Eli's Final Days on Earth

This post has been a long time coming… in part, it has been really difficult to write and think back to these specific days, but also- life! It has been a whirlwind 5 years since Elijah has died, but his memories, stories, and legacy continue to live on SO strong. Because of this, I knew it was time to get it out there... To talk about those last days. To celebrate the legacy that has continued to be built in the last 5 years. Elijah HAS a story… our goal is to continue to share it and speak about all the Lord has done and continues to do with it. 

all back together after the longest hospital stay!

So, how do you even start a blog post that is 5 years old? For those of you who are new here, I (Britta) started a blog early in Eli’s diagnosis (Muscular Dystrophy) days to give mass updates, celebrations, and prayer requests. Looking back at our blog, our last post was about Eli’s discharge from his longest hospital stay ever. The world had shut down due to COVID (March 2020), and we entered Hospice Care in our home which allowed us to give Eli the pain medication he needed to prevent him from crying 24/7. This was a huge answer to prayer after we had been stuck in the hospital for weeks without knowing how we would be able to get discharged - the pain medication that was working for Eli could only be given in the hospital… so putting Eli on hospice care opened up more doors and avenues to get the medication he needed while at home.

When we got home from the hospital - our world was flipped upside down, but we were ready to take it in stride together. With a younger sibling (Ava), these long hospital stays were so hard on everyone. Mom or Dad slept at the hospital almost every night and both of us kept working during these stays. Ava was so well taken care of by family & friends, but being all together and unable to leave our houses due to the shutdown was a really weird blessing in disguise. We got so much time together and tried to do the best we could to enjoy our last month with Eli. When we left the hospital in “hospice,” no one really knew what that timeline meant… we were told we may have just a few months left with Eli, or possibly several years. It just depended on how Eli continued to tolerate his central line feeds and neurological pain. 

birthday party in bed!

Our first week we were home from the hospital (3/18-3/24/2020) it took Eli some getting used to his new pain medication (continuous lorazepam through his subq needle & PCA pump). There was not a lot of sleeping happening… and we had to supplement with other pain medications and Benadryl to try to get some sleep. The second week home from the hospital was really good (3/25-3/31/2020)... We had several happy days and I think 3 or 4 nights in a row where we didn't need to push the button on his pain medication overnight! 

Then starting the night of 3/31, things took a turn. We began having lots of nights of pain - just so much crying and discomfort. Nothing would work to calm him down - lots of added pain medications and it still wouldn’t calm him down. We had a really scary vomiting episode on 4/2/2020 where he choked and turned blue - something new for Eli. Eli had GI issues his whole life… near the end of his life, we added a discharge bag to his stomach to relieve pressure. It wasn’t glamorous by any means, but another sign that something was off for us because his discharge bag was filling up faster than ever. Another concern arose - his hemoglobin dropped to 8.1 (typically the medical professionals didn’t want this reading below 11). Then we began having lots of issues with his subq needle (where his pain medication was administered)... it needed replacing 4 times in less than a week... So, we knew he wasn’t getting his full dose of pain medication, this resulted in a very uncomfortable Eli.

We were also struggling to move him - physically bringing him downstairs to hang with the family. So in our mind, we just needed to get the needle to stay in so he could get his pain medication.

The next 3 weeks were a fast moving, whirlwind. The week of 4/9-4/15/2020, his breathing became a big concern- needing higher oxygen, sounding junky, and rapid breathing… looking at him without a medical degree, you could tell it was hard to breathe. His pain tolerance was starting to get better and he became very sleepy by the end of the week. This is when we started looping in our GI doctor and Lutheran General Hospital doctors with hospice to have Zoom meetings. Everyone was mostly concerned with his breathing - at the time we were thinking this was more related to his hemoglobin and we needed to add more breathing treatments.

Easter 4/12/2020

The week of 4/16/2020, we had some very long calls and talks with doctors and the hospice team every day. Getting a blood transfusion was not an option - the risks outweighed the benefits. We asked for complete honesty from everyone on our team from the beginning, and they were very honest with us this week that we are losing his breathing... and typically this means he only has weeks left to live. They called this phase "transitioning" with "actively dying" the next phase. His body was shutting down. In the last year of Eli’s life, it had been obvious that we were losing his GI system. Our doctors told us it can be typical for brain atrophy patients to be so good for so long with breathing/heart, and then "crash" suddenly.  Because he was starting to shut down, his little body was overloaded with fluids. At the time he was fed through a central line with TPN and his body wasn’t absorbing it, which is why his lungs were worsening and sounded full of fluid. (Turns out his hemoglobin dropping was also probably a sign that he was just overloaded with too many fluids.)

Our goal during his whole life was to keep him comfortable and see his smile... When that was no longer possible, we knew it was time to have the difficult discussions that we didn’t want to have. With the new knowledge of being at “end of life” and that he had too many fluids on him- we lowered TPN (his food source) little by little and started him on latix. Then we continued to transition to stopping TPN and all IV fluids all together. This did eventually lead to a little more comfortability for Eli and a more exhausted Eli- he was very sleepy in his last days. On 4/20/2020 during the day, our hospice team coordinated for a staff member to come over and help us make memory keepsakes. We were able to do fingerprint projects, Mother’s Day gifts, and the most amazing hand mold of all 4 of us holding hands (Eric, Britta, Eli, & Ava). 

The night of 4/20/2020 was a really bad night for Eli’s breathing, his oxygen was reading extremely low on his pulse ox even with his oxygen machine on as high as possible. When we let our hospice team know this, they warned us that he probably had less than a day to live. We were thankful to know this and were able to have friends and family over the morning of 4/21/2020 to say goodbye. Ava was able to say goodbye and then go have an escape to MorMor and Gruampa’s house for a sleepover. Eli died in our arms in his bed ~11am on 4/21/2020. 

The next few days were a whirlwind of funeral preparations, finding a burial spot, picking out a casket… things you never want to do as a parent and we were trying to do this all while the world was shut down due to COVID. We also had to work with his home health company to give back a lot of his medical equipment, which allowed us to turn his room back into a little boy’s room and not a hospital room. Thankfully our church helped us with a connection to a funeral home and allowed us to have a small, immediate family only, funeral at our church on 4/24/2020. One of our pastors who had gotten to know us and prayed for us along the way helped us lead the funeral. Britta’s small group leader blessed us with beautiful worship songs. Then we got to bury Eli only a few blocks from our home - a spot we still visit often.

Throughout Eli’s challenging life, we were sustained by unwavering support from family and friends near and far, most of whom couldn’t make it to the funeral. So, on 4/25/2020, we invited our friends and family to celebrate Eli’s life with us by posting things that made them feel brave and that brought them joy. We spent the whole day crying happy tears while reading your posts and thinking about the widespread impact Eli had in his short time on earth. We also asked friends and family to paint rocks or stones with messages or beautiful pictures that we used to decorate Eli’s grave with.

Life Since Eli’s Passing

• Ava, even though Eli passed when she was 2.5, has had a strong sense of remembering him and missing him often. 

• We welcomed Jenna JOY Peterman, a beautiful healthy girl, in March 2021… Eli taught us all about the joy of the Lord, so we knew we wanted to carry on a piece of his legacy in her name. Fun story: after a whirlwind day of delivery... Eli had to remind us again of what he taught us. As we were getting wheeled down to our room with Jenna, our nurse (who switched to be with us) gifted us with this rock. It is something she painted in the beginning of COVID and has kept in her pocket for almost a year. When she heard our story of Eli and knew Jenna’s name, she said she had to let go of this rock and give it to us.

  
  
  

• Each year on Eli’s birthday (3/17), we decorate Eli’s headstone and celebrate with balloons and cake. 

• Yearly we celebrate “Honor Eli Day” on 4/21. We ask our community to participate in an act of kindness day by spreading bravery and joy to those around them in Eli’s name. Every year we (Petermans) support a special needs family, support staff, or organization with a donation or gift in Eli’s name. 

• Ava & Jenna love to visit Eli and decorate his headstone. We bring him crafts, flowers, pinwheels, holiday decorations, you name it. Every year, we watch caterpillars grow into butterflies and release them at Eli’s headstone.  

• Team Eli, our charity race team, is staying strong and still putting in A LOT of miles to bring more awareness and funds to the Muscular Dystrophy Association!

• Total donations to date since creation: ~$300,000!!

  
  
  

• We are running races all over the world (Chicago, NYC, Berlin, Vegas, Boston, Nashville… and in one week London!)

• Continue to host “Miles for Eli” every October around Chicago marathon weekend to log miles by walking, running, or biking for Eli

• Ava & Jenna got to run in their first big race for Team Eli in Nashville in April 2024

  
  
  

• Each year, a teddy bear made out of Eli’s clothes joins us in our family photos. 

• We created a “God at Work” video for our church… which was a blessing for us to have our story in such a keepsake video of our testimony. 

• Interviewed by WGN thanks to Britta’s Aunt Sue nominating her for “most remarkable woman”

• Many of Eli’s specialist teams have used Eli’s case as a learning/teaching opportunity for residents with our permission.

"Your struggles are not in vain. Your pain is not without purpose. Your weakness may very well be your greatest strength. Because, dear ones, when it comes to the story God has for you, the pieces that fall into place are never in error, even if we don't see how they work together. You are in the middle of your story for a reason - 'for such a time as this.'” -Unknown

2 Corinthians 1:4 “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.'" 

Eli forever changed us for the better. The pain of his story had such a greater purpose for us personally, but as we are watching the ripple effect of his story reach out… we know that there’s a greater purpose for our community and others as well. We thank God for our short time with Eli and the storm that rooted us more deeply in Him. “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God.” ‭‭Romans‬ ‭8:18-19 ‭ESV‬‬

What is one big thing we learned from Eli that we want others to know:

• Eric: I’ve learned to release the illusion of control I once held. Through the life and challenges we experienced with Elijah, God shook our world—but in doing so, He showed us how beautiful life can be when we grow through those struggles and fully trust that His plan is greater than our own. We praise You in the high and we praise You in the low. God is good, all the time. And all the time, God is good.

• Britta: God is good. His purposes and plans are so much better than my own… and I am still learning to give God back the pen to my life’s story and watch what all He can do!

• Ava: To be brave! He had a lot of pain, but he could get through it with God. So I can be brave too when things are hard with God’s help.

• Jenna: He always smiles! He had joy from God.

God-willing, we’ll keep sharing Eli’s story. A story of faith, bravery, and joy that only God could write. Thank you to all of his followers - you are TEAM ELI. Your encouragement and support have meant everything to us. We hope you continue to be blessed and inspired by the gift that is Elijah Ted Peterman.

Be Brave 💚 Choose Joy

Going Home

The days and weeks are becoming a blur... 6.5 weeks in...

The week of March 9th presented us with an alternative to getting the IV diazepam approved for in home use... {Thank you to everyone who reached out to connections and tried to figure out how to get us IV diazepam!!! Team Eli community is a strong & well-connected one!} The new idea is a PCA pump with ativan, which administers continuous pain medication of ativan - cousin drug to diazepam. It also has the option to push a button and administer a bolus dose of ativan in times of more pain. This option sounds ideal for several reasons: easier to administer in the home, not breaking into his central line as often as we are in the hospital, and the continuous drip hopefully won't make him as sleepy as the bigger doses have been making him.

And... this PCA option got approved by insurance! We got word that this idea would be covered with our hospice supports during our care conference last Thursday (3/12). So that day we switched our doses of IV diazepam to ativan... That evening/ night was rough, but he settled down the next day. The change was not as rough as I thought it would be - praise the Lord!

The next hurdle is how to give continuous doses, since it isn't compatible with TPN (his nutrition that is put through his central line 20 hours a day). The first idea was a surgery to make his line a dual line... he was scheduled for surgery at 12pm on Monday March 16th... but that was halted amid the COVID19 procedures that are changing daily at the hospital. Eli is already at a higher risk for surgery with his virus/ cold & diagnosis, so the amazing palliative doctor was trying to think of another way... and that morning they figured out with Journey Care hospice that a PCA pump can be run through a Sub Q needle... This needle is something that is similar to what people with diabetes use and needs to be changed every 3 days. This needle/ pump can't be set up in the hospital, but we were able to set up continuous ativan through a peripheral line yesterday (3/17).

Celebrating a birthday in the hospital (2nd year in a row!) is never ideal... but the PICU team has definitely become people we hold close to our heart. They all made Eli feel tons of love on his birthday!

The plan for now is to go home tomorrow (3/19)... I get nervous even typing it, but the more people we have praying & thinking of us, the better! Let's get this superhero HOME!

Praises:

• The team working with Eli is just amazing... they are making very smart decisions, sometimes very quickly. Eli's disease and symptoms are rare, which requires a lot of thinking outside the box... like a PCA pump with ativan!
• Birthday fun and all the love from family & friends... watching singing videos made our day!
• "The Quarantine"... we definitely want to take this seriously, and we want to be home to self quarantine... I am going to be looking at this time as positively as I can... and I can't wait to be home with my family!!!!!
• Discharge planning

Prayers:

• Transition to home & setting up hospice care
• Inserting first Sub Q needle (hospice nurse will be doing this), learning all about this PCA pump, and that the PCA pump with ativan continues to be a solution to resolve his pain
  
  

MDA Green Day & St Patty's fun!

PT fun at the hospital... Eli really enjoyed a good stretching:

New song from Vertical Worship ♡ Every word speaks perfectly to how I feel about our journey.

https://www.youtube.com/watch?v=GefPVxycO4E

Lyrics:

I'm standing on the edge of, everything I know
Comfort is behind me, I've got to let that go
There's freedom in the free fall, when I'm falling into you
God knows where I'm going, maybe I don't have to

I lay me down at the altar
Over and over, over and over
From fear to faith, I surrender
Over and over, over and over

You take all my questions, as they're wrestled to the ground
Patiently You guide me, You're so good, beyond what I see now, oh
I don't have all the answers, trust is what I need
My comfort is in knowing, You're right here, You're right here next to me

I lay me down at the altar
Over and over, over and over
From fear to faith, I surrender
Over and over, over and over

I surrender, I surrender
I'm letting it all go
Because I trust You, I trust You

I gain it all in the letting go
So I let it go, You are in control
I find my life when I give it up
So I give it up, I can trust Your love
I gain it all in the letting go
So I let it go, You are in control
I find my life when I give it up
So I give it up, I can trust Your love
I gain it all in the letting go
So I let it go, You are in, You are in control
I find my life when I give it up
So I give it up, I can trust Your love

I lay me down at the altar
Over and over, over and over
You take me, God
From fear to faith, I surrender
Over and over, over and over
I'll sing it again, sing it again
I lay me down at the altar
Over and over, over and over
From fear to faith, I surrender
Over and over, over and over

I gain it all, I gain it all
I gain it all in the letting go
So I let it go, You are in control
I find my life when I give it up
So I give it up, I can trust Your love, oh

We trust in You, God
Oh, we trust in who You are, and in Your plans
You hold it all, so I lay it all down

I lay me down at the altar
Over and over, over and over, yes
From fear to faith, I surrender
Over and over, over and over

How do we get home?

There is still not a clear answer to this question... We could write a novel on all of the moving parts and people working to help us get out of the hospital. To keep it short and simple: there are still a few options that need to get sorted out.

Here are a few updates from the last couple weeks:

• Week of Feb 24th was a lot of waiting around until the Botox procedures... he was starting to feel better from his cold... we did 2 changes to his IV diazepam, which ended up being too much too fast... so we had to go back up on IV diazepam
• Feb 28th: Botox injections - in saliva glands and stomach... post procedures he was very sleepy. He slept most of the weekend recovering (and probably also getting used to the higher dose of IV diazepam again). TBD if the procedures actually helped - even harder to know now that he is sick.
• Monday March 2nd was a sad day... we moved to the Peds floor... most would think this is a good move; however, we have gotten pretty comfy in the PICU. Everyone knows us, each nurse only has 2 patients, we know the doctor teams, they know Eli's story and our goals for this hospital stay, and we feel that Eli is watched much closer in the PICU. 
• On 3/2 we also tried another lower dose of IV diazepam... so it was the perfect storm also being on the Peds floor. Tuesday night - Thursday morning (3/3-3/5) were rough. Eli was showing again that this lower dose of IV diazepam was not enough for him. Wednesday he went back to his last comfortable dose... and it took some convincing (OK maybe some yelling) and some help from the inside to get his PRN IV diazepam doses going over night Wednesday night to help it build back up in his system. By Thursday afternoon he was back to being comfortable!
• BUT... Wednesday he also started getting junky again... and was tested again... and Thursday we found out the Peds floor also gifted us with the Rhino virus, another cold.
• Thursday night he was really struggling to breathe - needed high flow oxygen and was moved back to the PICU... everyone was sad to see us back, but we were relieved :)
• Friday 3/6 Eli was continuing to struggle to breathe (he was breathing really fast and hard and not saturating enough oxygen)... so he went on on a RAM cannula Friday night... which is noninvasive ventilation. He responded really well to this, and will work on trying to wean off of the RAM and go back to high flow oxygen today (3/8).

We had another care conference on Thursday 3/5 with our palliative support teams at the hospital and for home to really start talking about our options for IV pain medication at home. The team has decided that due to his needs to keep him comfortable, we have qualified for hospice care. This will hopefully open a door somewhere to help us transition to home. At this point, we are still at the hospital because we cannot yet get IV diazepam or other IV pain medication at home... and the longer we stay here the more things he keeps catching. So there is a lot of people working really hard on the paperwork and approval of medications for us to try in the home. We have another care conference on Thursday to see where things are shaking out at and continuing talking through support for Eli.

Eli's birthday party was supposed to be yesterday (3/7) so Nate & Meg are in town... and Ava finally got to meet baby Axel! She's only been waiting since the day he was born. She is in heaven.

Praises!:

• Everything that everyone is doing to help us meet our family goal of having a comfortable Eli at home!
• The continued support from family and friends with Eli, food, and encouragement
• Prior to the cold, seeing some smiles and giggles again
• Being back in the PICU :)
• Making more time for Eric, Ava, and I to be together lately

Prayers:

• Finding a solution for IV pain meds at home

Results & Planning

This week at a glance:

Eli's pain subsided on Monday 2/17. It seems like it took 3.5 days or so to get the IV diazepam back in his system and make him comfortable again. Monday and Tuesday were mostly sleepy days & nights - likely resting from the painful weekend and on too high of pain medication again (but was needed to get him calm).


Tuesday 2/18: brain MRI

• We are due for a brain MRI at least once a year to check the progress of brain atrophy... his last one was Feb 2019 during our last long hospital stay
• Because of his virus and recent pneumonia, the anesthesiologist decided Eli would come back to his PICU room with a tracheal intubation to ensure proper breathing for his safety. With anesthesia there is always a risk that we will be unable to take out the breathing tube safely... but with 8! doctors, nurses, and the anesthesiologist in the room, they were able to remove Eli's tube right after arriving back in the room.
• Because of anesthesia, getting the breathing tube out, and his virus/ pneumonia... Eli went back on high flow oxygen post MRI. We were successfully able to get this off and back on a nasal cannula on Wednesday.
• MRI results: his brain has stayed the same this past year for the most part - didn't shrink again. His brain size is that of a 8-12 month old in the body of an almost 4 year old. Since his brain is significantly smaller than what it should be and with how much his body has grown this past year (~11 pounds!), it is likely that this is causing an increase in neuro agitation.

Wednesday was the first wean of his IV diazepam... Since last weekend, he got back up to 2mg every 6 hours. We are going to go very slow with this wean. So the first wean is 1.8mg every 6 hours. Thursday and Friday we started to see a much more awake boy during the day and started getting some of those irresistible Eli smiles back.

Thursday 2/20: small bowel follow through

• On Wednesday I began to ask if there was any GI testing that wouldn't require anesthesia that we could complete prior to our care conference Friday... like the small bowel follow through we did a year ago. This test injects dye in to his stomach through his Gtube and then they take imaging as it moves from his stomach to intestines and out. 
• Last year from this test we confirmed that Eli had slow emptying of his stomach, but still the test was complete in about ~15 minutes
• This year, they were only able to insert a small amount of dye before they saw him refluxing it up his throat on the camera and it took 3-4 hours for the dye to empty out of his stomach.
• Eli is attached to a Farrell bag at his stomach to gravity to empty his stomach of stomach acid and help him vent out air as needed. So in order to keep the dye in his stomach and watch it push through, we had to keep his bag clamped for a long period of time (~4 hours) - which made him very irritable.
• This test really helped us look at - what is happening in his GI system? We have been wondering if he is even able to digest his medications in his gut anymore and maybe that's why the IV pain meds are working so much better?

Friday 2/21: care conference

• SURPRISE! Our GI doctor surprised us and came in for the care conference while he was supposed to be on paternal leave - just had a baby Monday! We were expecting one of his partners to be there on his behalf. Brings happy tears to my eyes as I even type it... It was SO great to walk into a room with a table full of people who we actually really trust to make smart decisions for Eli's health & pain.
• Neuro standpoint: brain has not changed in the past year, but his body has grown, which is why we are probably seeing more neuro agitation. We can also see that his gut is slowing more, which is also causing more pain - Eli has always had an extra sensitive gut. However, his lungs & heart are still working really well in light of everything he has going on... I don't think that doctors will ever say it, but it seems to me that it is a miracle with how small and disorganized his brain is that his brain is still making connections - that his heart & lungs have given us no real issues and that Eli is able to interact with us in his own way.
• Now our focus is on his GI system and pain he is having:
• Everyone agrees that the pain regimen we are on now of the clonidine patch and IV diazepam is Eli's sweet spot - still working on weaning IV diazpeam a little to get him in the most comfortable and awake place, but almost there.
• New idea: botox in his stomach at the opening into his intestine. This will help the flow of gastric secretions and medications more... and hopefully relieve some pain of a full stomach- with how much he is refluxing and the possibility that it is making him nauseous.
• Working on getting IV diazepam in the home... this is the biggest challenge. Keep hitting roadblocks with our insurance, home health company, and palliative in the home agency... The doctors, social worker, and outpatient care manager are working so hard at this, but this might be the thing that keeps us here longer if we can't figure out how to get interventions at home that we need for his comfort.

Next week Eli will get botox in 2 places actually... (it's OK to laugh - we have to find the comic relief in it all!) Another issue that keeps arising this hospital stay is how much Eli is desatting (dipping in oxygen). At home, we typically have him on an oxygen monitor at night and he usually requires some oxygen at night. At the hospital he is always on monitors, he is still at times needing oxygen during the day, and desatting a lot. What we're finding is that he is just not really swallowing his saliva and it is blocking his airways. Once he is deep suctioned, he is able to jump his oxygen right back up. So at the same time he's under anesthesia next week for botox in his stomach, we are also going to put botox in his saliva glands to help clear up his airways more. The goal of this so that we are not needing as much monitoring and suctioning at home.

So it appears we'll be here in the hospital for another 1-2 weeks... momma bear expressed her VERY big concerns to make sure the birthday boy is out by his birthday party 😉 - we all know how much I like to put on birthday parties... so that is the goal. Things to work on/ do the next 1-2 weeks: botox for some more pain relief options & oxygen help, watch his pain levels after these procedures, and figure out how we get IV pain medications in the home!

Praises!:

• Our GI doctor who we've become very close to this past year showing up at the care conference - we are SO appreciative of the people who KEEP showing up for Eli and us.
• Getting brain MRI and small bowel follow through completed this week prior to care conference
• SLEPT THROUGH THE NIGHT ALL WEEK!
• IV diazepam is making him pain free, we are starting wean, and we are seeing him more comfortable & awake
• Friends spoiling Ava, cleaning our house, and leaving tons of food
• Ava's fun weekend get away in Chicago with aunt & grandparents
• Coworkers who are supporting us, praying for us, and always checking in

Prayers:

• Patience in the waiting of finding IV pain medication
• Answers to how we get the pain medications at home
• Botox injections to an effective pain management strategy
• Ava - as this stay gets longer and we're not all together, she's getting more emotional... even required Dad to make an extra trip to the hospital this week to come give me a hug

"I love you, O Lord, my strength. The Lord is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold. I call upon the Lord, who is worthy to be praised, and I am saved from my enemies. The cords of death encompassed me; the torrents of destruction assailed me; the cords of Sheol entangled me; the snares of death confronted me. In my distress I called upon the Lord; to my God I cried for help. From his temple he heard my voice, and my cry to him reached his ears."
~Psalms 18: 1-6, ESV

Paul: "But I do not account my life of any value nor as precious to myself, if only I may finish my course and the ministry that I received from the Lord Jesus, to testify to the gospel of the grace of God."
~Acts 20:24, ESV

No End In Sight

Here we are again... 1 year later... facing another very long hospitalization. February 2019 we spent basically the whole month in the hospital, and it unfortunately looks like Eli is trending towards this again.

Valentine's Day 2019 & 2020 spent apart from each other! 

What this hospital stay as looked like day by day for us:

• From where I left off with my last blog post... it took several days to get Eli's levels back to normal. I thought it would be a quick fix, and I was very wrong! They started replacing the night of 2/2 and stopped on 2/5.
• Also during this time, he was in extreme pain and was not sleeping... 4 days of crying all day and night. So the Palliative team took pretty drastic measures right away to try to get him comfortable. This included a clonodine patch (a medicine he usually used in lesser dose in his gtube at home for extreme fussiness/pain) that releases consistent pain medication for him, an insomnia/ anxiety medication for night, and IV diazepam (another med he is normally on in his gut at home, not IV... and in lesser doses and usually only at night). He began getting the IV diazepam around the clock and had some as needed doses as well that we were using. This pain plan finally began to work Wednesday 2/5 and Eli was finally moved to the regular pediatric floor that night... so we were starting to get things ready to go home hopefully Friday or that weekend.
  
• Friday 2/7: Eric was woken up to the PICU team assessing Eli in the room at 3/4am because Eli's breathing was worrisome and his temp got up to 100... the cause of all this unknown, and we know the drill so very well: virus tests take 24-48 hours to results and bacterial takes a full 48 hours to be negative. So we'd be sitting around the hospital and see what it was that was making Eli sick. That same morning he was put on high flow oxygen, did a chest xray, and moved back to the PICU to be monitored closely again.
  
• Eli was super congested all weekend 2/8-9. When he is congested we usually do more breathing treatments that we normally do at home 2-3 times a day. On Saturday 2/8 they increased them to every 2 hours all day and night. They were really trying to get all his secretions out because he was blocking his airways and desatting in oxygen frequently. Eli was needing to be "deep suctioned" frequently too... where a longer thin tubing is put down his nose to the back of his throat to suction secretions. We normally never do this at home and he was needing it all day and night.
• The results from both viral & bacterial tests came back 2/9 as negative... so that confused everyone and they were sure that he was showing with signs of something viral. So they re-did the chest xray and viral test. They were able to stop the high flow oxygen and get him back to a normal oxygen machine, but much higher levels than we use at home (we have up to 2L at home
  
  and at times he was needing 5L on 2/9). The second chest xray showed a lower left infiltration in his lung... so he was diagnosed with pneumonia and put on antibiotic for this.
• 2/10: we started to talk more about a pain plan for Eli. The IV diazepam is a controlled substance and not something we can get at home... And now he has been on it consistently for a week. So we needed to start weaning him off of it in order to get him home. He was supposed to start weaning on 2/7 (since he had been pain free for 2 days and just sleepy/ out of it), but there was miscommunication with a new computer system that was rolled out at Lutheran General that weekend (finally on Epic) and so it didn't start until 2/10. (FYI: really fun to be admitted while a hospital roles out a new computer system!)
• Second viral test came back early on the morning of 2/11 that Eli has a common cold (coronavirus... not the crazy one that is quarantining people) that he caught at the hospital... Nothing to do for this than what we were already doing: get secretions out with suctioning and keep doing extra breathing treatments. Now with the knowledge of the cold and the pneumonia, the goal to go home was to get to the place where we are able to support his oxygen needs at home.
• Since it was seeming like a discharge date was in the near future with his respiratory stuff getting in control... on 2/11 we tried the same dosing of diazepam in Eli's gtube that he was getting in the IV. We have diazepam for his gut at home, so we could just go home on this higher dose for his gut. We really didn't want to stay at the hospital because of weaning pain medications only... so I was pushing to get everything ready for discharge.
• However, on 2/11 Eli wanted to throw us another surprise. He withheld urinating overnight and through the morning... We've had several stays where Eli doesn't pee for long periods of time and everyone worries, but then they do a bladder scan and learn that he has no urine in his bladder. This time he had tons... so he had to be cathed to get his urine out. He did this again that same night and had to be cathed again... So his urine was sent out for testing Wednesday 2/12 in the morning to see if anything else was going wrong. We've never had to cath Eli for urine before.
• The morning of 2/12 I was hopeful for going home... but then we needed to watch for his urine sample and the doctors still didn't like how much the nurses and respiratory team were having to deep suction him (since we don't do this at home much). So the team wanted to give it one more day.
• The outpatient care manager and I caught up to make sure everything could get ready in the morning of 2/13 for discharge... Discharging Eli isn't an easy task... I was at the hospital 2/13 hoping to line everything up. I worked with and talked to his oxygen supply company - getting an oxygen concentrator that goes up higher than the one we have at home (2L to 4L), got oxygen tanks delivered to the hospital so that he could have oxygen on the car ride home, working on getting his new specialized TPN (feeds) and pump sent to our house, setting up his Synagis (helps protect against RSV) to be re-sent to our house since they'd been trying to deliver it for the past week while we weren't home, talking with his nursing agency to set up nursing again, keeping his school teachers posted, etc etc.... it was a long morning. Seemed like we were all good to go home that evening - the team just wanted to watch him during the day and then discharge before shift change... then Palliative doctor came in and everything changed...
• Eli was in pain again starting at 4am on 2/13... Palliative doctor thought he was having withdrawals from the IV pain meds... So she said we need to go back on those and try to get the IV dosing at home... because his withdrawal symptoms would only get worse. Feeling defeated, but not sure what else to do... we put Eli back on the IV diazepam while this Palliative doctor [who we LOVE] has been brainstorming a lot of options for Eli to get him more conducive pain medication at home - like IV dosing.
• 2/13: urine test showed nothing and Eli started urinating like normal again

  

  V-day in the hospital

• 2/14: Palliative doctor confirmed none of our home health agencies are authorized to give us IV diazepam in our home... so the new idea to get us home: a new nasal spray for seizure activity/ pain and rectal diazepam - both can be used at home, but not typical with the frequency Eli needs it... so we needed to wait and see how insurance/ pharmacy responded to the requests. Which they responded that same day and definitely not going to work... rectal diazepam in his amounts would be $1k/ month and the nose spray was $59k....back to square one 😂
• During the day on 2/14, Eli had some face twitching... right away the team ordered an EEG to see if it was seizure activity or withdrawals. The EEG showed no seizure activity, so the best guess is that even though Eli has been back on the IV diazepam for 24 hours, he was having withdrawal symptoms.
• Unfortunately Eli has been in more consistent pain again since Thursday 2/13 to Sunday 2/16... And we should be past the point of where withdrawals would be causing the pain since the IV diazepam is back in his system for the last 3 days. So everyone on the weekend team is stumped... no one knows why pain meds aren't working for him now and where his pain is coming from. The only answer as of right now is "disease progression."
• Unfortunately he didn't sleep 2/13-15 again... just whined or cried all night... BUT he slept last night 2/16 🙌
• The weekend team is anxious for today (Monday) for our specialist doctors to be back in because they want to talk to our GI and neurologist about possible work up and planning. Eli is due for full GI testing and a brain MRI that we were going to do once discharged... but to help understand his gut and pain, we might need to do something this hospital stay.

Real Talk:

• This has been hard hospital stay... All of them usually are: sleeping on a couch, our family separated, juggling work/ kids/ life schedules, etc. But this stay has been a LOT of not sleeping, his constant whining/ crying is killing us - so so sad, and trying to work during a busy season yet really being needed at the hospital as well... and poor Ava is just sad that her family isn't all together and is now sick with a cold - probably from visiting the hospital hallways (she's not allowed on the floor) while we swap kids.
• We've started a lot of "life planning" conversations this stay. One big one that has been on our mind since late 2019 is how much of Eli's medication is he actually absorbing in his gut? Eli struggles with keeping meds down, so sometimes he is vomiting them... but he is also attached to a bag at his stomach to empty his stomach. We clamp the bag for 1-2 hours when we put in medication, plenty of time to absorb, yet when we unclamp fluid is typically rushing out. The Palliative doctors were thinking that the IV diazepam has been working so well because he wasn't really absorbing his gut diazepam.
• We're at a loss for pain management... We sort of feel backed in a corner right now. We seem to manage the pain after days and days of trying, but they aren't sustainable strategies for home. So if we can figure out something for home, we will have to wean him off the IV doses of medication (which can take a week or more)... hence why we can feel that this hospital stay is not even close to over. And his pain has been on and off really hard over the last few months, not just this hospital stay, so a lot of our pain conversations are bigger picture too so we have options at home and hopefully less all-nighters.
• Which leads into that we have started talking about if this is the time for hospice support for Eli yet... Hospice would mean that doctors wouldn't be surprised if his life ended in the next 6 months. The doctors don't think we are there yet because his lungs and heart are still relatively stable. However, hospice support would be able to give us IV medications at home that we might need. But doctors don't feel like they can refer us for this yet.
• So many friends and family are asking how to help - thank you! We honestly are just not sure... We really need sleep and help with Eli's pain - hard for our family & friends to provide these.

Praises!:

• Weirdly enough... his withholding urine because that is really what kept us at the hospital another day and allowed us know that withdrawals and more pain were coming
• Slept through the night last night 2/16!
• My small group: amazing prayer warriors but also SPOILED us with pre-made meals, veggies, & snacks to last us a week
• Help from MorMor, Aunt Hanna, & Aunt Callie a lot this hospital stay... All while Hanna is slammed at work and MorMor is nursing a healing Grumpa from hip surgery.
• One of our day nurses who is willing to come to hospital with Eli during the day so we can try to work
• Valentine's Day - Hanna went to the hospital with Eli and MorMor & Grumpa came over to play with Ava and put her to bed, so that Eric and I could see each other for the first time in 2 weeks!

Prayers:

• Be back home together with a successful pain plan for home
• Upcoming life planning talks with doctors
• Perseverance to weather the storm
• Ava: our feisty emotional roller coaster... pray for her strength & understanding

A sweet friend sent me an article about special needs parenting from a Christian author that ended like this:
"Your struggles are not in vain. Your pain is not without purpose. Your weakness may very well be your greatest strength. Because, dear ones, when it comes to the story God has for you, the pieces fall into place are never in error, even if we don't see how they work together. You are in the middle of your story for a reason - 'for such a time as this.' 2 Corinthians 1:4- 'He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.'"

"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed." ~1 Peter 4:12-13