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