Moving On Up

I cannot believe that two weeks ago today Angel One came to pick up Evan.  What a roller coaster ride it has been since then. The last few days have also been a whirlwind.  Evan has moved half way down the hall and if you read my previous posts you know that is a big deal.  I can't believe that one week ago he was still intubated and had lines in his legs, neck and an IV.  Today he only has the line in his neck left and the IV is still in, but nothing is going through these lines.  They have weaned him off all of the drips and he gets all of is medication orally or by shot now.  He is still on a blood thinner and two blood pressure medications.  We are still waiting on metabolic test results (and are praying that they are negative even if that means we will never know the cause of his heart failure).  He will have another renal ultrasound and heart echo and his blood pressure has to be stable, but if all of those things come back OK they will send him home as early as next week (but it could also still be a while, it all depends on Evan).  Yes, you read this correctly.....they are prepping him to go HOME.  Last week we still thought we are going to be here for months.  I am not sure how I feel about that right now.  Of course I am ecstatic about the progress he has made, but I am also a nervous wreck just thinking about taking him home.  Are they sure he is healthy enough to go home?  He has had a nurse with him 24/7, how can I take care of him?  How would I know if something was wrong?  I am so used to seeing the monitor and can see his heart rate, pulse ox, breaths per minute and blood pressure.  He gets assessed every hour (I do think I can probably do an assessment now if I had a stethoscope).  I will need to take a nursing crash course and buy all of the equipment and hire a nurse.  They still don't know what caused the heart muscle to get so weak.  They do believe the blood clot caused the kidney damage, but since that has dissolved the blood flow to the kidneys is much better and hopefully the kidneys can recover fully.  We are also still really nervous about his heart function, but his vitals have been good and there is no rush to repeat the echo at this point.  He has not been eating good enough and has lost some weight.  If he doesn't do better over the next few feedings they will have to re-insert a feeding tube.

 I am trying not to get ahead of myself, but I am very nervous about taking home a newborn baby that is not completely healthy.  He will still be on meds and we will have to give him a shot twice a day. The hospital will still provide us with a lot of education (how can we tell if his heart function is getting worse again, how to give a shot, infant CPR and much more), maybe a blood pressure cuff and lots of follow ups.  He is considered stable now and they want to start the process of prepping him and us to go home.  I am praying that he will not take any steps backwards, only forward.  In my mind I was hoping that by the time we get to go home he will be completely healthy and normal, but that is not how it works.

Our lives have been turned upside down over the last few weeks and I know this has made me stronger and hopefully a better person overall, but it has been completely exhausting and stressful.  I hate that I can't have my family of four all together.  I have to always be away from one of my kids and that has been really hard.  I feel guilty when I spend all day at the hospital and worry about Hannah (since I stay home with her I normally spend all my days with her).  I feel guilty if I leave the hospital and worry about Evan.  It is a constant struggle and makes me sick to my stomach.  I know Hannah misses me and I miss her, but she has been a trooper through al of this.  She acts out a little more often, but I do think that is probably normal in our situation.

Thank you again for the continued prayers and positive thoughts.  We still need them.  We are still praying for a full recovery and complete healing.

We got to see his precious face yesterday after all of the tubes were removed from his face