*HectorNeedsALungTransplant

Hector tested positive for influenza A 03/28/22

03/30/22 admitted into integris hospital 

03/31/22 around 6am intubation, picc line placed, blood pressure fluctuates but is continually low 60/40 heart rate 175 oxygen 87 percent. ECMO team Flys to integris to do procedure bc he wasn't stable to move. Then Flys him to Baptist hospital arrives around 4pm. Didn't see u until 11:30 pm waited in waiting room whole time. At midnight gas blood test was done and was clearest it looked so far but still critical. Doc told me statistics say 5 out of 10 make it out of this, maybe need dialysis as all your lungs,liver and kidneys have shut done. Doc told me your could lose a body part leg, fingers, toes, something as the arteries are constricted and aren't circulating blood correctly but everything is being done to save you. I'm not leaving your side!!!! 

04/01 was told you are diabetic and have been for about 3 months, thats why you are drinking so much water all the time and losing weight. You also have mrsa infection in your lungs . I learned you are O+ today, guess what so am I. It's 6:35pm you just got back from a cat scan. They say your blood is becoming thinner and they are giving you more platelets to help with that. All he could see so far from that cat scan was that your chest and lungs were still full. If he gets any other results back before he leaves he will share results other wise I have to wait for night team to let me know how your Lasix look to see of they are being constricted.They turned your lasik med off for now. The cat scan didn't show any blockage or anything that would concern them nor does it give them any idea of why your lactic acid is so high. 

9:37 pm They are pushing something called cetapin (spelling) they want to see this number above a 10 that is currently at 9 to help your blood pressure but it's in regards to the internal monitor near your heart. I've kissed you, hugged you, rubbed your face(the parts I can touch) and rubbed your head all day. I've told you I loved you countless times wishing I could hear your voice again and feel your touch. Right now this is the loneliest helpless feeling that I've ever experienced. I want u and need you I keep yelling at you to fight wishing to see something...anything ...a sign from u. Every time I talk to you, your eyes fill up with fluids liek your crying I wipe it away and pray and hope that your in there telling me you hear me.

9:45 pm They are moving your pulse ox to your head from your right hand to get a better reading. 

9:48 pm Now drawings abg and silencing the lung alarms. That means they are taking artery blood gas sample.

10:40 pm I just had to go get the nurses I heard a gurgling noise and the cuff was broke or something so they r getting a new one and then secretions started going out of your nose. I got made and asked why I had to get them no alarms sounded and my husband was choking on all fluids that you guys put in him. They got my baby fixed .

04/2 6 am they are putting pads on to shock you at 200 percent. Your heart rate went up to 199 when they rolled u to your right side to give you a bath. Your stats and oxygen looked good on your side so they elevated u to see if you would respond well and you didn't like it. They had to flatten the bed and then you were shocked 2 different times. I sat here praying over and over begging you to keep fighting. Finally you are starting to stabilize again but still very critical your heart went into A Fib. 

I got all your immediate family up and on their way to the hospital while they were shocking you. I didn't want the kids not to say goodbye if it came to that. It's not the text I wanted to send at 6am as they are shocking my husbands heart right infront of me but your mom, dad, Jessica, Denise, Jr, Monica all got to the waiting area by 7:30 this morning. I brought Jr back with me and prepared him for what he was about to see. I hugged him and held him as he loved on you and apologized to you for not being the son he should have been. He kept saying "please don't die" over and over again. As I hugged your son who grew to 6ft 1 some how he told me he loved me and was sorry. I told him to tell you to keep fighting and reminded him that you were a fighter. Everyone came back one by one to hug and love on you. I had to stay in the room to talk to your doctors and sign consents for treatment. They would tell me a million things they are doing and all the things that could go wrong and all I could think about was you and how I need you. I told them okay please just save my husband don't give up he's a fighter, hrs just being stubborn. Marco arrived a short time later and was allowed back shortly. He asked me many questions and I did my best to answer. He thanked me for staying by your side and all I could say is this is my husband how could I leave his side? More family poured in to the waiting area, Mike, Stacey, John, Otha, Garrison, Jack, your Amaparo, Maria, Hugo, Jose,

At 1:30 pm They rolled you down to the or to operate on you. They are putting a tube in your chest to help with blood flow to your heart and moving your ports from ECMO around a bit and giving you a larger tube in your neck to hopefully allow the blood to flow through your body freely and allow your heart to rest.

04/02 doctor just came up it, you made it through the surgery. It already appears that what they have done is working and his blood flow and oxygen is improving and his stats are starting to look somewhat better...we will still take it hour by hour minute by minute and he could be in ICU here for weeks even months at this point. Just keep praying there's progressive improvement.

6:30 pm your site continued to bleed and they couldn't get it under control so you went back down to OR.

10:30 pm got a call from surgeon says he was able to repair the site and is happy with the outcome. They warned me this is going to be a long road and I should leave and rest tonight. I told them I wasn't leaving your side until I knew you were going to be okay and make it through the nights. I'm not going anywhere!!!

2:40a.m. (4/3)-finally brought me back to your room after your last operation amd they were still working on you but I was able to sit with u. I looked at the wall and I saw blood up and down the wall, I guess they must of really had to control that bleeding if it was making it to the wall. Throughout the night your stats seemed more stable than ever which made me feel relieved somewhat. A few times your blood pressure dropped to 60/40 and they had to up your blood pressure medications but you were stable.

04/03 8:45 a.m. They just had me step out so they could do a sterile procedure in which they have a line put in through your lung and there could be a chance your lung would collapse, but he doesn't think it will and they will begin dialysis right now to lift the fluid from your body. The doctor did say your right arm looked very good and had great color this morning. I love you baby!!!

12:00pm Dr. Gadd is with dialysis just came in and said that you weren't producing enough urine and that's why you needed the dialysis. They are still unsure about your left leg and the outcome of it but are doing everything they can do save it. You won't be on dialysis for long term they say.

2:00pm my brother came down with Lillie to see you. It was hard on both of them, they both cried and choked up. Lillie told you she loved you for the first time ever today. She begged you to keep fighting for her and all of the kids as well as me. My brother couldn't believe how fast you went down. You have had an outpouring of support from friends family and extended family. Even though not many can come back to see you they have been in the waiting area waiting on updates from me. 

7:00pm shift change. Things are quiet for the most part today. You have done well babe I am so proud of you. They are doing a nurse change for shift in your room and they said you had been cardio verted 6 times in the last 24 hours last time at 1 am..so ummm they shocked you last night while I was in waiting room waitingto see tou after the operatingroom??? That's scary to hear.

11:20pm -04/03 evening update. There really is none. He's maintaining everything that was done yesterday and this morning. His body has tolerated everything thus far. Doctors have informed me that it may be weeks before I notice any visible improvements or changes in him. I still don't know when they will attempt to see how his body reacts and slowly start trying to wake him up. So updates may slow down a bit which is good in a way it means he's stable while still critical. I do believe whatever medication they are using to paralyze him will be the first that goes before they wake him up but again it will be weeks possibly. Hes still on full life support and his heart and lungs are fully supported and functioning because of life support only. 

04/04 5;30 a.m.

 

Well they just woke me up to sign another consent. They have to move his dialysis line that's in to his neck bc the placement is given them trouble. It's being done in his room like it was yesterday. Doc says it's better in his neck bc the access is cleaner less likely to have infection its currently part in his groin. So I'm in waiting area always a chance of a collapsed lung but his lungs are hard right now.

10;15 a.m. I'm still in waiting area so I walk my self back and your completely done and alone in your room. I questioned why no one came and got me and your new nurse didn't realize I was waiting bc no one told her. I was polite but upset. I came and kissed you and loved on you. They said there was no bleeding and you did really well. Your numbers look good considering all amd your body is resting. Jessica got her about 9am to sit with me so I finally ran home at 10:45am to shower for the first time since Wed. 03/30, that was a whole 6 days that I didn't shower but I washed liked a bird in the bathroom sink. I just couldn't leave you babe. I was back by 12pm and everyone said you didn't take time for yourself. Well I'm clean I need my husband that's all.

4/4 - today was relatively quiet babe. I'm proud of you! I was sent a picture of our baby by Monica about 6:30 tonight, she looked so sad and her eyes were heavy in way that broke my heart. I laid over you crying feeling torn as I have been with you day and night for 6 days but I know you would want me at home at night resting and with our kids, so I went. It wasn't easy I sobbed like a baby walking throughout the hospital and as soon as I got home. Azalea played with mommy for awhile and then I rocked her to sleep. She slept the whole night babe!!!! I called and checked on you 3 times throughout the night. They told me there were no changes and you were sleeping 😴. 

04/05 Tuesday 6:45a.m.

I just got to the hospital, your color and face look good to me. They are going to draw a gas line or something from your left arm bc your heart is working a bit hard and was dropping your oxygen levels a bit but not anything to be concerned about yet. Also your dad had to go to the hospital overnight for chest pains and trouble breathing, thank God he's okay apparently he was having a panic attack. They gave him something to calm him down and requested he take a few days off work. 

04/06 Wednesday 6:55 a.m.

I got to the hospital this morning and they had you hands tied down again. I was sort of excited to see that bc that means there a chance you will wake up and respond somewhat today. They took you off of all your blood pressure meds 2 hours ago and your holding your pressure wonderfully babe!!! Today they want to see if you can start to open your eyes and respond on command. I'm going to continue talking to you and see if you will respond to me.

9:45 a.m.

 

So they just called about the surgery/procedure a procedure at 1 this afternoon I had to give verbal consent over the phone I guess they recorded me allowing them to give him blood if he needs it and anesthesia . They said they will take me down to the OR with them and I will sit in a room where a monitor is and it's and not watch but be able to see him from a distance I guess.It sounds like after speaking with the doctor that they're just cleaning up the sites because that's procedure As it's been a couple of days so it's not anything that's happenedBut taking off the stuff in the bandage that's keeping it all together it could start bleeding again and that's why they're going down.

3:25pm and we are still un ICU

 They had a few difficult cases befor3 you.

 doc just came in and said like 30 to 45 mins and they will go down. He looked at him and asked a few questions about being down on meds and looked at me and said "that's good" and it was like a thumbs up were in the right direction feeling . 

3:33pm your doc this week came in either an older guy who is a doctor hut i believe started the ECMO years ago and a surgeon and said " this is amazing " you were the first person they combined ECMO machines on. Dr. Maybaver was blunt yesterday about your mortality rate but says today your color looks great amd your skin is soft still. He also was happy with your stats and actually said "he's more stable today than yesterday "! You have ECMO VBAA . 

3;50- they are doing an ultrasound on your heart and those doctors and surgeon come back in and start pointing saying "see look" and i hear them mumble something about your heart and how good the oxygen and blood are flowing. "Slighty better, Arteries look good". Pulmonary artery index of 3.

4:15 pm They finally walked out with you to do the washout. I looked over at the whiteboard and noticed you were 96.4 kg yesterday you were 98.9. That's about 212 lbs now. Your nurse came back up to the room to bring me down to OR waiting room so I could be called in and notified throughout your procedure and we got lost bc he didn't take me the back way through the hospital staff elevators he took me through public and after getting off on 3 different floors he asked a lady who looked like a nurse in the elevator what floor the OR was and she said I don't know I don't work here. It was funny bc you know me I'm blunt and I said you work here and don't know your way around lol. We had to go all thr way back up to the 6th floor and take the staff elevators to find you. The staff hallways and elevators are morbid. I didn't like that but it gave me a good laugh and I needed that. 

5:10pm

Your already done!!Okay so surgeon Dr. Bell was careful with his words but said "he's looking better today and hanging in there" he said he was able to wash out that wound/site and get it closed back up with no problems. He reminded me that this is going to be a very long process that there aren't going to be changes everyday. He said his lungs are starting to look somewhat better in certain areas. He reminded me to be patient. Then he asked about the kids we have and said you need your husband don't you? I sold of course! He said I've not seen someone in her with a wife as stubborn and head strong that will and understands how to advocate for her husband as much as u did, he said we couldn't get u an inch from him when he got here. I said you don't know my husband he's just like me and he goes ohhhh you guys are made for each other.

I learned also that MRSA is spread sometimes through sharing razors, towels or personal items. So once I get home I'm throwing away your razors amd getting u new ones, washing all towels again no sharing for days. I love you babe your doing amazing love. It's 7;15 pm and I'm heading home for the evening. You did amazing with your procedure and you are heading in the right direction. 

04/7/22 6:45am

Good morning my love 💓 I got in 15 mins before 7 am and your eyes were taped shut. My heart almost dropped but Erica the RN that took care of you says not to worry your eyes wouldn't stay closed and she didn't want them to try out. They had to come up on your blood pressure medications over night for a few hours but you are back down now. Erica showed me your ventilator machine and explained that you were taking deep shallow breaths on your own and you were trying to breath over the machine. Even though they are shallow and short your still fighting. No other big changes happening but I was told your foot isn't going to be the same on that left leg. You lost color and blood flow to that foot but babe YOUR STILL HERE!!!! In my heart and head I know that is going to upset you and at this point I don't know if they are going to take it or if it just won't work. My heart hurts for you and I know this will be hard for you but baby you are here and fighting hard!!!! I will never give up my love. Today Stephanie is your nurse, she is asking me questions about you such as why you had tape on your eyes today and I told her bc you would t keep your eyes closed and they didn't want them to dry out. She asked me what you go by and of course I said Hector but your mom calls you Ivan.

YOU HAD WITH ECMO -VBAA 2 returns and 2 drainage 

4:45pm-

It's hard to explain but you finally started to come to about an hour ago but not like u think...I was able to get you to move your head in my direction to the left but not right. You did that twice and again it's not a big head turn...I got you to blink once on command and I got you to move your eyes to look at my eyes and you starred at me for awhile while I talked to you and tried to reassure you it was okay..I just kept telling you what was down your throat while you starred at me bc I could see a bit panic...then you pooped twice and you seem to be sleep again now.

By 6pm you started being more alert here and there. You would raise your eye brows at me and I told you I loved you so many times but 3 times for sure when I said I loved you, you turned your head slightly and looked into my eyes and opened your mouth as much as you could and I believe you wanted to say you loved me. I told you it's okay don't talk, just rest. You continued to look into my eyes at times I felt like you weren't there, it was a glazed glossy look but other times I say my husband was there. I think I cried all day today and everytime I cried you looked at me with a confused but compassionate look and u just kept talking to you about what was going on and why I was so sad. I told you I almost lost my best friend multiple times. Today I felt mentally drained for many reasons, I kept getting onto nurses for coming in and not talking to you about what they were doing before they did it. I reminded them you are a person and you are starting to wake up, don't just pull my husbands gown or sheet up exposing him he is modest and that will make him uncomfortable! Talk to him don't talk over him as if he isn't laying under you while your talking about your weekend or night out last night it's rude!! Don't touch his wound sites that are oozing and then touch his neck sites with the same gloves, no you aren't practicing on my husband go find another guinea pig to get your medical hours since your still at UCO and finally to top it all off, Marco's ex just came up here and walked in to tell me she fucking sat with you when I stepped out and held your hand for awhile and then fucking asking about your medical info like who the fuck are you?!?!? She is so crazy apparently and is a receptionist part time at another integris center and used her badge to get in there. She looked at me and said :you probably don't know me, didn't you guys just have a baby"? Of course you know me and security came up bc I told her to get the fuck out. I even found out she came in after hours on my 2nd night home dressed in scrubs!!! Fucking receptionist don't wear scrubs!! Anyways as I kept telling you I was leaving for the night you would raise your eye brows and acknowledge me that way. I asked you many times to blink and or squeeze my hand, I couldn't really get you to do it on command but the looks you gave me got me through the night. Tonight I got home about 10 pm and of course Azalea was asleep already but m epsoso was starting to wake up and I couldn't leave you babe.

04/08/22 @ 1:30 a.m. I received a call requesting consent to plan a tube in your chest as they had just completed a chest x-ray and you had some air in a pocket cavity and they wanted to relieve the pressure from your heart. They told me it would be done in your room and be a sterile procedure. I gave consent. They called back at 2:35 a.m. to tell me it was completed and your tube was working.  

04/08-6:45 a.m.

I arrived early this morning hoping to se you wide awake and ready to talk but I knew that was asking alot. I kissed you and spoke softly to you until you opened your eyes and looked at me. You still seem confused about who I am at times but other times I can tell you know me, recognize me and it seems like you want to tell me something. I just rub your head and reassure you that I love you and I'm not going anywhere. I talked to you about how Azalea woke up so much last night and was fidgety. I was told you will go down for a CT scan at some point today. The doctors turned off all of your medications for sedation and paralytics on Tuesday 04/05 however your still not waking up fully yet. It's a bit overwhelming for me because some doctors and nurses are concerned that you havent woken up more and won't squeeze hands or blink your eyes on command, but I've noticed improvement even though it's slight. You respond to my voice by making eye contact with me, and will raise your eye brows when i speak to you or just talking to you. You have yawned 3 times today and haven't done that yet! Your right eye is opened more than it was yesterday and you got more alert this morning when I spoke even though it's only for a few minutes and then your back to sleep. I tell you i love you multiple times and 3 times yesterday you opened your mouth wider as to say it back immediately after saying it to you! I just sit and stare at you on and off until I notice your eyes are opening again and then I talk and reassure you until you calm back down and fall back to sleep. I think your still groggy from being on so many medications honeslty but they are concerned and that is why you are having a CT scan. 

04/09/22

04/10/22

04/11/22

04/12/22

04/13/22

04/14/22 87.2 equals 192 lbs 04/14/22

 

 

04/15/22

04/16/22

04/17/22

04/18/22 -7:30 a.m.

 Today when I arrived you were so angry with me! I put down my belongings and kissed your forehead like always. You pointed towards the window and i asked you if you wanted the ipad? You shook your head yes! You touched the picture I am, and then you pushed the angry fave over and over again. I said are you angry at me? You shook your head yes, and Insaid because I didnt come back last night right? You shook your head yes! You thought I was staying the night last night in the hospital with you. When I left at 6pm I told you I would be back after I ran home to feed and bathe Azalea as well as taken her 1st easter pictures and gave the kids their Easter baskets. I explained that I had called up here around 8;30 to check on you, and have your nure tell you I was still coming back up I was just having problems getting Azalea to go to sleep. Your nurse was Zach, he told me that he had just given you your bath and night time meds and you were asleep. I asked him to call me when you woke up so I could know and tell you I was coming but he never did and when I called a 2nd time he said you were sleeping good and I shouldn't worry about coming back up because you would probably wake up and not rest. I said okay but was sad and worried. You got over it quickly and began trying to draw letters and spell words on the ipad. I would ask simple questions and you would start drawing letters to respond. Today I asked you if what you were trying to tell me was about you seeing someone? You shook your head yes and drew an M, you wanted Mike to come see you, so I text him and Stacey and they came within two hours. You also drew an" I "and I asked if it was something you wanted to do, you shook your head yes and drew a line -------- similar to this and you were trying to draw an arrow, you wanted to go!! I told you babe I want to take you home with me so bad, but you aren't ready yet! You argued with me by shaking your head and shrugging your shoulders. You are so stubborn.

04/19/22 81.2 kg equals 179 lbs

04/20/22

04/21/22

04/22/22 83.3 up to 183.3 lbs

04/23/22 85.1 kg

 

 

 

06/16/22- Mircea Mihu, M.D. is your life saver! He went above and beyond thus far to save you. He signed the script clearing you to get fitted for your prosthesis today and he also informed me that today was his last day of work for a week but hw let the team know that he would be continuing to work with UCLA to get you into their lung transplant program even while off and he was the point of contact for them and prosthesis. Was informedby Chandler that Dr. NEIL would be by today 6/17 to look at left leg to make sure the small opening would be closing on its own and not in need of stitches or a few staples. Once cleared there is a script already written and signed by Dr. Mihu to begin fitting for prosthesis. 

6/18 -today you were 74.8 kg which is 164lbs..

06/20/22So I've noticed almost daily that he feels nauseous at some point in the day and and not always does he throw up but hes throwing up more often than not makes me wonder if it's big because hes lactose intolerant hes getting getting the stuff there was nose that's dairy or if it's cause hes on some of the antibiotics I don't knowBut today he had just done peeting and then will and then wound care came in and changed the dressing on his leg so we'll see if it happens tomorrow and what he was doing before

7/6/22

we just had a scare..basically his bypap machine was making a crazy high pitched alarm sounded and it meant his chest tubes were clogged not sucking and turns out the new respiratory guy had rolled his bypap machine wheel over just enough that it was sitting on the cord that supplies the airflow/oxygen to his chest tubes to suction...ughhhhhhhhh finally figured out what was going on!!!!!

7/11/22

Day 103 in the hospital 

I arrived after dropping Azalea off at daycare. You seemed very quiet and almost emotionless 😑. It hurts my heart when I look into your eyes and nothing is there. You were very confused today. You c02 and white blood cell count was a bit elevated but they drew blood to grow cultures and see if there's an infection your body ia fighting. I went and got your nurse who was Sarah today, she was neq to us and never been with you before. You told her we were in edmond right now at home. Pt and OT tried to work with you today and vet you to stand again but you didn't have the strength and just felt off bc you were confused. 

07/11/22

The doctors just came and told me tomorrow they plan on doing your valve surgery where they plug the holes in your lungs in the hopes it continues to heal you and if it works than you may not need a lung transplant or its may by you time for that down the road. They will wait 2 to 3 days to decanulate you and remove those big red tubes in your neck because you have been "off the blender " for about 10 days now. That means the ECMO machine is just circulating the blood through your body and you are oxygenating yourself! That's awesome babe you have come such a long ways!!! Later today they are going to take you down to RT which is radiation and reinsert your chest tube that is currently left bc it's come out a bit. You also are supposed to go to CT to make sure there's no infection growing in your lungs.

07/12/22

Long story short infectious disease doctor just came in And thinks that there is a bacteria growing that looks like MRSA again and I let her know that the long doctor said he wouldn't do the procedure today if it looked like he was growing bacteria so she just stopped him and hes going to look at the cultures..so he might not have procedure...waiting to see what he says.Says.

They are starting procedure now..I'm in waiting room ..they don't know how long it will take but somewhere around 1.5 hours....after about an hour the lung doctor (kingry) says the attempt was Unsuccessful..basically told me to my face "he was gonna lay there and die" this isn't an option for my husband and I thanked him for his attempt and politely told him I was done speaking to him.

07/13/22

Azalea had her 2nd attempt to having tubes placed this morning at the same hospital you are at this time. She's done and everything went great. They said they were so infected and he drained the puss all out and he wouldn't have taken adenoids out bc they were normal and he thinks it's allergy related...umm diary like I've been saying ...but we are left recovery and now r in the waiting room to be with you now. They moved you out of your room today to visit with Azalea after her procedure for a bit so you could see her yourself and make sure she was okay. They cleared the whole waiting area for us. You were a bit confused and new her for the most part but were a bit confused on what was going on. Azalea was a little bit fussy but was happy to see you, we had to leave early so she could rest and your chest tube pump stopped pumping and sucking (the machine died and didnt have battery left) so they had to get you back to the room pretty quick.

I came to check on you later this afternoon around 3pm because you were super anxious saying you can't breathe, and were confused. They are trying to get you off blender again after your procedure yesterday. When i walked in you were chewing your nails and just anxious your RN said perfect timing to me so I rubbed your head, beard and talked to you until you fell asleep.

07/14/22

 Azalea began puking everywhere all the sudden. She woke up crying in her sleep and I thought it was her ears so I put those ear drops in from her procedure and then I gave her Tylenol and she threw it up.

07/16/22 7:30 a.m.

The hospital just called me and they were trying to update me on what happened overnight to you apparently. I told them to wait till I get there as i waa driving up there already. I was informed you were on pretty much full support again. I am pissed because no one called me through out the night and they know by now to call me whenever anything changes with you. I was supposed to pick Caiden up from church at 12 as he has been at camp for a week today. I had my mom pick him up for me. At 9:30 a.m. Hrt rate 89 blood pressure 85/53 oxygen 94. I was informed we weren't moving you or your right arm due to a possible blood clot so PT and OT came in and attempted to work with your right leg and I refused as if we aren't moving the right arm for possible blood clot then you aren't moving the right leg for the same reasons until we get the results back. They looked at me like I was crazy. I feel like I have to always protect you.

At 1pm you had an ultrasound on your right arm and leg. You have a pseudoaeurysm. They said it's not something to be super concerned about and is safe to move him. They are going to give you dietetics to bring fluid off.

7/17/22 Sunday

 

 

 3:30pm hospital just called me, I have to go backup there, they're about to try to take you off of the blender again and so you are going to have to oxygenate yourself and they need me there so you don't "freak out" in your words. 

07/18/22 Monday

You keep asking me if we are by a staircase. You say many times " I keep thinking I'm by a staircase " it's freaking me out to be honest. The only thing i can think of is a staircase to heaven. 

07/19/22 Tuesday 

I brought Monica up today around 4:30, you asked to see her today so I ran home and grabbed her. You had a good visit with her and were pretty coherent and less confused today.

07/21/22 Thursday 

Today at 10 am you got to see Azalea for your weekly visit with her. It went pretty well and you were in good spirits. I took her to daycare after your visit and by the time I got back things had changed. At around 12:30 pm you were losing it saying I can't do it anymore, take me outto the pasture, im in to much pain, I'm a piece of shit and worthless 😕 you deserve better than me. You won't let them clean you up because you had pooped and kept telling everyone to get out, i just want to be alone with my wife. 😭 apparently you told the nurse like 20 times to shoot you, and you were over this and other shit when I was dropping baby off at daycare.( Hannah was your RN today and the same and only nurse who has previously pushed for you to be on depression and anxiety medications).

I spoke to you a bit about what you wanted and if you were really tired of all of this. After speaking to you i now know you arent tired of fighting you are tired of the pain and not being heard or listened to again. I have been telling everyone caring for you that alot of this anxiousness is stiming from your pain not being under control. Ive said multiple times that your dose of oxycodone isnt helping the same as before and you are in constant pain, and feel like nobody can hear you or even listens to you unless i am here to speak up for you. So when i leave you become more anxious. I feel like the APRN here today got attitude with me and was like arguing with me about what I know and have seen from being here with you everyday for almlst 4 months saying Xanax isn't going to cause a reaction this bad especially at that low of a dose. I'm like yes it is, when he's off the blender to he acts like this especially when his C02 is high !!! They drew his blood gases and his PH was to low apparently too

Also there has been many times recently where your trech has popped off while sleeping and at times coughing, the most recent time this morning at shift change and when it popped off you couldnt see your RN or anyone in the hallway for that matter so you begin to get anxious and scared and as your oxygen drops your machine doesnt sound the high pitched alarm until you oxygen level hits around 78. At that time you have already started panicking, breathing rapidly and becoming more anxious. Its a valid concern and scare. There has been recent times where someone coded in another room and i was sitting next to you, your trech popped off and the alarm began sounding in that high pitched alarm and no ome was in the halls or came for sometime and I had to hold your trech near your airway (where it clips) until help arrived so you could continue to get air. I dont know how hard to push and i dont take the chance bc i dont want to hurt him or something doing it. Also moving him from the bed to the recliner the canaopy wasnt put on right one time and i had to stop and correct it as it wasn't crossed between legs it was just under his butt and he would have slid out had i not stopped them that day. At 4pm you met with a psychiatrist over an iPad who evaluated you for depression. (I wasnt present as i was told i had to step out during what turned out to be less than 2 minute evaluation with your RN Hannah in the room only) You agreed to be put on Prozac but you really wanted a counselor (which is what we both had said prior to the eval) to help process the trauma your body has been through and learn how to cope with a lifestyle change. When I was brought back into the room that psychiatrist basically said your husband's depressed, he agreed to take Prozac and the call ended. I was upset because I wanted to advocate for you and inform the psychiatrist about your nightmares but wasnt given the chance or listened to. I was frustrated and so were you.

07/22/22

In the hopes to get you more involved with your normal everyday life Stacy had me grab a new tablet from the office so that you could watch the calls coming in and be involved in the sales and chat. Once it was picked up and set up you sent a 🖕emoji and most responses from all the old work guys were laughing and excited to hear from you. 

07/24/22

You appear to be doing really well mentally and feeling pretty good physically..pain is finally getting under control. Today when they just moved you into the recliner you said "weeeeee".

07/25/22

I was told today that you are going to have a procedure tomorrow at noon to try to open an artery to improve blood flow to your left leg as there is a small section of dead tissue and a wound that isnt healing, if it doesn't work they may try and use maggots to eat the dead tissue away and sounds like they use it alot. If those options dont work you may need an above the knee amputation. 

7/29/22

Chest tube was placed on your left side and with in 10 mins your fluid that was trapped in your lung area went from 0 filling the tube to over 200.

08/16/2022

Above the knee amputation started at 8:30 surgery com