Saturday, March 19, 2016

Part 3

Wow... I've been a BAD blogger :/ I have been so caught up with everything that I just haven't had a chance to sit down and write things out. I think part of it has been due to being busy and the other part is that I have SO much I want to say and it is overwhelming. If I started typing now, I think I'd have to be on my computer for a good week straight to get it all written down... probably even longer.  Then you add in the emotions that come back whenever I start reliving it... ya, it's a lot.

Anyway, where did I leave off after the last update? I believe with Isaiah waking up at the beginning of February and finding out what all he had been through over the previous week. I ended my last update replaying how he had finally been able to hold Audrey after waking up. Before Audrey was even born, we knew that he was sick. We had been told pneumonia but after she was born, the docs were so unsure of what was going on with him that Isaiah was worried he was contagious so he really only held her a few times before everything happened. Watching him hold her and in spite of everything that his body had gone through and was still going through, he looked so much better. So much healthier. He looked so happy. Heck, just thinking about it gets me all teary eyed.

After a few days with the second temporary heart pump, the doctors informed us that unfortunately his heart had not continued to heal as they had hoped. They believed that an LVAD would be the likely next step. Just to double check, they gave him a few extra days to heal and then ran some tests. While closely monitoring all of his vitals and his heart, they turned down the temporary heart pump to see if his heart continued to function properly or if it was clear that he still needed that support. It was pretty clear to them that he still needed the help. His next heart surgery was scheduled. He would be getting the LVAD.

I can't remember if I've explained what that really is and if so to what extent I explained it so here is a brief rundown. You can always google it too. It's pretty incredible. A LVAD is a Left Ventricular Assisted Device. Essentially this pump sits underneath his heart to do the work of the left side of his heart. He has no pulse. Isn't that bizarre?! I believe I've read that the newer versions have a simulated pulse of sorts but the version that he has is just a continuous flow... so no heartbeat. Although, we've discovered in recent months that if his blood pressure is higher than it should be, his heartbeat is definitely identifiable. The pump that sits under his heart is attached to a long cable that comes out around the right side of his belly. The cord is called a driveline. The driveline site is constantly covered by a see-through bandage that we change weekly and use to watch for any sort of infection or blood. (LVAD means he is also on A LOT of blood thinners so he bleeds super easily.) The driveline connects to his "controller". Yep, controller. Sounds like parts of a video game system to me. The controller is the brains of the operation. It displays various numbers regarding the pump and is also what will alarm if the pump is having issues. The controller is then connected by two cords to either batteries or his power module (plugs into the wall). He has to be connected to either the batteries (2 of them) or the power module at ALL times. It is was keeps the pump, and inevitably his heart, functioning.

There are A LOT of things that go along with a LVAD. He can't be submerged in water, he has quite a few steps that he has to do in order to take a shower. He has to be on a lot of blood thinners. He takes a lot of medication. He can't have CPR. He has to be very careful about infections. He has to make sure he drinks enough water, eats regularly (and hopefully healthy). He has a TON of equipment that he actually has to have with him at all times. He has to have a back up controller and back up batteries with him always. You just never know. I also bought him a raincoat to keep with his backup equipment since a heavy downpour could end up being fatal for him. How crazy is that?!

The LVAD has changed our lives in many ways and sometimes I can tell that it really gets to Isaiah. But what I try to always remind him of is that the LVAD is the whole reason that he is alive today. He has been able to watch our daughter grow over the last year. He wouldn't have had that otherwise. He would have only had a little over a week with her. During which time he was soo sick. I would have been a 24 year old widow. That's terrifying. He has been through SO much in the last few years and I just couldn't stand thinking that that could possibly be the end for him. It didn't make sense to me. I didn't want it to make sense either.

Isaiah underwent open heart surgery about a week after he woke up from sedation after his 2nd heart surgery. By this point, I believe this was the 7th time that I'd sat in a waiting room while he went into an OR. 4 with his cancer stuff and then this was the 3rd heart surgery. 7! In under a year. He did well, and was back in the Cardiac ICU in a matter of hours and was awake with the breathing tube out the following morning.

Because it was open heart surgery and his chest had to be cracked open, he was put on a weight restriction. For the next 6 weeks, he was not allowed to lift, carry, push, pull anything 10lbs or more. By this time, Audrey was JUST on the edge of being too heavy so I would just get him all set up with pillows and place her in his arms so that he could still hold her. He was also not allowed to reach his arms up over his head or too far behind himself. This was especially difficult since he had only been able to move around at all by using his arms since he was still unable to use his right leg. Then you add in the fact that he'd been in a hospital bed for a couple of weeks and muscles were weakening like crazy. We knew it was going to be a tough 6 weeks until those restrictions were lifted but Isaiah was determined to get as strong as he could, as soon as he could.

A few days after surgery while Isaiah was still in the ICU, my mom, Audrey, and I flew back to Alaska, leaving Isaiah in Seattle. Thankfully some of his family flew back to Seattle to be with him while I was gone. Obviously he was being very well cared for at UWMC but it just felt wrong to leave him there without friends or family to help the time go by.

Since we had left in such a rush, I'd left the house in total destruction but when I came home, my amazing sister-in-law had been at my house and cleaned up A LOT. She also left some sweet little gifts for Audrey and I. We seriously lucked out with amazing friends and family, didn't we?! :) I flew home Sunday morning, got some stuff done around the house, and then Audrey and I were off to a fundraiser. Did I mention how incredible our friends and family are?

With the help of family, friends, acquaintances and many total strangers, some friends and family put together a fundraiser for our family. It was... incredible. I seriously don't even know how to describe it. I was running on a few hours of sleep and was already incredibly emotional thanks to all that had happened and the incredible postpartum hormone craziness (Audrey wasn't even 2 weeks old yet). We even made our local paper (article here). There were SO many people at our fundraiser. I cried. A lot. There were hundreds of people. Some were friends or family of my family or Isaiah's. Others were co-workers (past and present) of myself, Isaiah, or of someone in our family. Some were total strangers. There was a dessert auction, a silent auction, a live auction, a raffle (or maybe more than one), etc. People were so loving and giving. It was such a humbling night.

Our community just came around us to support us during such a difficult time in our lives. It was such a surreal experience to see all of these people there for us to offer their love, kind words, prayers, hugs, and financial support. We couldn't have made it financially without that fundraiser. Without a doubt. I was in total awe the entire night. A support system like that is so much better than anything I could've imagined or hoped for. We are truly blessed and we do not take that for granted.

After the fundraiser Sunday night, I had 2 more days to get some stuff in order before I flew back to Seattle with Audrey. I collected all of our mail (BILLS... lots and lots of bills), met with my boss to discuss a plan, re-packed for the 3 of us for a few months. It was a lot to do in a short amount of time but I did not want to be away from Isaiah for very long. I wanted to get back as soon as possible.

While I was gone, Isaiah's orthopedic surgeon who did the cancer removal surgery, gave him clearance to put as much weight on his right leg as he could tolerate. This was incredible news as he hadn't done that since the beginning of September. The next few weeks were rough.

I know that Isaiah felt bad that Audrey and I spent all day with him in the hospital, but I wouldn't have had it any other way. It wasn't hard for us. We stayed in an apartment very close to the hospital. We'd get up in the morning, get ready, and head over to the hospital where we usually spent the whole day. As it got closer to bed time, I'd pack Audrey up and head back to the apartment so that I could get her to bed at a decent time.

Those weeks were very tough on Isaiah though. Not only was he in the hospital (one of his most hated places) but he was in a lot of pain and working VERY hard to re-gain his strength. He had to learn how to stand again. It took a long time. He was basically starting from scratch and for a 6'5" guy, that is NOT an easy task. Especially because he couldn't use his arms at all. So not only was he weak from everything he'd been through, but he was only able to use his legs which at this point, were the weakest muscles in his body.

The staff at UWMC is absolutely incredible. They fought the insurance company for us to get him into the inpatient rehab unit (so he could avoid going to a nursing home until the 6 weeks were up). In the rehab unit he learned how to stand again. How to walk again. It wasn't fast and it wasn't easy but he made huge improvements every single day. He was determined.

Some of his amazing college friends actually came to visit while we were there. They actually flew to Seattle for the weekend to come see him. It was awesome. It really lifted his spirits. While he was in the hospital we had family and friends periodically coming to town.

Finally the day had come, he was being discharged from the hospital. After his cancer removal surgery, he spent exactly 4 weeks in the hospital. This time, he spent almost 8 weeks in the hospital. He was SOOOO excited to leave. We were required to stay in Seattle (a few minutes from UWMC) for almost 8 more weeks.

While stay in Seattle we did get to spend a lot of time together, the 3 of us. That is time that we wouldn't have had together if we'd been at home. I know that Isaiah would have been working. It was so nice to get that time together. We did go to the hospital most days for blood work and various appointments but we were able to feel a lot more normal. We went to the grocery store, went to lunch, spent time with family as they'd fly in to visit for a few days here and there.

It was hard to be away from home for so long but there were some really good parts and overall, the fact that Isaiah was alive and healing... it was more than worth it. Once Isaiah has been cancer free for a few more years, we hope that we will be able to get him listed for a heart transplant. More than likely, we will end up back in Seattle for a few months if he is to get a heart transplant in the future. For now though, we want to be boring. We want uneventful, boring lives. We want to be home, see our friends and family, spend time together as a family, go to work, and avoid any more hospital stays. Isaiah has had to go back to Seattle a few more times since we got home in mid May 2015 but for much shorter periods of time and ironically none of them had to do with his heart or his LVAD. They were actually due to an infection that developed in the incision from his cancer removal and then to go back again for scans and follow up with his oncology team at Seattle Cancer Care Alliance.

I seriously can't even describe how thankful we are for the incredible people who have been placed in our lives over the last few years. The teams at Seattle Cancer Care Alliance and University of Washington Medical Center are absolutely incredible. We actually wanted to bring a few of them back to Alaska with us. They are skilled, knowledgeable, and caring. As they did rounds, they'd stop and talk to me and Audrey. They saved Isaiah's life. They became invested in us. They care about us.

The last few years have been so up and down. We have experienced some of the scariest, most awful days of our lives, and some of the happiest days of our lives. It has been a whirlwind. I am so so grateful for everyone who has prayed for us, offered kind words or words of encouragement, offered financial support, a hug... everything. We could not be where we are today without each and every one of you. Thank you so much. You have changed our lives.

This is by no means the end of our craziness, I'm sure. But for now, we get to be normal... well our version of it anyway.

I'm sure that there will be random follow ups in the future or moments of rehashing something else that I didn't recap. Obviously, there has been a lot happening! :)

Daddy-Daughter time watching March Madness 2015

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