Baby Steps

Since yesterday afternoon, Logan and I have been at a loss for words as we heard about the success of Eli's Benefit Boutique.  The amount of support we received was unimaginable and left us in tears as we were told about everyone that went.  I will forever feel in debt to each and every one of you for the love you have shown us--not only by supporting the boutique but because of the constant prayers and positive thoughts that are sent our way.  Although I wish I could personally give every single one of you a giant hug and thank you, I know I likely won't have that chance so please know that you have touched my family's hearts in a way you can't even imagine and my love and appreciation for all of you is greater than you'll ever know.  Thank you, thank you from the bottom of my heart!

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Boring is what we like best down in the ICU and unfortunately the past 2 days have been quite exciting.  Before I get to the details, I'll let you know that Eli is currently doing great and making progress.  

On Friday night around 2:30am, I happened to be awake and Eli's nurse was performing his usual bedside care.  They have to suction his breathing tube periodically to get as many secretions out as possible.  As soon as they finished the suctioning, Eli's heart rate, blood pressure and oxygenation immediately took a nose dive.  I was sure they would come right back up but instead they continued to drop pretty quick.  When his heart rate and oxygenation got down below 30 I started to panic and his nurses hit the "Code Blue" button.  He hadn't technically coded yet because he hadn't lost his pulse but they wanted help in there as quickly as possible.  Long story short, a blood clot got caught in Eli's breathing tube so he wasn't able to get proper ventilation.  It was a terrifying several minutes but as soon as they got it cleared out he was just fine.  I'm pretty sure my heart rate dropped lower than his!

On Saturday afternoon, the dialysis nurse came in to switch out the solution that filters his blood and everything was going just fine.  About an hour later they sent in some blood work and got a call back right away from the lab saying his potassium was critically high at 7.4 (it should be around 3 or 4).  Apparently potassium is very dangerous for the heart so once again, the team rushed in and started pumping him with stuff to protect his little body.  The dialysis was stopped so he didn't get any more potassium until they got him stable.  The solutions were re-mixed and about an hour later everything was up an running and his levels were much more normal.  

After both of those scares, he had a great evening and night and is making baby steps in the right direction!  We're continuing to come down on his vent settings and his lungs are looking better every single day.  Logan and I are perfectly happy to take everything very slowly so we don't have any relapses so we aren't pushing anything at all.  The toughest thing for me lately is whenever Eli tries opening his eyes.  I'm confident he isn't in any pain because his heart rate has stayed at a nice comfortable level but you can definitely tell when he's a bit more awake and trying to open his eyes because his little arms and legs will move around and he'll move his head from side to side.  Occassionally I'll hold his eyes open and talk to him but otherwise he's still happily sleeping :) I can't wait to see that little man completely awake and happy again!

This is currently my favorite picture from when we were at home:

A kiss for every person that helped make the boutique such a success!

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!**

Wild Mouse

Imagine the craziest roller coaster you have ever been on.  Ups and downs, twists and turns, loops and sudden starts and stops.  Every emotion seems to go through you as well.  Laughter, crying, screaming and fear.  That's exactly what life in the ICU feels like for us.  Two days ago Eli was doing really well and making so much progress and we genuinely thought he would be off this intense oscillator any time.  Today, things look pretty different.  Our poor little baby is quite sick and the doctors are having a hard time figuring out exactly what's wrong.  We know that Eli's lungs aren't working properly but it's likely because he has some sort of virus attacking them.  He has already tested positive for the Rhino Virus and CMV so those two things are probably making him pretty sick but there's still a chance he is being affected by Engraftment Syndrome as his body attempts to accept the new marrow and create white blood cells.

When Eli tested positive for CMV about 6 weeks ago he was put on an antibiotic to hopefully keep it under control until he engrafted and his body produced enough white cells to fight it.  Unfortunately his CMV levels have continued to increase so last week they did a CMV resistance test to find out if his CMV was resisting the particular antibiotic he's on.  The resistance test came back negative which is good because he can continue to take that antibiotic as well as another one but when the test came back his doctors found a type of CMV mutation they have never seen before.  Typical, right?  Haha.  They contacted a CMV specialist in Alabama and he too has never seen this mutation.  Our little fighter continues to beat all odds!  This means he's going to beat the odds in the good ways too, right? :)

Another major issue we continue to deal with is the fluid Eli is retaining.  He is on several diuretics to help him urinate more but they don't work super well.  He also still has the drain in his tummy and that gets out about 600ml of fluid a day but he continues to retain a ton of water in and around his lungs which is making it difficult for them to heal.  The discussion today is whether or not to start a form of dialysis to get some of this fluid off of him.  Of course there are pros and cons to everything but dialysis is serious enough that the doctors will discuss with us the cost vs reward and we'll decide from there whether or not to go ahead with it.  Hopefully we will be inspired enough to know whether or not this is what's best for Eli right now.

I feel like Logan and I have handled this whole journey pretty well.  We've tried to take it one day at a time and always keep a positive attitude because despite the challenges we face as a family every day, there are always just as many blessings we receive as well.  Yesterday was probably the most difficult day we've faced in the hospital.  Nothing too extreme happened but everything seemed to catch up with us a little bit.  I had such a hard time just looking at my little boy in his crib and not being able to do anything at all for him but look at him and kiss his little forehead and hope he could feel how much I love him.  I hope to never again take for granted the simple things that we usually don't appreciate like changing our baby's diapers and listening to them cry or simply being able to hold and cuddle them.  

Logan and I have great faith and hope that Eli will pull through this and one day soon be a strong little boy and have the opportunity to learn and grow just like we dream of.  It may be a rocky road getting there and we will likely be on this roller coaster for longer than we'd like or initially expected but I have no doubt we can also learn things from this experience that we couldn't learn any other way as long as we allow ourselves to.  Despite the amount of faith or hope we have, there is NO WAY we can do this alone and feel incredibly blessed and grateful for the amount of prayers, support and love that is sent our way.  We can feel it every second of every day and cherish it more than each one of you know so thank you!

Fight on, little Eli!

Making Progress!

We're still down in the PICU in critical condition but Eli is much more stable than a couple days ago and making some good progress!  First things first: As a reminder, his ANC needs to be 500 for two days in a row to be considered engrafted.  Yesterday he was 400 and this morning he was 1200!  We couldn't believe he made such a big jump.  There's a good chance his numbers will drop a bit because he's currently on a medicine called Neupogen that boosts his white count so they will probably stop that tomorrow and then his ANC will likely drop by half but we don't expect him to drop all the way below 500 tomorrow so most likely (fingers crossed!) his ANC will still be above 500 and then they would considered him engrafted today, day 20!  They told us before transplant it would likely happen between days 25 and 28 so he is doing great.  Good job, little dude!

As his counts have gone up, he has continued to oxygenate much better.  The past 24 hours we have been able to wean his numbers quite a bit on the oscillator and his lungs are looking better and better on the chest x-rays.  We're still a ways away from being on regular oxygen or even a less intense ventilator but we will definitely take the progress!  He's still not able to be off the oscillator long enough for them to do a protective brush or scope of his lungs so there's a chance we may not ever know exactly why he has been so sick but the important thing is he's getting healthier all the time.

Because he was so overloaded on fluid, they placed a drain in Eli's tummy yesterday and so far have gotten about a liter off him so that has made a huge difference on his lungs as well.  He's also starting to urinate better so everything is making his little body much happier.  At first I was hesitant to post a picture because he's looked so sick but he's starting to look much better so I thought I'd share a few:

Up in ICS the most pumps Eli had at one time was 4.  With the front and back combined, he now has a total of 16 pumps.  Poor little guy is getting anything and everything right now!

Typical activity while in the ICU because there's not much else to do!

Being in the ICU is definitely a roller coaster ride that has its ups and downs but we feel so happy and blessed with the progress that Eli is making.  We sure are witnessing a miracle!  

PICU Update

I've said this before, but now that our situation has changed in the last 24 hours I can definitely say it again: It's so easy to take the little things for granted.  When we first got to the hospital a couple months ago I remember thinking that I missed being able to do the small things at home with Eli like put him in his own crib, hold him without tubes and cords all over the place or look at his cute face without the oxygen.  Right now I would give anything to do those things!  It's definitely tough living in a hospital but at least for the past 2 months Logan and I have been able to take care of Eli and do most things for him.  Right now we can't do anything but look at him and hope he feels us there with him and knows how much we love him.

We still don't know everything but we know more than yesterday.  Eli is in critical condition in the ICU due to respiratory failure and he has also tested positive for the Rhino Virus.  In an adult it's typically a simple cold but in a baby with no immune system it's much more serious.  As I mentioned yesterday, there are a number of other things that could be wrong but we still can't test for most of them.  It's possible he has a collapsed lung, has pneumonia (or some other virus or bacteria), his CMV could be getting worse and it's also very likely that he's this sick as a result of his body trying to engraft.  It's a tough situation because we obviously don't want him to be sick but we really want/need him to engraft so hopefully his body will continue to do that so his new white cells can help fight whatever is going on inside.  Eli's team would love to do a scope of his lungs because it would likely tell them exactly what's going on but in order to do a scope he would have to be off the ventilator for at least 30 seconds and right now he desatts when they do something as simple as change his diaper so rather than do the scope, they have him on a number of antibiotics to treat him for many different things since they don't know exactly what it is. As his lungs get stronger, they may try doing the scope but there's also a chance he'll just need time to heal and we might not find out exactly what's causing all of this.

We were talking to Eli's team last night and telling them how it was so weird that he seemed to be doing pretty good yesterday morning and then in a matter of just a couple hours have complete respiratory failure and be so sick and they told us that babies are very resilient and will fight super hard for a long time and then they just hit a wall and shut down in a way so you're not given much warning.  There's no denying that everything happens exactly when and how it should because they got him down here to the ICU pretty quick and from the time we left our room to the time they got him down here his throat had almost completely closed so it was quite difficult for them to get the breathing tube in and took a couple doctors several attempts.  Logan and I probably should have left the room while they intubated him because it didn't do us any good to see his satts drop all the way down below 20 before they were finally able to get everything under control.  As soon as he was stable with the ventilator, an arterial line was placed in his wrist to allow them more access for meds as well as a more accurate blood pressure and later last night he had to have another central line placed in his femoral artery. They started around 7:30 or a little before and were thinking it would only take about 45 minutes but they didn't finish until 10:30 with just a short break in there.  He doesn't have great blood flow to his legs right now so it was tough finding the vein but it was successfully placed in the end.  On top of his original central line, new central line and art line he also now has a peripheral IV because they need a lot more access due to all of the meds he's on.

There's only room for one parent to sleep in the PICU so I slept in here last night and Logan was able to sleep upstairs in our regular room so it was really nice to have him here close by.  There's no way I could do this without him!  Despite everything that is going on, Logan and I can't deny the peace we feel about Eli's health.  He is in a tough place right now and at times it's almost unbearable to watch your baby go through something like this but we know this is just another bridge we have to cross to get him entirely healthy.  It's wonderful knowing he couldn't be in a better hospital that is more equipped to take care of him.  We are so grateful the nurses and doctors are able to give Eli medicine to make him sleep and essentially feel paralyzed so he doesn't experience any pain.  It's a wonderful thought for me to think that the next time he wakes up he will feel a ton better and won't know what has been going on.  Last, but definitely not least, if it wasn't for the countless prayers and power of the priesthood I know I definitely wouldn't feel as comforted as I do.  Thanks to the support of so many, our little fighter is going to make it through this!

Fight on, Eli!

(Ps...I probably won't post any pictures for awhile because he's not exactly in the most picturesque state.)

(Pss...Another thing Logan and I will never take for granted ever again: How wonderful the ICS unit it!  Don't get me wrong, this whole hospital is incredible but the ICS unit feels like home.  We miss everyone from the cleaning crew to the techs to the nurses and doctors so much!  Hopefully we can get back up there soon!)

PICU

It's amazing how fast things can change. We received the exciting news this morning that Eli's ANC is up to 300. He is considered engrafted when it stays at 500 for two days. Almost there!

Unfortunately this morning he started de-satting while on quite a bit of oxygen. In less than an hour he went from needing 2 liters of oxygen to not even being able to stay up with 7. He was quickly moved to the ICU where they were able to get him on an oscillator and stable within a fairly short time. 

There are a few different things that could be causing his lungs not to work but we won't know until tomorrow at the earliest. 

Logan and I are so grateful for all of your prayers and support--we couldn't do it without each and every one of you.

~3 Months~

It's hard to believe another month has passed!  Next week we will have been in the hospital for 2 months.  At times it feels like we've been here for less than that and that time is flying and other times it feels like we've been here our entire lives.  A couple weeks ago we officially passed the point where we've lived here at the hospital longer than at home (with Eli) so in a lot of ways home doesn't really feel like home either, it's quite strange.  We really are so proud of how strong Eli has been and can't wait to settle back in to somewhat regular lives in the (hopefully) near future!

Our little peanut is officially 3 months old today!  He is getting stronger all the time and amazes us every day with what an amazing little guy he truly is!  Here are some things about Eli:

-Finally moved to size one diapers a little bit ago.  We went through a phase where newborn diapers were too small and he kept blowing out of them but size 1 diapers were too big so he kept peeing out of them all over his clothes.  Luckily that didn't last too long!

-Even though he gets weighed every morning, it's tough to know what his real weight is right now because he is holding on to so much fluid so a lot of it is water weight.  It's common for bone marrow kids to get pretty puffy and Eli has definitely hit that point!  If I had to guess, I'd say his "real" weight is about 11 pounds so he's growing pretty well still!

-Most newborn clothes are too small now but the 0-3 and 3 month clothes are a bit big so he wears a little bit of those three sizes.  

-Because of Eli's health issues and all of the medications he's on, there's a good chance his growth will slow down quite a bit (height and weight) and his milestones and motor skills will also likely be delayed for awhile until we can get him off of his immunosuppressants, which probably won't happen for a another year or so.  Despite all of this, we can tell he's getting stronger every day and is now quite the champ at holding his head up so that's big for him!

-Before Eli got sick from the chemo, he was starting to become a much better sleeper!  For awhile he was waking up to eat like every hour and a half but then he got into this habit of sleeping for five hours, waking up to eat, and then sleeping for another three.  It was glorious!

Here's our puffy little stud muffin at 3 months:

The biggest news we have is that our little dude can finally hear!  He got his hearing aids two days ago and it was such a neat experience for us.  We have the most adorable video I want to post of his reaction when they turned the hearing aids on for the first time but it needs to be converted to a different type of file so until then, here's a sneak peak of what it was like for him: 

He was quite alarmed with the whole thing!

It's kinda hard to see but the ear mold is camo since he's been such a fighter!
In case you're wondering, he was born with hairy ears and it still hasn't fallen off yet :)

The hearing aids are quite powerful so he can hear environmental sounds and even get a lot of speech and language now.  They are programmed to slowly increase the strength over the course of two weeks so he doesn't get too overwhelmed all at once so in a couple weeks they'll be full strength.  Our initial thoughts were that Eli would hear us talking to him and immediately respond to what he was hearing but then we realized that even a newborn with normal hearing doesn't respond to sound right away even though they hear it so it will probably take a couple months before he'll actually react to the things he's hearing.  Logan and I are so happy he has been given this ability to hear, even if it isn't complete hearing. We are so grateful for the technology that makes this possible and are so excited for Eli to experience this new part of his world!

Health Update:

Our poor little dude has some pretty brutal mucositis.  We were forewarned this would happen but it still doesn't make it any easier to see him deal with it.  He has completely given up on eating and is getting everything he needs through IV nutrition.  The worst part about this is he still really wants to eat so at least once a day he'll try eating and want the bottle so bad but after he swallows a couple times he bursts into tears :( It's even difficult for him to take a binky because then he has to swallow occasionally which is too painful so he doesn't let himself take one now.  As soon as his counts go up the mucositis should go away pretty quick so fingers crossed that happens sooner rather than later!  In order to to keep the pain under control, he gets meds that make him pretty exhausted so that combined with his body trying to heal itself is a recipe for one super tired baby!  We don't see the whites of his eyes a whole lot but when we do we sure love it :)

PCMC Shoutout:
I'm sure I've said this before, but it can't be said enough...the staff here at Primary Children's, specifically the ICS unit, has been absolutely incredible.  Everyone from the cleaning crew, to the techs, to the nurses, to the doctors have been amazing.  Obviously we wish our circumstances were different and we didn't have to be here at all but we definitely wouldn't want to be anywhere else given Eli's situation.  As hard as it is to believe, we truly do feel at home (as much as that's possible) because of how well not only Eli but Logan and I are taken care of.  This is just another wonderful blessing we've been given the past couple months!

Fight on, little Eli!