Levels are Therapeutic

The doctors just finished rounds.  All great reports.  His Prograf levels are "therapeutic", they want them between 10-12 and his was 10.  They will wait and see what tomorrows is, if it is still therapeutic, then they will stop the prednisone.  He is still retaining some fluid, this morning his face was a little swollen.  They are giving him an extra dose today and changing the timing to a little earlier in the evening.  He has been up a lot the last few nights peeing a lot.  His sleep has not been the most sound sleep.  This makes him very tired during the day.  We're hoping by moving the timing of his lasix from 8 to 6 PM he can sleep a little better at night.  Technically he could go home probably tomorrow, but, with the "wound Vac" on he has to wait until Tuesday.

This morning before rounds, Sierra went and hid a bunch of chocolate eggs around the 3rd floor.  Gage had to go find them.  Not sure how many there were, or if we got them all, but it encouraged Gage to get out and go for a walk.

His appetite is slowly improving.  They are doing a calorie count to see if he is eating enough and they can take the feeding tube out.  Let's hope he can be done with that tube.

Plans for friends to come visit today.  Easter egg hunts, baseball games, funeral and playroom in our plans for today.

Busy Day, All Wonderful

I apologize for the late post, it has been a wonderfully busy day.  Let's just start off by saying, Gage is doing great.  He can't leave the hospital until his Prograf levels are where they want them.  Prograf is one of the 2 medications he is on that suppresses his immune system.  They want the levels between 10-14 and today he was 5.  Usually they adjust the med and you don't see the results for a few days.  His incision on his sternum has been leaking in one spot.  Nothing major, the surgeon (Dr. Meata) is just concerned that where liquid is coming out bacteria can get in.  So, they put a vacuum seal type device called a "wound vac" to keep any air from getting in so he won't get an infection.  He is now tethered again to a hose and a 20 lb. machine.  He wasn't particularly thrilled for this.  It is not permanent, but will be on for 5 days.  Unfortunately, he cannot leave the hospital with this on, so it looks like he will be in the hospital at least until Tuesday next week.

He attended the hospital school today.  He was really excited because today was art day.  It was really weird to take him there and not have to stay.  He and I have been tethered at the hip for almost 17 months.  I wasn't sure what to do with myself.  I returned to his room and my question was answered.  The pharmacist came in and discussed with me the 16 different meds he is currently taking.  After talking with her, we had fun visitors come. Gage took a 2 hour nap after.  Not sure he is getting great sleep at night.  He was pretty exhausted today. After his nap, he had physical therapy. He had a real treat, as his therapist was Sandra from the Lindsey days.  We don't get to see her as much anymore.  Gage started the session off ornery, but by the end she had him smiling.  Later this afternoon, after I grabbed Hunter from the bus, we had some of Gage's friends come and his teacher Mrs. Blazensky.  I hesitate to mention the visitors, because I don't want to forget anyone. But, it has been a really fun day.

Unfortunately, he will not be out of the hospital for Easter, but his siblings will go to the Easter egg hunt and represent him well.  I did hear the hospital might being doing something.

Jason is busy in Oregon, barely coming up for air.  If I remind him that there is only 4 more days of tax season, it causes a panic attack instead of comfort. So, I will just keep cheering him on from the sidelines.

A fun "Nixon" dolphin brought in by Mrs. B from the staff.

 Some of Gage's friends.

The "wound vac" 

 PT today

Drum Roll Please!!

And the biopsy results are........ a big fat ZERO!!!!!!!  That means minimal prednisone, and NO moon face.  Sierra and Lindsey will be are very jealous!   The heart pressures in his heart were high, 16, they want these numbers in the 5-9 range.  However, they were not surprised, it relates to all the fluid he is still hiding in his body.  All the rest of his IV's come out today leaving him with nothing but the NG  feeding tube.  IF he can eat well, then that will come out as well.  he is starting to get a little bit of an appetite, but we shall see.  Today he received the okay to head upstairs to the 3rd floor and OUT of the CVICU, where he will be able to go to the hospital school and the playroom.  He is excited for that.

The answers to the quiz are: B-A-D-C.  The B is before ANYTHING was done, showing only the enlarged heart. A or course is he HeartWare with all the other lovely stuff he had for 512 days. The D is right after transplant.  You can see the 3 chest tubes wrapped up inside his body. The C is deceiving, it looks enlarged but is actually perfect, just the angle is different. On the C you will notice the pacer wires that were used after transplant to assist the kidneys, but those wires have been taken out now.

Jason returned home yesterday, so we are here without him.  He will probably return in a week and a half or so.  We all hate being apart, but are happy these times are coming to an end soon.

****
On a much more serious note, as we celebrate these great strides Gage is taking in the right direction, our minds are heavily with the donor family.  You feel all sorts of emotions, guilt, that our child survived, and guilt for feeling joy at how well our child is doing because of their gift.  Sorrow for that child not with their family anymore. Devastation at the emptiness they will have in their home. So many other emotions.  These emotions have been felt with each of our children's transplants.

A few days ago, a local family in our church we know well, suffered a tragedy with their youngest two year old child.  Such an irony as the timing was close to Gage's transplant.  We see the devastation and sorrow they and the rest of the community are experiencing.  It is a blunt reminder of what Gage's donor family must be experiencing.  We feel guilty we prayed that Gage's transplant would happen 'soon'.  My heart aches for all parties involved.  Please keep these families in your prayers as the mourning is not a short process. Please know, I say this with the most reverence for our friends who lost there precious 2 year old, and the donor family.  May they be comforted and feel Gods love for them.

Gage ready to go to 3West 

 Gage with no lines in his hands." AAHhhhhhh, feels so good."

 Heading in for yesterday's biopsy

Yah, we will cut it!  I'm not sure he wants to cut it?

Wednesday, April 12, 2017 1 Week Post Transplant

So here's the deal.... It has been a week now so Gage has his first biopsy today.  It is scheduled for 1:00 pm.   The transplant team has changed the steroid protocol.  IF (big IF) his first biopsy is a 1A or 0, then he is only on prednisone for 10 days.  IF it is a 1B or higher then he is on prednisone for 3 months!  Remember the prednisone brings with it 3-4 other meds that are taken due to the side effects.  This is a big deal! Prednisone brings the big steroid moon cheeks, attitude swings, mouth fungus, and all the other unfun stuff that comes with steroids.  So, we are REALLY wanting a 1A today.  However, the doctors have started some of his immunosuppressive drugs a little later due to his kidneys needing to recover.  They warned us that there may be some mild rejection for his biopsy due to him not having the full coverage that most patients have.  Results won't be in until tomorrow.  So here's to a 1A or better!

He had a good night, but is a little tired this morning.  I'm not sure how good he really slept.  He is not allowed to eat or drink anything until his biopsy at 1:00 PM today.  It is probably good that he is sleeping so he won't get grumpy.

Jason will most likely return home to Oregon today to finish out the tax season as the "pressure" is building.

If all goes well with Gage's biopsy, there is a good chance he can go up to the 3rd floor tomorrow. His blood pressure continues to not be as stable as they would like it.  They are adding some more blood pressure meds after his biopsy and will see where that goes.

All-in-all, he is almost his normal self and continues to improve each day.  Yesterday, our child life specialist brought him a Wii.  It was a great motivator to keep him up in a chair and going for walks.  He could only play while sitting up in a chair.  He watched a movie with Hunter and was laughing and giggling through it.  Definitely on the up swing.

Below we have a little activity for you....

So here's the puzzle...

Can you arrange these chest x-rays in order chronologically?

Picture A 

Picture B

 Picture C

Picture D

Tuesday Morning April 11, 2017

Gage slept well last night.  He was awake and watching Ratatouille when we arrived at the hospital.  He was even hungry and wanting pancakes and sausage.  He took his many pills like a champ, all at once.   I couldn't believe it, some of them are "horse pills." His potassium has been low, so they gave him a big oral dose through his NG tube.  Unfortunately, the nausea set in and lasted for a couple hours.  By the time his tray came, he was too nauseous to eat.

In rounds the doctors discussed moving his IV meds to oral.  Continue working on his blood pressure.  The goal is to get him on oral forms of blood pressure meds and off any IV forms  so they can remove his last 2 lines hanging on him.  They started his immunosuppressive meds oral and he will have his first biopsy tomorrow at 1 PM.  IF all goes well today, he could possibly recover in his room on 3 West tomorrow.  The ICU wanted to monitor him for another 24 hours.  I'm good with all of that.

He is definitely progressing in the right direction.  If he continues the way he has been going the last few days, he could be discharged within a week.

Jason is looking at a good time to head back and trying to finish up tax season.  The stress is mounting a "little".  It is really hard to figure that out.  Last night, Hunter had a baseball game.  I was able to stay at the hospital with Gage and take him on his 3rd walk and Jason went to support Hunter at his game.  It has been really nice having Jason here, but I know I have enough support here that he can return and we will be fine.  Gage has turned the corner and is moving forward.

We are so truly blessed and are humbled by the out pouring of support and love.  Our thoughts are with the donor family at this time.  We will prepare to write our letter to them to thank them for their priceless gift, and hope that through that letter, they can find some form of peace.

He felt well enough this afternoon, to start working on school work and play the WII.

Monday Evening

Good evening.  Back to school and work for most of us. Gage had a good day except he slept most of it (which means he could be up for much of the night).  We did drag him on 3 walks today.  Each walk was a bit further.  The last walk was around 8:50 pm and was 2 full laps around the 2nd floor.  All good!!  His weight is down quite a bit, he has lost 7 pounds since the transplant.  This is the very reason they try to flesh him up before transplant.  As he gets stronger and eats a bit, it will come back, but 7 pounds is quite a bit for this little guy.

Regardless of Gage's wishes, Stacy did wash hair this morning.  They use this pasty stuff for the EEG leads, so his hair was kinda gross.

This evening Hunter had a baseball game.  I went to support him as Stacy and the girls stayed here with Mr Aurelius and visited with some fun visitors.

When I get the chance, I want to have one of the doctors pull up and compare x rays of Gage's chest pre-transplant on the HeartWare, most transplant with the chest tubes, and what it looks like now. Should be really interesting.  I will share those pictures once this happens.

Heard some pretty rough stories of families around here.  We are still filling blessed to still have all 5 children with us.  Some families we know are not that fortunate.

That's it for now. I will let the pictures do the rest of the talking.

 Thank goodness we cut his hair pre transplant.

Still not feeling like himself.

 His friend Ben from school came by for a visit. 

 Missing Megan in the Sobrato Room.  

Hunter playing a little catcher in tonight's game.