No End In Sight

Here we are again... 1 year later... facing another very long hospitalization. February 2019 we spent basically the whole month in the hospital, and it unfortunately looks like Eli is trending towards this again.

Valentine's Day 2019 & 2020 spent apart from each other! 

What this hospital stay as looked like day by day for us:

• From where I left off with my last blog post... it took several days to get Eli's levels back to normal. I thought it would be a quick fix, and I was very wrong! They started replacing the night of 2/2 and stopped on 2/5.
• Also during this time, he was in extreme pain and was not sleeping... 4 days of crying all day and night. So the Palliative team took pretty drastic measures right away to try to get him comfortable. This included a clonodine patch (a medicine he usually used in lesser dose in his gtube at home for extreme fussiness/pain) that releases consistent pain medication for him, an insomnia/ anxiety medication for night, and IV diazepam (another med he is normally on in his gut at home, not IV... and in lesser doses and usually only at night). He began getting the IV diazepam around the clock and had some as needed doses as well that we were using. This pain plan finally began to work Wednesday 2/5 and Eli was finally moved to the regular pediatric floor that night... so we were starting to get things ready to go home hopefully Friday or that weekend.
  
• Friday 2/7: Eric was woken up to the PICU team assessing Eli in the room at 3/4am because Eli's breathing was worrisome and his temp got up to 100... the cause of all this unknown, and we know the drill so very well: virus tests take 24-48 hours to results and bacterial takes a full 48 hours to be negative. So we'd be sitting around the hospital and see what it was that was making Eli sick. That same morning he was put on high flow oxygen, did a chest xray, and moved back to the PICU to be monitored closely again.
  
• Eli was super congested all weekend 2/8-9. When he is congested we usually do more breathing treatments that we normally do at home 2-3 times a day. On Saturday 2/8 they increased them to every 2 hours all day and night. They were really trying to get all his secretions out because he was blocking his airways and desatting in oxygen frequently. Eli was needing to be "deep suctioned" frequently too... where a longer thin tubing is put down his nose to the back of his throat to suction secretions. We normally never do this at home and he was needing it all day and night.
• The results from both viral & bacterial tests came back 2/9 as negative... so that confused everyone and they were sure that he was showing with signs of something viral. So they re-did the chest xray and viral test. They were able to stop the high flow oxygen and get him back to a normal oxygen machine, but much higher levels than we use at home (we have up to 2L at home
  
  and at times he was needing 5L on 2/9). The second chest xray showed a lower left infiltration in his lung... so he was diagnosed with pneumonia and put on antibiotic for this.
• 2/10: we started to talk more about a pain plan for Eli. The IV diazepam is a controlled substance and not something we can get at home... And now he has been on it consistently for a week. So we needed to start weaning him off of it in order to get him home. He was supposed to start weaning on 2/7 (since he had been pain free for 2 days and just sleepy/ out of it), but there was miscommunication with a new computer system that was rolled out at Lutheran General that weekend (finally on Epic) and so it didn't start until 2/10. (FYI: really fun to be admitted while a hospital roles out a new computer system!)
• Second viral test came back early on the morning of 2/11 that Eli has a common cold (coronavirus... not the crazy one that is quarantining people) that he caught at the hospital... Nothing to do for this than what we were already doing: get secretions out with suctioning and keep doing extra breathing treatments. Now with the knowledge of the cold and the pneumonia, the goal to go home was to get to the place where we are able to support his oxygen needs at home.
• Since it was seeming like a discharge date was in the near future with his respiratory stuff getting in control... on 2/11 we tried the same dosing of diazepam in Eli's gtube that he was getting in the IV. We have diazepam for his gut at home, so we could just go home on this higher dose for his gut. We really didn't want to stay at the hospital because of weaning pain medications only... so I was pushing to get everything ready for discharge.
• However, on 2/11 Eli wanted to throw us another surprise. He withheld urinating overnight and through the morning... We've had several stays where Eli doesn't pee for long periods of time and everyone worries, but then they do a bladder scan and learn that he has no urine in his bladder. This time he had tons... so he had to be cathed to get his urine out. He did this again that same night and had to be cathed again... So his urine was sent out for testing Wednesday 2/12 in the morning to see if anything else was going wrong. We've never had to cath Eli for urine before.
• The morning of 2/12 I was hopeful for going home... but then we needed to watch for his urine sample and the doctors still didn't like how much the nurses and respiratory team were having to deep suction him (since we don't do this at home much). So the team wanted to give it one more day.
• The outpatient care manager and I caught up to make sure everything could get ready in the morning of 2/13 for discharge... Discharging Eli isn't an easy task... I was at the hospital 2/13 hoping to line everything up. I worked with and talked to his oxygen supply company - getting an oxygen concentrator that goes up higher than the one we have at home (2L to 4L), got oxygen tanks delivered to the hospital so that he could have oxygen on the car ride home, working on getting his new specialized TPN (feeds) and pump sent to our house, setting up his Synagis (helps protect against RSV) to be re-sent to our house since they'd been trying to deliver it for the past week while we weren't home, talking with his nursing agency to set up nursing again, keeping his school teachers posted, etc etc.... it was a long morning. Seemed like we were all good to go home that evening - the team just wanted to watch him during the day and then discharge before shift change... then Palliative doctor came in and everything changed...
• Eli was in pain again starting at 4am on 2/13... Palliative doctor thought he was having withdrawals from the IV pain meds... So she said we need to go back on those and try to get the IV dosing at home... because his withdrawal symptoms would only get worse. Feeling defeated, but not sure what else to do... we put Eli back on the IV diazepam while this Palliative doctor [who we LOVE] has been brainstorming a lot of options for Eli to get him more conducive pain medication at home - like IV dosing.
• 2/13: urine test showed nothing and Eli started urinating like normal again

  

  V-day in the hospital

• 2/14: Palliative doctor confirmed none of our home health agencies are authorized to give us IV diazepam in our home... so the new idea to get us home: a new nasal spray for seizure activity/ pain and rectal diazepam - both can be used at home, but not typical with the frequency Eli needs it... so we needed to wait and see how insurance/ pharmacy responded to the requests. Which they responded that same day and definitely not going to work... rectal diazepam in his amounts would be $1k/ month and the nose spray was $59k....back to square one 😂
• During the day on 2/14, Eli had some face twitching... right away the team ordered an EEG to see if it was seizure activity or withdrawals. The EEG showed no seizure activity, so the best guess is that even though Eli has been back on the IV diazepam for 24 hours, he was having withdrawal symptoms.
• Unfortunately Eli has been in more consistent pain again since Thursday 2/13 to Sunday 2/16... And we should be past the point of where withdrawals would be causing the pain since the IV diazepam is back in his system for the last 3 days. So everyone on the weekend team is stumped... no one knows why pain meds aren't working for him now and where his pain is coming from. The only answer as of right now is "disease progression."
• Unfortunately he didn't sleep 2/13-15 again... just whined or cried all night... BUT he slept last night 2/16 🙌
• The weekend team is anxious for today (Monday) for our specialist doctors to be back in because they want to talk to our GI and neurologist about possible work up and planning. Eli is due for full GI testing and a brain MRI that we were going to do once discharged... but to help understand his gut and pain, we might need to do something this hospital stay.

Real Talk:

• This has been hard hospital stay... All of them usually are: sleeping on a couch, our family separated, juggling work/ kids/ life schedules, etc. But this stay has been a LOT of not sleeping, his constant whining/ crying is killing us - so so sad, and trying to work during a busy season yet really being needed at the hospital as well... and poor Ava is just sad that her family isn't all together and is now sick with a cold - probably from visiting the hospital hallways (she's not allowed on the floor) while we swap kids.
• We've started a lot of "life planning" conversations this stay. One big one that has been on our mind since late 2019 is how much of Eli's medication is he actually absorbing in his gut? Eli struggles with keeping meds down, so sometimes he is vomiting them... but he is also attached to a bag at his stomach to empty his stomach. We clamp the bag for 1-2 hours when we put in medication, plenty of time to absorb, yet when we unclamp fluid is typically rushing out. The Palliative doctors were thinking that the IV diazepam has been working so well because he wasn't really absorbing his gut diazepam.
• We're at a loss for pain management... We sort of feel backed in a corner right now. We seem to manage the pain after days and days of trying, but they aren't sustainable strategies for home. So if we can figure out something for home, we will have to wean him off the IV doses of medication (which can take a week or more)... hence why we can feel that this hospital stay is not even close to over. And his pain has been on and off really hard over the last few months, not just this hospital stay, so a lot of our pain conversations are bigger picture too so we have options at home and hopefully less all-nighters.
• Which leads into that we have started talking about if this is the time for hospice support for Eli yet... Hospice would mean that doctors wouldn't be surprised if his life ended in the next 6 months. The doctors don't think we are there yet because his lungs and heart are still relatively stable. However, hospice support would be able to give us IV medications at home that we might need. But doctors don't feel like they can refer us for this yet.
• So many friends and family are asking how to help - thank you! We honestly are just not sure... We really need sleep and help with Eli's pain - hard for our family & friends to provide these.

Praises!:

• Weirdly enough... his withholding urine because that is really what kept us at the hospital another day and allowed us know that withdrawals and more pain were coming
• Slept through the night last night 2/16!
• My small group: amazing prayer warriors but also SPOILED us with pre-made meals, veggies, & snacks to last us a week
• Help from MorMor, Aunt Hanna, & Aunt Callie a lot this hospital stay... All while Hanna is slammed at work and MorMor is nursing a healing Grumpa from hip surgery.
• One of our day nurses who is willing to come to hospital with Eli during the day so we can try to work
• Valentine's Day - Hanna went to the hospital with Eli and MorMor & Grumpa came over to play with Ava and put her to bed, so that Eric and I could see each other for the first time in 2 weeks!

Prayers:

• Be back home together with a successful pain plan for home
• Upcoming life planning talks with doctors
• Perseverance to weather the storm
• Ava: our feisty emotional roller coaster... pray for her strength & understanding

A sweet friend sent me an article about special needs parenting from a Christian author that ended like this:
"Your struggles are not in vain. Your pain is not without purpose. Your weakness may very well be your greatest strength. Because, dear ones, when it comes to the story God has for you, the pieces fall into place are never in error, even if we don't see how they work together. You are in the middle of your story for a reason - 'for such a time as this.' 2 Corinthians 1:4- 'He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.'"

"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed." ~1 Peter 4:12-13