Monday Morning, Time for a Routine

It is Monday and the holidays are over.
Time to get Gage into a routine and doing more than sitting in his room.  Yesterday was a difficult day, everybody headed back home.  It seems like we just get used to being together and it is time for them to leave.  The nurses were really busy and didn't have the time to take Gage to the playroom.  He has to have a nurse with him everywhere he goes, until I get passed off to be able to take him on my own.  He did go on 2 walks around the 3rd floor, but that was it.  Today my goal is to find out what it takes to get certified so we can take him to the playroom.  However, it is not a really quick process and the person that checks us off isn't here until tomorrow.  Gage had too much fluid on him yesterday and his chest tube put out almost 100 more mL than the day before (FRUSTRATING).  So, they restricted him of drinking any water or juice.  The only thing he can drink is milk and he can have 1000 mL in a 24 hour period.  It's a good thing he is a milk drinker.  It was all good and well until he got to the end of the day and had 1/2 a carton of milk to take all of his evening meds.  Today, we will try and space it out a little better.  It did work in bringing down his chest tube drainage.  It ended up only putting out 120, still to much to take out but a lot less than the day before.  Today they will start him on coumadin and aspirin and turn off his milranone.  All steps to get him out patient.  When he isn't having any pain, he acts like himself, where he will giggle at movies and talk your ear off.  It is good to see him feeling a little bit better every day.

On Saturday, our dear friend Michelle Hansen came and sat with the kids at the hospital.  This was so very nice of her.  It allowed Jason and I some time to just talk.  We always have kids around us, which is great, but sometimes we just need to talk without being in a corn field (with lots of ears).  It was very therapeutic for both of us.   The kids are getting a little bit more excited with the thought of coming back here.   Today, I will take in their papers to get them registered to start school here in January.  Gage is still at a status 7, which means he is accruing time but would not accept an offer if one came.  We are good with this.  I just can't imagine him going through a major surgery this soon.  That would be horrible.  I also need to get our list together to start our advent calendar tomorrow.  Something the kids look forward to no matter what age. They will draw it at home and then Gage and I will do our best to carry it out here as they do at home.

Gage playing stomp rocket for therapy this morning. I was his target.

 Some good bye pictures

 Off to school with Blackwood and the chest tube on the side

Saturday evening

Gage Aurelius, the Man of Steel, is hanging in there.  Right now he is on 2 IV's, milrinone to help support the right side of his heart and heparin to protect against blood clots.  His blood pressure has been trending up over the last few days so they are watching him close for additional brain bleeds, and aggressively treating the blood pressure.  All very serious issues.  He is also low on sodium, so (believe it or not) they are giving him sodium tablets and giving him full access to all the salty food he wants ie pickles and bacon and chips.  So, at his request, I walked to the Stanford cafeteria and bought a whole dill pickle and gave it to him.  He thought he was really getting away with one.  But for today, or until his sodium is up, he can have full access to all the pickles he wants!!  

Pain management for this little guy has a been a bit tricky.  Last night he was howling in pain from the chest tube site, and there didn't seem to be anything that helps it.  I rubbed his back for about 30 minutes which seemed to help.  He was up every 2 hours with discomfort and pain.   Then he will go most of the day feeling fine, so who knows.  The big mystery is that dang chest tube. It will be 2 weeks on Monday since his surgery.  By now the chest tubes should be done draining, but not on the Man of Steel.  Who knows how long it will take.  We all agree, he will feel a lot better when that tube comes out.

Right now there are 5 kids on 3 West who have the HeartWare devise.  Gage is taking longer than others to recover and drop these IV's and drain tubes.  He should be fine, and should be discharged from the hospital, but is definitely going at his own pace.  He is walking about 2 laps around 3 West twice a day.  That is very good, but is expected to get much stronger.  He is also on the feeding tube every night for 12 hours at 60ml /hour.  Stacy is doing a calarie count to see if they can drop the tube.  
Gage has named his 12 day old buddy; the HeartWare that hangs around his neck and sits next to his body is now called Blackwood.  Not sure where he got that name from, maybe the first Sherlock Holmes movie, but doubt it. Nevertheless, Blackwood is the name of his HeartWare.

Tonight Stacy is stay with Mr. Aurelius on 3 West, he was pretty sad and wanted his mommy. The kids figured out that I will be going home with them, and that Sierra is NOT driving home alone.  We got a lot of mileage out of the joke, until they figured it out.  Some the doctors and nurses were a bit concerned that we would let Sierra drive that far solo this all the kids.  It took them a while to figure out what the 'wink' meant.  

We are leaving in the morning and don't plan on coming back until Dec 17, which will be Sierra's next biopsy. In my book, that is a long time for our family to be apart.  I know other families can do the long distance thing, so I guess we can too.  Seems like we have done a lot of that this year.  One thing is for sure, I will miss by wife and little boy.  Next time I see him, I hope it is here at the RMH!!!

 A nice big dill pickle all to himself.

 Megan saying good bye to her little brother.

Aurelius' first massage from a professional!!

Yes, quality sibling time around the wii in the play room. 

First time to the play room since pre-surgery.

 Alright, Hunter and Lindsey were driving us nuts, so I took them on a run/bike ride around Stanford campus.  

Thanksgiving day.

Well here we are. Gage has been moved to 3 West and enjoying the freedom.  He was welcomed by 3 of this favorite nurses, Denise, Nicole, and Suzanne, all nurses from the good ole' Lindsey days.
Once he has his pain meds on board, he feels good and interacts well, laughing, joking and eating. But if his pain is not under control, it gets really sad and miserable around here.

He was transferred up here a little after 1:00. After 13 days in the CVICU, we were all happy to see him good enough to be moved up.  About an hour later, Stacy and the kids went to some friends here in Palo Alto for Thanksgiving dinner.  They had a great meal and enjoyed the activities.  Gage and I stayed here, played a game, went for a walk around the 3rd floor, and I took a nice nap while he played pacman with Denise at the nurses desk. Very nice of them to let me sleep.

This evening was a bit rough.  He gagged on his meds and eventually threw up his feeding tube. This was traumatic on him knowing it had to go back in.  After another walk, pain meds, a patient mother calming him down, and a stiff drink of water, two good nurses (one of which was Riza from the Lindsey days) were able to replace the feeding tube.  Now we have all 5 kids here and enjoying time together. Sierra being the big sister, Megan doing her thing, Hunter and Lindsey's abiding love for each other, and Gage loving the attention.

When we left Oregon Wednesday morning there were a few tears shed in the big red suburban.  The kids wanted to see their mom and little brother, but it was Thanksgiving! ALL there cousins were going to be here, with plenty of food, games, and fun to go around.  But there is a little boy here on 3 West who needs his big sisters and brother. I told them as we made a right hand turn from Talley Dobbins onto the Anthony Lakes Highway, 'when we do things we need to do rather than what we want to do, and do it with a good attitude, we will be a better people, and able to deal with life's challenges'.  Not that they didn't want to see their mom and brother, it just would have been really fun to see and play with all the cousins.

That's it for now. Lindsey and Hunter both LOVE playing YMCA volleyball. Megan is really into basketball, and Sierra is dancing away on the dance team. Kids will be heading home Sunday.  Right now they think Sierra is driving Big Red alone while Stacy and I stay here with Gage.  Cruel but fun to watch them worry about Sierra driving that far, 780 miles, on 8 different freeways/highways, and over 2 mountain passes. We have a few days to tell them the truth, but for now we can have fun with it.

Last night I stayed here with Gage. He slept good, I think. I had ear plugs in. I learned my lesson from the Berlin days.  He was up 3 times to go potty but that was it.  Today we are looking at a fun filled day of walks, board games, reading books, watching cartoons, and fixing a flat tire on big red, and keeping Lindsey and Hunter at bay.

It has been a one of a kind Thanksgiving. Grateful that Gage is in such good hands, is doing well and that we are all together. Grateful for the love and support from so many at home in Oregon, and family and friends in Idaho, Utah, California and beyond.

 

Happy Thanksgiving

We had a busy day yesterday, so I apologize for not updating.  Gage was really close to going upstairs, but they decided to take somebody else instead, which was a bummer.  He is first on the list to go up today, hoping to head up there around 11.  His !@#$ chest tubes keep draining way to much to be taken out.  Yesterday they drained even more than the day before.  VERY FRUSTRATING! His chest tube from his heart surgery in August seemed to do the same thing, drained a lot longer than normal.  It was the only thing that kept us from leaving the hospital.  They dried him out and it finally stopped so he could get it taken out.  This time, they tried to dry him out, but his LVAD didn't respond well and they had to give him extra fluid.  Yesterday, they did ultrasounds of all his major vessels around his body to see if there was possibly a clot somewhere that was causing the tubes to drain more.  They didn't show anything, though I was impressed that they were trying to find causes as well. The conclusion this morning is he just needs more time to heal.  Everything else about him is more and more stable.  He only needs pain medicine for his chest tubes.  He has a stage 2 pressure sore on his bottom that hurts when he sits for too long.  The problem with having no flesh and a very bony bottom.

Jason and the kids made it here last night.  Through a snow storm and flat tire they forged their way here.  I am so glad! It is so nice to all be back together and "complete." My heart is so full of gratitude today.  I am grateful for (just to name a few):

• Gage is able to be on the HeartWare and will be out of the hospital. Rather than the Berlin.
• For the caring doctors and nurses that do so much to brighten Gage's day and take such good care of him.
• The RMH that even though it is tight quarters, provides us with a place to be all together and wonderful meals.  There is no way we could afford a place to live here.  I don't know what we would do without this place.
• The fact that we can all be together.  Our biggest priority is being together as a family.  That is what helps us the most, so we can support each other and lift each other up.
• Modern medicine that continues to awe me and blesses us with the privilege to still raise 5 kids.
• Lastly and probably most important, a spouse and best friend who I couldn't make it through without.

Happy Thanksgiving everyone!!

3 west bound

Gage had a great day yesterday. He made his 3 walks and was definitely exhausted when he went to bed. He was asleep in less than 3 minutes, once he was in bed. He slept well during the night as well. This morning he was a little ornery, crying and in pain. After breakfast, rounds with the doctors and a good walk with physical therapy, he returned to bed. Once he took a good nap, he woke up much happier and even walked again. This time the BIG loop around the 2nd floor. I told him we needed another "him" to run ahead and hide like he did for Lindsey. So, instead I tried to guess the places he would have hidden. He got mad at me and told me he wasn't going to tell me or they won't be hiding places. I'll take that.

His CT scan was repeated last night. They decided it was unchanged. Neurology would like to keep him on the heparin for 3 weeks because, if he starts bleeding, you can shut it off and it leaves his system very quickly. Where if he were on Coumadin and starts bleeding you can't stop it as quickly. Cardiology and transplant teams would like to start the Coumadin now and get him weaned off the heparin. They feel his bleed has been stable on the heparin and it is time to transition. All teams compromised and agreed to 2 weeks on heparin, then start Coumadin. Gage is more and more stable. His blood pressures are under control and his blood thinning levels are where they want them. He had clearance to go to 3 west but there are no beds available today. Maybe tomorrow. I think I should inform everyone that Gage has named his heartware "Blackwood." I guessed at the spelling, but he and Blackwood will be together and inseparable for awhile.

This is his new friend "Snort" whose favorite basketball team is the Chicago Bulls. It is a bull not a pig.

Finally a real walk

I apologize for not updating yesterday. There really wasn't a lot of changes or much to update. After getting the 3rd degree from Jason, I decided to update after rounds today. Gage had a rougher night the night before. They had tried a new pain medicine that made him really itchy. They gave him benadryl to help the itching, but I made them hold it off until bedtime. Unfortunately, it made him really wound up and grumpy instead of sleepy. He was up most of the night and finally at 3 A.M. refused to go back to sleep. He was quite tired yesterday and couldn't figure out why his eyes were sore and kept watering. I did allow him 2 naps, but still tried to keep him up as much as possible during the day. It seemed to work, he slept much better last night. He woke up when he was in pain or needed to pee, but would go right back to sleep.

So here is where he's at now, they have weaned him off his nitrous. This was given through his nose in a high flow nasal cannula and was used to support his right heart. They will watch him very close to make sure his right heart pressures don't increase off of the nitrous. They have his blood thinned to where they want it and will start him on oral Coumadin today. His 2 remaining chest tubes (the cause of all his pain )are still draining too much to be taken out. He will be a new man when those can finally come out. He is eating great and tolerating his feeds well. Yesterday he ate 1/2 of a personal pan pizza. That is more than he ate in 3 days before this device. He really is in a stable place and progressing well. PT came in this morning and walked him down the hall to the CVICU doors and back. That is a really good first walk for him. We will do a couple more before the day is over.

Jason and all the kids will come back Wednesday for Thanksgiving so we can all be together.

 My attempt at a selfie while we were walking. He gets to walk with Sandra who was one of Lindsey's favorite.

Smiling without his high flow nasal cannula.

An Even Better Day

The night I was waiting for, officially happened last night.  Jason left yesterday and returned to eastern Oregon.  We usually stay at the hospital until he goes to sleep and then head back to the RMH to get some rest ourselves.  Last night was no exception, and at 12:22 AM, I received a call from Gage.  He said he wanted me there NOW and he couldn't sleep.  Let's just say the tone he was using was not the kindest or most polite.  I explained that it was the middle of the night and we both needed our rest.  He argued a bit longer with me and the nurse kindly took the phone from him.  The nurse said, there was no need to come and he was just fine.  This was a great call, because it means Gage is FINALLY waking up.  We received these calls frequently from Lindsey, we knew they were coming.

This morning I got over to the hospital as quickly as I could.  I woke Gage up and explained to him that I wore my walking shoes today and we were going to use them.  I also explained, if he has energy to be up in the middle of the night, then he has energy to be up in the chair a lot more than yesterday.  He didn't take this news with the great excitement I was delivering it with (not sure why, perhaps because he didn't go to sleep until 3 AM).  So, today he has been up and down in the chair, almost nonstop.  Even he asked to get out of his bed and into his chair by this afternoon. He took a short walk around his bed 2 times.  He could have gone further, but until more stuff comes off of him, we have a short leash. The doctors pulled one of his 3 chest tubes and the big IV in his neck.  That is huge strides forward.  He is eating and has a little bit of an appetite.  The only struggle is, when he eats he can feel his food getting stuck on his chest tube and it is very uncomfortable for him.  However, the fact that he wants to eat and drink and is not vomiting is great! Gage took one small nap today, so he should sleep well tonight.  He is getting stronger. I even got a smile out of him when I showed him a video his class made for him.

Jason made it home to Oregon with a tropical -2 degrees awaiting him (sometimes it's not so bad being in California).  Today he spent the day running around to Lindsey and Hunters volleyball games and activities.  It is great for him to be there and the kids were really happy he came home.  He will return next week for Thanksgiving.  Depending on how Gage is feeling will tell him how many kids he brings with him.  If Gage keeps improving this much, I could see them all coming.  That would be wonderful, as I miss them very much.

Gages attempt at a smile while eating his dinner.

A hat given to Gage from Taylor who started camp Taylor. A camp for heart kids and their families. He is very nice.

Nov 20, Friday morning.

Gage Aurelious, the 'Man of Steel' is having a good morning so far. A bit more awake and actually responding to people.  Physical therapy came by and played a couple games with him.  He stood for a couple of minutes, but mostly sat on his mom's lap.   No smiles yet, but getting closer?  Starting to get an appetite, not saying he is eating anything, but he is at least asking about it.  Right now he wants a taco from Taco Time (there is no Taco Time in Calif, he may have to settle for Taco Bell).  Anyway, it would be great if we could start eating.  He will get there, we are all confident of that.

Still dealing with a host of issues which are all slowly improving including blood pressure, right ventricle function, central venous pressure (CVP), cardiac output, kidney function, bed sores, fluid retention, IV functions, lung function, and other stuff I don't understand.  3 West is still a long ways away.

Noon.  In his loving 'hospital' voice Gage announced he wanted some tater-tots. So, being the obedient servant I am, I went and found some tater-tots. He ate one tot and decided he was done.  Hey, we are good with that, it was the first food he has had for a week.  Hopefully he won't vomit.

Flying home in this evening, excited to see the kids and snow.

Nov 19, Thursday evening

This kid is driving me nuts. He has slept darn near ALL DAY long!  We got him up long enough to sit on Stacy's lap for 1/2 hour, but other than that he has been sleeping.

Here are some of the issues he/they are dealing with. His arterial line (IV in his hand which measures blood pressure) stopped working, so to replace it they had to give him some medicine to 'relax'.  His blood pressure has been up a bit, so they watching / treating it closely.  They have been able to get some the fluid off, that is good.  He is negative on the fluid balance, so much of the puffiness is gone. The right ventrical is still pretty weak.  They still believe it will recover enough to not need support.  His kidney's are doing better.  Still really flush or red in the face.  They think it is a reaction to one of the numerous meds he is on.  Which they are giving him benadryl for making him more sleepy. Had a CAT scan earlier to check on the brain bleed.  The scan showed no additional bleeding and even a small decrease in the blood accumulation. That is great!

Other than that, I refer back to my earlier comment.  I would love to wake him up and play a game of Sorry, or go for a small walk, or maybe just stand up.  I know,..... we need to be patient, I get it.  He is responding better to commands, but does struggle with breathing.  He just keeps sleeping.

Really missing our kids back home.  I guess Hunter got his overhand serves over the net in YMCA volleyball. That is really going to bug Lindsey.  My parents and all of Eastern Oregon are doing a great job raising our kids.  I guess Sierra has assumed the prestigious self-appointed role as 'mother' over her siblings.  Not sure how that is being received by our 14 year old Megan, Lindsey Lou, and Hunter.

I'm flying home tomorrow afternoon to get some work done and assume my role as father over our other kids.  I will be coming back next Wednesday to spend Thanksgiving here.  Depending on how Gage does over the next 6 days will determine if I bring any of his siblings here for the holiday.  If he is still in the CVICU, it would be very un-fun for the kids to be here.  If he has miraculous improvements and moved to 3 West, then we would bring most, if not all the kids with us.  He has a LOT of improving to do to get him out of the CVICU.  There are a LOT of IV's, 3 chest tubes, and heart meds that have to come off, and he has got to start moving.  He will get there, just not sure when.

As I have been typing, Stacy and the nurse have given him a wash cloth bath. They started washing him with his eyes still closed. He woke up enough to tell them how they were doing and now his eyes are closed again.
Thanks again for the comments we read each one,
Good night my son.

 CAT scan to check on the brain bleed.

 Stacy calming him down and keeping him still

 

Wednesday evening.

This is one of those posts that even though there is nothing to report, ya need to know that 'there is nothing to report.'  So....

It has a been a good day, not a great day, but a good day. He has been up and standing briefly,  but no walks.  He is still sleeping most of the time and very weak. This is the same thing Lindsey did, it takes a long time to come off the sleepy meds. He is still pretty puffy, and needs to keep peeing.  He has pee'd off about 460 ml for the day and still has at least a 1,000 ml to go. They seem to have his blood pressure under control. He did vomit earlier, they think that is related to the pain meds.  Basically he is on a ton of meds and they are watching / monitoring close.  The 3 chest tubes (yes three) are still draining but starting to slow down.  No signs of additional bleeding or seizures so that is great!

With that pump in his chest, it is crazy how much his left ribs push out more than the right.

Stacy and I had our first training on how to work the HeartWare controller and battery pack.  They are planning on Gage getting out of the hospital and waiting for a transplant with the HeartWare devise.

The days are starting to blend together, and the time warp has begun.  Feels like we have been here a LOT longer than 1 week!!

Again, thank you for the thoughtful heart felt comments from all over the country.

Planning on a good night and getting him up in the morning.

 Standing on the scales tonight.

Well done Kevin and Chris!! When Gage feels better, he will love this.

He is Gage Aurelius