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

Hello 2020

Petermans rang in the New Year in Florida! Eli pulled an all-nighter on NYE... We were not even planning to stay up til midnight, so Eli ensured that we did that. Eric & I slept the morning away while Ava got to play with MorMor & Grumpa - like she did every morning of our Florida trip... she slept over at their condo the whole vacation! The drive back from Florida was surprisingly OK - we did it in one day so that we were able to have a day to be back home and catch up from our trip. The kids were great in the car! We were ready to get back from break and back on our routine... with more help from nurses.

Our first week back home in January we switched back on to Eli's "off week" antibiotic... so we expected a rough week, but he actually did OK for this "off week." For now we will be sticking with our plan of 4 weeks on his Flagyl and 1 week on Bactrim for his off week.

It wasn't long before we were back in the hospital with a clogged line again... On January 13th I got a call from our nurse saying Eli's machine was saying the line was occluded (always our first clue when his feeds won't go in) and that when she tried to water flush him, she heard his line pop and it was leaking. This is a big deal because we need his line for feeds, but also having a popped line could let anything in to his vein, which would cause infection. So Eric rushed home from work and brought him right in to the ER. After lots of assessments, xrays, etc. it was clear Eli was going to be admitted and wait around for surgery to repair his line. They were able to do a quick fix to repair the hole in the line in the ER, but his line was still not flushing or working.

With his central line now... it's not as easy to fix a clogged line. With his PICC line in his arm, we would go in to the ER and the IR team (interventional radiology) would be able to swap out his line the same day usually. Now with his central line, only the surgery team can swap it out... and they were swamped. So we sat around an waited Jan 14th until his scheduled surgery on Jan 15th. This was good though to be able to talk to doctors and surgeons for planning. The moving of his PICC line from his arm to this central line in his chest was supposed to help stop our clogging issues... yet here we were, back 5 weeks after it was put in. So we began to talk about - is it his feeds that are causing this clogging since it doesn't seem like the placement is the only cause??

music therapy

Jan 15th surgery went OK. The surgeon was very surprised to see how clogged his line was - solidly clogged... didn't seem like a TPN (his feeds) issue of clogging. So everyone was sort of stumped again, but we were able to go home and monitor him while they came up with a plan for feeds and other ideas. His central line surgery is a bigger surgery than his PICC line surgeries, and this recovery was a little rougher than the first. They exited his line in a new location this time, so his old location was a wound that needed healing. Due to this wound and the new line exit location, Eli had a lot of bleeding and needed his dressing changed the next day. He was also in more pain than normal recovering from this surgery.

A few days after surgery his doctors & team decided that maybe his reflux medication we do IV is what is not working with his TPN lipids. The Nexium IV & lipids are not compatible... which can mean a few things, but basically that they cannot be run together. We do not run them together and we flush in between them, but the best guess right now is that his Nexium IV was not getting flushed out of his tube all the way, and then his once a week lipids were not mixing well with it... and the line was slowly clogging. Frustrating to learn this now after 6 months of clogging lines, but hopeful that maybe we at least have an answer.

Of course this news - needing to change his reflux medication and his feeds around - came right before Eric and I were supposed to go out of town for the weekend. Luckily we were able to put things on hold until we came back, so that nurses and grandmas weren't having to be alone with him while so many changes were happening. While we were away we received the exciting news that we have a nephew/ cousin!!! Nate & Meg welcomed a healthy baby boy - Axel Elias Hewlig on Jan 19th. His middle name is Greek for Elijah :)

When we got back from our trip... Jan 20 & 21st is when we changed his TPN makeup and his reflux medication. Lots of changes for a little guy... and they didn't go well.

Eric and Eli were back in the ER on Jan 25th from about 6pm - 3am... his machine was saying occluded again and we both almost cried. We couldn't believe it was happening AGAIN! We had stopped his reflux IV med and hadn't given TPN lipids in a few weeks... so we were stumped. Luckily this time it was a quick fix and his line was just kinked on the outside of his body under his dressing. However, once that was discovered... it still took a LONG time for it to be fixed and there was some hiccups along the way... let's just say that Eric had to advocate and push pretty hard to get things fixed and get home.

Changing his reflux medication around has always been difficult for Eli. It usually causes lots of refluxing, gagging, burping/ hiccuping, irritability, increased vomiting of meds, and not great sleep... The first week we saw increase of reflux, gagging, & hiccups/ burps... but luckily that was it. He was handling the change OK, until Jan 29th - he became very irritable and started not sleeping well. We attributed this to his old IV reflux med finally being out of his system and getting used to the same med (in lesser dose) in his Gtube. But then our routine biweekly blood draws came back critical on 2/2/2020... so we ended back in the ER with Eli right before the Super Bowl started. (Eli's new thing I guess... being in the hospital on my birthday and for the Super Bowl - did in 2019 too).

Thinking that we would hopefully just need some IVs to replace the labs that were low... then we would get to go home... was wishful thinking. Eli was admitted to the PICU to be closely watched. His potassium, sodium, and electrolyte levels were critically low. These can causes headaches, irritability, heart arrhythmia, and seizures. So needless to say, it was good that he would be closely watched while we tried to get his levels back to normal levels. Unfortunately Eli has been miserable... so uncomfortable with these off levels... He had 2 all-nighters of pain and whining, and is just exhausted. His labs (on 2/3) did show levels are coming up since starting the replacing, but he still needs to be watched for another day, needs more replacing, and then needs to be monitored once he is put back on TPN tonight (2/3). 

ekg to check on his heart

The cause for these low levels is likely the changing around of his TPN 2 weeks ago. His team decided to dilute his TPN more in addition to stopping his reflux med IV in case the thickness of the TPN was also attributing to the clogging lines. When they diluted his TPN it clearly wasn't giving him enough of what he needs to stay at normal levels. So the goal once his levels are replaced... is to switch his TPN around again and monitor him over night while he's on his "new" TPN before we can go home. We are also continuing to talk about his reflux med and looking for better options... and talking with palliative about his pain levels and help with his sleep.

Praises!:

• Beginning to solve the problems of our clogged lines... hopefully the change in reflux med & TPN can stop them altogether
• Eric and I able to enjoy a weekend away
• Welcoming a healthy baby boy to the family!
• Mom intuition is a real thing... something was pushing me to bring him to the ER on 2/2 and not wait until 2/3 like his doctor was thinking... since we could've technically waited to take him in until we had a 2nd critical lab to compare to (sometimes labs are just bad draws)
• 2/2: getting a room for Eli in the ER and then the PICU... Luther General is SLAMMED right now with kids and all kinds of illnesses... some kids are waiting 6-7 hours in the ER they told us. Luckily they know Eli well and pushed him along to get him the replacements we needed to start.

Prayers:

• Finding a successful reflux medication for him in his Gtube
• Finding a successful balance of nutrition for his needs in his TPN
• Continued answers for pain/ irritability
• Sleep & more night nurses

Vertical Worship: Yes I Will
    I count on one thing

The same God that never fails
Will not fail me now
You won't fail me now
In the waiting
The same God who's never late
Is working all things out
You're working all things out

Yes I will, lift You high in the lowest valley
Yes I will, bless Your name
Oh, yes I will, sing for joy when my heart is heavy
All my days, oh yes I will

I count on one thing
The same God that never fails
Will not fail me now
You won't fail me now
In the waiting
The same God who's never late
Is working all things out
Is working all things out

Oh, yes I will, lift You high in the lowest valley
Yes I will, bless Your name
Oh, yes I will, sing for joy when my heart is heavy
For all my days, oh yes I will
For all my days, oh yes, I will

And I choose to praise
To glorify, glorify
The Name of all names
That nothing can stand against
And I choose to praise
To glorify, glorify
The Name of all names
That nothing can stand against
And I choose to praise
To glorify, glorify
The Name of all names
That nothing can stand against
And I choose to praise
To glorify, to glorify
The Name of all names
That nothing can stand against

Oh, yes I will, lift You high in the lowest valley
Yes I will, bless Your name
Oh, yes I will, sing for joy when my heart is heavy
All my days, oh yes, I will
For all my days, oh yes, I will
For all my days, yes, I will

2019 Review...

Yes I know it's 2020... but 2019 was just a tad crazy and I just couldn't keep up with the blog! New year... hopefully more updates coming up! Here's where we've been, what's been going on with Eli's health & schooling, and our current prayers! Thanks to those of you asking for more updates and always wanting to follow along with Team P's journey... We are so thankful for our community.

February 2019 where I left off...:

• Eli was hospitalized for the whole month, still our longest hospital stay thankfully
• During that stay we did another brain MRI to find more atrophy, and did GI testing to try to understand more of his GI issues (which didn't give us any new information = his GI system looks "normal" from testing perspective, just slow emptying of his stomach)
• Towards the end of his hospital stay, we worked on getting his blood pressure down and then we were allowed to discharge
• Right before leaving, we pulled his G-J tube and went back to a G tube only. Since putting the new G-J in in January, it had already moved a month later and just wasn't working for Eli
• Started on an antibiotic to help Small Intestinal Bacterial Overgrowth Syndrome (aka he has extra gas which causes him pain)... Because it's an antibiotic, Eli has to cycle on and off of it so that his body doesn't get used to it and it doesn't work anymore

March 2019:

• Switched reflux medications... so we were struggling with pain, sleep, and reflux issues... ultimately went back to a reflux medication that works well for him and doing it IV! Which means he absolutely keeps it in :)
• SCHOOL! Since Eli turned 3 in March, we transitioned his IFSP to an IEP. Due to his fragile state from this year... we decided to do home school services until he's ready to go to school
• On Eli's birthday he spiked a fever... we guessed it was going to be another line infection because we had a line issue with one of his nurses a few days before. Unfortunately had to go to the ER after his birthday party and he did have another picc line infection... luckily this stay was quicker after his line was pulled and replaced
• Got his wheelchair

April 2019:

• FINALLY fully staffed for nurses during the day... We now have a M/W/F nurse that does some weekends and a Tu/Th nurse!!! We lost one night nurse for a maternity leave, but gained a new night nurse... so at this time we had 2 night nurses are were getting some sleep :)
• Started home school
• Vision impaired Easter egg hunt with Eli's school was so fun! Chirping Easter eggs, food, treats, & lots of fun with other vision impaired kids
• Low hemoglobin levels started to be noticed at the end of the month
• Added another antibiotic to his medication routine... We started Flagyl for his Small Intestinal Bacterial Overgrowth Syndrome, but then needed something for his "off week" since Eli was having a lot of pain and reflux issues when we would go off of Flagyl. So this started a cycle on and off 2 different antibiotics, which has been a continual challenge for Eli.

May 2019:

• Lost a night nurse who retired... back down to 1!
• 1 ER visit due to off labs... but luckily got to go home the same night
• Neuro Muscular clinic day to check in with all his doctors - always a good day to see all his doctors in one visit and have them brainstorming together
• Family weekend in Boston! Aunt Hanna graduated from Boston University Law School and we brought both kids. Eli's first time flying with his picc line and all went well!
• Hemoglobin levels still an issue (in the 8s and we want it at 10)... Tried to have him take some iron in his G tube to work on getting his hemoglobin up - it didn't work... it's so hard on your stomach that he would just vomit it

June 2019:

• MDA walk with family and friends... fun first time being apart of this event!
• White Sox game in a big suite with Journey Care families
• Started dipping to the low 7s instead of 8s for hemoglobin... established care with hematologist to plan for how we bring his iron levels back up. Low hemoglobin was making him very sleepy and lethargic... and just not our normal Eli
• Checked in with his ENT - all the reflux damage that was seen summer 2018 is gone! Still lots of reflux and spitting up issues... but his reflux medication is now controlling the damage/ not giving him any damage when he does it.
• Eli CRUSHED summer school... the therapists and teacher continued to come through June and Eli did so well with his vision therapy, playing with toys, using his wheelchair/ AFOs/ stander
• Had some summer fun and went to Brookfield Zoo a few times and Morton Arboretum to find the trolls

July 2019:

• Our night nurse came back from maternity leave... for one blissful month we had 2 night nurses working several shifts and we were getting sleep! :)
• 4th of July fun at festivals, neighborhood party, Sargis' lake house, and being in the Palatine parade for Eric's company (GRNE Solar)
• Eli's hemoglobin got down to low 6s... time for blood transfusion to get him back up to normal levels! Then he did 3 rounds of iron IV to maintain his hemoglobin after the transfusion... which worked!
• Eric and I celebrated 7 years of marriage July 14, 2019
• Ava turned 2... fun birthday party with family & friends
• We listed our house and it went under contract in 8 days... we had to find a house to move in to before we went on vacation out of the country... just a little stressful...

August 2019:

• Eric and I took our first big trip away from kids... and Eli ended up in hospital. :( He wasn't himself when we left - irritable & sleepy... and then some of his blood work numbers were elevated right after we left. With everyone being extra cautious around him with us gone, the doctors decided to admit him... then after being there for 1 day and everyone thinking he was going to go home... he spiked a fever... then received a positive blood culture for another staph infection in his picc line.
• Britta started her school year sleeping at the hospital... luckily again it was as quick as possible once the line infection cleared and he got a new line. Because we have to be cautious with his veins, we switched the picc line to his other arm (left side - which became an issue later on).
• Lost another night nurse... he went back to school in another state. So back to 1 who works a couple days a week (2-3).
• Eli WENT to school for one day... rode the bus... went for 2 hours... met his class & teachers... loved it... and then never went back! 😂 Eli got sick, of course from all the germs... and it lasted a while, which made him unable to go back to school. We began to start talking about home schooling again and also knew we were about to move... so school was put on pause
• Eli gained a lot of weight over the summer... too fast... so we began to switch around his TPN. He moved to doing lipids (fats) in his TPN only once a week... #diet

September 2019:

• Lots of packing... we accumulated so much stuff in 4 years in our first house! Moving with kids is a lot more complicated and moving with Eli is even harder... we moved to Palatine in mid Sept. Eric's company is in Palatine, so it's nice to be a few minutes from his office.
• Lots of unpacking...
• Sept 29th we had our first of MANY clogged picc lines... Eli & Eric spent the whole day in the ER where they did 2 rounds of tPA to try to unclog it... which they were successful with and they got to come home in the evening...
• BUT then we were back the next night (9/30) with it clogged again. They tried 2 more rounds of tPA that were unsuccessful. We were admitted to spend the night in the hospital and get his line replaced the next day (10/1) - minor surgery.
• 9/30 - rare disease day! Celebrated with yummy green ribbon cookies and lots of friends & family wearing their Team Eli shirts.

October 2019:

 

• Took some family photos in our new home
• Had some family fun at a pumpkin farm
• Oct 25 another clogged line... woken up from our night nurse at 4:30am that his machine was occluding and we couldn't get any flushes to go in. tPA didn't work... so another small surgery to replace his line... out that same day.
• Halloween fun... Eli's first wheelchair costume: firefighter in a fire truck! Ava was his fire dog, aunt Hanna his fire hydrant, and mom was the burning building

November 2019:

 

• Team Eli is BACK! A small group of people, started by my amazing sister Hanna again, is doing the Chicago 2020 marathon for Eli/ MDA! {I  pulled the trigger and signed up at the end of Dec}
• Had friends from out of town visit for a fun weekend, Eric turned 33, and we had our annual besties Christmas sleepover!
• 11/27 we were headed to the ER at 4am... and another long day in the ER with a clogged line. This time we did more planning and prepping for what our next step is. We did ultrasounds of Eli's veins and met with a surgeon. The best guess is that the placement of the picc line in Eli's left arm is not the best vein and not a big enough opening for his TPN to empty in to. Another minor surgery to swap out this clogged line until we could get on the surgeon's scheduled to try a tunnel line in Eli's chest.
• We hosted our first Thanksgiving in our new house! Went great!
• Grandpa Gene passed away, so Britta's family headed to NE for his funeral and time together for a few days.

December 2019:

 

• 12/6... PLANNED surgery to move Eli's picc line from his arm to a tunnel line in his chest. This option is supposed to not occlude as much based on how it empties in to his veins and supposed to better protect from infection because it tunnels under his skin before entering a vein.
• Journey Care Christmas party... our 2nd year going. So much fun! Bowling, bocce, food, Santa, presents... Ava & Eli both had a blast.
  
• 12/13 - ER all day because Eli had a fever... any time he has a fever, we have to make sure it's not a line infection. Eli was admitted to watch his blood cultures for a positive one... he did test positive for the metapneumovirus, which is a really bad cold... not surprising because our whole house was hit with it! Eli was discharged on 12/15 after his blood cultures were negative for 2 days... his fever was just from the cold, which lasted for a few weeks.
• AFO appointment... he has grown SO much in the past year from when we got his AFOs in Dec 2018... they were way too small.
• GI appt to check in... trying a new "off week" antibiotic and trying a new time table for his antibiotics. Went well for the first round of this plan in Dec!
• Spent Christmas in Sherman, IL with Eric's family... then we DROVE down to Florida this year to be with Britta's family. The drive was better than we expected :)
  
• Eli was pretty happy and comfortable during the days of winter break, but unfortunately only slept through 1 night of winter break. Most of his nights were whiney, crying, coughing, or just awake... we are beginning to plan how to better help him sleep. The last quarter of 2019 was definitely a sleep deprived one for the Petermans.

The second half of 2019 was definitely a blur. Between not a lot of sleep, lots of hospital visits, and moving... we often felt like we were surviving. We spent 71 days in the ER/ hospital in 2019... this doesn't include his normal doctor/ specialist visits and all the nurses who come to the house to see him (which is at least weekly). We are ready for a fresh start in 2020 and hopefully continuing to find some solutions for all the complications thrown our way in 2019.

Praises:

• We're all still here and in one piece! 👏
• 2019 brought us some new doctors and team members that are just amazing... Our GI doctor is definitely who we talk to the most and we met him in Jan 2019 thankfully! He has been such a great new addition to helping us with all that we have going on with Eli.
• Day nurses fully staffed so that MorMor and random babysitters don't have to watch Eli anymore... and Eric and I can continue to try to work!
• Our amazing family and friends who continually go above and beyond to help us... you've kept us sane, fed, laughing, and loved - thank you!

Prayers:

• Less hospital stays in 2020... figuring out solutions to the line issues
• More sleep... more night nurses!

"Behold, the hour is coming, indeed it has come, when you will be scattered, each to his own home, and will leave me alone. Yet I am not alone, for the Father is with me. I have said these things to you, that in me you may have peace. In the world you WILL have tribulation. But take heart; I have overcome the world.”  -John 16:33 ESV


If you'd like to support Team Eli/ my marathon journey... please donate here: https://mda.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=30938

the best family photo captured... how we felt about 2019, lots of highs and lows!