Dug up some good news, but we had to look.

I figured it was time for some good news.  I have to admit, it's been a bit of a doggy downer lately.
The good news is they are saying the poor kidney and poor heart function should not be permanent. He should come out of this mess he is in.  We also have a full team of heart, kidney, and ICU doctors working hard to treat the man-of-steel. I told John, one of the heart doctors, to not give up on our little guy.  He told me wouldn't give up if we didn't give up.  They really are working hard to help him.

Having said that, he had another lousy day.  I mean lousy!  His kidney's have not produced any real urine in almost 2 days, even with high doses of IV medication. He has retained a lot of fluid and looks very swollen.  The way I understand it (and they had to repeat it in ways I could explain it to my parent) is the 3a rejection created poor heart function, not in the squeeze of the heart, but in the relaxing of the heart.  This created poor blood flow, and high heart pressures.  This in turn shocked the kidneys to the point that they shut down (temporarily they say / I hope). With the poor to zero kidney function, he began and continues to retain fluid all over his body, which makes for a very lousy day!

To battle this, they have done a number of interventions.  They have added a 2nd chest tube on the right side and have drained around 500 cc from that tube. They have began dialysis to pull the fluid off at 20cc an hour and will run this machine for 48 hours.  To do the dialysis they put 2 large ports into his juggler vein in his neck, pull the blood out of one ports, into the machine, pull the 'junk' off, then back into his body through the other port.  This will force the fluid to come off with out depending on the kidney's.

They have also added an arterial line  to monitor his low blood pressure and elevated CVP (or heart pressure).  Pulling the fluid off to fast will affect his blood and heart pressures.  They have also dropped and added some of the IV medications.

He has taken a few sips of water, but each time he does, he throws up.  Basically, he feels like crap!!

Stacy and I have thought a lot about Zack, Jeremy, and Christian.  Kids that we knew here at the house.  They too had rough starts after transplant and had an unfavorable outcome.  But again, the good news is that they say it is not permanent.  He should (no he will) come out of this.

As for tonight, Stacy is staying at the hospital.  When Gage is feeling this crappy he only wants his mother.  I am here at the RMH helping the kids with the Sunday night routine of meds, and preparing for the week. Stacy and I are both running on very little sleep, but right now we are needed.  Hopefully Stacy can get some rest in the good ole' 3 chair combo. ughh, good luck with that.

That's about it for now.  Really nice to be home for Megan's track meet and prom.  Wish I could have stayed longer, but not now.  I left Oregon at 2:00am to catch a 6:15 flight out of Boise.  Sure glad I got here when I did.

As a concluding comment for the evening... we had a nice visit from Rob and Hitsch Dains.  Hitsch (Rob's son) read a scripture that had some really good advice, "...let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."  To me, his means I need to do all I can with a good attitude for my family, be patient, show some faith, and God will bless you.

Hoping for a good night and better day tomorrow.  He's got to turn a corner soon.
Jason

 

This was the only time we got him out of bed today.

 You can see the dialysis machine on the left side, and the ports below his right ear.

 Getting ready to put in the arterial line. 

 David and crew came by for a visit.  You could tell they were all shaken by the condition Gage was in.

 A few pictures from Megan's track meet.

 

 A favorite prom picture with Delbert and I in the back ground.  (And they thought we were joking)

 Megan, Roper and Savannah.

Moving on to Dialysis

Gage slept well last night.  I went to the RMH at 11:00 to get some sleep.  I was called at 3 AM and was told Gage was asking for me.  I returned to him sleeping soundly and sat next to him rubbing his hand.  They did a few adjustments and changes over the night.  They tried giving his two doses of diuretics really close to each other so they would be more potent.  They also started him on some nitrous oxide to his CPAP to try and open the vessels in his body.  With the Milrinone going, the increased lasix and the nitrous, nothing worked.  His pressures didn't budge.  They are still 21-23. His total output for the last 24 hour was 110 ccc.  Not a whole lot of pee.

His weight was up from 24.7kg to 25.1kg. Going in the wrong direction.  He is looking puffier now in his hands and feet and his poor little belly is really tight.  So, the doctors discussed in rounds, the new plan.  They are going to start dialysis hoping that will start pulling off the fluid and relieve the pressure on his kidneys from all the fluid built up in his body.  They are going to place a second chest tube as the first chest tube is draining well (almost 200 cc since it was placed), however,  there is a spot in the upper part of his chest that the first chest tube isn't getting to.  Presently he is getting the chest tube placed and the central line in his neck for dialysis, while he is under sedation. He is absolutely miserable.  Please let this work!

Nope, No Improvement Yet

Gage has been mad and frustrated all day.  For the few seconds I dozed off in the chair next to his bed, he was yelling under his mask at me.  Really not liking he CPAP. The power was off at the hospital today for 12 hours, so there was no TV available.  I brought my laptop knowing full well it would be needed.  I was able to get Gage calmed down and we started watching a movie together.  Then the IV team came in and said they were going to start a PICC line.  The calm ended and he was instantly mad again and crying.  I feel so bad for him.  Here he thought he would get through the transplant and he wouldn't need anymore of these things.  But, here we are adding them back slowly.

He was quite a trooper for his PICC line, we watched the original ET for it.  Such a classic movie.  After the PICC line was placed the doctors reevalulated Gage's fluid status.  He had only peed twice and each time was only 100 cc.  We are a long way from peeing the 700-800 cc's the doctors would like to see.  They decided to place a chest tube, this time in the right side instead of the left, to see if that would help take the fluid pressure off.  With the PICC line, the doctors can measure Gage's pressure directly without having to go to a cath lab.  Wednesday these numbers were 16-18 (remember, they want them below 10) today they were 24-27.  A significant enough of a change, they also decided to start Milranone.  Milranone is that wonderful medicine that all of our children have been placed on when first diagnosed with heart failure.  This medicine helps the squeeze of the heart.  Gage is not having difficulty with the squeeze of his heart, just the huge amount of fluid that they can't get ahead of.  They are hoping starting the milranone will help the heart and he will start peeing.

I had the discussion with the doctors of "so then what?" If these don't work, what is our worse case scenario so I can prepare himself.  IF he can't keep his oxygen level up, then the next step would be putting him back on the ventilator.  IF they can't get the fluid off and his kidneys get really mad, then the worst case scenario would be dialysis.  So, we will continue to wait and pray that he milranone helps before we take on the worst case scenarios.

The kids are away at friends for the night, Jason is with Megan at her prom and I am at Gage's bedside.  We are all where we need to be at the moment. I reiterate Jason's last message of the gratitude we have for so many people willing to help us out.  Bring meals, run kids around, let them stay at your houses and many prayers in our behalf.  Thank you so much, we are truly blessed.

Gage with his newest chest tube and picc line.

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

Working on a Plan

The doctors just finished rounding on Gage.  His night was okay.  Jason stayed here with him through the night.  There were alarms going off about low oxygen, that were more annoying than alarming.  Other than that, just a usual sleepless night in the hospital.  The doctors have estimated that Gage has an extra 1 Liter of fluid hanging out in his little body.  Yesterday they started him on an IV dose of lasix.  This is twice as potent as his dose he takes by mouth.  Much to my disdain, it did not do a whole lot.  Instead of him being a negative fluid balance ( More  peed off than drank) he was positive 600 mL.  Which means, he drank more than he peed and that much more fluid is sitting in his little body.  You can still see it in his poor, puffy face.

The goal for today is, start him on another diuretic along with the lasix (in other words get him peeing) and continue his heavy IV doses of steroids.  For the steroids, he will get a total of 3 doses IV and then they will transition him to pill form that he will be on for at least 6 months.  Today, he receives his second of 3. We were hoping to be discharged tomorrow, but it doesn't look like that will happen with his fluid hanging on like it is.  I am fine staying until this little guy gets feeling better.

On a more positive note, the steroids are starting to work on his appetite.  Last night he was actually interested in eating.  Not a lot, but at least was asking for food.  This is more than he has done in the last 3 days.  Bites here and there, but at least SOMETHING.

Jason left this morning to head back to Oregon.  It is really hard when he leaves, but he really needs to be back this weekend.  This is prom weekend for Megan.  The only way she is allowed to go is if her dad goes as her chaperone.  So he really needs to be back to support her in that.

It has been really hard being apart from Megan.  If we had to do it over again, we would have never let her go home.  At the time we thought Gage would get his transplant and we would all return home shortly after the school year started.  She is a little head strong (not sure where she gets that 😉) and really wanted to go to school in Oregon,  The extra stress this has added for all parties involved, has not been worth it.  To Jason's brothers family who have let her stay there, to Jason who feels so pulled as to where he needs to be, to me not feeling like I'm a part of her life, and to her, who is tired of being alone and going back and forth between our house and her uncles.

I am so glad, that we have an end to this "living apart" in site.  So many times I think, we'll fix that when we are done with this.  However, the 17 months of not being home and not being together as a family is starting to take a toll.  I feel inadequate as a parent with the struggles that I see in our children who aren't sick.  Struggles for attention that is needed, issues at school, feeling left out and alone, wishing they had more of a social life, wishing they had less of a social life.  All daily life struggles that are still there, but aren't addressed at the time due to attention needing to be to the child who is sick.  We have some pretty amazing kids who have really shined when faced with the difficult circumstances we force them into.  BUT, sometimes, I feel we miss the goal by a long shot.  So here's to another month or 2 of pushing through until we can be "us, the Bingham FAMILY" again.

Well that stinks!

Over the last few days, Gage has been getting more and more puffy.  His body just keeps hangin' on to the extra fluid.  This extra fluid has been causing him to feel nauseous, tired and plain old "yucky."  We have tried to increase his diuretics to get him to pee it off more, but it doesn't seem to be working.

Yesterday was his third biopsy.  His heart pressure numbers were double what they were last week. They were 8 and now they are 16. Not good, they want these numbers below 10.  This morning he was just tired and nauseous when he woke up.  He took his medicine and ended up vomiting 15 minutes later.   All of this is looking way to familiar to the ole heart failure days of Sierra, Lindsey and Gage of old.   We called to let the doctors know what happened and if we should redose him. They were hearing the report and not feeling good about what they were hearing, so they admitted us to 3 West to figure this out.  While here, the biopsy results came back..... 3A rejection!!  Not what we were wanting AT ALL! This is the first time we have had this high of rejection this close to transplant.  We have only had one other 3 and that was when Sierra was changing medicines years ago.

So now what?  They are going to pump a high amount of steroids into him through IV and hopefully get him to pee some of this fluid off.  They will repeat his biopsy next week and see where it is then.  He will now stay on prednisone like the girls were on. (grrrrr)  Puffy cheeks and appetite here we come!  This is why they keep us close and biopsy so frequently post transplant.  We are glad we are here and the amazing team of doctors are on top of it.  We will get Gage feeling better in no time.

 Not happy to have to be admitted.
Below is a picture of the swelling in his face.  This was yesterday before biopsy.

No more staples!!

Biopsy #3 coming up.

Just wanted to make a few comments before Gage's 3 week biopsy.  Yes it has been 3 weeks since the transplant.  Sometimes that feels like just yesterday, and sometimes it feels like a life time ago.  Anyway, Stacy and I are a little nervous for our little Man-of-Steel.  The two big issues we see are his weight gain and lack of eating.
His weight is up NOT because of him eating, but because of fluid retention.  They are increasing / changing his meds around to help with increase fluid retention and tummy aches.  Sometimes they tweek his meds with a small 1/4 inch wrench, but this time it feels like they are using a 18 inch pipewrench with a cheater bar to adjust his meds.   With that in mind, Stacy and I are wondering if they might admit him for some IV treatments.  With this increase if fluid, his heart pressures will be elevated.  Just have to see.  His biopsy is today at 10:00 am but sometimes they get pushed back if other emergency cases come up.

I'm starting to get anxious to get home to Oregon, but also know this is where I need to be, especially if Aurelius get admitted. As always, Stacy and I are just preparing ourselves.

On a much lighter note, our good friend and Bishop Tom Isaacson was in his back yard and somehow caught a rare but beautiful bug or butterfly.  If you see him congratulate him on the find.  I believe he has named it his Precious and has it in a jar to show his friends.
Keep on Keepin' on.....
Jason

Notice the puffiness around his eyes.

And the staples come out today!!

 

Life Outpatient

It has been so nice being out of the hospital!!  Gage has been doing well.  Sunday we were able to all go to church together, which was very nice.  After church, Gage FINALLY cut Jason's hair.  There was a lot more hair there than I thought there would be.  It was quite a symbolic gesture of the journey Gage has been through and the new life that is ahead of him.

Yesterday, Gage went to school for the first time since transplant.  Apparently he was a lot more nervous than he let on.  I had a meeting first thing in the morning with the district nurse, principal and his teacher to review the "new" arrangements for Gage.  He sat out on a soft couch in the office during the meeting.  The meeting lasted about 1/2 an hour.  When we came out, he had fallen asleep on the couch.  When his teacher and I went over to talk with him, he was complaining that his stomach hurt.  I told him we didn't have to go today if he didn't want to.  He was going to make the calls.  But, he wanted to go.  He went in the classroom and was very quiet and stuck next to me like glue.  We sat with his class on the rug and explained some new important rules in regards to Gage and having a suppressed immune system.  His teacher was just awesome, as she could tell he was really nervous.  She let the kids have some free time to "break the ice" a little. Gage started playing with some Legos with his friends, and a short minute later, he ended up throwing up.  He was so embarrassed and mad at himself.  I told him we could leave change clothes and come back, but he didn't want to leave. Luckily a pediatric cardiologist friend was there helping in the classroom, so she stayed with Gage while I ran back to the RMH and got him some clean clothes.  He made it through the whole day of school.  I couldn't believe it. He did lay down during lunch in the classroom, and wanted to take a nap after school (which he didn't), but he really wanted to stay.  He is pretty awesome! He did sleep really well last night.

He is doing great, we just wish his appetite would return.  He eats next to nothing, and when he does eat, his stomach hurts and makes him nauseous.  I guess that is the downside to not being on steroids.  When we force him to eat he throws up.  It just doesn't seem to matter what we offer him, food just makes him nauseous.  The only thing he has going for him now, is his feeding tube that he receives feeds through at night.  It doesn't look like that will be coming out anytime soon.  

A funny story Jason felt I should record, just for our memory.  When they were going to pull Gage's "pigtail" chest tube, he asked if it was going to hurt.  I told him that it would feel like a noodle coming out.  when the doctors pulled the tube, he yelled and said, "that is one stiff noodle, that felt like a metal noodle." So much for trying to down play the pain he was in for.

Presently, Gage is in clinic.  He will have weekly clinic, echo cardiogram (ultrasound of the heart) and biopsies.  Tomorrow is biopsy and he will get his staples out.  He is really excited for that.  So, he is back to school, but will have days where he will miss a lot, and that is fine.  His health is number one priority right now.

He's outa here, Saturday April 22

Pretty awesome report today.  During rounds they made the call. Mr Aurelius can check out!  Still monitoring a few blood levels, but after checking the morning x-ray, he is good to go.   So around 2:10 pm, and after 17 days in the hospital, Gage was out of there!

Best therapy there is for Gage was for him to get out and play with his brother and sister.  They had a good time in the play room as Sierra got dressed up for the PALY Prom.  The prom this year is at the Exploratorium on Pier 15 in Downtown SF.   Should be pretty neat.

We were going to cut hair tonight, but we got (and still are) caught up watching the Trail Blazers against the mighty Golden State Warriors.  It's game 3, Portland is up by 95-94 with 8 minutes left. Hunter and I are looking for a little respect from the California crowd if we can win at least one game.

Anyway,  so nice to have the Gage Aurelius with us tonight.
Till next time

Jason

Love this

  Lindsey helping us with Gage's medicine.  On the right is the pills we are throwing away. The buckets on the left are the new meds. 

Tubeless Again

Gage's chest tube is officially out! It had only drained 30 ml in the last 24 hours and the chest x ray looked good, so they pulled the chest tube.  Now they will watch him for one more day to make sure the fluid doesn't re accumulate.  If his chest x ray looks good tomorrow morning, then we are out of here (the hospital that is)!

Once he is out of the hospital, his schedule is full of doctor appointments, biopsies, lab draws and physical therapy.  Oh yeah, and regular school in there somewhere. We are just excited to get out of the hospital and go back to our "new normal" schedule.  He is ready to be out of here and is excited to go back to Nixon and see his friends.  We've never been in the situation where our kids were established in a public school before transplant.  The transplant team has never had a patient established in a local public school as well.  So, the deal is, he can return to school at Nixon, BUT, he must wear his mask and I will attend with him for the first few weeks to make sure he behaves and is using his sternal precautions.

The long term plan, for now, is as follows.  The kids will finish school out here in California.  Every one's last day is June 1st.  As to the plan after that, TBD.  Gage post transplant stays in the area for 3 months.  At 3 months after transplant, the biopsies are spaced to monthly, from every 2 weeks.  This will put our time ending right after July 4th.  HOWEVER,  IF everything goes well, and Gage continues to get zeros on his biopsies, we may approach the team about going home at the 2 month mark.  Time will tell, for now we are just going to focus on getting him out of the hospital and eating better.

Sierra is excited for prom tomorrow and Megan is working on 'practice make-up" sessions in prep for her prom the following week. Fun times ahead for everyone.

Gage enjoying building the Legos with a little Ativan still on board.

Before and after pulling the chest tube.  Note: He was on a good dose of Ativan.  Although he looks like he is screaming in the second one (which he was), it was very short lived and he has been a happy camper ever since. 

Good news, bad news. Day 15

So do you want the good news or bad news??

Good news first.  He got another big fat ZERO, no rejection!  And the echo showed good / normal heart function.  That again is huge.  They were concerned that the fluid around his lungs / heart was caused by acute heart rejection, but that is NOT the case.  This means they still don't need to go up on the steroids. We will take all that.  Kidneys are doing well, and his other functions are doing good.

Now for the bad news.  He, by far, had the worse night since transplant!  The pigtail chest tube in his side is very painful and makes him nauseous. They have given him 3 doses of morphine, around the clock Tylenol, other pain meds, and 2 hot packs over the chest tube site.  He was up at least 5 times last night howling in pain.  Stacy stayed here and tried to comfort him the best she could. Just a very long miserable night, coupled with the fear of acute heart rejection.

This morning he is doing better.  He is sitting up, eating a little (like 2 bites) and taking his meds. The goals for today are; to get/keep the pain under control (please), get him up and walk, 12 hour IVIG infusion (antibody treatment), an x-ray to check for more fluid, and beat his Dad at Mario Cart Wii.

It goes back to the 'Highs and Lows' we used to talk about.  Don't let the highs get to high and definitely don't let the lows get to low.   Today will be better.  We all know that.  If nothing else but the ZERO, it will still be a good day.   Sure glad I made the decision to get here from Oregon as soon as I did.   I just felt like I needed to get here as soon as tax season was over.  As bad as last night was, it would have been so much worse if Stacy was trying to manage Gage in the hospital and the rest of the kids at the RMH.  Who knows, but I just might have been the right help at the right time.

In other news, they told us he can go back to Nixon Elementary once he is discharged.  This will make him the first transplant kid to go to a 'regular' school right after transplant.  Gage is really exited for that.  All other kids go to the hospital school.  Stacy will still be his nurse, and he will be wearing a mask, but there will be NO backpack.  His teacher, Mrs B, and the rest of his class will be so excited to see him.  Speaking of his class, so far his teacher, and eight of his classmates have come to see him.  He sure has a lot of good friends there.

This was also one of the reasons I haven't cut my hair yet.  I want Gage feeling good and staying good. We will cut it when he and myself are ready.  (The rest of the crew were ready weeks ago).

Here's to a good day, ZERO celebration, low/no pain, much needed rest, an IV treatment, and a few walks.

Till next time,
Jason

Evening prayers, with Megan on speaker phone. 

Hospital school here to play a few games, all good as long as Mom keeps the hot pack in place.

Not out of the woods yet, Day 14

Correct, he is NOT out of the woods yet.....  Biopsy just finished.  It was a much better report than our last biopsy as far as the numbers were concerned.  His pressures last time were 16, this time they were 8.  You want to see them lower than 10, so this is good news.  However, while in the cath lab, they found a pocket of fluid by his left lung so they placed in another chest tube. They drained 380mL off (about the size of a coke can).  Unfortunately, this will be another set back, so we will most likely not be getting discharged on Friday.  We will have to see.  He is in so much pain, just got morphine.

Must admit, I feel like Mother-of-the-Year. The last couple of days, Gage was complaining that it was hard for him to breathe. I kept encouraging him take deep breaths and quit whining. This fluid around his lungs would explain why he was having a tough time breathing. It is hard to breathe when you have something the size of a coke can taking up space in your lung cavity.

He had a much better afternoon yesterday.  He was given a 3-D puzzle from the hospital school.  This was the perfect thing for him.  He instantly started putting the puzzle together, which gave him the stamina to stay awake.  At dinner, we all ate in the Sobrato room; the same room we spent many days in the Lindsey days.  He was laughing and even felt well enough to play Old Maid and take a 4 lap walk.   He went to bed tired, but couldn't sleep when he woke up at midnight.  So, the nurse gave him his melatonin (another med), and he slept well the rest of the night.  This morning he woke up in a better mood and was laughing and happy until it was time to go to school.

Jason flew in this morning.  He could tell I was needing some help with Gage being more needy and the kids still involved in school and activities.  He left at 2:00 am this morning to catch an early flight out of Boise.

Tomorrow we will find out the biopsy results, so stay tune for that.

On a lighter note, Sierra has prom this weekend.  PALY buses the kids to the Exploratorium on Pier 15 in down town San Francisco. She is going with Nori and a couple of guy friends.  She is really excited about that.  Next week Megan has her prom on Oregon.  May not be in SF, but equally as fun. Jason will be home for that one, no doubt about that!  

7:30pm
Just talked to the doctors, they put a rush on the biopsy results.  They are also going to do an ECHO tonight.  They want to make sure the fluid around the lungs is NOT from rejection.  If there is fluid around the heart that could mean acute rejection.  They want to rule the big stuff then focus on the other stuff.  As for Gage, he is in a lot of pain! 2nd dose of morphine is coming!
We will keep you posted.

Yes, that is a new pig tail chest tube to drain the extra fluid.  So far he is up to 450cc. 

 Lots of back pain. Hot pack seems to help.

Earlier, before the biopsy, he was up and having a good time.

Post Transplant Day 13

All is going in the right direction.  The most frustrating thing right now is how tired Gage is all the time.  I keep thinking he will get some good sleep and feel better the next day.  It is really hard to get him to want to go to school, do physical therapy and laps around the floor, when he is so tired. Last night, we tried to give him some Melatonin to see if that would help him sleep better.  The nurse said that he did sleep better last night. He was still sleepy and not wanting to do anything but sleep this morning. The doctors have adjusted the time of his diuretics to see if that would help, but he was still up peeing a lot at night.  They have decreased the amount of feeds he's getting at night, but that didn't help.  Going through his medication list with a pharmacist, we thought maybe the Keppra he is on for his seizures, might be the corporate.  He is on a pretty high dose, so they are going to talk to neurology and attempt to cut the Keppra dose down and see if that helps. I just don't remember the girls being this sleepy this far out from their transplants.  I know Lindsey was up and around playing hide and go seek when she came up to the 3rd floor after her transplant.

If sleepiness is the only complaint, then we are doing great.  His "wound Vac" came off today and everything looks good.  He is now free of all tubes and lines.  His incision is healing nicely and the staples will come out at his 3rd week biopsy, next week.  Tomorrow he has his 2nd biopsy.  Uncertain of what time that will be.  They want to watch him for another day after that, to make sure his fluid balance and blood pressure are where they want them.  IF all looks good, we can be discharged Friday.  I was hoping Thursday, but will take Friday.

The later nights staying at the hospital and being out of a routine are starting to take a toll on the older kids.  We are ready for Gage to be outpatient, but they are happy to be here supporting Gage.  I often wonder how we ever did it with Lindsey, then I remember, there was never less than 2 adults here at all times. We can push through a few more days.

Jason is working like a mad man, and will be glad when the pressure is over today.  To all tax season widows, Congratulations on making through another season!

Post transplant Day 12

Our reports are getting more and more boring these days.  All good things.  His medication levels are right where they want them.  His blood pressures are more and more stable as he is completely off steroids.  He will have biopsy Wednesday. with the 12 hour IVIG infusion to follow.  If all continues to go well, he can be discharged on Thursday to the RMH.  This would be wonderful.  Today he went to the hospital school for the morning and afternoon session.  He wasn't his bright happy self due to being so tired.  Soon.

Our goals in the next few days are: 1. Get the "wound vac" off.  That should come off tomorrow, which will be wonderful as it has made him very itchy.  2. Have a good biopsy on Wednesday.  3. Try to get some more sleep.  With him drinking a lot during the day and keeping his feeds as high as they were before transplant, running at night, he is peeing a lot.  Add diuretics on top of that and the poor boy isn't getting any sleep.  He is just exhausted during the day.  Which makes his excitement for school and therapy minimal. They are actually turning his feeds down a little since he is eating better.  They will wean him off the feeds IF, once he is outpatient his weight continues to go up. So we will not be getting rid of the feeding tube yet, but we are closer.

These are just a few goals, I'm sure there will be more as our time for discharge draws closer.  We really have no complaints and are so grateful for how blessed we are at how well he is doing.

Happy Easter

Rounds are finished.  Gage continues to improve.  As I was suspecting, they are going to keep him in the hospital until after his 2nd biopsy and his first round of IVIG.  The IVIG ( IV immunoglobulin) is a 12 hour infusion that all post transplant patients get.  They give it right after biopsy, at the 2 week mark and at the one month mark, then he will be done with it.  This just helps clear the antibodies that may come with the new heart.  I was hoping Tuesday, but the doctors decided, "let's just keep him in until after biopsy so we can keep an eye on his fluid balance."  So, it looks like discharge won't be until the end of this week.  All things considered, we will take that and just be patient.

Yesterday Gage had a good friend, Yonatan, come and hang out with him for a little while in the afternoon.  We snuck out and was able to attend the funeral of our friends' 2 year old.  It was so devastating and sad, my thoughts continued to be with our donor family.  As friends and community rally around and try to support these families through the grieving process, eventually everyone returns to "life."  But, the emptiness is still felt in their home.

Today as we celebrate Easter and the Resurrection of our Savior, I find some peace and comfort.  Though these children will be missed from this life,  I am so glad that families are forever and we can be with them again.  I am thankful for my Savior and for the example he set and the sacrifice he made.  I am thankful he was resurrected and through him we can start fresh and new. My heart aches for these families, but it is not good-bye forever, but good-bye for now.  I am so grateful for the gift that was given to Gage and the "new" life they have given to him.  We are so blessed and continue to be. Now, to write our letter to the donor family and help them understand our gratitude in words.

Happy Easter!

Our Easter egg hunt this morning.  Good PT for Gage, as he has to bend down to pick up the eggs, reach up and walk. 

Another good friend Rania came by to visit yesterday.