Show-Off

We received some fantastic news on Monday!  Eli's first chimerism results came back and they couldn't have been much better.  His chimerism tells us what percentage of his cells are donor cells and what percentage are his own.  Because he's only 50ish days post transplant, his doctors wanted him to have at least 20% donor cells at this point.  Eli had much higher expectation for himself it turns out because he has 96% donor cells!  He has 100% donor B-Cells and about 90-94% donor T-Cells.  The actual number of T-Cells he has is slightly lower than they were hoping for but the thought is that because he's had so many viruses and has been so sick his body just isn't producing them fast enough.

Although it's ideal, not all SCID kids need to have 100% donor cells to have a successful transplant and live a healthy, regular life.  However, with Eli's specific type of SCID, there is a history of the non-donor cells turning into cancer cells.  Because of this, Eli had a very strong chemo regimen in order to wipe out as many of his own cells as possible.  We are very pleased that he has such a high percentage of donor cells already but are definitely hoping to get that last 4% as well so we don't have to worry about cancer down the road.

Yesterday Eli spiked his very first fever.  It was a low-grade fever but much higher than his temperature typically is.  They cultured all of his lines, are testing for several different viruses and increased his range of antibiotics.  Everything came back negative this morning and he no longer has a fever so we're thinking that he's just proud of himself that he now has enough of an immune system to produce a fever that he was just showing off his new trick.  Good job, little dude!  We're proud of you :)

Because he's been on peritoneal dialysis for several days, the doctors removed the original dialysis catheter from Eli's neck a couple days ago.  I was so excited to get that thing out!  The OR put such a large line in his tiny little neck there was a joke about him having a garden hose in there.  The thought of it freaked me out every day so I was ecstatic when they said they were going to remove it.  There was a higher risk of bleeding because it was so big but everything went well and he handled it like a champ.  I stood next to him and he gripped my hand as hard as he could and just closed his eyes.  I'm so proud of our little fighter.  He has worse scars from from where the line was sutured to his head than where it actually came out of his neck :(

PD dialysis has been on hold for the past 24 hours or so.  There was fear initially that the catheter in Eli's tummy wouldn't heal properly but we decided to go for it anyway.  A couple days ago it started leaking quite a bit and isn't as effective as it should be.  They decided to take him off dialysis in order to allow his tummy more time to heal and hopefully work better when he goes back on.   He's very fluid positive again since he's been off because he still isn't urinating nearly enough but his lungs have handled the fluid overload much better than we expected.  Hopefully we can get him back on dialysis soon to get some of the fluid off.

Respiratory wise we're making slow progress.  He still has a lot of support on the vent but is headed in the right direction.  All of this is definitely a test of patience. Eli has been so close to being extubated a couple times now and then something has happened both times that set him back quite a bit.  We know it will happen when he's ready but I just can't wait for him to get that breathing tube out so he can feel a bit more like a normal baby.  As soon as he comes off the vent we'll be able to hold him as much as we want and even put clothes on him finally :)

These are a few of my favorite pictures right now.  Miss this happy face so much!

Keep up the strong fight, little buddy!

**A few people have asked us when our story is going to air on KSL and we were told today that it has been pushed back a little bit until next week probably so I will definitely let y'all know when we have a date**

Happy Mother's Day!

First things first: Happy Mother's Day to all of the wonderful moms out there, particularly those that have had such a major impact on my life.  There are too many people to thank individually but I am so grateful for the example each of you are to me.

23+ years ago I was given life by the most amazing woman I have ever met and feel blessed beyond words that I was given the mother I have.  She is the greatest example of how a mother should live her life and is one of the biggest reasons I am who I am today.  Mom, thank you so much for teaching me what my true priorities in life should be--most importantly that of raising my own family.  I love you so much and hope to one day be half the mom to my kids that you have been to me and my brothers!

From the time I was very little I dreamt about becoming a mom and knew it was what I wanted more than anything.  It wasn't easy getting Eli here and it hasn't been the easiest past 4 months either but it is far greater than I could have imagined.  Only those who are mothers themselves know what an incredible feeling it is to bring a baby into this world and have the calling of motherhood.  Being Eli's mom is the most wonderful thing that has ever happened to me and I will forever cherish the opportunity to be his mom.

Eli continues to make progress in many areas but still has a ways to go.  His lungs are getting so much better and his vent settings have been getting close to the point where he could be extubated so that is very exciting but we had a small setback with his respiratory status the past 24 hours.  They took Eli off the type of dialysis he was on and switched him to a much safer form of dialysis but he's having a tough time with the transition.  With this new Peritoneal Dialysis they fill his tummy with a large amount of fluid and let it sit there for 45 minutes and then drain it all out.  His peritoneum acts as the filter so it is a very healthy form of therapy but he doesn't like having all of the fluid in his tummy at all. It pushes his lungs up so he can't breathe as well so they've had to go back up on his vent settings so that's a bummer but hopefully he can adjust to this new dialysis soon and get back to where he was.  He's also bleeding again from his lungs so fingers crossed that resolves quickly as well.  Despite these minor setbacks, we've had several doctors come in the past couple days and tell us excitedly that Eli is no longer the sickest kid in the unit because of the progress he's made so that makes us very happy!

Tomorrow marks 3 months since we've been in the hospital.  It's hard to imagine that I haven't slept in my own bed in that long but there's nowhere I'd rather be than here with Eli (other than at home with him healthy, of course).  We were originally told we'd be here 4-6 months so we're still on the low end of that time frame for sure.  As long as Eli continues to make progress, that's all we can ask for!

Fight on, Eli!  

Roller Coaster Ride

All of last week Eli was making a lot of progress with his respiratory status and slowly coming down on his vent settings.  I was getting hopeful that within the next little while they would be able to extubate him.  On Saturday evening when Logan and I were at dinner, Eli had a pulmonary hemorrhage.  Because of all this bleeding, we definitely took a few steps back.  It took some time for them to get him stabilized but after a little while he was doing much better and Logan and I were breathing much easier as well!

The best way to find out where all of Eli's bleeding is coming from is to do a brush of his lungs and send a scope all the way down to find the actual source.  Here's the catch: The smallest scope they have is the exact same width as Eli's breathing tube which would leave him no room to breathe around it.  Clearly this isn't an option.  They will continue to take things very slowly and treat him for everything they can and we'll cross our fingers that the bleeding stops on its own.

In order for Eli to continue the type of dialysis he's on they have to use calcium to help filter his blood.  Unfortunately there is a nationwide shortage of calcium so it has been quite difficult to find enough.  Eli's doctors received word two days ago that every hospital around is completely out and there's none left.  This left us in quite a pickle because the dialysis is what's keeping him going right now.  Luckily there is another type of dialysis that we originally wanted to do but Eli wasn't stable enough to go to the OR to have the line placed so it wasn't an option at the time.  Because the calcium is gone, this is what we needed to try.  Eli went to the OR yesterday to have the line placed in his tummy and did so well!  He handled everything like a champ.  As soon as they brought him back to his room and were getting him settled, the team received a call from the pharmacy saying they had just gotten a 2 month supply of calcium.  Haha.  Typical, right?  His doctors definitely weren't pleased with the timing to say the least!

As ironic as that is, I've never believed in coincidences and honestly believe it was a blessing in disguise.  Had the hospital received the extra calcium before his line was placed they likely would have just continued with what they were already doing and not sent him to the OR because it's always a risk.  Because they assumed they were out of the calcium, they were forced to go another direction and get the line placed.  In the long run, this new type of dialysis will be much safer and better for Eli.  His tummy needs some time to heal but in the next week or so he will be switched over to PD dialysis.  Logan and I are very pleased with how it all worked out!

One sign that Eli is getting healthier: He honestly hasn't slept more than a few minutes at a time in the past 36ish hours!  I think the poor kid is terrified of getting paralyzed again and not being able to open his eyes because he has been wide-eyed and alert since yesterday morning.  I'm sure he's not in pain because he's receiving a constant drip of pain meds and his heart rate is at a good spot so that's reassuring.  I think he's just ready to be out of here and out of that crib!

Fight on, little Eli!

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Since we've been in the hospital, Logan and I have had the opportunity to participate in a few different interviews regarding our situation and more specifically Eli's health.  Today we were interviewed by KSL as part of their special on the StoryCorps project.  It will air on the news sometime next week.  When we have a definitive date I'll definitely let everyone know.

4 Months

Our little fighter is 4 months old today!  I have to be honest, it often feels like Eli should be 4 years old and not 4 months old but I'm sure that's because he's been through so much already in his short life.  Even though it may be hard to believe, I wouldn't give the past 4 months back for anything in the world.  Despite the ups and downs we've had as a family and everything our little guy has had to go through, the time we've had Eli in our lives has been an absolute blessing and more wonderful than I could ever imagine.  Waking up every morning knowing he's my little boy is the greatest miracle I could ask for.  Happy 4 month birthday, little dude!

It's tough to know Eli's true weight right now because he has been retaining so much water and isn't even weighed that often but his doctors feel he is pretty close to his "dry" weight and a couple days ago he was 11lb 4oz so my guess is somewhere right around 11 pounds even.  When they measured him this morning he was a hair under 24 inches long.  He's our tiny little 4 month old!

Despite being so sick and having such little energy, Eli's personality definitely shows through quite often.  If they suction his mouth, do mouth care or anything else he typically doesn't like, he'll shake his head back and forth.  He always loved getting a bath and washing his hair and that still calms him down quite a bit.  As some of you may remember, Eli was a fantastic eater before his transplant and they often told us to not be surprised if he developed a nipple aversion because he wouldn't have to eat on his own for so long.  Yesterday when they were re-taping his breathing tube the nurse was holding it in place with her finger and he was going to town sucking on it.  It was the cutest but saddest thing!  Hopefully he won't have a horribly difficult time learning to eat again when he's healthy.

When I woke up a couple days ago I found Eli all wrapped up in a bunch of blankets.  He had gotten a bath and his temperature was low so he was doing his best eskimo impression!

A good friend of mine and her husband and adorable little girl came and brought me and Logan dinner the other day.  It was so fun to visit with them and play with their darling little peanut.  They also brought Eli the perfect gift!  Check out the awesome mini boxing gloves for our little fighter that now hang right above his head.  Thank you for the delicious dinner and fun present, Nick and Sonia!  Eli can't wait to have play dates with Kayla :)

Eli has many friends here at the hospital and one of them brought us a fun little gift today.  It's a clicker that we are supposed to hang by his crib and every time something good happens we have to click it.  This is a good exercise to do because it will help us recognize all of the blessings we receive each day amidst the difficulties of living in the hospital.  We will definitely use it!

Eli was trialed off dialysis for the 2nd time last night around midnight and we are still waiting for him to pee!  He's keeping his labs under control for now so they don't have to rush to put him back on yet.  The goal is to give him until tomorrow morning to pee before he goes back on so we still have some time but are hoping it happens soon.  It took him about 23 hours to urinate after his first trial off so we are hoping it happens a little quicker this time.  Come on, little kidneys!

Eli's respiratory status continues to slowly improve every day.  His lungs seem to be getting stronger and they are getting less and less blood each time they suction his breathing tube so that's a great sign as well.  It's a slow recovery process but we couldn't be more proud of how hard Eli is fighting and all of his doctors talk about how much he is improving all the time.  Keep it up, buddy!

Fight on, little Eli!

~Optimism and a Miracle~

When Eli was admitted to the ICU 3 weeks ago, Logan and I (of course) had a lot of hope that everything would be just fine and that this was just another bump in the road.  What parent wouldn't think that way, right?  We knew he was sick and had some things to overcome but I don't think we realized how sick he has truly been.  We constantly heard the doctors and nurses talking about what serious condition he has been in and how many hurdles he has to clear before he's out of the woods but I still never doubted that he would make it through this.  I still have complete faith that Eli is going to have a complete healing and grow up to be a strong little boy but I have a much greater appreciation the past few days for what a miracle our fighter is.

During rounds the past two mornings Eli's doctors have been very open about how pleased they are with his progress.  They can't stop raving about how much better he is doing and how hard he is fighting to get healthy.  This is music to mine and Logan's ears because we haven't had their confidence that he would get better at all since we've been down here. We all know there is still a long road to travel before we are even discharged from the ICU but every day brings a little progress and healing to Eli's tiny body.  He's taking baby steps but we're just fine with that considering he's a baby!

Eli was trialed off dialysis yesterday around 3:30pm.  They wanted to give him anywhere from 12-24 hours to keep his labs normal and to produce some urine.  His potassium and a few other things they watch closely went up pretty fast and he still hasn't urinated at all so he will go back on around 4:00 this afternoon.  I can't deny I was a little discouraged this morning when I knew he would have to go back on because I was hoping this would be the day he'd be able to finish for good but all of his doctors said they would have been shocked if he was able to stay off after the first trial off.  In the words of one of his doctors, she would have been: "Jumping up and down!" if he had gone pee already.  They told us not to expect him to be done until after the fourth or fifth trial off so probably a few more weeks at least.  We were reminded multiple times this morning that although Eli's renal function is far from where we'd like it, his respiratory status is improving a ton.  As long as his doctors are encouraged with the way things are going, then so are we!

This morning our nurse found out that we haven't held Eli since we came down to the PICU and she couldn't believe it.  She was like: "Wait, you haven't held him at all?!" I told her that I just figured we couldn't while he was intubated.  Next thing you know, here we are holding our sweetheart for the first time in three weeks!

Lovin' his daddy time!

I can't tell you what a wonderful feeling this was!  I could have sat in that chair all day just staring at him.  It felt so wonderful having him in my arms again.  Since he went off dialysis yesterday, he's already over 500ml of fluid positive and you can tell a ton of it went right to his face!  The poor little dude is all chunked out again.  Luckily they'll be able to get that off in a couple days with the dialysis.

A few days ago, Eli's cousin, Lily, came to visit and brought him the best present ever!  That little girl already knows how to please her cousin and her cousin's mamma!

How adorable are they?!

Lily went with her mom and dad to the converse outlet while they were visiting Minnesota a couple weeks ago and brought back this studly pair of Chuck Taylors for Eli.  They're a bit big right now but as soon as he's home and healthy he'll be wearing them all the time!  Thank you, Uncle Blake, Aunt Staci and Lily!

**About a month ago, Logan and I had the opportunity to be interviewed by KSL for part of the annual Primary Children's Hospital telethon.  They are doing a small piece on our experience here in the hospital with Eli.  We had a great time doing the interview and are so grateful we had the chance to be a part of it.  It's still a ways away, but keep June 1st in the back of your mind because that's when it will air.  I will post more details later on as I find them out myself.**

A Big Step!

The doctors decided to trial Eli off dialysis early yesterday morning to give him a chance to urinate and see if he could keep things under control himself.  Around 3:30am they took him off and he was able to keep his labs at a pretty good spot but by 4:00pm he still hadn't gone pee so they put him back on.  Even though we were all hoping his kidneys would start working on their own, we knew it wasn't likely and figured he'd have to have a few more days of the CRRT.  The doctors' hope is that after a few more days of dialysis, Eli's lungs will get even stronger because they'll be able to pull more fluid off and all of that should help his kidneys start functioning again.  This circuit will run for 72 hours and we will reevaluate on Monday evening.

However, we do have some great news!  Logan and I ran downstairs to eat lunch yesterday and when we came back about 30 minutes later they had switched Eli from the oscillator to a traditional ventilator!  While on the oscillator, he had to be sedated and paralyzed because any breathing with the machine messes up his ventilation but on the regular ventilator he is allowed to breathe with it and doesn't have to be paralyzed.  A couple hours after they stopped his paralytic he opened his eyes for the first time in over 2 weeks!

I can't tell you what a wonderful thing it is to see those sweet eyes again.  He looks completely drugged up, exhausted and confused but it's still so fun to see those bright blue eyes :)

After roughly 24 hours on the ventilator, the doctors are very pleased with how Eli has handled the transition.  He is taking nice breaths along with the ventilator and continues to oxygenate well so we are slowly chipping away at the settings on the vent now.  A couple days ago they placed a feeding tube in Eli's nose so we can slowly get his tummy used to feedings again.  He is receiving a very slow rate of formula but something is better than nothing!  At times it feels like we have been down here for ages and will never get to leave but we can't deny the amount of progress Eli has made and continues to make every single day.  We are so proud of our little fighter!

Shoe of the day:

Fight on, little Eli!

Sponge Bob: Round 2

Things with Eli continue to head in the right direction!  Over the past 24 hours we have had several doctors walk in and say: "Wow, look how much better he looks!" He's still retaining a lot of fluid but he's much less puffy than he was a few days ago.  When we first got down to the PICU I hoped it would only be a few days or maybe a week until we could move back upstairs but now I'm telling myself to be patient and if it takes a few more weeks then that's what his little body needs.  We're allowing him to take tiny baby steps because after all, he's a baby.  Since my last post on Sunday, we've continued to come down on the settings on the oscillator and hopefully in the next few days we can make the switch to a more traditional ventilator.  The main setting on the oscillator that we're focusing on right now is called the Mean Airway Pressure which is the amount of pressure Eli needs to keep his lungs open.  It has been as high as 34 since we've been down here (we were told that a lot of pressure for an adult is 40 so 34 is quite a bit for a baby) and we are currently down to 24 so he's doing great!  As soon as we get the pressure down around 20 then they will consider switching over to a ventilator.  I'm sure it will be several more days before that happens but we are just fine with that.  We've seen and heard about too many kids down here that get weaned too quickly and have to go back on so we're happy to take it very slowly and allow Eli's lungs more time to heal.

Today is Eli's fifth full day on dialysis and his circuit needed to be changed so they took him off for a few hours while they did that to see how he reacted.  There was the tiniest bit of hope in everyone that he would start producing urine on his own when they took him off but we were told not to expect it that fast.  Had his kidneys started working on their own, they probably would have left him off for awhile but he didn't produce anything so they put him back on a couple hours later.  The circuit needs to be changed again in 72 hours so we will reevaluate on Friday evening.  During that time, they will continue trying to pull off more fluid.

For those of you that don't know, my favorite thing in the world is to dress my little boy up!  I often felt like he was a doll rather than my baby but he tolerated me well :) When we were up in ICS I would put a new outfit (including shoes!) on him every single day.  Just because we live in a hospital doesn't mean he shouldn't be stylin', right?!  Down in the ICU it's not really an option for me to dress him but I've been doing as much as I possibly can which is this: 

Notice the socks and single shoe :) I'm sure he'll appreciate that when he's older!

Eli also continues to make a lot of progress with his engrafting/counts.  His WBC/ANC is constantly fluctuating but this morning he had an ANC of 4,500--his highest yet!  Keep on growing, little cells!

I was reading a friend's blog today and came across a quote from President Uchtdorf that I loved:

"We shouldn't wait to be happy until we reach some future point, only to discover that happiness was already available--all the time! Life is not meant to be appreciated only in retrospect...there is something in each day to embrace and cherish.  There is something in each day that can bring gratitude and joy if only we will see and appreciate it."

This can be applied to everybody, no matter their circumstances, but of course I feel like it's perfect for what our little family is going through right now.  There are many things about our situation that aren't desirable but there are also many things I am so grateful for every single day and this quote is a great reminder to continue to recognize those blessings.  (Even though I didn't ask to steal it, thank you, Rachel, for sharing!)

Fight on, little Eli!