Life as an ICU caretaker

It’s been 16 days now since Jack entered the doors of UNC Hospital, 16 days since entering the pediatric intensive care unit, & 16 days of hell. What a journey we all have been on. Someone from the family has been with Jack at all times, either Lee, Coleman or myself which has been very taxing on us all, even family at home unable to be here, even Teddy our beloved most precious Labradoodle (though Lee would beg to differ). Hospital life is beyond rough for any patient or anyone staying with the patient, but ICU life on the patient & caregiver is beyond. Poor Jack has been hooked up to everything this hospital has! From an EEG which he still has lots of glue in his hair, to EKG’s, a vent, you name it, he’s had it or has it. What do all these machines have in common, they make a racket. At home, I have never understood the importance of microwaves, coffeemakers, air fryers, or ovens making a noise when pressing the buttons to turn on or set the time. Why does everything have to beep? I understand the beeps if something is wrong or the item is done, but beeping to set the timer or turn on, that’s foolish! Noise, noise, noise was the closet thing that got me feeling like it might be Christmas (you know, The Grinch’s story, he hated the noise of Christmas in Whoville). Jack had something called ICU delirium after the brief time he was extubated, I think I do too! One of the attributing factors of this is noise. Although Jack was sedated the whole time, it wasn’t a good sleep, not a restful sleep. Once we would get settled for the night, something would start dinging. People are in his room day & night. When he first got here & up until a few days ago, they were working on Jack about 21 hours a day total. In all seriousness though, what Jack is going through & has gone through has been tough to witness as parents. He was confused & talking pure gibberish. That is almost as bad as seeing him on the vent. This paragraph was typed when Jack came off the vent, in a turn of events the next day, he had to be placed on the vent for a third time due to his lung collapsing yet again.

We are tired & I can not imagine how tired Jack is. The noise from the hall I can’t even describe other than saying 2am is just like 2pm in an ICU. Time makes no difference to anyone here. They talk loud in the hall disturbing any rest you may be trying to get. I get it, I’m not complaining because what they are doing is working tirelessly saving lives, I’m just explaining what all this is doing to ICU patients & how it can affect them mentally & caregivers, too. Bath’s are given at like 4am, sheets changed at 3am, I mean it’s wild folks & everything goes wrong in the wee hours of the morning too no matter where you are with a sick patient. As soon as we drift off, something is going off in the room. Of course we wake up in heart attack mode thinking the worse but most often it is the IV pump. This is an example of what we hear constantly. Also, his room is near the life-flight helicopter pad that has been working overtime!

Now can you start to understand hospital delirium?

The things that Jack’s body is going through makes me want to die, truly. It is so hard watching him go through it all. When they intubated him the third time last night, Lee witnessed it all. I left to go home & rest, hadn’t been home two hours & Lee calls & said things aren’t looking good, they couldn’t get his oxygen up. It was up & down until I got there. When I arrived, it was down low. Witnessing Jack’s oxygen plummeting while on the vent & while on full force vent settings made us all lose it. Coleman came to support Lee until I got there-thankful Coleman moved into the area back in August, he’s been a huge help. I told Coleman after all the times Jack has literally beat our tails & all that trauma he put us through, he’s not even strong enough to cough now. What I wouldn’t give to take his place. The trauma we have seen his body go through are images none of us will ever forget.

ICU life is usually meant to be a few days, maybe a week, not the length Jack has been in. There is no where comfortable to be. In Jack’s room, there is a recliner & a chair that sits up straight. The recliner hits the arm at a terrible angle that makes my hands fall asleep. Then Coleman brought a blow-up bed for us to sleep on that is better than the recliner in some ways as far as stretching out my long body but it gets old & it’s not very supportive. There is nothing to do here but sit, lay, eat, & sleep for 20 minutes if you’re lucky or a man. As I’ve said before, men are blessed with the ability to sleep anywhere, any how. Lee even slept through a Keith Urban concert! Lee & I look like a couple of strung-out crackheads laid up in this room.

Lee in the carpal tunnel recliner.
Me on the air mattress.

Another downside of this whole hospitalization is the bathroom ordeal. In this unit, there are no individual restrooms. We have to go out of the locked doors in one of the four public restrooms which is fine, except they stay clogged up all the time. On Christmas night while I was here, all four were stopped up & out of order for two days! We had to go downstairs to use the bathroom every time & I was skeered. No one was around with it being a holiday, it was late, I just knew a crazy person was lurking nearby to murder me! There is zero privacy here. What else is awful is having to sleep in regular clothes. There is always someone coming in that I would hate for them to see my raggedy pj’s! Sleeping in a bra is the pits. As soon as you roll on your side, your boob falls out!

What Lee & I miss most though, is being at home. Although our home life was stressful, it was home. Our bed is pure heaven thanks to our memory foam mattress from Bobby’s Furniture. I miss watching our recordings of Below Deck & the Beverly Hillbillies. I miss hanging out with Teddy & watching the funny things he does. I most miss hanging with Ava. She has really suffered with not having both parents there or only one. She’s 16 but her home life has been majorly disrupted. She can’t go & do fun things with friends because she is having to tend to The Berry Patch (our business) or be home with Teddy. These are her prime years & she’s having to suffer through them like a 46 year old me. She & Coleman became adults before they had to. Learned to deal with things before they were supposed to & luckily most things they have dealt with, most adults will never have to. We miss bathing everyday, clean clothes, having an opportunity to sit in a comfortable seat. We are also very dehydrated. Anytime we want water or ice, we have to ask the nurse which I think that’s just awful. I drink tons of water at home but here I do not. I don’t want to bother a nurse to keep me hydrated. They have turned the PICU waiting room into a junk room. I can’t tell you how upsetting this is. It has recliners in it & a small kitchenette for parents to get ice, water, access to a microwave. A nice place to go rest while your child is sleeping during the night & safe but you wouldn’t have to hear everything in the world going off in not only Jack’s room but all others. That is a huge disservice to all parents & caregivers for anyone in the PICU. I will be writing an anonymous letter when Jack gets out…I don’t want them to know who we are in case he has to come back.

The positives of being here & all these are stretches, are not having to decide what we are going to eat. I haven’t cooked but once in 16 days. We go to the food & the cafeteria has various selections. We are able to leave now that Jack is sedated whereas before back in May I couldn’t because Jack wasn’t sedated & tried to pull off everything he had on him. So I’m immensely grateful to be able to leave the room this time around but surely hate it’s under these circumstances. Everyone here is so kind & that makes everything easier. I’ve seen a violinist playing Christmas music in the lobby, the gift shops are terrific, food is great. It’s like being at a Disney resort almost but is actually the worse vacation of your life! Disney too because they don’t have Pepsi (I’m hung up on that)! They do have a Pepsi machine at the parking deck, but I would die of thirst before I got there! People say just ask for a cup of ice, no! If you are a true Pepsi drinker, you know the form it is in & the coolness of the drink is what makes it. I only like canned Pepsi’s & they have to be just the right temp or they are not fit to drink. This is a whole other blog-I have a sickness to only want to drink 1/2 a can a day if that. If it’s not worth my calories, it won’t touch my lips! I was raised on Pepsi, turnips, cucumbers, Nabs, & hoop cheese. Message me if you don’t know what the last two are, but Nabs aren’t fit to eat any more in my opinion, they changed the recipe.

Jack’s latest status is trying to build up his collapsed left lung, working on building his hemoglobin up-he’s had two blood transfusions while here, & to continue fighting. We haven’t even dealt with the permanent feeding tube placement, hopefully that can come soon. Your messages, concerns, thoughts, reaching out to help at The Berry Patch, but most of all your prayers have been a huge blessing to us. Keep them coming as Jack is going to need them in a big way. Pray that his lung will not collapse again & he can get stronger to support himself to cough up that mucous. Pray that the ICU delirium will not come back. Pray that he will accept the feeding tube without any negativity. And lastly, pray for our whole family to be calm, reassured in our faith that God has got this, & for rest. Love to each of you. 💜💜💜

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

8 thoughts on “Life as an ICU caretaker”

  1. My heart breaks for all of you. I know this sounds so crazy but your family showing this kind of support is just amazing. I can’t imagine the hell you all are living through but as you said “God has this.” Ellerbe Strong! Continuing to pray for Jack, your family and his team of doctors to help get him well!🙏❤️

    Liked by 1 person

    1. I can relate as a nurse having worked the ICU”graveyard” shift. The monitors beeping become a part of your senses. I can relate to being a family caregiver at Chapel Hill. Those monitors, those voices outside the room, those frequent checks by staff are draining. But I promise you, the nurses appreciate you being in your childs room. Especially in these extremely busy times. You are an angel! I pray things will get better soon so all of y’all can come home.

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  2. Amy, being so far away, all I can do is pray for all of you. It grieves me that for years life has been so difficult for you and Lee and Coleman and Ava. I can’t even imagine how you have endured all that you have. I can only attribute it to the grace of God. I just wanted to let you know that there is one more person out here who is praying for you and your precious family.

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  3. God Bless Y’all’s Hearts…I Pray for Y’all a lot…God does have this!! I Pray God would give Y’all the strength and Confort you need to get thru this…I Pray Jack would not get agitated with everything that is being put into his body..Y’all and Jack have to be tired ..I Pray Y’all will have a peaceful night and that God will allow Y’all to get some sleep..I pray for Ava too…God be with her and Teddy..Thank God for Coleman ..I pray God would be be with him… Keep your chin up and remember when you are looking up God is looking down. Love and Hugs!

    Liked by 1 person

  4. Amy
    I agree; ICU care takers or any care takers for the matter do not get enough notice or love. This has always been a touchy area of mine. After reading your blog your words are so true. Being a nurse and one who worked over 20 years of my 30 year career working nights. Hospital rooms do not dim the life of activity in the hallways. I pray for Jack, you,Lee, Coleman, and Ava. Specifically for strength and grace to endure this difficult time. I also agree Nabs are not the same as when we were kids but I still love them. Please let me know if I can do anything for you all. Know we all love you and are here for you.

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  5. Thinking of the Berry’s while sitting in my relaxed mode. I know its rough! Just had a family member to spend 61 days in ICU and Amy her momma is so tired. 36 and mother of 2 made it back to Robeson County. Things looked dim and dimmer but she’s home. I am sharing this with you to let you and Lee know miracles are still happening in those sad rooms. I am glad you can at least get you some pretty good food. I really feel sorry for your momma. I know Pat isn’t use to you being gone this long . Glad Ava knows how to keep the Berry Patch going. Would be sad if people couldn’t get those collards. Lol. Evidently, ya’ll have some very good employees. Love ya’ll and I thank the Lord for stumbling on Amy Berry on Facebook. I really have enjoyed following the BERRY’S.

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  6. I’m thankful that you were able to vent and open our eyes to what you are going through. I have spent my fair share of time in hospitals and I can tell you that they are not places to rest. Your strength inspires me as you continue to help care for jack. I feel so sorry for you all as you go through this but I’m thankful that your faith is strong and you have so many of us praying for you. There is only so much a person can endure and I know you are pushed past your limits. I pray that you can come home and get some rest during these difficult times. I know it isn’t easy leaving Jack in this condition but you must take care of yourselves as well. I will continue to pray for you each and every day and hope this will get better sooner than later.

    Liked by 1 person

  7. Dear God, tonight we lift up the mama whose faith is being put to the test. She is in a hard, dark spot right now, and she isn’t sure how much longer she can hang on. But God, you say that if she has faith the size of a mustard seed then she can move mountains! And that faith is in you and you alone! Remind her that when she clings to her faith in you that you will be faithful to walk her through this dark season. Be near to her tonight, Lord! In Jesus’ name we pray, Amen! many thoughts and prayers are with you all from andy webb and family

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