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!