We knew ahead of time when we were being discharged from the hospital that we weren’t being discharged with a brand-new body, like… Oh, bouncing back. Just wonderful. Let’s just go on the boat or something. Like… Yeah. We knew it was gonna be kind of just like home hospital. ♬ Don’t you think we’re better together ♬ ♬ Oh Honey ♬ ♬ I think we are ♬ [both] Good morning! From not the hospital. Do you hear that? Tell me, what do you hear? I hear nothing. Ah! No nurses. No beeping. It is good to be home. No one has asked me, now this is a good thing. I feel very thankful to be able to report this. No one has asked me how I feel. How’s my poop. How are my tube feeds going. No one’s asked me any questions, except are you ready for your coffee? [chuckling] And I… cannot tell you how ecstatic I am to just… have a break. I’m sorry, Ollie. I just accidentally kicked Ollie. Oh, he was all of a sudden right there. Oh, you wanted to come over for the vlogging? Good morning Ollie. You glad to be home too? Yeah. We are… downstairs in what used to be my office and the day before… And then it was the dining room. Yeah, and then it was the dining room and then the day before we left for the hospital… we… were preparing for when we come home and I brought the guest bed down to… this room and… Which, cuz it was a guest bed right before… I mean, it was a guest room. Yeah, we had set it up with an air mattress. Long story short, we have made this room downstairs, our bedrooms are upstairs, made this room downstairs a recovery room for Mary, and we slept down here last night and… It’s amazing. We have the bay window right here and Mary’s plants… Ah, it’s just… Um… wonderful. I haven’t been upstairs since I’ve been home yet. Really? Mm-hmm. But yeah, it’s been a rough day. I mean, yesterday was rough. Yesterday morning in the hospital… my lungs were worse than they had been. Like, I don’t know. I mean, lungs do take ups and downs during a course of IV antibiotics. My lungs do anyway, so… Yesterday was definitely a not-so-good day. But today, you know, woke up, did my vest, did everything normal. And then as my IV antibiotics were going I started really not feeling well. Like, super super nauseous, so I am just grateful and happily staying right here in this bed and not moving. You often think that like… you can come home from the hospital and rest and that is what we’re doing. But in the midst of that… there are a lot of details. We got home around 8 p.m. last night. Yep. Well, first we stopped and got some dinner before we left the city and we got a burger and when Mary took a bite of the burger she started crying. I also started crying the moment I walked outside the hospital into the fresh air. Oh yeah. I started crying immediately. There were so many tears yesterday for so many reasons. There were a lot of a lot of emotions and a lot of ups and downs. But we got home. The home care company delivered Mary’s IVs, like, he got here a few minutes after we got here and we started getting everything set up and trying to make… I don’t know, trying to make this downstairs a environment for resting amidst the busyness of Mary’s IV schedule. So we had to, last night we mapped out, we scheduled out all of her IVs because, um… In the hospital, we don’t really have to think about it much because the nurses are doing it. Yeah. So yeah, we know they’re coming in through the night, but we haven’t really thought through exactly like you know, what it would be like for us to do it. And now we know. And it’s kind of like having a newborn. Yes. We’re every couple hours hooking or unhooking an IV and mixing, her imipenem has to be mixed right before its dose. So it’s three times a day. Zosyn is four times a day. Vancomycin is twice a day and that’s for two hours, that vancomycin dose. So it’s like… there’s only a couple breaks in the schedule where she’s not hooked up or… A couple hours at a time. Yeah, like, actually right now is one of those little breaks until 6 p.m But… And then so from like 3 a.m. to 6 a.m… we slept those three hours, and then from 6 a.m… to 12… we were on and off. Hooking and unhooking IVs and… so I got up at 6 to… Yeah, we went to bed at 3. I got up at 6 to hook up those IVs and I just kind of… stayed not asleep. Did you stay awake that long? Because it was a half hour IV and I was like- Right. To go to sleep would be kind of pointless. Right. And so and then I think I slept while the imipenem was infusing cuz that’s an hour and then… I got some sleep and we kind of stayed in bed till noon. But… Yeah. Anyways. We knew ahead of time when we were being… discharged from the hospital that we weren’t being discharged with a brand new body, like… Oh, bouncing back. Just wonderful. Let’s just go on the boat or something, like.. Yeah. We knew it was gonna be kind of just like home hospital life. Um… That’s what we’re kind of calling it, home hospital. Yeah, so I’m still on all the same medications and I still have all the same side effects. So… it is, it’s gonna be what its gonna be. Um… Previous times I’ve come home from the hospital… I like, want to go to Target immediately like… You’ve missed getting out. Yeah. The last time I was discharged I wasn’t able to go to Target for a week or two and I felt so disappointed by that like, I was like, what’s wrong with me? But this time I was like, I’m not even gonna have it in my mind. I’m gonna have it in my mind that I’m gonna stay in the bed for a week and then we’ll take it from there. But reality is… um… I will have to leave the house. Like, I have to go to the hospital to get blood work tomorrow and again on Monday and then Tuesday, er Wednesday, we have a… clinic follow-up, so we’ll have to go to the city for that. So like, you know, there’s things we’ll need to do but for now… We are in bed. I’m in bed for the most part. He had to go out cuz we don’t have internet today. I was thinking that we would still be in the hospital this week. So I didn’t plan this all that well. We switched our internet provider and because our contract was up and so… When… Basically, I left a gap day from when the service ended and when the new service starts so we get internet tomorrow. So I had to go to Starbucks this afternoon to upload the vlog, but we got all that done. And so we thought… You got it done. Well, you were cheering me on. I was cheering her on while she did her vest and did her IVs and all that, but we thought we’d show you guys our home hospital setup. I was thinking, sorry. Yeah, go ahead. Thinking about how nasty my side effects were. I was thinking it could be because it’s like a slightly different form. Yeah. You mentioned that they’re in less fluids. I don’t know but I’m trying to stay hydrated. But yeah, you can go give them a home hospital tour. Yeah. Well, the first thing we did was we have to keep Mary’s kidneys hydrated because one thing is that’s different about being home is she’s not hooked up to… fluids… like, in between the IVs and so… I’m still on my feeding tube… but not the IV. Yeah. Like, hydration. So because a couple of these IVs, they’re kind of toxic to the kidneys, we have to make sure she’s drinking water. So we put some water back here. I’ve made a little bowl of, this is new. The home care company sent us these little caps to go on the end of her line when she’s not hooked up to an IV and it has alcohol in it. The hospital uses one similar to this. But, hey… ways to prevent, you know, a line infection. I’m for it. Which we’ve never had but… Yeah. Hey. Prevention is a good… policy. So, Mary’s got her vest and stuff over there and… [Peter] You know, just like Ultrase on the floor and… And like tons of IV trash, right? [Peter] Yeah, so we set up a trash can over next to Mary for some of that trash. [Peter] I need a trash can over here cuz last night… [Peter] Last night, I…as I did Mary’s IVs I just threw them on the floor and cleaned up this morning, [Peter] but I’ll take you guys… [Peter] into… [Peter] the dining room where we set up an IV station because like I said, imipenem has to be [Peter] mixed, and so here’s Mary schedule that we mapped out. We had to… [Peter] I don’t know, we had to visualize it and one thing we do is… Mary being on three IVs it’s… obviously a busy schedule and you have to keep track of what’s what, so the first thing we did last night was make this schedule and then put alarms in our phones so that… we know when to hook up and when to unhook. Especially for like those early morning ones so I can keep straight what’s first and all of that, but… [Peter] I set up, because it’s unstable… [Peter] it can’t stay mixed for long. And so… [Peter] what we do is we take… [Peter] two bottles of, it’s like powder drug, and then we take two bottles of sterile water… [Peter] Use this needle. Put it in… [Peter] the sterile water and put one bottle, one bottle of… [Peter] sterile water for each drug bottle, and then for each dose we take… [Peter] this syringe and this cap. It’s kind of like a plastic pokey needle and we draw out [Peter] 15 milliliters of drug, so that’s like a bottle and a half. [Peter] So it’s a little bit… [Peter] I don’t know. You have to keep track of what you’re doing. [Peter] And then after you draw out that 15 milliliters in this syringe… [Peter] Mary has in the fridge… [Peter] We call them IV bubbles, but they are… [Peter] Basically, some people call them grenades. [Peter] Eclipse bubbles. Eclipse is like one of the brands that does it, but basically… [Peter] in here like, this one is already mixed with drug… [Peter] But we have one that just has… [Peter] saline in it, I think and… Sterile water. [Peter] Sterile water and we… [peter] You unscrew the cap of this and we shoot that 15 milliliters of drug into it. [Peter] And then these are pressurized… [Peter] to infuse over whatever certain amount of time… [Peter] the IV is supposed to infuse, so it’s… One of them infuses over 30 minutes. One of them is one hour. One of them is two hours. [Peter] So it’s a pretty nifty… [Peter] That is Mary’s preferred method of having them delivered. [Peter] Like sometimes IVs will be in a syringe where you push it in. [Peter] And occasionally they’ve tried to send us home with an IV pole and a bag. [Peter] It’s just a lot easier than having an IV pole and… Yeah. Going to the bathroom like during the night… I can just, if I’m hooked up, I just pick up my two things… and off I go. [Peter] So that’s our setup and so far it’s working. I’m so happy to be home. [Peter] Yeah, me too. I’m so so thankful. [Peter] I think this little guy’s happy to be home too. [Peter] And we’re just gonna keep resting and we’re gonna call that a day in the Frey Life and… [both] As always, we will see you tomorrow. Good night. ♬ Good night Ollie boy. See you tomorrow. ♬♬

100 Replies to “HOME HOSPITAL TOUR | IV ANTIBIOTICS AT HOME ? (8.15.18)”

  1. From the uk, your vlogs appeared on my YouTube feed. I decided to watch one and now I have watched around 15. I don’t have CF but I have chronic asthma. I know it’s nothing compared to what you have to contend with daily. I have never got so emotional watching anything like this in my life. But you two have really pulled on my heart strings, such a beautiful couple and there for each other through the trials and tribulations of normal life, let alone a life with what you two have to deal with is absolutely amazing. God bless you both ?❤️

  2. Yeah!! So glad you're home! You look great! I hope your recovery continues to go well for you! I love your blanket…where did you get it???????

  3. So happy you are home! Where do you get your comfy looking blankets that you are always wrapped up in? Love them!

  4. So glad that you are home and can recover quietly. Chin up Mary, you are doing great! Peter, you are awesome! Need to clone your spirit and attitude. Hugs to you both and smooches to Ollie.

  5. love your channel!!! question! Where did you guys get mary's beautiful teal blanket??? i want to get my brother who has special needs one!

  6. I’m a 15 year old an I just wanted to say that you and Peter are just wonderful! You have stayed so positive and I really admire that. God is good no matter! When ever I’m getting an anxiety attack I remember to just let Jesus take the wheel. ?

  7. Fellow medical nerd (and nurse) here. I love the idea of an alcohol filled cap for your line! I want our hospital to get those!!

  8. Anyone else see the orb at 2:26? Mary, you've got angels helping you heal for sure. 1st time in a Youtuber's video I have seen that.

  9. I'm so happy for you to be home too !!! Looks like you have a pretty good nurse there, Mary ! Good Job Peter!! Both of you try to get as much rest as possible.

  10. Can you make packs that are together for those early morning doses so that way you can grab and go. Thats what ive done before

  11. my domperidone for the gastroparesis is stuck in canada so my doctors are trying reglan until i can get my normal meds… here's hoping they work, since i just started my new job this week! sometimes health problems suck… but then ya'll always make my day brighter.

  12. Glad you're home!! How did the sea bands work for nausea? I'm thinking of getting them to help me with side effects of chemo. Thanks.

  13. Im glad you are all back home. It looks way more comfortable there than being in the hospital. I know you must feel a bit stir crazy after all that but remember to take it easy. Ive heard that pacing oneself is most difficult.

  14. Oh my goodness! You two will get worn out real quick with that busy IV sched. Do you have friends or family who could come in to help? Praying for you both.

  15. Yayyy! So happy to see Mary home! Question! Being a religious couple, I wanted to know your thoughts of LGBTQ rights? This is not to be argumentative , just to know your point of view.

  16. Hi Peter have you ever considering of been a nurse I think you would make a good nurse. That would be a great career for you because you have the knowledge and follow instructions easily of been a nurse

  17. You guys give me inspiration to focus on the positive and to redirect the mind when facing challenges! Glad to see your home! Love y’all!

  18. Sort of like your recovery house only it is a recovery room in your own house. xoxoxox Welcome Home Mary!!/ Peter and Olie.

  19. It is a plus for you when in hospital, that Ollie stays with you. Like if we go away etc., we have to board our fur baby. So pleased you are home, with no infusion pump clicking a way. I simply hate them. Through the night when a nurse comes in for obs etc., I always wake up. I am planning on using ear plugs and an eye mask from now on. Hospital is the last place you go in order to rest.

  20. Those curos caps (the green caps for the line) are awesome…we use them in the NICU for our babies (I'm a NICU nurse)…it is so nice not to have to worry about the caps that way…

  21. I think being at home now your recovery will speed up xxxx sending blessings from Cheltenham, Gloucestershire, England x

  22. The worse part about being in hospital is repeating over and over again name and birthdate. Your a trouper

  23. OMG those ballons are a life saver. My husband was on IV vanco twice at home before he passed. It was supposed to infuse over I think 1 hour. Well wide open it took more like 12. We were like this is not gonna work. They got him the balloons, so much better. He could just put it in his pocket and carry on with life. Still took longer than normal to infuse, but he wasn't stuck to pole the whole time. So glad you are home.

  24. Wow, I can't believe all the work you still have to do at home Mary! I bet it's more bearable in your own home though! ❤

  25. How's your poop that part cracked me up. I hate that question of all the questions they ask of me I wish that wasn't one LOL. So glad you're back home

  26. Five years ago my husband had a catastrophic illness. He almost died 3 times and was in the hospital 40 days. I brought him home to a regimen similar to yours. Feeding tube, drainage tube, pic line where I infused antibiotics. I crushed and dissolved meds. Saline flushes, heparin…. I had to weigh everything that went in and came out. Weekly trips to the pharmacy for all the supplies and drugs. He had thousands of mls of fluids drained out of him several times a week. Six months later my weak, scarred hero went back to work. Now I am chronically ill and they can’t figure out what is wrong. My hubby works all day and then comes home to do most all the housework and take care of me. God bless you both!

  27. I just want to say that the hustle for Mary declines, but chaos ensues for Peter. Folks don't know sometimes how vital caregivers are to living with chronic conditions, I pray he gives you both rest and strength to take care of each other. While we say thank you to our caregivers, most days it seems like a very thankless thing. God knows what all they do for us, and I hope they are blessed with everything for caring for us. I remember my 15 day hospital stay (my longest ever, thank God), but it felt like forever, I went and visited coworkers at work, went and got groceries and went out to eat, I slept most of the next day, but when you're stuck in the same room for weeks. It's heavenly to see something other than white ceiling squares. Bless you both, you remind me daily at how blessed I am. Keep it up kiddos!

  28. I know this has been a long hard hall for you guys and especially for Mary, but your videos are so informational. My knowledge of CF was limited to what I had seen on Movies and of course that was for from accurate. I do not have CF nor does anyone in my framily but this is just helping me understand the diverse needs around me. As always I am praying. God bless.

  29. Please do something worthwhile in Ollies name. 5 year old police dog being kept in animal care..A shelter. Www.freejester.com. can you imagine this happening to ollie??? This good boy is 5 years old. Helping creates Karma. Please help.

  30. I also I'm very blessed to have a good husband in that he has taken cared of me when I was very ill, however I remember feeling guilty that he had to consently be taking care of me. I'm struggling with that even though he, like Peter, does it with love and no regrets. Do you, Mary, ever feel guilty? If so please, tell me how you handle the guilty?

  31. So happy you’re home! As Dorothy from Kansas (The land of Oz) says…they’re’s no place like home. Love your home hospital set up. Now all u need is a little fridge for your bubbles.

  32. I'm so glad to see you both at home 🙂
    I totally understand the leaving hospital emotions, its just the build up of everything.
    That is one hectic schedule you've probably talked about it but if you haven't maybe consider asking a med savy friend, parent or home health nurse to come help every now and again so you can all get at least a few solid hours of sleep in. Rest up guys ?

  33. Aww. I wasn't the one in the hospital, but I remember when my grandpa was, I went to go eat an egg salad sandwich in the cafeteria and started bawling. 🙂 I'm glad you're home! I hope the rest of your in-home treatments go well, and that it goes by swiftly.

  34. So happy for y’all that your home! Hopefully this will be a quick recovery and IVs will fly by! Quick question, Mary where did you get that cart that you keep your vest and other stuff in??

  35. There are medication apps that are really helpful. You can input what it is, how often you need it, notes, alarms… And the apps seem to get better every year. You guys are doing fantastic. You are an encouragement to my day!

  36. do you ever do hydration? Glad you’re home, resting in your own bed is sometimes the best medicine. Thx for continuing sharing your journey, it brings a lot of encouragement.

  37. It's funny that I always feel really emotional leaving the hospital. I mean, I hate being there, but I don't know why I always get this flood of horrible negative emotions. I don't understand it, because I really do hate it!

  38. My mouth dropped when I saw your table? My son has a lot of medical supplies but not all that, so sorry you’re struggling with all this you are really an amazing couple.

  39. Would love a video just explaining on what needs to be done instead of most of it being filler stuff that has nothing to do with it.

  40. Mary I'm glad you are home you smile even though you don't feel good you all are wonderful im so sorry you have to have ivs

  41. There is no better feeling than being home on IV's versus than in the hospital.. Yes it's very exhausting but so so rewarding.

  42. I literally do not understand how you guys function on so little sleep, let alone how you do all the medical stuff with that little sleep without completely fouling it all up! Y'all are amazing. Peter, if you ever decide to stop being a minister (I hope that's the right word, I'm bad about that) you should go into nursing.

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