Life is............

A runaway roller coaster.............

Steve and I love roller coasters however we could have never anticipated being on a permanent one and we welcome the day it decides to pull into the station and give us a moment to breathe.  Porter had a little bit of a rough day yesterday with his food and spit up about 3 times but was stable when I left for the night.  When I talked to the nurse around 11:00 he was doing fine.

 I walked into Porter’s room this morning and our nurse said to me~ Porter had a bit of a rough night.  I said Excuse Me??  .  It seems that around 4am Porter’s heart rate escalated into the 150’s and his respiratory rate was in the 60’s to 80’s.  From what the day nurse then told me, the night nurse tried to get someone from the “red” team (that’s the team who follows Porter) but no one would come and look at him.  She said the nurse called the attending physician and he told her that is just how Porter is and he wasn’t available.   From what I was told, the nurse did not take that as an acceptable answer and went over to the “blue team” which consists of PA’s and Nurse Practitioners and thankfully one of the RNP’s came over and examined Porter.  Nothing seemed to calm him down so they gave him a dose of Adivan and Tylenol.  Porter LOVES his Adivan so that did the trick in getting him to calm down.  However his HR was still elevated and he was breathing fast.  He was sound asleep when I came in and his HR was in the 130’s when it’s usually in the low 100’s.   You want to talk about one pissed off mama.  When they came around for rounds in the morning the fellow was jovial as usual and asked how I was and said he heard Porter was a bad boy overnight.  I said well~ actually I’m quite pissed off and disgusted at the lack of care that my son received overnight and he wasn’t misbehaving but he was neglected.  The fellow looked at me like a deer in headlights and our nurse told him what she told me and he seemed shocked however the resident knew what had happened.  The fellow apologized and said he hoped that there was some miscommunication.  I told him it was absolutely unacceptable and the last thing I would have expected from such a well renowned facility.  Thank God our nurse was proactive.   Needless to say I will be staying in Porter’s room tonight.

Porter’s HR continued to be on the high side today and at times it’s all over the place with being in the 140’s and dropping to the 1-teens and back up again and his wave form is a little off.   He has tolerated his food better today, the little man needs to get some weight on him, he’s lost some weight over the last couple days from vomiting and is down to 4.88 kg. 

Porter had an echo yesterday and one of the things they have been watching is his LVOTO (Left ventricular outflow tract obstruction).  When we arrived it had a velocity of 2.3.  The echo on July 1sthad a velocity of 3.3 and yesterday’s velocity was 4.0.  In speaking with the heart failure doctor today I expressed my concern about the obstruction getting worse, Porters rhythm getting out of “whack”, and his failure to grow.  I expressed to him that Steve and I both feel that the myectomy will help his entire system and allow him time to grow.  He said they are really hesitant to do the surgery on infants who aren’t having symptoms and one of the symptoms he listed was failure to thrive.  I expressed that Porter is not thriving at all and hasn’t since he’s been in the hospital.  He’s struggled to get over 5kg since end of Feb early March.    He said he was going to review the echo in detail and if necessary talk to the surgical team again.   

Porter was supposed to come for a surgery, stay for a couple weeks and go home.  We are approaching two months here and he is not progressing.  Something needs to be done.  He’s 7 months old and is the size of a 3 month old.  He also had a brain MRI which showed his brain is smaller than what it is supposed to be.  This is most likely due to lack of oxygen over an extended period of time whether in utero or when he was born.  There is nothing to be done about this now, just watch his development as he grows.  This child has been through so much and yet we are still able to get a smile out of him every now and then. 

Really I think we need to stop telling him when he’s about ready to go home because it seems like every time we do, something happens.  He probably just loves the attention from the docs and nurses but what he isn’t getting is that he’ll have more one on one care at home and he’ll be with his mommy, daddy, big bro and doggies too!  Not to mention he has two beds to choose from. 

It was so awesome to have Steve and Oliver here for two weeks.  We were able to take Oliver to some of the Houston attractions (zoo, children’s museum, aqurium, space center) and he rode the metro train several times which he thought was soooo cool.  There’s an electric model train set up in the building across from where Porter is so Oliver LOVED going over there and making the trains go.  It was great to see him spend some time with Porter even though the hospital environment got old very quickly.  We have been blessed with two amazing little boys.  All of the nurses were sad when Oliver left and commented on how well behaved he was.  They were impressed by his spirit especially given how his life has been turned upside down.   They say when you have a chronically ill child you find a new normal in life~ we’re hopeful our new normal will soon begin in the comfort of our home and out of the hospital. 

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