Sponge Bob

Logan and I had to make a decision yesterday that I wouldn't wish on my worst enemy.  A few days ago we spoke with a renal specialist about Eli's situation and the options available to us.  The main concern was the amount of nitrogen in his blood.  A healthy level the doctors would like to see is 9 and Eli's was 150 and climbing rapidly every day.  Too much nitrogen can cause damage to the brain.  Fluid retention also continues to be a concern because at this point he honestly looks as wide as he is tall.  

We were told about two forms of dialysis, with each having their own pros and cons.  Hemo dialysis or CRRT (Continuous Renal Replacement Therapy) is more intense but also very effective.  They would place a double lumen line in a major artery in Eli's neck and would hook him up to a machine that would pull his blood out of one line, run it through the filter in the machine, and put it back through the other line.  Pros: We would be able to make the chemistry in Eli's blood perfect in a fairly short time (48 hours or so).  Once his blood chemistry is right, we would also probably be able to get some of the fluid out of his tissues.  Pulling the fluid has to be done very slowly but it can definitely be done.  Cons: A risk of bleeding on the brain, the blood clotting as it run through the filter and back into his body and he would always have about 20% of his blood outside of his body so if something were to happen to the machine he would lose a ton of blood.  Logan and I were immediately turned off by the sound of this form of dialysis.  We felt like the risks far outweighed the reward at this point and didn't want to go there.  Fortunately the renal specialist and PICU doctors agreed with us and didn't think we should go that route at this point.  We put it out of our minds.

The second form of dialysis they told us about is called PD or Peritoneal Dialysis.  This is a much less invasive form of therapy but also doesn't guarantee perfect results like Hemo Dialysis.  If we chose to do PD Dialysis they would put a single tube in Eli's abdomen and then pump him with a solution that is very similar to sugar water.  They would leave the solution in for several hours and it would act like a filter and clean out the blood.  They would then drain it all from the tube and repeat that process multiple times until they got the numbers they wanted.  The main concern with this type of dialysis is that because of Eli's weak immune system, his abdomen wouldn't heal around the tube so everything would just leak out around it and the dialysis would be completely ineffective and he would be a high risk for catching a yeast infection, something that would be very difficult for him to overcome.

After talking with the surgeon we decided that we would wait one more day to see what Eli's nitrogen level did.  If it went up, we would immediately start the PD Dialysis.  If it stayed the same or went slightly down, we would give him another day to try and let his body do the work on its own.  We were aware of the risks but felt like we were almost stuck between a rock and a hard place and had to do something.

The next day, yesterday, Eli's nitrogen level went up.  During rounds the doctors told us that they would discuss everything with the team and then come and talk to us later in the day.  That afternoon, we still hadn't spoken to anybody, and the OR team walked into our room and told us they were prepped and ready to put the line in Eli's neck for the Hemo Dialysis.  Wait, what?  Obviously we were very confused because we had already ruled the Hemo Dialysis out.  The PICU team then quickly came in and said to the OR team: "Wait, we haven't even spoken to the parents, we haven't told them yet.  You need to leave."  As soon as things got calmed down, the doctors proceeded to tell us that they had discussed Eli's situation with all of the specialists and felt like PD Dialysis just wasn't worth even trying because they were very worried about his weak abdomen not being able to handle it.  Despite our concerns about the CRRT or Hemo Dialysis, we were told that the doctors felt that that was the best thing for Eli if we were going to do anything.  They talked to us about the pros and cons again  and then told us to discuss it and decide whether or not we wanted to go ahead and do it.

This is the part I wouldn't wish on anybody.  Logan and I felt like the weight of the world was on our shoulders as we made the most difficult decision we've ever had to make.  Do we not do anything and hope his body clears out the nitrogen on his own and risk hurting his brain?  Or do we go ahead with the CRRT that will definitely clear out his blood but has many risks of its own.  After much discussion and prayer, we decided to go through with the CRRT and trust that Eli was in Heavenly Father's hands.

A couple hours later the line was successfully placed in Eli's neck without any difficulty at all and the dialysis began.  Our room was a madhouse last night!  They told us that we are officially in their smallest room with the most equipment.  We have to be in this small room because it's made especially for immunocompromised kids but in this tiny room we have all the equipment, multiple nurses and doctors now, plus me and Logan.  If this is what it takes to get our little guy healthy then we'll gladly take it!

I was a little freaked out seeing this come out of his neck at first
but I'm starting to get used to all the lines now

Sponge Bob is the dialysis machine that we're trusting with his life!

After a rough day yesterday and crazy night with not much sleep, we received some wonderful news this morning!

1. Eli's CMV level went down from 4.1 to 2.8.  This is fantastic!  It's very likely that the CMV was attacking his lungs and not allowing them to heal so now that those levels are dropping his lungs should be much happier.

2.  Eli's nitrogen level went from 150 to 10!  His blood work looks perfect according to the doctors which is exactly what should happen to somebody on dialysis.  Hopefully this evening they can start trying to pull some of the fluid off of him with the dialysis machine.  It has to be done very slowly and carefully but the team is confident we can get some off of him.

3.  They stopped the paralytics and narcotics in order to allow his muscles a chance to move a bit and for the first time last night/early this morning Eli tried opening his eyes!  We actually didn't get to see it because we were sleeping but according to his nurses he couldn't get them too open because his eyes are so swollen :( He continued to move his little shoulders and arms and legs throughout the morning and also started breathing as well.  According to the doctors these are all great things because it shows that he's trying to fight the machines and do things on his own but the ventilator won't work properly if he's breathing on his own so after he had some time to get his muscles working a bit they put him back to sleep and paralyzed him.  We were told to be very excited about how he has responded to everything so we are very, very grateful for that!

We still have a ways to go but Eli is making great progress and we couldn't be more proud of him!  He's continuing to fight like a champ and show us all who's boss :)

Fight on, little Eli!

**Several weeks ago, a dear friend of mine, Carol Lavigne, approached me and threw out the idea of doing a boutique in behalf of our little family.  I felt honored that she was being so thoughtful but didn't want her to have to go to so much work.  Despite me telling this to her, she continued to express how much she wanted to help.  Here we are today and Carol, Rosalie (who's home the boutique will be at) and the countless number of people that are donating/helping have truly humbled me and Logan.  We can't express enough gratitude to all of you that have offered to help or attend the boutique when there's so much else you could be doing.  I genuinely hope I can one day find a way to personally thank and repay each and every one of you for the constant support we have received in so many ways.  Logan and I would not be where we are today if it weren't for the amazing people we have been blessed to have in our lives. THANK YOU!**