Monday, May 27, 2013

Elijah Logan Jorgensen

1/4/13 ~ 5/25/13
A beautiful angel received his wings and is now encircled in the love of his Heavenly Father after peacefully passing from this life in the arms of his adoring parents. 

Eli was born in Salt Lake City, Utah to Liz and Logan Jorgensen and brought them joy beyond description in his short four and a half months of life.  After a happy five weeks at home with his parents, Eli was diagnosed with Severe Combined Immune Deficiency and began a journey too difficult for most of us to comprehend. A successful bone marrow transplant unfortunately led to multiple struggles that his tiny body couldn't overcome. Despite going through so much, Eli fought until the very end and proved his desire to be here by holding his parents' gaze until his last few breaths of life.

Eli blessed the lives of a countless number of people and taught us all far more than we ever could have taught him. Our ultimate fighter beat the odds on several different occasions but in the end was called home to continue his great mission and work. He is survived by his parents and multiple grandparents, aunts, uncles and cousins who loved him dearly. Eli's parents offer their deepest gratitude to the staff at Primary Children's Medical Center who ensured their time as a little family was not only possible but also enjoyable.

Continue to fight on until we see you again, little Eli!

Funeral services will be held on Friday, May 31st 2013 at 11:00 a.m. at the Hillcrest Ward Meetinghouse located at 495 East 5600 South, Murray, Utah 84107. A viewing will be held on Thursday evening from 6:00 to 8:00 p.m. at the same location. Friends may visit on Friday morning from 9:30 to 10:30 a.m. 

Interment-Wasatch Lawn Memorial Park

Thursday, May 23, 2013

{Almost} Out of the Danger Zone

Although we aren't exactly sure when Eli had his stroke, it has officially been just over 72 hours since it was detected and that's a big deal.  He should now be past the time that he had the highest chance of having another stroke, bleeding on his brain or seizing.  The team has monitored him very closely since Monday afternoon and everyone seems to be cautiously optimistic that our little fighter will be able to pull through this.  There's still a long way to go but Eli has proven many people wrong many different times so we won't put anything past him!

Neurologically, Eli is making progress every day.  He has been much more alert since yesterday and he even started moving his fingers and toes on the left side a bit.  There aren't any current plans to have another MRI done so we are relying on the bedside exam to track his progress and it is definitely headed in the right direction.  On Tuesday afternoon Logan and I had a care conference with all of Eli's teams (Bone Marrow, PICU, Renal and Neuro) to make sure everyone is on the same page and to update us on his status.  If I'm being honest, I was quite nervous to sit down with everyone.  It had been an emotional previous 24 hours and I had a feeling we would be discussing things that would be tough for a parent to hear.  Surprisingly, I felt quite calm the entire time and Logan and I came out feeling optimistic.  

On an individual level, everything Eli is dealing with is perfectly possible to recover from but when you put SCID, respiratory failure, renal failure and a stroke all together it makes things much more difficult but definitely still possible.  As far as his bone marrow status, Eli couldn't be doing better.  They are very pleased with his progress in that regard.  The renal team is still hopeful that his kidneys will wake up but it's difficult to pinpoint a time when that might happen.  They like to give their patients' kidneys 3 months to get better before it's consider a more chronic issue.  Eli's kidneys stopped working about a month ago now so there's definitely still time.  As for neuro, this is the one I was most nervous to discuss.  We were told that if Eli made it through the next 72 hours then he would have a much better chance of making it but we hadn't yet discussed what his long-term prognosis might be.  The neuro docs basically told us that the tissue on the entire right side of Eli's brain is irrecoverable but if he was going to have a stroke, he had it at the perfect time due to his age and how much his brain is still growing and changing.  Because the right side of his brain will no longer function on its own, the left side will now (hopefully) begin to take over.  They said they have seen babies Eli's age that had the same type of stroke recover almost completely and some that only recovered a little bit.  Only time will tell how much Eli will recover but it was so good to hear that there's definitely hope!  Our little buddy has fought so hard to stay here and we couldn't be more proud of him!  We truly have an amazing spirit on our hands.

I received some of the pictures from KSL today that they took during the photo shoot of Eli for the telethon and for some reason fell in love with this one:



He looks like such a peaceful, happy, snoozing baby.  I can't wait for moments like this again when I can pick him up and cuddle him as he sleeps!  I'm sure I'll want to hold him so often when he's better that he'll want nothing to do with me after a short time.  To all the moms out there: Kiss and hug your babies extra tight tonight for me because there's nothing I miss more in the whole world than cuddling my little buddy!

Keep it up, little man!  Fight on, Eli!





Tuesday, May 21, 2013

In God's Hands

One of the toughest things about being here in the hospital, particularly the ICU, is how fast things can change.  One minute everything can be going pretty well and the next moment it seems like everything is going wrong.  If it wasn't for the amazing amount of prayers and support we constantly receive we'd never be able to make it through this.  To our amazing families, friends and those of you that have been praying for us that we haven't yet been able to meet: You will never know what a strength your support is to us. We can feel every prayer and positive thought sent our way and we know, without a doubt, it is bringing strength to us every second of every day.

Yesterday morning was a typical, quiet day and all seemed to be going pretty well.  Eli was handling the increase in his dialysis well and we were very pleased with the progress he was making.  Later in the afternoon Logan noticed that Eli wasn't moving the left side of his body.  He doesn't have a lot of muscle strength but he is able to move his fingers, hands and feet and hold onto things.  We watched him for several minutes and noticed that he was moving his right hand and foot quite a bit but his left side was completely limp and wouldn't respond to touch.  We pointed this out to our nurse and she went to mention it to the team.  A couple minutes later Eli was on his way downstairs for an emergency MRI because they were worried he had had a stroke.  Everything happened very fast but the minute we had a second to sit down as we waited for the MRI to take place, it broke our hearts to think that Eli had one more thing on his plate to deal with.  We knelt down and said a prayer together that Eli, Logan and I would feel peace regarding the situation and know that everything is in God's hands.  It's amazing what the power of the spirit can do.

Although a complete MRI takes a decent amount of time, the doctors knew right away that Eli had suffered a stroke.  Because of his low platelets, they were sure it was a stroke due to bleeding on the brain and they immediately began to order platelets in an attempt to help ease the bleeding as much as possible.  However, after further examination, they found that the stroke actually happened because a blood clot had lodged itself somewhere at the base of his brain and wasn't allowing any blood or oxygen to get to the entire right side of his brain.  With our very untrained eyes, it was easy for me and Logan to see how serious this blood clot and brain injury truly is with one look at the computer screen.

As soon as Eli got back from the MRI, we met with the team as they explained to us the seriousness of the situation and what our options were.  Because of how low Eli's platelets already are, he isn't a candidate for things like clot-busting medications that they might typically use.  Due to him being so sick already, there's really not much they can do other than make him comfortable and wait to see how he reacts and handles the blood clot on his own.  They have told us that the next 72 hours will be crucial to his long-term status.  There is a big chance Eli could get much sicker in the next 3 days so we will continue to watch him very closely and hope for a quiet, comfortable time for him.

One thing I have always tried to think about when times get tough is the well-known Serenity Prayer.  The first part that most people talk about is great but I love the entire thing that isn't spoken about as often.


God grant me the serenity 
to accept the things I cannot change; 
courage to change the things I can;
and wisdom to know the difference.


Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 
Taking, as He did, this sinful world
as it is, not as I would have it; 
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life 
and supremely happy with Him
Forever in the next.



At times like this when we feel so helpless because there isn't much we can do for Eli, it is such a comfort to remember that God's will will be done and we just need to have faith that it is perfect for Eli and for us.  Although the odds are entirely against him, we know that if it's meant to be, miracles can happen and we are holding on to that hope.  The greatest comfort Logan and I have right now is the knowledge that we are sealed to Eli and he is ours for eternity.  There is no greater comfort than that.

Fight on, sweet Eli

Thursday, May 16, 2013

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**

Sunday, May 12, 2013

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!  

Wednesday, May 8, 2013

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!

********************************************************************************************************************
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.

Saturday, May 4, 2013

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!

Wednesday, May 1, 2013

~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.**