Pain Management

December 2018

besties Christmas sleepover 2018

bringing Christmas cheer to the ER

We started December on an OK note! We were really close to full strength feeds on 2 out of his 3 feeds for the day… We were still struggling with some gas & BM pain, but feeling more hopeful to be getting close to full strength feeds. But after the first week of December, Eli started to get increasingly uncomfortable. Then, some of his medications began leaking and ultimately on the night of 12/11/18 our night nurse couldn’t get his feeds to go through the Jtube. On my way to work I was on the phone with our Journey Cares team and leaving a message for our GI doctor… then when I got there, I basically turned right around to take Eli to the ER because everything the nurses and doctors heard made it sound like Eli’s Jtube was clogged. Not long after being in the ER, this was confirmed. We did a lot of x-rays, nose swabs, labs, and ultimately a contrast test which puts dye through his G & J tubes to see if they can see any clogs. Right away it showed a twist in the line near his Gtube and a complete clog at the end of his Jtube... We waited around in the ER for a few hours while they coordinated with surgery to be able to take out his GJtube and replace it. Unfortunately when we got to surgery prep, we found out his size GJtube was out of stock... a problem at the time we didn't realize how big would be for us later! After surgery, we found out the tubing they had to put in was much shorter than his original tubing... The sign or symptom we were told to look for was for increased reflux incase the formula more easily came back up from his intestines in to his stomach. Anesthesia is never fun for Eli to wake up from and especially when he does these surgeries because they have to fill his stomach with air, and his own gassy tummy is already painful enough for him.

The rest of December was so busy getting ready for Christmas and for Florida. Our very spoiled children had a Christmas celebration of some sorts every weekend in December! One very cool opportunity we had was a special needs Christmas party through Eli's Journey Cares program. It was awesome to be around other families that had the same equipment, seats, and challenges as we do! And at this party, we got our family picture with Santa [above] :) Ava was skeptical of Santa, but really liked Mrs. Claus. (Santa & Mrs. Claus are the chaplain at Journey Cares and his wife!)

We ended 2018 in Florida... On a family vacation with my family! It was wonderful to be in warm weather and have lots of help. Unfortunately right after arriving... Eli had a few days with no bowel movements and was in a lot of pain... Some of what we've gotten used to, but also more extreme than usual. Once we got him more regular in the beginning of the trip, he still had on and off periods of extreme pain - scream crying. He slept in our arms most nights of the trip, needed lots of rocking/ bouncing, and needed a heating pad on his tummy a lot of the time. The day we were flying home (1/4/19), Eli & Ava both caught the cold that everyone was passing around in the family. Eli spiked a fever, slept a lot, and looked awful... We were thankful to be home, but really worried about him.

January 2019

We were home for one day from Florida (1/5/19) and got to unpack, do some laundry, and put away our Christmas decorations. Thankfully Eli actually had a more comfortable day and no fever. However, at night he turned for the worse. He took a long time to go to sleep (lots of crying) and was up scream crying from 3-6am (with nothing working to help him - we tried all our tricks!) and eventually passed out from crying so much from 6-8am. I was on the phone in the middle of the night with Journey Cares & our pediatrician trying to figure out what was going on and what to do. We never obviously want to go to the ER, but usually end up there... We were REALLY hoping this time around it was just an ear infection or something - maybe one time we'll catch that break right?! So we tried to go to the pediatrician's office first, but when they quickly found nothing... I took Eli straight to the ER (already had our bags packed in the car - we know this journey all too well!). Upon arriving, they do all their normal workup they do with Eli... nose swabs, blood tests, x-rays & ultrasounds. Based on what I was describing... The ER doctor had a suspicion of Intussusception - and this was confirmed with a quick contrast test. Intussusception is at type of bowel obstruction.

So from the ER to surgery to the regular Peds floor we went... He had to have surgery because his Intussusception was around the end of his Jtube, so it had to come out. And likely, the cause of the Intussusception was that the Jtube put in back in December was too short/not his correct size. We were told that Intussusception is VERY painful, so poor Eli's pain for the last week or two was real pain... And explains why nothing was working to help. He's such a trooper. Once we settled in our Peds floor room, we knew we'd at least be there for the week because Intussusception requires 3 days of gut rest. Once it healed, we were hopeful to put in a new GJtube and get back to 2019 life at home...

missing each other so much

During the few days of rest, we were hoping to talk to some doctors (GI, palliative, and other specialists) about what to do with all the GI pain Eli had been experiencing lately, his weight loss, and not tolerating Jtube feeds. So, a care conference was scheduled for 1/11/19 to discuss several of our concerns... Eli was scheduled for surgery to put his GJtube put in on 1/10/19 (after 3 days of rest); however, that got cancelled when we found out the hospital was still out of stock of the right size GJtube... And we weren't going to put in the incorrect size again! Surgery was rescheduled for 1/11/19 and we were told his GJtube size was being overnighted... But the morning of 1/11/19 we found out that the correct size GJtube was still not in - so the care conference topic turned in to: "what do we do now?!" The team came up with a couple other ways to feed him, but those were ultimately out of stock as well... So after our care conference, Eli went into anesthesia to get his first PICC line (basically a permanent IV line that leads directly to the heart and can be used for nutrition or medicine). This is something we had already been looking into as an option to help him gain weight. Surgery went well and the weekend ahead was a weekend of rest waiting for the GJtube surgery for Monday (1/14/19)...

PICC line!

Because I've wondered what it would be like to start feeding Eli again in his gut and because he had had such a long gut rest, I asked if we could start doing some formula by Gtube while we waited for his GJtube. So the weekend 1/12 & 1/13... Eli was getting full nutrition through his PICC line and we were trial-ing half-strength formula in his Gtube (his stomach - the only access we had in his gut at this time)... and he had a GREAT weekend! Monday 1/14 we found out the GJtube was still not in stock and higher-up people at the hospital had to get involved to get the correct size GJtube in on Tuesday 1/15/19... And he had his 3rd round of anesthesia in 9 days (to take out old GJ, put in the PICC line, and now put in a new GJ). This surgery went well and we talked discharge for Wednesday 1/16/19... But Wednesday took a bad turn. Eli had seizures all morning and lots of scream crying. Our neurologist chimed in to say that the amount of anesthesia Eli had definitely lowered his seizure threshold and so we decided to increase his Keppra a little. Wednesday he had an EEG and some ultrasounds to check his brain and stomach. The EEG showed some irritated areas that were likely for seizure activity... So we talked discharge for Thursday 1/17. BUT there seems to never be a dull moment... Because we were supposed to be discharged on Wednesday 1/16, there was no TPN (his full nutrition through his PICC line) ordered for Eli to change to at 9pm Wednesday night when it needed to be changed. TPN is a complicated order and not something that the hospital is able to make on the spot... So Eli was not fed from 9pm Wednesday until 12:30pm Thursday when home health could come hook him up to a bag that was meant for home use.

Thursday 1/17 was a rough day for Eli... Lots of crying and pain like we'd seen at home. It was hard to say... was he hungry or experiencing more pain? We did a test to make sure Intussusception hadn't come back (it didn't)... so we didn't want to discharge without knowing where his pain was coming from. Ultimately we had some hard conversations with doctors Thursday and Friday 1/18 about pain management... Many doctors were beginning to think that Eli's pain was mostly neurological and not related to something, and for this type of pain at the hospital all they could do was give him morphine. So ultimately, we would need to figure out what works best for Eli at home. So we discharged on Friday, 1/18, not feeling great about where we go with Eli's pain...

The weekend was a lot of on and off pain, which left Eric and I frustrated and not sure what do for Eli. Monday 1/21 we had our nurse and a doctor from Journey Cares over to our house to talk about options for pain management... Because we knew we couldn't keep living the way we are. The 2 ideas for helping with GI pain were Diazepam (muscle relaxer) and Clonidine, so both prescriptions were filled and a it was a few days of waiting until we could get those. Luckily before we were hospitalized we started looking in to other options for our GI care. There have been several communication issues with our current GI team, and as Eli's parents - we feel it has not been what's best for Eli. This led us to find a newer doctor in our network that EVERYONE loves... our pediatrician, doctors at Lutheran General, nurses, etc. It seems like everyone knows him - went to school with him, worked with him, or did residency with him. So we had several doctors at Lutheran General who called him the weeks we were hospitalized to give him some insight into Eli and prepare him for our appointment with him on 1/22. Eric brought Eli to this appointment and instantly felt heard, understood, and an idea of where to go. This new GI doctor had a new medication to start Eli on to treat him for Small Intestinal Bacterial Overgrowth Syndrome - something that is difficult to test for, but based on Eli's symptoms sounds like he could have. This doctor also had a few more tests he wanted to run before we assume that all of this was neurological pain. This appointment left us feeling a little better for a plan of attack and wanted to begin to figure out how to transition care over to this new doctor.

needing lots of heating pad lately

As planned back from December - we had a busy day on Thursday 1/24. Eli had his first wheelchair fitting! It was a lot of fun... We got to talk all about our needs for taking him out and about, and it's AMAZING what can be custom created for him. His wheelchair will be navy, look more like a stroller, and have all kinds of attachments to help us transport his equipment. Eli had a blast getting measured for this wheelchair and thought it was funny all the positions they had to put him in. After this, he had a car seat safety test to make sure he was as safe as possible in the car. Special needs car seats typically don't start until the child gets older... So we found out currently we have the best car seat for him and that the PT at Lutheran will begin to work on finding Eli a neck collar to help support his head more in his seat. After these 2 appointments for Eli - we had an outpatient care conference for Eli with all of his specialists to come up with a plan of how we feed him comfortably and where we go from here... His PICC line is hopefully a temporary plan until we can work on his feeds in his gut more. We talked about pain management and getting another brain MRI soon to check disease progression. It was a long, exhausting day... but steps forward.

The next week we began some new meds, started Pedialyte through Eli's Jtube again (we had been giving him gut rest since leaving the hospital a week ago until we knew more about his pain), and kept in contact with doctors about where we were at with the feeding plan. But after only being home for 2 weeks after a 2 week hospital stay... Eli began looking awful - in a different way this time. On 2/3 (Sunday), Eli spiked a fever and had some spit-ups/vomits... Eli hasn't had reflux spit-ups since October, so we knew something wasn't right! Ultimately the journey back to the hospital began again... NEXT BLOG! ;)

Praises!

• The amount of family and friends who stepped up to help us during these crazy few weeks... We received so many meals at home and hospital, gift cards, & visitors. 
• We had so many people willing to watch Ava and help us with her schedule (including her in-home daycare!)
• My mom/dad and nurses for sitting with Eli at the hospital so that Eric and I can try to work.
• A VERY understanding work place that is doing whatever they can to help support us during this time.
• Spending a night at the hospital on your birthday was made much sweeter by the flowers, cookies, and treats delivered to our room!
• New GI doctor.
• A team of many specialists trying to help give Eli the best life he can live.
• Eli & Ava being the sweetest duo - their reaction to being back home together will forever be engraved in my mind!
• Eric and I easily being able to pick up training on PICC lines & TPN.

Prayers

• Finding the best specialist team for Eli to never stop advocating for him.
• Pain management and solutions to his pain.
• Not becoming reliant on his PICC line and being able to feed him through his gut.
• Rest and less stress for our family in general.

Song from a band at our church: https://www.youtube.com/watch?v=xt57pKLknSQ

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