Eli's pain subsided on Monday 2/17. It seems like it took 3.5 days or so to get the IV diazepam back in his system and make him comfortable again. Monday and Tuesday were mostly sleepy days & nights - likely resting from the painful weekend and on too high of pain medication again (but was needed to get him calm).
Tuesday 2/18: brain MRI
- We are due for a brain MRI at least once a year to check the progress of brain atrophy... his last one was Feb 2019 during our last long hospital stay
- Because of his virus and recent pneumonia, the anesthesiologist decided Eli would come back to his PICU room with a tracheal intubation to ensure proper breathing for his safety. With anesthesia there is always a risk that we will be unable to take out the breathing tube safely... but with 8! doctors, nurses, and the anesthesiologist in the room, they were able to remove Eli's tube right after arriving back in the room.
- Because of anesthesia, getting the breathing tube out, and his virus/ pneumonia... Eli went back on high flow oxygen post MRI. We were successfully able to get this off and back on a nasal cannula on Wednesday.
- MRI results: his brain has stayed the same this past year for the most part - didn't shrink again. His brain size is that of a 8-12 month old in the body of an almost 4 year old. Since his brain is significantly smaller than what it should be and with how much his body has grown this past year (~11 pounds!), it is likely that this is causing an increase in neuro agitation.
- On Wednesday I began to ask if there was any GI testing that wouldn't require anesthesia that we could complete prior to our care conference Friday... like the small bowel follow through we did a year ago. This test injects dye in to his stomach through his Gtube and then they take imaging as it moves from his stomach to intestines and out.
- Last year from this test we confirmed that Eli had slow emptying of his stomach, but still the test was complete in about ~15 minutes
- This year, they were only able to insert a small amount of dye before they saw him refluxing it up his throat on the camera and it took 3-4 hours for the dye to empty out of his stomach.
- Eli is attached to a Farrell bag at his stomach to gravity to empty his stomach of stomach acid and help him vent out air as needed. So in order to keep the dye in his stomach and watch it push through, we had to keep his bag clamped for a long period of time (~4 hours) - which made him very irritable.
- This test really helped us look at - what is happening in his GI system? We have been wondering if he is even able to digest his medications in his gut anymore and maybe that's why the IV pain meds are working so much better?
Friday 2/21: care conference
- SURPRISE! Our GI doctor surprised us and came in for the care conference while he was supposed to be on paternal leave - just had a baby Monday! We were expecting one of his partners to be there on his behalf. Brings happy tears to my eyes as I even type it... It was SO great to walk into a room with a table full of people who we actually really trust to make smart decisions for Eli's health & pain.
- Neuro standpoint: brain has not changed in the past year, but his body has grown, which is why we are probably seeing more neuro agitation. We can also see that his gut is slowing more, which is also causing more pain - Eli has always had an extra sensitive gut. However, his lungs & heart are still working really well in light of everything he has going on... I don't think that doctors will ever say it, but it seems to me that it is a miracle with how small and disorganized his brain is that his brain is still making connections - that his heart & lungs have given us no real issues and that Eli is able to interact with us in his own way.
- Now our focus is on his GI system and pain he is having:
- Everyone agrees that the pain regimen we are on now of the clonidine patch and IV diazepam is Eli's sweet spot - still working on weaning IV diazpeam a little to get him in the most comfortable and awake place, but almost there.
- New idea: botox in his stomach at the opening into his intestine. This will help the flow of gastric secretions and medications more... and hopefully relieve some pain of a full stomach- with how much he is refluxing and the possibility that it is making him nauseous.
- Working on getting IV diazepam in the home... this is the biggest challenge. Keep hitting roadblocks with our insurance, home health company, and palliative in the home agency... The doctors, social worker, and outpatient care manager are working so hard at this, but this might be the thing that keeps us here longer if we can't figure out how to get interventions at home that we need for his comfort.
Next week Eli will get botox in 2 places actually... (it's OK to laugh - we have to find the comic relief in it all!) Another issue that keeps arising this hospital stay is how much Eli is desatting (dipping in oxygen). At home, we typically have him on an oxygen monitor at night and he usually requires some oxygen at night. At the hospital he is always on monitors, he is still at times needing oxygen during the day, and desatting a lot. What we're finding is that he is just not really swallowing his saliva and it is blocking his airways. Once he is deep suctioned, he is able to jump his oxygen right back up. So at the same time he's under anesthesia next week for botox in his stomach, we are also going to put botox in his saliva glands to help clear up his airways more. The goal of this so that we are not needing as much monitoring and suctioning at home.
So it appears we'll be here in the hospital for another 1-2 weeks... momma bear expressed her VERY big concerns to make sure the birthday boy is out by his birthday party 😉 - we all know how much I like to put on birthday parties... so that is the goal. Things to work on/ do the next 1-2 weeks: botox for some more pain relief options & oxygen help, watch his pain levels after these procedures, and figure out how we get IV pain medications in the home!
Praises!:
- Our GI doctor who we've become very close to this past year showing up at the care conference - we are SO appreciative of the people who KEEP showing up for Eli and us.
- Getting brain MRI and small bowel follow through completed this week prior to care conference
- SLEPT THROUGH THE NIGHT ALL WEEK!
- IV diazepam is making him pain free, we are starting wean, and we are seeing him more comfortable & awake
- Friends spoiling Ava, cleaning our house, and leaving tons of food
- Ava's fun weekend get away in Chicago with aunt & grandparents
- Coworkers who are supporting us, praying for us, and always checking in
Prayers:
- Patience in the waiting of finding IV pain medication
- Answers to how we get the pain medications at home
- Botox injections to an effective pain management strategy
- Ava - as this stay gets longer and we're not all together, she's getting more emotional... even required Dad to make an extra trip to the hospital this week to come give me a hug
"I love you, O Lord, my strength. The Lord is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold. I call upon the Lord, who is worthy to be praised, and I am saved from my enemies. The cords of death encompassed me; the torrents of destruction assailed me; the cords of Sheol entangled me; the snares of death confronted me. In my distress I called upon the Lord; to my God I cried for help. From his temple he heard my voice, and my cry to him reached his ears."
~Psalms 18: 1-6, ESV
Paul: "But I do not account my life of any value nor as precious to myself, if only I may finish my course and the ministry that I received from the Lord Jesus, to testify to the gospel of the grace of God."
~Acts 20:24, ESV
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