LOOONG Night in the Wrong Direction

The hope was, that with the added diuretic that was started yesterday, Gages condition would improve and he would start feeling better.  Gage's body has a different plan.  I'm not sure what his fluid balance was over the last 24 hours, but by looking at Gage, I would say it is positive.  All day yesterday whenever he tried to eat something, he would double over in pain and thrash around in his bed because he hurt so much.  We tried hot packs, Tylenol, walking and going to the bathroom.  It seemed like the only thing that worked was time to rest his gut, by not eating.  He fell asleep last night around 9:00 PM, so I thought I should take the other kids to the RMH.  As we were walking out the door of his room I looked up and noticed that his oxygen saturation was at 86% (this should be above 95%) I had an uneasy feeling as we left the hospital, that I would be back soon.  Sure enough, as soon as I walked into our room at the RMH, his nurse called me.  They were trying to get some oxygen on him and he was throwing a fit about it.  I gathered up the kids and we headed back to the hospital.

To make a long story short, his oxygen saturation kept dipping into the 80's even when they had him on 4 Liters of oxygen (quite high for a nose prong oxygen).  They kept trying to give him his nightly feeds, but it just caused more intense abdominal pain.  I would have them pause the feeds for half an hour, he would just get calmed down and then the feeds would start up again.  Again, putting him in agony.  I sent the kids back with Sierra at midnight.  Then stayed there with Gage.  At 1:00 in the morning, we decided to take a walk to see if that would help his stomach.  We had tried all our other tricks, hot packs, Tylenol, going to the bathroom, rubbing his back and shoulders, nothing worked.  He said, "What do I need to do to feel better mom?"  I said lets try and go for a walk.  He sweetly said "okay."

We walked a lap around the third floor and he felt a little better after that.  Well enough that he was able to fall asleep.  From 2-4 AM, every time I dozed off, his low oxygen alarm would go off.  The nurses would come in and turn it up a little and watch and then leave the room.  Finally, the fellow came in and said that it was time to take him downstairs to the CVICU and put him on a CPAP machine to help him breathe better.  A CPAP machine looks like a little pig nose that goes over his face and pushes oxygen into him a little more forcefully than little nose prongs.  They gave him an extra dose of diuretics, took a chest xRay and brought him to the CVICU around 4:30.  He was one very mad little man about the CPAP.

He has continued this expression of utter frustration all morning, yelling and crying during rounds. It was decided in rounds, that they are going to do 3 things: 1) start a PICC line on Gage ( a longer lasting IV that goes further through the vein.) 2) Get an ultrasound on his right side and see if they need to do a chest tube if there is an accumulation of fluid there or let the diuretics take care of it, and 3)Push the diuretics a little harder.  They are trying to be careful with this, because his kidneys are still in a healing condition.  The harder they push the diuretics the harder it is on the kidneys. The doctors are feeling that this is all related to the rejection and that the steroids will kick in and he will start feeling better.  I hope so, because this is REALLY getting old.

 One very unhappy camper!

Added words from Jason:

April 28, 2017
4:30pm

Jason here, wanted to add my 2 cents.

Since Stacy's report, nothing new to report other than Gage has not dropped in the fluid balance.  Stacy and I are both have the feeling they are going to take him to the CVICU and start additional IV's.  Time will tell.

Below is my post comments from earlier today on the flight home from Calif.....

10:00 am

Feeling a bit discouraged today.  I am currently flying back to Oregon.  Gage is in the hospital and won’t be getting out for several days.  He is still in rejection, retaining fluid and looks puffier than ever before.  He has been given his first of 3 large doses of IV steroids, 2 doses of IV lasics, and is monitored closely.  They are going to add an additional IV to help with the fluid retention.  Still not much of an appetite.  We would LOVE to see him start eating and peeing off some fluid.

The hope is once his 3a rejection backs off and the fluid is pulled off, he will feel, look, and act much better.  How to accomplish that and keep it there is the questions they will aggressively address over the next few days.  As I said before, they are using an 18 inch pipewrench with a cheater bar to adjust his meds.  Once this is under control, they will go back to using a nice little ¼ wrench to fine tune him.

So I have been in Calif for nine days and am now flying back to Oregon.  I am so glad I was there for his last his last 2 biopsies and helping with the kids.  Now I need to get home to check in with Megan see how things are going on the home front.  I just hate to leave Stacy with all the responsibility of a sick child in the hospital coupled with the activities of the other kids (homework, sports, school, activities, etc.) But there are times I need to be home, and this is one of them. Not sure how long I will stay in Oregon this time, maybe a few days, maybe a few weeks.  It all depends on Gage’s status and if they get the rejection and fluid retention under control. 

There will be more positive posts, he will get better, it’s just hard to leave my family in this situation. Having said that, I am excited to see Megan and be her father.  We love and miss her.

Need to give a very sincere shout out and thank you to all of those who have provided meals, care packages, cards, rides to/from the airport, rides to/from our kids activities, airplane rides, comments of love and support on our blog and facebook page, and those that have helped in Oregon with Megan and our home there.  We are so grateful to each one of you, many of you we will never meet. We so appreciate your love and support. Sometimes we feel we will never get out of this.  Stacy will be spending her 3^rd birthday in a row in Calif.  She would love to be home for the next one.   We know the long term commitments and struggles we will have with our heart kids, just know your love and support lift us up.  Thank you.  

Till next time,

Jason