We’re home! After 19 days in the hospital, 18 of those days in the PICU, we got home at 10:30pm the Wednesday before Thanksgiving. So much to be thankful for!
Ellis’s time in the hospital was a rollercoaster, per usual. But let’s start at the night we took him to the ED. Ira had started having a runny nose and cough the day before so I took him to the pediatricians to be checked for all the big things: strep, RSV, and flu. All of those came back negative so our plan was to keep him as far away from Ellis as we could while also just having to live life. We protected Ellis the best we could, but because Ira was probably contagious days before he showed any symptoms, and because he’s (almost) two years old and touches EVERY SINGLE THING, Ellis started showing symptoms the next morning. We called his hospice nurse to come check him out so we could be sure his lungs were okay. She showed up shortly after our call (and can I just say I think all babies should come with a nurse that comes to your house instead of having to go into a doctors office full of sick people. I mean I can have toilet paper delivered to my door step in one hour, I feel there is a legitimate money making service to be had here). She checked him out and gave him a listen and at that time his cold and congestion was all in his upper respiratory system. His lungs sounded good and clear. The plan was to continue suctioning (hello portable suction machine 🙌🏻) and keep him as comfortable as possible.
Later that night after we got Ira to bed and started getting Ellis situated for the night he began dropping his SATs. We would up his oxygen support and they would go back up for a few minutes then would trickle back down. Around 1 am Cooper headed to my parents to get our concentrator that goes up to 5 liters in case we needed it. Around 3 am Ellis was working really hard, was very fussy, and we were up to 3 liters of oxygen. We jumped in the car (after my sister arrived to sit with Ira – shoutout to her for answering her phone in the middle of the night and hustling over) and rushed to Cooks ER.
They immediately put him on high flow, put an IV in, and got a blood gas and X-ray. His blood gas came back at 96. At that point he was in major respiratory distress and I remember hearing the ED doc saying over and over “we have to move him, we have to move him”, all the while I was thinking “where are they moving him to?!”. They quickly rushed Ellis out of the room he was in and into the resuscitation room, bagging him along the way. I remember thinking that this was it. He was dying. I remember seeing his SATs in the 40s. The room was full of doctors and nurses. After two attempts they were able to successful intubate Ellis and his SATs came up.
I sat in that room, holding my husbands hand, really thinking Ellis’s life was over. Neither of us were hysterical, in fact we were calm. We prepared for this. But more than that God covered us. As He always does. When they successfully intubated him and his color returned, my heart soared. I knew we had a long road ahead. I didn’t know if he’d ever come off the vent again. I figured we’d have tough decisions to make. But for at least another night, Ellis is alive. God has given life yet again to Ellis.
We hadn’t been able to get ahold of my parents (mom and dad this is your reminder to turn your phone volume on and up 😉) at all during this. I had started calling them around midnight to tell them Cooper was going to come to their house to get the other concentrator. I continued calling them all the way up until this point – which is now 6 am. They were going to wake up to about 50 missed calls from us. My sisters were calling also. After Ellis was successfully intubated and while we waited for them to finish everything in that room before we headed to the PICU, Cooper jokingly said, “maybe you should try emailing your dad. I bet he’s at his computer and has been since 3 am but hasn’t checked his phone.” So I did. Here’s the email I sent:
And I kid you not my dad called just one minute after sending that. If you know my dad, this makes total sense. They felt terrible (still do I think) but seriously I needed the humor of the email working over 50 phone calls. So thank you dad for that 😘
We headed up to the PICU where we were warmly welcomed back by familiar faces who got Ellis situated and settled.
I’m going to try and just wrap this up so here’s a really quick summary of 19 days in the hospital and I’m sorry but I forgot a lot of the details I’m sure. It went something like this.
Ellis diagnosed with Rhino virus. Intubated for 12 days I think? Two nights of needing CPR mixed in those 12 days just to keep everyone on their toes. God in all the details. Seriously all of them. Tried to extubate on day 11. Ellis does not like that plan. I wrestle with trusting the Lord and wanting it done on my own timeline. “I want to be home by thanksgiving God!” I pry my hands back open falling on my face at the feet of the one who holds all things in His hands, even Ellis. God provides peace and sustainment. We attempt extubating again, it’s rough. Really rough. About to reintubate, I beg for bubble cpap (they RARELY do bubble cpap in the PICU. Like his RT one night said he’s worked there for 7 years and Ellis is the second time he’s seen it done.) They give Ellis one hour on bubble to get it together, his gas goes from 93 (I told you it was a rough extubation 😅) to 56! In one hour! Only God. Bubble lives another day but all weekend long Ellis walks the line of being reintubated. I’m at home with Ira and Cooper calls from the hospital Saturday night saying he’s had another bad gas, they’re preparing to reintubate but the nurse practitioner who’s on and knows Ellis pretty well at this point says she wants to try a last ditch effort of high flow one more time. I cringe and say this is going to be a complete nightmare but okay, “let me know how that goes… 🙄” AND ELLIS SOARS! All weekend, I prayed boldly, knowing if it were going to happen it would have to be the Lord moving and doing, that Ellis would be home by Thanksgiving. It seemed silly at times to even ask God for that. He is providing Ellis life, four months of life, and I want him to get us out of the hospital by Thursday? I would laugh at myself. But it’s what I wanted so I asked anyways. I asked persistently.
Tuesday Ellis was down to 1.5 liters of oxygen – what he was going to be sent home on. He looked amazing, was awake and interacting in ways Ellis does. We moved to “the floor” and out of the PICU that night.
Wednesday I was ready to go home. Ellis had held up his part of the deal – 1.5 liters for over 24 hours and doing great. He still had his PICC line and his only additional med outside of our home meds was methadone. I knew we’d have to wean off the methadone and there was a possibility it could be done at home. His pulmonologist came by and said she was good letting him go but she would find out from palliative care what they think about weaning his medicine at home. She left and the palliative care social worker came in and we started chatting. His pulmonologist came back in just a few minutes later and said she talked to his palliative care doctor and he did not feel comfortable sending Ellis home to wean the methadone there. He wanted to be able to watch him closely since he is special and sensitive. I started crying. I don’t cry often. But I cried in front of these two ladies. “Okay” I said. But it didn’t feel okay. I wanted to be with my family for Thanksgiving. I wanted to be with Ira and Ellis together. And not in the hospital. The social worker got up and said “I’ll be back. I’m going to talk to the doctor.” Shortly after she walked out, the palliative care nurse practitioner, who had been in a care conference for the past two hours, walked in. I was crying and she asked what was wrong. I told her I was upset about not being able to wean his medicine at home and we talked about why. She then left and a little while later comes walking back in saying, “You know you are loved right? I didn’t even get down the hallway when I left before I got a text from the doctor telling me to come back to the office because we were having a meeting about Ellis.” The social worker then walks in and they begin to tell me that if we agree to the conditions, the very strict conditions, Ellis can wean his methadone AT HOME. This would not be happening if we didn’t have hospice in our corner. Hospice has to see Ellis daily, we have to check in with palliative care continually, if he shows any signs of withdrawal we have to call immediately and have a plan in place, and we will wean so slowly that it will be Christmas by the time he’s off of it. I agreed and cried happy tears and told them how much I appreciated them advocating for our family. We feel incredibly loved by the staff that cares for Ellis. We are so blessed. The doctors had to jump through some serious hoops to get Ellis all discharged and we were leaving the hospital at 9 pm that night. Thanksgiving at home with both of our boys! God answered my prayers! He didn’t have to, but he chose to!
So far Ellis is doing really well! We thought he was getting sick just two days after leaving the hospital but he cleared up and looks really great. We are so grateful to be home! Ira will not let us out of his sight, or really personal space, at all. He’s just so glad to have us back again. It’s the sweetest gift to be home again with both of our boys. We are trying to not take a second of it for granted. I can’t explain the pull my heart has for my two boys. I wish I could be everything for both of them all the time. It’s hard. The hardest part of this whole journey in fact. I never want to have to set Ellis down. I never want to have to not play with Ira. I’m trying to balance this all the best I can but of course I’m only human so I’m messing it up a lot. But, home has been so sweet. We’re hoping and praying we get to be home for a very long time before we end up in the hospital again. We’re praying Ellis stays completely healthy through this flu and cold season. We know back to back hospital stays due to sickness will not be good for Ellis’s fragile lungs. So for now we’re basically hibernating in our home the best we can, knowing we are ultimately not in control – and thank the Lord for that!
We would love for you to continue to pray for our family and Ellis. Would you pray:
“Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy. Let me dwell in your tent forever! Let me take refuge under the shelter of your wings! Selah” Psalms 61:1-4
PS. I’m reading a fantastic book called Remember God by Annie F. Downs and it’s amazing and I think you should read it too. Here’s a quote from it that I read in the midst of the rollercoaster:
- That we stay completely healthy and Ellis does not get sick
- That Ellis continues to grow and thrive at home
- For Ira’s heart and for peace and understanding
- For sustainment and endurance for me and Cooper; this is hard. Really hard. It’s really exhausting. Being in the hospital for weeks at a time makes it even more so. But even being home is hard. We can’t get out really at all which feels isolating. We feel like we’re constantly waiting for Ellis to get sick or pass away, and that just drains us emotionally. Always on guard for the worst. Always hoping for the best.
- That we would praise God’s name no matter what, and especially on the hard days. He is so worthy!
But you also know I’m not a quitter and I will not walk away from this book until we are all convinced, myself included, that God is kind – until our belief is ruthless and can stand up against any situation – until we are sure, deep down in our guts, way further down than where it can be stirred and messed with by life, that God is incredibly kind.
Because He is.
God does not disappoint. He always provides.
Selah. That’s what is true, and that’s what is swirling around in my mind. The empty places and the things that fill them. The manna, the divine provision from God. The way He shows up in places and faces that we would never expect. This is the part of our God, the kindness part, the show-up-ness part, that’s been messing with me. And changing me. And holding me.
If only I can keep from forgetting it.