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!

Living in the hospital in 2019...

February 2019

As mentioned... Eli looked awful prior to coming in the hospital this time around, but in a different way. The week before he started showing some signs of increased congestion - we thought he had a cold starting... He also had some increased irritability - so we increased some of his new pain medications... But ultimately on Sunday 2/3 (Super Bowl Sunday), Eric and I were looking at each other knowing that we'd be back in the ER soon. On 2/3 he vomited stomach acid and had been refluxing/ heaving a few times - things he had not done since October. He also spiked a fever that fluctuated a little with Tylenol, but stayed consistently in the 100-101 range. Fever was the number one warning sign we were told to look for with an infection from a PICC line - the biggest downside of a PICC line. So again... We called all our people for Eli, and the general consensus was that this could just be a common cold and to wait it out a little more. Eli in the evening of 2/3 vomited his medications (never a good sign), he slept until about midnight... but then was up heaving the rest of the night. He vomited all morning medications within minutes of giving them, so not long after... Eric was on his way to the ER with Eli. Because of his fever, risk for infection, and not really being sure of what was going on (thinking an infection at this point)... Eli went from ER to PICU! It has been 2 years since was in the PICU... typically he just goes to the regular Pediatric floor.

ER waiting

ice packs

Once in the PICU they were really working on getting his fever down and getting him comfortable. His fever got up to a 104, so they had him in just a diaper with ice packs on. He was still heaving and vomiting. Since the biggest thought was infection based on his symptoms, they started treating him with antibiotics and Eric met with the Infectious Disease (ID) doctor that day. On 2/4 he started on 3 different antibiotics: one to treat if infection was coming from PICC line, one to treat for pneumonia because they saw a little fluid in his lungs on x-ray, and one in case it is something gut related. In the PICU he was on high-flow oxygen, trying to make him as comfortable as possible. By Monday night 2/4 he also was given an IV anti-nausea medication, which helped and he stopped vomiting. The next few days were waiting... Both viral and bacterial tests take 24-48 hours to show anything. Sometimes they show sooner, but to get a real negative, it has to be 48 hours.

high flow oxygen

puffy eyes

By Wednesday 2/6 his viral tests came back negative and his bacterial test was coming back positive for a common skin cell bacteria that got in through his PICC line likely. We were reassured that this is very common, nothing we did wrong while taking care of the PICC line, and one of the downfalls of the PICC. We were transferred from PICU to Peds floor, and also went down from 3 antibiotics to 1. Since ID doctors were pretty confident that the infection was coming from his PICC line, they were able to stop the ones for gut and pneumonia. The next few days were waiting to learn more about the infection, find the specific antibiotic he needs, and hopefully not pull his PICC line. We were warned that this particular bacteria (staph hominis - normal skin cells not harmful on the skin but really bad when in the bloodstream) are pesky and like to stick to PICC lines. Wednesday he got his first dose of lasix... They had really been overloading him with fluids to help fight infection, so he looked SO puffy and swollen. He couldn't really open his eyes... Lasix makes him pee out all the extra fluids :)

On Thursday 2/7 we were still getting blood culture tests back positive for infection, but by Thursday afternoon his blood culture helped ID doctors identify the best antibiotic for his infection. So we were able to get him off a broader antibiotic and on one more specific - oxacillon. On Thursday I also began to talk to our GI doctor at the hospital and our new GI doctor about the plan for likely taking out his PICC line, how we begin to feed him then, and any other ideas for cause of his GI discomfort, output, and vomiting. The plan was to start trialing formula in his Jtube tube today (lately we had been working on increasing the rate of pedialyte we were doing in the Jtube, but hadn't put formula through his J in a month). So around 9:30pm Thursday 2/7 he started half strength formula (half formula and half Pedialyte) at a rate of 5 - SO SLOW. To give perspective, back in beginning of December he was doing a rate of 31 and doing mostly formula... So this was a safe plan to start at, yet he didn't tolerate it. He slept from 10-10:30pm, and then was up the rest of the night whining and crying... And that was just the beginning of the spiral downward. Friday 2/8 he stayed awake all day and went through cycles of calm, crying, and laughing. They tried a new formula that was easier to digest and tried morphine for pain. Nothing worked. He whined all night Friday night and now hadn't really slept in days... So Saturday afternoon 2/9 they stopped the formula feeds through the Jtube and switched it back to straight Pedialyte. Pretty instant difference in Eli after he took a comfortable nap in the afternoon... Still lots of on and off fussiness, but slept a little better Saturday night than Friday night. Sunday 2/10 - blood cultures still positive for infection, so at 10pm Eli's PICC line was pulled at his bedside (no anesthesia needed). The ID team was hopeful with the PICC line gone that they'd be better able to stop the infection. Because we were only doing Pedialyte by Jtube... he needed more nutrition and access, so he got a peripheral IV in his hand.

 facetiming Ava is always an adventure

puffy hand

Monday 2/11 showed that the blood drawn from his PICC line yesterday was positive, but drawn from blood draws was negative... Step in the right direction. He had an OK day, some fussiness.. And basically went to bed for the night at 3:30pm - not our normal Eli (red flag). Monday night he started TPN in his peripheral IV for nutrition... and by Tuesday mid morning his IV blew. TPN in peripheral IVs is harsh on the veins, and Eli has really hard to stick and small veins in general... So it was not surprising when it blew, but not good. A symptom of TPN in the system is swelling, so Eli had a huge hand Tuesday that didn't go away for a while. It took all afternoon for nurses and doctors to get a new IV in - poor guy was stuck a ton of times... nurse tried, PICU tried, NICU tried, and ultimately an anesthesiologist had to do it by getting a deeper IV in by ultrasound. Eli had some spit-ups Tuesday morning (red flag 2) - and then again sleeping most of the afternoon & evening. Tuesday he also had his second negative in a row for his blood cultures for the infection = 2 days negative are enough to say infection is gone. He would continue antibiotics 7 days from the pull of the PICC line. We began talking and scheduling anesthesia to put a new PICC line back in.

Tuesday - Friday (2/12-2/15) were pretty stressful days for us due to communication and fighting for what we felt is best for Eli, and Eli taking a turn for the worse. Ultimately, deep down in our gut we have always thought/ wondered if something bigger is going on in his GI system to cause him so much pain and difficulty to digest feeds. So if Eli has to be put under for putting in the new PICC line, we were hoping to get some GI testing done as well, while the hospital team was recommending his brain MRI (something we do want done, but not our priority). All of these discussions continued during the week here and there, but got put on the back-burner when Eli took a turn for the worse on Wednesday 2/13. He looked pale all day, slept all day, lots of heaving, higher outputs in his Farrell bag, and was running warmer for his body temperatures. By early evening he did spike a higher fever, so the next 2 hours were a whirlwind. Lots of blood tests and the PICU team was in and out of our room evaluating. The PICU team felt we were stable enough to stay on the Peds floor, but a doctor on the Peds floor (that we love) pushed to get us back to PICU to have him more closely watched since we didn't know what was going on... Fever returning is a sign that infection could be back. Luckily that was his only fever, but he spent Valentine's Day mostly asleep and looking very puffy again. He had another IV blow Thursday morning, so he was on his third peripheral IV in 4 days. We really needed to get a PICC line back in him to feed him and have a better access for blood draws. So he was scheduled for a PICC line Friday, but whether any other tests would be done after was still up in the air... Friday morning threw us another surprise - Eli starting outputting blood in his Farrell bag (from his stomach)... So now we were also dealing with a gut bleed.

matching from afar

Ultimately all the miscommunication led to a care conference on Friday 2/15 where all of Eli's specialists, nurse, hospitalist, and care managers could be in one room together to hash out where do we go from here for Eli... We came up with some GI tests to do to help us rule out GI pain, he will do a brain MRI to check on disease progression, and then we'll all reconvene again to discuss results. After a very stressful week this felt like a success to have a plan. On Friday he only put in his PICC line because it requires minimal anesthesia, while the GI testing we want to do requires stronger anesthesia with intubation (something he can't do while he was in this fragile state). After his PICC line, he started his first ever blood transfusion. His hemoglobin had been low since Wednesday and he had been sleeping a lot... Both the infection and the amount of blood draws he has had are the cause for low hemoglobin. The transfusion definitely helped wake him up for a little bit Friday evening. After blood, he got another dose of lasix because he was still really puffy from IVs blowing, extra fluids, and then getting a lot of blood.

1st blood transfusion

Saturday we found out Eli was still negative for blood cultures (no bacterial infection back) and he was negative for viral tests. So back to the Peds floor he went. He did have low potassium levels, likely due to the lasix... But something to watch for. Another trend for the weekend was high blood pressure readings. His blood pressure had been on the higher end of normal a lot of his hospital stay this time (typical with infection), but as of the weekend he has been getting consistent high blood pressure readings. He was pretty out of it this weekend and with all the symptoms going on that were all over the place, the pediatrician on for the weekend (another one we really like) recommended a CT scan. The results came back normal. So the weekend & so far this week, it is a delicate dance of lasix and making him pee out the 3 extra pounds of fluid he has gained recently, but also watching his potassium and protein levels. Monday he did a kidney ultrasound (since potassium and blood pressure can be linked to kidney functioning) and a small bowel follow through. Both tests did not have any concerning or new findings.

As of Tuesday 2/19 Eli was more alert and awake than he has been in a week. Getting fluid out of him will help his blood vessels work less, which will over all make him less tired. Tuesday and Wednesday are days of rest for him... really working on getting fluid off of him and hoping to get blood pressure down. Big test day is Thursday 2/21... He will be intubated with anesthesia for GI upper and lower scopes and brain MRI. Once these tests are done, the plan is to re-meet in a care conference fashion to talk about results and planning for Eli's pain and feeds.

To say this hospital stay has been stressful is an understatement. Mostly because we are dealing with new things, and because we were just here for 2 weeks in January! Eli has never had to go back to the PICU after leaving the PICU... He's never had a bacterial infection before... Never had a blood transfusion... etc. This has officially become our longest stay in the hospital ever. We have been in the hospital more in 2019 than we have been home. Poor sensitive Ava doesn't understand it all and just really misses her family. At this point we have asked the doctors to find us an apartment to live in at the hospital so we don't have to sleep on couches and keep going back and forth from our house :)

Praises!

• Got rid of the infection! And an easy anesthesia to put a new PICC line in!
• Lots of people at the hospital who know and love Eli... and are willing to help us fight for what's best for him
• Lots of help with Ava again... sleepovers with her besties, her in-home daycare that she loves, MIL driving up, sister & sister-in-law flying in to help, etc!
• Lots more food, gift cards, flowers, and more... always puts a smile on our face!
• A continued understanding from work... so many people willing to help fill in for me while I'm away and helping make this as easy as possible to be with Eli at the hospital
• Continued help at the hospital with Eli when possible... his nurse, babysitter, and family sitting with him so he's never alone and I can go to work some days

Prayers:

• Lower blood pressure
• Tests on Thursday show us something... So that we have a better direction for pain management and feeding him. The thought right now is that they probably won't show us anything - and we will still plan if they don't! - but if they show us something, it's easier to plan to resolve issues found.
• A conducive, proactive care conference in the near future that allows us to all feel on the same page for Eli's best interest
• Being a family of 4 at home again soon...

My Soul Thirsts For You

“O God, you are my God; earnestly I seek you; my soul thirsts for you; my flesh faints for you, as in a dry and weary land where there is no water. So I have looked upon you in the sanctuary, beholding your power and glory. Because your steadfast love is better than life, my lips will praise you. So I will bless you as long as I live; in your name I will lift up my hands. My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy. My soul clings to you; your right hand upholds me. But those who seek to destroy my life shall go down into the depths of the earth; they shall be given over to the power of the sword; they shall be a portion for jackals. But the king shall rejoice in God; all who swear by him shall exult, for the mouths of liars will be stopped.”

‭‭Psalms‬ ‭63‬ ‭ESV‬‬