otto update icu jail break

we just might break out of ICU today. WHAT?!!? yea you heard me. we came in to otto’s room and it was all tidied up and ready for us to get the boot. the majority of his machines are gone because we don’t need em! i’m still in shock. just absolute shock and awe about how this week has gone.

they thought that otto was going to need to be weaned off cpap for a day or two and he was off it in a few hours. they didn’t think he would last all night on just forced air but now he’s completely off any assisted oxygen. he has just completely turned things around and taken leaps and bounds in past days. by the end of the day we were able to pick him up anytime we wanted. the only line he has in still is his central line, this allows them to take labs without having to poke him each time. that should come out today if our labs come back good. he got his “art line” out yesterday which was the big ugly one on his arm that also stopped him from having to get poked all the time and it also kept a really accurate reading on his blood pressure.

he is still a little hornet (now everyone calls him that) because he just doesn’t like to be bothered (and he gets bothered a lot here) i tell him it’s for his own good. but there are so many different things about him now even if the surgery wasn’t 100% successful. his cry is so different. it actually has a voice behind it. it sounds weird to want your kid to have a louder cry but it means his lungs are clearer and he had some vocal chord issues that are clearing up. before the surgery we had to be so careful with his meds because of his potassium levels being too high. he had special formula (that i think contributed to his reflux) and we couldn’t give him more blood pressure meds because it would affect his kidney functions. those issues just don’t seem to exist. in fact they’ve been giving him potassium to raise his levels. so i’m anxious to get him feeding and see how he does.

his work of breathing is still pretty tough and he still has mild retractions (the sucking in right below the rib cage) but it is not near as severe as it was. we are pretty much going home with a new baby. i’m anxious to hear what we have to do to get to the next surgery. it terrifies me to go home again and wait for him to go into heart failure again. by the time we got to surgery they classified him as advanced heart failure rather than the beginning stages. you know what freaks a parent out? being told woah he’s in advanced heart failure. yea that will freak you out. but i keep telling myself we got through this we can get through the next step.

faith can move mountains friends. it did this week. i’m still in absolute awe of the miracle we witnessed this week with our little otto. i’ve been in the lowest of lows and the highest of highs. there were times where i just had to throw my hands up and go for a walk as hard as it was to leave my son in the hospital room. this week was full of just such grueling and hard realities, moments, emotions and decisions followed by floating and skipping around the highest mountain peaks. i’ve cried the loudest of tears begging God’s will to match my own and i’ve laughed when otto has just surpassed every expectation set ahead of him.

we just talked with the cardiologist this morning and it’s looking like we are going to get move to a general floor this afternoon and then we will be here over the weekend. pending how good he does with feeds we will be discharged early next week.

this is just amazing news and i’m amazed at God’s ability to work miracles. I’m amazed at all of the good people there are in this world from the surgeon to the nurses to the care team to the family and friends who brought us food, laundry, whatever we needed, the people that fed our animals, offered prayers for otto, cleaned our home and even decorated our porch.

i’m seriously just in awe of it all. some day and i’ve said this before, i cannot wait to tell otto about all the wonderful good people and things that are in this world.

thank you so much.

abby joe and otto