Fall 2018: trying to grow!

Once we left the hospital in August, we faced (and are still facing) many challenges with Eli's health in the midst of a busy season with lots of changes. Unfortunately looking back, it is safe to say this has been the most challenging 6 months of Eli's short little life.

We got back home from the hospital on 8/11/18 and I went back to work on 8/13/18... Which means Eli was left in the care of our nannies while he was in a new & fragile state after his GJ surgery... He was still vomiting and he was now getting fed solely through his J tube. Tough week going back to work, but it was helpful to have 2 sets of hands... We actually had our old nanny training our new nanny that first week of me back to work, which gave me a little peace of mind. A lot of August and September was trialing formulas and increasing medication for Eli to make him comfortable. We went through 3 formulas to find one that didn't make Eli really gassy and had to increase some medication to help his reflux and pain. Even though Elijah is completely fed by his Jtube (in his intestines), he still was refluxing and vomiting his meds (which go in his Gtube/ stomach) and/ or his stomach acid. Made for a very uncomfortable and unhappy Eli - not our normal boy. Ultimately once we increased his reflux medication in September - we were able to get him to stop vomiting/ spitting up! And by the end of September we found a formula that made him the less gassy...

August and September were full of marathon training for me and lots of work for Eric! However, we were really thankful to find out in September that Eli's nursing hours increased from about 30 hours a week (that we were using for night nurses only) to about 80 hours a week! We applied for an increase after his August hospitalization and all the changes he had - being attached to 2 cords 24/7 and needing oxygen at night has made him a little more complicated to look after. It took a while to find some more nurses to be able to cover these 80 hours... because ultimately we realized what would be best for our family was to have Eli be watched by a nurse during the day while we were at work and then to send Ava to an in-home daycare! After several weeks, we found a day-time nurse and were able to start this plan. One of the best decisions we've ever made!! I feel so much better having Eli watched by nurses (we've been blessed with some really good ones too!), especially during this really complicated time in Eli's life. It has also been the best decision for our social butterfly Ava, who loves to go to daycare every day and see her 3 new boy besties.

The month of October is a little bit of an amazing blur... Obviously the biggest thing for us was the marathon. It truly doesn't feel real. It was an amazing weekend with so many surprises, accomplishments, and Eli support. The weekend started with the marathon expo where it was fun to begin seeing all the awesome Team Eli members who were coming in to town for the marathon. Saturday we had the Team Momentum dinner where Team Eli was awarded the #1 fundraising team (~$78,000), I was awarded the top fundraiser (~$18,000), Team Eli was the biggest team ever created, and Hanna (my sister) surprised me and was the keynote speaker... A hard secret she had to keep! Hanna told a room full of hundreds of people Eli's story, our story. Many happy tears were cried. Sunday: the big day... We didn't have ideal weather - we all got poured on for a few miles... Yet everyone who started the marathon finished that day. Hanna, Meghan (my sister-in-law), and I all ran the ENTIRE marathon side by side and finished under 4 hours... our goal, however, with the rain and dodging in and out of people the whole race, we ended up running a lot faster than we all trained and a whole extra mile. After the race we had a Team Eli after party of relaxing and eating... And to top it off, Eli had a great weekend that whole weekend. He loved soaking in all the people and even had to be taken out of the team dinner multiple times because he was laughing and yelling too loudly. :) Once the marathon passed, Team P all battled illnesses the rest of October. We had stomach bugs, fevers, and colds. Eli and Ava were also both teething - both breaking in molars! Once the marathon passed, we were hoping for relaxing family time... but took a while for us all to get over sicknesses!

By the end of October we began to worry about Eli's nutrition, progress, and weight loss. When we left the hospital in August his Jtube feeds were 50% formula & 50% pedialyte. The goal when leaving was to continue increasing formula and decreasing pedialyte to get him to his full strength feeds and hope that he will grow/ gain weight back after loosing weight since July... Typically getting to full strength feeds takes a week or 2, not 3 months. Since August, September, and October threw us many challenges with increasing his formula (continued vomiting, changing formulas, sickness, and teething) - we weren't giving up on getting to full strength feeds yet... But starting to worry about the amount of weight he had lost and the lack of progress we were making on his feeds.

The month of November was a lot of getting healthy, and trying to continue to increase his formula in his Jtube! In November he did get some awesome new equipment from Early Intervention - a stander and a new bath seat! He loves his bath seat... But still getting used to all the muscles it takes to use his stander... In November we also started the process to get fitted for AFOs and getting him plugged in to a mobility clinic to get fitted for a custom wheelchair! All big things to start getting the big boy ready for turning 3 in March and heading to... wait for it... SCHOOL!

Praises!

• TEAM ELI! The amount of runners, donators, and supporters we had was UNBELIEVABLE. Only could have all been orchestrated by God!
• New equipment and a great team getting us ready for school!
• Lots of family time and support through a long season.

Prayers:

• Weight gain through Jtube
• Managing gas & BM pain

Colossians 1:9-14 "And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him: bearing fruit in every good work and increasing in the knowledge of God; being strengthened with all power, according to his glorious might, for all endurance and patience with joy; giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light. He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins."

We did get to take a trip to MN for Labor Day weekend and took the kids to the state fair. Eli enjoyed sleeping by the pool more! :)

In September we also had some family Fall fun!

Halloween 2018: Peter Pan & Tinkerbell (& Wendy & Hook)

In November, Eric and I got to do a weekend "away" in the city for Eric's birthday!

Thanksgiving 2018 in Sherman!

GJ Tube!

As mentioned, on 7/30 Eli could keep nothing down - not even pedialyte. So as soon as we got confirmation from our pediatrician, Eli and I headed to the ER. Our ER stay was longer than normal... lots of waiting. Took about an hour or more to get an IV in (after 3 attempts) because he was so dehydrated and his veins were very hard to stick (and he's normally a hard stick). We did some general x-rays of his lungs & gut in the ER to make sure there was no big obstructions - they showed nothing. And then after a lot of waiting, we were checked in to our room on the general Peds floor around 2:30am. Eli was so exhausted and dehydrated that he slept through everything but the IV sticks the whole night.

Tuesday morning Eli continued heaving even on an empty stomach, and actually began vomiting brown liquid - which we later learned was old blood. He continued to vomit blood through Wednesday... So we began to worry that with all the vomiting that he has now injured something inside his GI tract. The first thing we did Tuesday was an Upper GI x-ray with contrast - this is what we were supposed to do outpatient on Wednesday (8/1). The only finding of this study was that Eli has slow motility or gastric emptying issues... While this is technically a "new finding" because we've never done this study before, this is not actually new to us... This is something we've always known about him. He has a hard time digesting his food and he was actually on a medication to help him empty his stomach for a year that eventually stopped working for him. The rest of the day was talking to lots of his specialist doctors and we began discussing the GJtube surgery. All of our specialist were in agreement that this seemed to be the next best step for him because we were not finding anything "wrong" with Eli to cause all the vomiting... It's just seeming like his gastric emptying issue has gotten worse and we need to try to feed him in another way. His Gtube is a port that goes directly in to his stomach and we are keeping this port available to put his medications in. The Jtube is in the same port as his Gtube, but it is a continuation of Gtube down in to his small intestine. So his feeds now go in to his Jtube and we bypass the stomach so he is not vomiting his feeds. Most of the day Tuesday Eli slept... Exhausted boy and dehydrated. At night there was lots of whining/ whimpering, but still slept a lot.

Wednesday was a lot of waiting. No tests done today... On Tuesday the GI department decided we needed to do a full scope down Eli's throat and into his gut to see where bleeding was coming from and if there is anything else going on that x-rays can't show us. The scope requires anesthesia and some coordination with scheduling, so it wasn't until Thursday. Wednesday we had to do some pain management with Eli and more talking to doctors about the GJtube. By the end of the day we decided to not wait for the scope results and to just do the Jtube surgery. Since Eli was already going to be put to sleep for the scope, we wanted to just get the Jtube done and not have to put him to sleep again in a day or two. On Wednesday our nurse thought of a great idea to stop the vomiting- attaching a farrell bag to his Gtube to empty his stomach. We've used these bags before at home, but not hanging below him to empty his stomach. As soon as we attached it, the bag filled with brown liquid and Eli felt immediate relief. We are continuing to use the farrell bag today to help him manage his stomach output.

Thursday was a big day! Eli started the day with a stomach ultrasound - the GI doctors just trying to check everything off the list for a cause of the vomiting. Then in the afternoon he was put to sleep for a scope and to place his GJtube. The scope didn't show us anything new - just that the same gastric emptying issue. Everything went really well with the surgery and Eli slept until about 1am post surgery. When he woke up - he was happy! Not in pain it seemed.

Check out that G & J access!

Friday mid-morning we were able to begin trialing feeds in his Jtube. He hadn't had anything other than an IV since Monday evening! This kid needed to eat. We started with pedialyte at a slow rate and continued to increase his rate. A difference with his Jtube from what we are used to is that Eli will now be on continuous feeds - always hooked up to his feeding pump. Because our intestines don't have a basin to hold a feed, we have to go very slowly with putting nutrition in to it... So this will be something new for us to get used to. By Friday afternoon Eli was very fussy and uncomfortable. It was very hard to tell what was wrong. He ended up going to sleep for the night around 3:30pm.



Saturday and Sunday he continued to seem in pain. We continued to trial with his feeds and he got up to 50% pedialyte and 50% formula at his goal rate. But he was just a cranky guy all weekend - Eric and the nurses were trying everything they could think of to make him comfortable, and pain medication really wasn't working. We weren't worried about the Jtube at this point because he wasn't outputing from his stomach anything formula colored, but they did an x-ray to check the placement of his Jtube just to be sure. X-ray looked good for his Jtube, but it did show a lot of gas and BMs that needed to pass. Most likely this was the issue... And they were right. After Eric got a large burp & fart out of Eli on Sunday- he was happier :)

Monday morning Eli was back to his normal, crazy self! He was smiling... kicking... talking. Then around 11am we increased his formula to 75% and pedialyte to only 25% to continue to try to get him to full feeds. At about 12pm he started getting really fussy and I needed to leave to go to a care team meeting. The goal was to get all of our specialists together and on the same page, but unfortunately our pulmonologist and GI doctors could not be there... And they are the 2 that often have differing opinions about his reflux and care. Nonetheless, it was wonderful to have the pediatrician, our palliative care doctor, and Dr. Coates (neurologist) on the phone to discuss Eli and his worsening GI condition. We were hopeful we could continue what we were doing and talk discharge soon. We did a routine EEG on Monday to just follow up from a year ago... Everything looked OK and similar to how they have been. The increase in formula seemed that it was not going as well as planned. Eli began to put more stomach acid out in to his farrell bag and he was cranky and beginning to get exhausted again. Monday-Wednesday Eli was just kind of out of it.


By Wednesday we were worried about dehydration again - he had little wet diapers since Monday and no BMs. So we needed to make some drastic changes. First thing we did was add 10ml of water per hour... which doesn't sound like much, but that's an extra 240ml of fluid in a day- big change for Eli. We also hung Eli's farrell bag above his head - how it is typically used. The point of the farrell bag is to relieve pressure from the stomach of gas or contents and then put the contents back in to the stomach. We had been just emptying Eli's stomach (just stomach acid - the blood stopped on Thursday) for the past week and not putting it back in... He had been outputting 200-300ml of fluid, but Monday - Wednesday he was outputting 300-400mls. (This is a sign that he is not tolerating the increase in the formula.) So we went back down to 50/50 formula pedialyte, added extra water, and hung his farrell bag above his head to get that liquid back in him. Everyone felt like this was a really good plan and we were talking discharge for Thursday (8/9) as long as all of this went well... Well it didn't :( Adding 240ml water and 300-400ml of stomach acid back in to Eli was too big of a change. He vomited in the afternoon a couple times, in the evening a couple times, at night a few times, and then every hour of the night. By the 4am hour the nurse and I just put the farrell bag back on the floor below Eli to drain his stomach again. This help and we both got a couple hours of sleep.


Thursday the team all agreed we tried to much and we went back to keeping the bag on the floor and just adding some water to his routine... Eli did great with this Thursday (8/9) and Friday (8/10). No vomits either day. Friday Eli was back to his normal self all day! It was wonderful to see and the best I had seen him in a month. He was active, alert, and smiling. The only thing keeping us in the hospital now is making sure Eli is hydrated before we go home. The doctors all agree that we can work on increasing his calories and work on phasing out the farrell bag at home. So Saturday morning (8/11) we did a blood draw to check his electrolytes and hydration, and it looked good!!! WE ARE OUTTA HERE! It will be a long battle at home to get back to his new normal, but at least we will be home... We know that Eli will recover faster there.

New things from this hospital stay:

His Jtube and doing continuous feeds. Oxygen... Eli had some dips in his oxygen while sleeping some nights and some during one day when he was stuffy. We will now have an O2 monitor at home and an oxygen tank for when he needs a little boost. Atrovent - another breathing treatment (works and looks like albuterol) when needed to help open airways.

Praises:

• Getting our happy boy back!
• Our village... we have AMAZING family & friends who helped take care of us in the hospital and Ava at home. Ava was very spoiled with lots of fun 1-on-1 time.
• Rhodes School being so supportive of Eli and allowing me to miss my first day back to work!
• Awesome pediatricians and rounds teams at the hospital who listened to us every step of the way.
• Amazing nurses - we love our nurses! Never enough love for them.

Prayers:

• Getting used to life on a Jtube and continuous feeds, getting to full strength feeds, staying hydrated, and back to gaining weight
• Eli learning how to digest his stomach acid again so we can slowly get off the farrell bag
• Eli's breathing - only to need minimal use of his home oxygen if at all
• Our family time... it's been very difficult to be apart for almost 2 weeks and now Britta rushes in to the start of the school year
• New nanny starting - transition from old nanny to new one goes well

“Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light."”

‭‭Matthew‬ ‭11:28-30‬ ‭ESV‬‬

July

July hit and summer was officially here! The first weeks of July were HOT... and we learned quickly that this didn't help Eli's worsening situation. The little boy that loves to be outside was overheating too quickly in this heat and vomiting easily. Typically bringing him outside can calm him down if fussy, but in the first few weeks of July it seemed like any time it was really hot and we brought him outside, he would vomit within minutes. Unfortunately he had to miss some of our normal 4th of July activities (like being at the lake house) because of the heat. Luckily July 6th was cooler and he could spend a day at the lake then! He enjoyed floating on the lake and almost fell asleep with the constant little waves. :)

ice cubes on at 3rd of July fest

On July 10th, Eli was invited to the first ever Neuro-Muscular Clinic at Lutheran General. Typically we have been going to our clinic days at Christ Hospital, which is about an hour away from our house and where only his neurologist practices... The rest of his specialists are through Lutheran General. We really, really value our neurologist - he has been wonderful to us! - so we've commuted to his clinic to check in with him... However, this new clinic at Lutheran General is bringing our neurologist, Dr. Coates, up to help run the clinic! HUGE win, win for us... We now get to be seen in clinic at the hospital that does all of Eli's care, with Eli's normal specialists, AND we get to continue working with the neurologist we love. This clinic on July 10th was great after a long month and a half... We left with some immediate changes and things to follow-up on.

1. Our pulmonologist reviewed Eli's sleep study... And long story short we needed to follow up with our ENT to make sure Eli's tonsils were not too large. There was possible talks of removing those and seeing if that help with his reflux/ vomiting and sleep apnea. We also began talking about the possibility of needing oxygen and monitoring at night... Not there yet, but wanting to see what our ENT said first, but will need to keep an eye on this.
2. We met with our neurologist, which is always great to check in with him! He really cares about Eli as a whole. He wants to know about his day-to-day life, his advances in therapy, issues in other areas of his life not relating to neurology, etc. We haven't done an EEG in a year, so we talked about doing one soon to just do a check-in. {fun side note... Dr. Coates' office loves that Eli wears bow ties, so anytime we take a picture of Eli in a bowtie... it has to get emailed to Dr. Coates so they can print it out and hang in their office!}
3. We added palliative care doctors to our team! Who knew these amazing people existed?! They're like social workers with a medical degree that can prescribe drugs :) They added 2 new medications to our routine that drastically helped Eli right away... 1 med was for bowel movements (BMs) - saw improvement immediately. Other med is for pain management... Something we learned is that children with Neuro-Muscular diseases can have extremely sensitive nerves in their gut... So when Eli has all this gas & issues with BMs - he basically turns in to a collicky baby, which is exactly what we had been seeing. This new medication for calming his nerves worked instantly and we started to get our happy boy back.
4. We had a quick check in with OT, PT, and Speech (because I had to get to work!)... And it was fun to talk to Speech a little about starting to give Eli more oral stimulation and tastes of food for fun!

Therapies for Eli in June were really difficult... Because of his discomfort and increased fussiness, it was hard for many of our therapists to get a good, full session in with him for anything. Also with his fussiness, his schedule was all over the place and he was at times napping during his therapy times! (Hard to do vision therapy with your eyes closed 😔) In July this began to turn for the better! As we started to get our happier guy back, he was able to participate more in his therapies again. We began to try some really cool new tools in his vision, speech, and developmental therapies. Eli began playing around with communication buttons that use language, vision, and play all together. How they work is I can pre-record a word or short phrase so that when Eli pushes the button it will say what I have recorded. We then also began to use these buttons with his adaptive switch toys! So a favorite for Eli became to push his button, which said "toy on," and it would make his toy go all at once. He definitely had a lot of fun "talking to us" through these buttons and playing! Looking forward to continue to use them.

working hard in PT

Post clinic, the 2 new meds really made a difference for Eli with his BMs and fussiness. We were getting our happy guy back, but the vomiting never decreased... We were still at least having 1 vomit a day. Then July 16th hit (the week we were going to Nashville), and Eli decided to increase his vomiting. He vomited his morning meds before we even started a feed, and then vomited a few more times during his first feed, vomited again in the afternoon & evening... And this new trend stuck around until we went to the hospital unfortunately. It seemed that Eli was worst in the morning and evening for these 2 weeks where we'd often get 3-4 vomits in the morning and 3-4 vomits in the evening. Thankfully on our trip to Nashville we had my parents with us helping out with the kids and watching them when we had Gabe's wedding festivities. Despite all the vomiting, we tried to make the best of our trip! We enjoyed the Grand Ole Opry & a backstage tour, lots of food, walking around downtown, and hanging in Franklin for a day.

When we got back from Nashville, Eli had a couple good days... Seemed to be happy to back in his home and back on his normal routine, but after 2 blissful days he went back to lots of vomiting in the morning and evening. We saw our ENT on 7/27 and he didn't have a lot of concern for Eli's tonsils. He wanted to look at the sleep study in more detail and get back to me, but he didn't believe we needed to take out his tonsils. So we're back to wondering why and where all this vomiting is coming from. We tried to enjoy the weekend with friends and family for Ava's 1st birthday party. We didn't give Eli near his normal feeds to try to prevent some vomiting, and he was just kind of out of it for the weekend and not his normal happy self. By Monday morning (7/30), I was on and off the phone with our GI doctor's nurse... All this vomiting has just not been right and we have to figure out something else to do. Eli has tried lots of diet changes, lots of things to help with BMs, and is maxed out on his reflux medication. The idea from GI was to do an upper GI x-ray for Wednesday and then see our GI doctor Thursday... Also emailing with our nutritionists all day on 7/30 (who are luckily so great at responding to me and care so much about Eli!), they began to get me worried for dehydration. So... we were in touch with the pediatrician this day too. Unfortunately by evening, Eli wasn't even keeping Pedialyte down on a slow rate... So we made the dreaded call to the on-call pediatrician, because we already knew we were going to have to take him in...

Super exhausted boy from all the vomiting... 

Praises:

• new clinic at Lutheran General we get to be apart of!
• new palliative care doctors on his team - trying to make sure he can have the best life he can
• fun celebration with little sister for her 1st birthday
• supportive grandparents!
• a career with summers off so I can be here for Eli with all of this

Prayers:

• source and reason for the vomiting so we can help stop it
• comfort for sweet Eli
• answers in our hospital stay

Not For A Moment - Meredith Andrews

You were reaching through the storm
Walking on the water
Even when I could not see
In the middle of it all
When I thought You were a thousand miles away
Not for a moment did You forsake me
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me

You were singing in the dark
Whispering Your promise
Even when I could not hear
I was held in Your arms
Carried for a thousand miles to show
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me

And every step every breath you are there
Every tear every cry every prayer
In my hurt at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me
After all

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me
Not for a moment will You forsake me