperated.

A nurse asked me once where i got my strength,,, i said from God,, and i meant that,,, but also I got my strength from my son,, he needed me, if not me then who?? Who would learn the anatomy needed to discuss his care with the doctors?? Who would learn to care from his feeding tube, and give meds? Who would learn how to look for blood clots, and practise phyical therapy??? God gave me a purpose, to be this best mom I can for Asher,, lesson learned.