Thursday, February 12, 2015

Feeling blessed...

Yesterday morning Isaiah was awake and able to get the breathing tube removed a few hours later. He was definitely in a lot of pain when he woke up, as we had expected. He is seriously such a trooper though. He did everything that the nurses asked him to do, he even spent some time sitting up in a chair! He spent most of yesterday and today just trying to rest. His body has been through so much these past few weeks (months really) so I was very happy to see him get some sleep that was soooo overdue. 

Today, I brought Audrey in for a few minutes to say "hi". I made sure that she wore her Marshawn Lynch jersey today just for him! Today we even began some of the training on this LVAD that he now has in place. The LVAD is quite the remarkable piece of equipment but I can definitely see why it is not a forever type of solution. He will definitely want a heart transplant as soon as he is eligible to be placed on the list (must wait 3-5 years cancer free). 

Until he received a transplant, he will keep the LVAD pump. This pump means that he has a wire called a "drive line" coming out of his right side. This line connects to a "controller" that is powered by 2 batteries or a 10lb box that plugs into the wall. He has to be connected to one of those two sources of power at ALL times. This means no swimming, no contact sports, and no getting caught in a downpour of rain. In order to shower he will need to place all of the hardware in a shower bag (haven't seen what those look like just yet). The 2 batteries combined last about 14 hours so it's not like he can go days before switching to new batteries or plugging in to the wall for awhile. 

Isaiah is really handling all of this incredibly well. I certainly don't think that I would be handling it nearly as well if it were me in his position. I keep telling him how excited I will be when we can go home and just be boring. Eventually that will happen for us, and until then we have an incredible support system to help see us through. 

A few people in our wonderful support system have organized a fundraiser for us this weekend. They've been able to get some pretty cool stuff to auction off! 

Since we left in such a hurry, there are a few things that I really have to go home to take care of since we will need to be in Seattle so long. So while Isaiah is still in the hospital, I will be flying home Sunday morning, attending the fundraiser, spend a few days taking care of a few things, and then back to Seattle on Wednesday.  This will also give me the opportunity to get more clothes for Audrey, Isaiah, and myself. Apparently in my rush to get to Seattle, I decided that all that I needed for myself was 2 pairs of pants, 1 shirt that fits, 5 shirts that don't (yay pre-pregnancy clothes), a pair of sandals (for February haha), and a pair of slippers. Oops!

It is still just so amazing to sit and talk to Isaiah and watch him with Audrey... those are things that at many points recently, I thought might never happen again. He is such a strong man. Audrey and I are so lucky to have him in our lives. :)









Updates on Isaiah

Here are the most recent updates on Isaiah. I know, bad blogger not posting actual posts, but between Audrey and Isaiah and being discombobulated in general... I haven't been able to write up any actual posts. Most recent updates at the top. :)



2/10/15 Updates
Isaiah is safely back in the ICU. The doctor said he did well and the pump is in. Tonight he will rest and we will get to see him awake tomorrow! :) Thank you all for your continued love, support, and prayers.----------------------------Isaiah is officially in the OR now. Should be about 4-6 hours of surgery. Please keep him in your prayers as he takes this huge step toward being healthy and home. It's the beginning of a long road of healing. 
Keep all of us in your prayers too as we wait impatiently.-----------------------------Today is surgery day. Please keep Isaiah and the medical team in your prayers! I will keep everyone updated with how surgery has gone once Isaiah is settled back into his room. Surgery will be this morning... Starting in just a few hours.


2/9/15 Update


Monday didn't quite bring the answers that we'd hoped for... Tomorrow Isaiah will have open heart surgery to receive the LVAD. While we were all very much hoping that his heart had healed enough to simply control everything with medications and not need the pump, we know that Isaiah is getting the care that he needs and this is what has to happen in order to get him healthy and home. 


Please keep Isaiah and the medical team here at UWMC in your prayers tomorrow as it will be such a big day.


2/8/15 Update

Thank you so much for your donation. This will truly be so helpful to us during this crazy and scary time. Also, thank you for your prayers... they are SO powerful. 


2/6/15 Update

Yesterday, Isaiah was able to get out of his room and hold Audrey for a little while. He is in really good spirits, especially considering all of the information that he has had to take in in just a few days. 


I never could have imagined how amazing it would be to see Isaiah open his eyes and look at me again. I am so glad that he is now awake and can participate in the discussions and decisions for his future. 


As of right now, the left side of Isaiah's heart is not continuing to heal at the rate that it was. Because of this, they are going to give him a few more days of healing before they do another scan of his heart. If by Monday, his heart can handle being without the pump that he is currently on, he will be weaned off of the pump and will manage everything with medications. However, if his heart is not healed up enough, he will go into surgery on Tuesday to receive the LVAD pump. The LVAD will require open heart surgery and will be a big change for him. 


After receiving the LVAD, Isaiah will remain in the hospital for somewhere between 2 and 4 weeks and then will need to live locally in Seattle for up to 3 more months. 


While the doctors seem to think that he will definitely need the pump, they were also certain that his heart wouldn't heal at all and that he wouldn't wake up before this last Tuesday (even though he woke up Sunday). So right now we really need to pray that the left side of his heart continues to heal. If it somehow heals enough before Tuesday, he may be able to get the temporary pump removed and not need another pump put in its place. 


Please keep Isaiah in your prayers while he attempts to rest and heal. He still has a lot of healing to do before we can get him safely home. 


2/3/15 Update

Isaiah is back in his room in the ICU. He is doing well. They did end up placing the temporary pump since his blood pressure was too low for comfort after removing the tandem heart pump. We are hoping that Isaiah will be able to wake up and have the breathing tube removed tomorrow. 


The doctor said that Isaiah did great. At this point we pray that Isaiah's heart continues to heal. In the next week or two we will find out if his heart has healed enough to be removed from all pumps or if he needs to have the long term pump put in. At least Isaiah will be able to be awake, see Audrey, and be apart of the discussion about what will happen next. 
Thank you all for your continued prayers. The rest of Isaiah's organs are all doing very well, we just need the left side of his heart to join the party. 


2/2/15 Update


Today was a good day... first thing this morning, I was told that not only are Isaiah's liver, lungs, and kidneys looking MUCH better, but his heart is continuing to heal. (His liver numbers were in the 5,000 range less than a week ago and are now in the 80s... they should be around 50) 


The doctors had flat out told us that his heart would never heal. They told us that his heart function was as good as it was ever going to get (at less than 10%). Yet it is healing! Power of prayer right there. 


Anyway, since his heart is doing well, they have been weaning him off of the current temporary pump and he is tolerating it. They've also reduced his heart medications and his numbers didn't change a bit. 


Tomorrow afternoon the doctors will take Isaiah off of the temporary pump and see how he does. This is something that was 100% off of the table only 48 hours ago. Isaiah is continuing to prove the doctors wrong and they are shocked. 


If his heart tolerates it, he will be treated with medications and closely watched to make sure his heart continues to heal and function properly. If there is even the slightest hiccup during or after the removal of the pump, they will put in the temporary pump. That will allow his heart another week or 2 to heal and then be removed. 


Absolute worst case scenario is now the long term pump. Last we had talked to the doctors, this was Isaiah's only option... and now it's the last option. We are amazed.


We still need some serious prayers for Isaiah, especially tomorrow as it will be a VERY big day, but the prayers thus far have proven to be healing. We were in total shock today when we found out all of this amazing news. We've all seen what God can do but we were just hopeful that the surgery for the long term pump would go well. We never imagined such incredible news would be given to us today. 


Isaiah is such an incredible guy and he is one heck of a fighter. I am still in awe of all of the people who have reached out, said a prayer, made a donation, etc. He is clearly a VERY well loved man. We all sure love him but it is wonderful to see so many people rallying around him. 


God is doing amazing things in Isaiah's life right now... Please continue to pray. Thank you all so much!


2/1/15 Update

We just received news that Isaiah is showing improvement... Even his heart! Which we never expected. 

They finally said that he gave the responses that they were looking for. Good job proving some of those docs wrong, Isaiah! 

And thank you for all of the prayers that made this possible. He is still definitely critical and this will continue to be a long journey so please don't stop the prayers. 

We are just so thrilled to have some sort of good news! On Super Bowl Sunday of all days.