Tuesday, July 22, 2014
ICU photos
ICU
Its been a week. Hands down the longest week of my life. Maybe I just have a skewed perception with what a hard week is and maybe it has been too long since Ben's diagnosis to think that this week has been even harder than that week but it certainly feels as though this week has overshadowed any challenge we have ever faced.
Last Friday Ben was admitted to the hospital with a fever and possible infection. They weren't really sure what it was just that he was sick and we were also still diligently trying to figure out if the trouble he has been having with breathing is related to something we could actually do something about. There are lots and lots of long medical explanations for exactly what it is that they were looking for but at this moment I don't care to go into the long details. They seem minor and slightly irrelevant. Sufficient to say, they think he has COP which is basically a form of pneumonia that occurs between the avioli and lining of the lungs and makes it so his blood is not being properly oxygenated. Well after having him admitted they chose to have him get a lung biopsy. The lung biopsy was suppose to happen on Monday, then they just made Ben super miserable for the whole day before telling him that surgery was not going to be until tuesday night. To put it nicely I was a very pissed off wife by the time that decision made it down to us! Ben was miserable and it was for NO reason!
Tuesday Ben spent the day at the hospital himself. His mom came and hung out while he went into surgery and then I was there when he woke up and spent a few hours with him that evening. He was in a lot of pain but they gave him some good meds to help counteract that.
Wednesday was exhausting. I mean honestly I don't even remember everything about the day other than spending the afternoon with Ben who was doing fine. He was in pain and surgery was definitely catching up to him I guess there is something to be said for having 6in of your lung cut out and then having a large tube sticking out your side.
Wednesday night was when all hell broke loose. Apparently Ben had a very very hard night. He was getting sicker and sicker and it got so bad that Thursday morning I got a phone call from his nurse telling me that they were sending Ben to the ICU to be put on a ventilator that could breath for him. That was the worst phone call of my life. In a state of utter shock I mumbled some form of thanks and hung up so I could haul the kids to school. I remained in said state of shock until I got a phone call from Ben who's only words that he could muster was "I can't breath, they are putting me on a ventilator and I just wanted to tell you I love you one last time." At which point I had a total melt down. I called Ben's mom she and his Dad went right to the hospital, I cried and cried and cried. I made more miserable phone calls and left Parker with my friend Christine who thankfully said to just leave him indefinitely and that she would take care of school pick up for me as well. At that point I went directly to the hospital making phone calls as I drove to let people know who had to know right away.
I have to admit that walking in the room the first time was one of the worst feelings in the world. I knew to expect the worst but nothing really prepares you for that sight no matter how hard you try to prepare.Ben has tubes everywhere and looks terrible. He was also not paralyzed yet so his body was desperately trying to still breathe on its own which of course was making it harder on the machine and on him. His body was literally thrashing all over and his entire chest was sucking into his rib cage as he tried to get oxygen. I never thought it would actually be a relief to see my husband paralyzed but that day it was. His body quickly stopped shaking and shuddering the entire bed as soon as the medication kicked in. I was brought some level of peace that at least at this point they would be able to let his body rest a little and not have to work so impossibly hard to get oxygen and air! Diane and Bryan were both there and thankfully that was a huge help for me I really needed that moral support and then they were also kind enough to leave me alone for a little bit too which helps me as well! I don't know what it is about the hospital but there are times when the only thing I want is to selfishly spend every second with him and not share any of his time with anyone else. Maybe it is just the premise that hospitals are a place where your life is on the line and if something is going to happen I don't want to miss it and I don't want to share it! strange. very strange.
Anyway, the rest of Thursday was a constant bustle of nurses and doctors. I don't remember all the details but I know they often tried to talk to me and see if I had questions but the sense of shock was enough that words and questions completely evaded me. One of the phone calls I made that morning was to Ben's manager at work who was kind enough to show up at the hospital and come give me and Ben some extra support! It was a huge help! Not that I hadn't been crying enough but when I saw John, Brad, and Steve walk in the door I instantly burst into tears! I needed that so bad I needed to have their sweet unique love there to remind me that this is a fight worth fighting! I cried and then we stood around and laughed for a while too. It was nice to have someone there to make me laugh a little when all I wanted to do was cry. It was interesting too to sit and watch Ben while they were there, I swear if he would have been able to move he would have been right in the middle of those stories we were telling about him and making sure they got all the good details about the silly pranks they play on each other at work! It was a huge blessing to have them come talk with me about who he is not so much about what the current situation is.
Thursday afternoon and evening the kids went to Mal and Evan's house to play and boy did they ever have a blast there! I got frequent pictures texted to me of all the fun things they were doing! Then they went home and Lindsay put them to bed for me. I stayed at the hospital that night and didn't sleep a wink. I forget that when a patient is in that bad of shape the nurses leave all the bright lights on and bustle about the room at high speed all night long Ben was also seen that evening by all of the doctors at once. It was completely overwhelming and I had a full on non-functional panic attack being alone and having everyone rushing around him like he was going to die that very minute. It really freaked me out and I was unable to think clearly enough to ask any questions so I just sat huddled up in the corner trying not to cry or throw up!
That night he also started to take a turn. It was a huge relief to have morning come and have the nurses telling me they were successful in weaning him off of 1.5/3 of his blood pressure medications. His blood pressure was way way too low and so they were working really hard to get it back up! But to see him making that kind of good progress all in one evening was a huge deal! They also managed to get his vent turned down to only 80% oxygen instead of 100% and were talking about taking him off the paralyzing medications and possibly doing a 'sedation vacation' where they allow him to wake up a little and possibly try going off the vent as a trial wean.
So Friday... Friday morning was fantastic! I was relieved to see any progress in the right direction and ecstatic to see it in such a huge way! Ben likes to show off that way! So I went home for a few hours of sleep and a shower. Both were so desperately needed that I don't remember anything! I went back to the hospital after that and Lindsay had the kids for me. I arrived just in time to see them waking Ben up. I walked in the room and he was opening his eyes for his mom when she talked to him and then as soon as I walked in and said something he gave me the greatest gift I have ever been given! He turned his head, opened his eyes and looked right at me! Such a huge relief! They got around to doing the trial wean off his ventilator but it did not go well. You could see him really struggling, he started coughing and throwing up (nothing because his stomach is empty). It killed me to watch him be in that much pain! I wanted to rip the tube out of his mouth myself I'm pretty sure it would have been a good safety precaution to restrain my hands like they do his so he wont rip it out! After the wean didn't go so well they put him back under the sedation but that took a while to make that happen and he was having a really hard time! It really broke my heart to watch him suffer so much. After that eventful afternoon they said they were just going to keep him sedated and let him rest from the evening. I was glad to see him rest. his lungs are fighting more than I would like to see but I also know Ben well enough to know that he would rather do this himself but is willing to submit to what has to be done. That was one other really very reassuring thing. I could tell Ben that he was fighting the machine too hard and he would calm right down and let it work but he wouldn't do that for other people. I loved that tender reminder that our souls really are bound together. We belong to each other and that is how it is suppose to be!
Friday was also the day that our Family, ward and many many other countless people had a group fast for Ben. They all agreed to go without food and water for the day and pray that he would be healed. I know beyond any doubt that that act alone is what blessed us with such amazing progress that day. It was so tender to hear of the youth who went without in an innocent and heartfelt desire to bless my husband and my family. I was so touched!
Today is Saturday and this day is quiet so far. Ben is retaining a lot of water in the wrong spaces. His kidneys are pissed off and just not doing what they are suppose to do. For now they are looking at other options for trying to let them get the little boost they need to start working better but we will see how that goes. If it doesn't work they will put him on dialysis to get his blood filtered out the hard way! They will make a choice on that around noon today so say some prayers for us!
Saturday afternoon they decided the dialysis was going to be a must. It was kind of a bummer and a huge relief all in the same moment. I want to see him get some of that swelling down! They did warn me that it wouldn't be a real instant process that he still has a lot to go and that the dialysis wont specifically do that but it should help some. Saturday night I finally went home and slept at home. I was beat tired and slept great. Diane stayed the night with Ben and said it was a very quiet and uneventful evening. But they did not get the dialysis started until about 11 PM thanks to so many delays but they did get it started. The one disadvantage to dialysis that I was not prepared for was that it apparently makes the patient super cold!
Sunday morning Ben's core temp was only 95 and so he was freezing they tried warm blankets and a terrible looking hat. Ok the hat wasn't terrible at first but whoever made the hat didn't finish it off so after twice of taking it off it was all wrinkly and looked more like a bonnet than a hat. I couldn't take it so I whipped out a good looking orange and grey hat to keep him warm so he did not have to look so silly! I have to admit that he looks so much better when he is snuggled under all the blankets for some reason it just brings a great sense of peace to my heart! We did eventually get his temperature up to 97 by the end of the day thanks to putting him in a bear hugger (its a cool blanket that has hot air that blows through it to help keep him warm)!
Sunday night was also quiet they are continuing with constant dialysis for the next few days then will evaluate his ability to tolerate it in shorter intervals pulling more fluid off at once. Vent weans have changed drastically since the first one we tried where they tried to just cold turkey him off the ventilator and now they are doing it in much slower and smaller baby steps. At some moments I am glad they are letting him rest and then at others I just want to scream and beg them to let me talk to him and get him out of here and just make it happen faster. But then I have to remember that this is just part of being in an ICU there are lots of moments of rush and others that are slow and steady just waiting and waiting for what feels like forever!
Sunday evening I also had the privilege of hearing from Alayna's teacher that the kids in her primary class prayed for 'Alayna's daddy' completely unprompted which is really touching from a class of 4 year olds!
Monday was another normal day. I honestly don't remember most of it at this point seeing as how a few days have also gone by. He had ups and downs. Here is what information I posted about the day on facebook: Today was a little bit bumpy. Ben Merritt has been struggling with his heart rate and his breaths per minute (he breathes too rapidly). Thankfully just a few minutes ago they were able to make some adjustments to the vent that instantly gave him some relief! I was very pleased because it was exhausting to watch him struggle so much for so long.
We attempted to get him to wake up today for a little bit but were unsuccessful he was pretty determined to just keep sleeping! So tomorrow we will try again and see how he is fairing with all of the changes we have been making to his settings. The Dialysis is still going well even though some changes had to happen due to low blood pressure for him again. We are hoping that tomorrow will go better and that we will see him maintain his new found comfort in breathing!
Yesterday's update:
Sorry it took me until today to do this, Ben's day was up and down yesterday. He had an hour or so of scaring the crap out of his nurses and doctors because his breathing and heart rate suddenly skyrocketed. But once they got him calmed down with more sedatives he was fine the rest of the day.
His trial wean from the vent was a total flop he lasted about 5 minutes before his vitals freaked out on us so they said they will try again tomorrow.
They are working on changing which kind of sedatives he is on and will do another round of dialysis tomorrow morning!
Then Wednesday:
Thursday was the best day of the week... or so I thought this was the best day. It was a day full of mixed emotion for me: Here is the facebook update:
Best news of all!!!
Ben got off the ventilator today!! They just barely pulled it out and he is my hero! One week of hell is worth seeing him breathing on his own and looking at me and responding to me! This road isn't even close to an end yet he will still have to be in the hospital and ICU for a while until he stabilizes but for now I am celebrating in this giant victory!!
It really was a short and sweet little post but then the reality of exactly how sick he is dawned on me. I was no where near mentally prepared for how hard it is to wake up and breath on your own after being on a ventilator for a solid week. His body refuses to move and he cant talk at all because the vent tube essentially splits your vocal cords in two and then you just have to wait for them to come back together again which usually takes a few days. Ben started out that day just fine being off the vent he was a little loopy but nothing that really concerned me. The day progressed and Ben's loopyness got aggressively worse. I thought it would be alright he just needed some rest and I know we really pushed him over his limit by asking so much of him right after he got off the ventilator. I was so desperate to hear his voice again and to know that he was still in there an alive that I didn't even consider how difficult it was for him and how his body would react. That night Ben was terrified of falling asleep so he ask me to stay awake with him. I managed to stay awake most of the night but there were a number of times he nudged me to wake up after I had fallen asleep. It was hands down the longest night ever!
Friday was another long day. I was tired and had spent 90% of the day just trying to understand Ben and help him figure out what it was that he needed. He hit a point during that day that he just didn't like me. There really was no logical explanation for that but boy he said some things that were so funny you couldn't contain yourself and other things that were just cruel. Ben became completely possessive of everyone. He didn't want anyone to leave the room, he insisted on talking about no one but himself and he was dead set on getting himself out of there. He didn't really want me around by that point because they had attempted to place a feeding tube and it failed so he had a very child like reaction that it was my fault for letting them try. After the first attempt had ended up in his lungs, not his stomach, I told them they couldn't try again that night. The next morning they tried again and failed a second time and Ben by that point was aware and vocal enough to tell them himself that he refused to have it placed again. I cried. I cried a lot because in my heart of hearts I felt like I was personally torturing him. I have no idea how mom's of little kids ever get through this kind of thing because it is horrible to watch the ones you love suffer so so much! Diane stayed at the hospital all night that night. She ended up being up all night long with a very delusional version of Ben who had officially been completely lost to us by this point.
Saturday was horrid. If I thought Thursday and Friday were hard Saturday was far far worse. I was still beat tired. Something about the inability to sleep when your spouse is in such life threatening position and being terrified that he was never going to pull out of this delusion and I would be married to a man who no longer wanted me and could hardly remember who I was. I was horrified at the thought so sleep evaded me for yet another night. But Saturday morning when I came back and took over for a Very exhausted mother I encouraged my love. Bryan stepped out into the hall to explain how bad it was getting before I even walked in the room. It's a good thing too because I don't think I could have handled that shock without a bit of warning first. Ben was a beast. He was mean, determined and to use a quote he used himself "Stubborn as a Mule". I cried a lot that day. I begged him to sleep, to rest his eyes to just be quiet for 10 minutes. But no, that was not going to happen. He was dead set on a few random things. #1- his puls-ox was Malory's and we needed to mail it to her. #2 He couldn't breath because I turned the oxygen mask (that was behind him not on him) off, #3 Someone was trying to tip his bed over while he was in it, #4 There were cameras in the ceiling that let the doctors watch him so he couldn't escape #5 "that's not the point" "that's not the whole problem!" "stop interrupting me" "your not listening" "But I didn't get to tell __________ my kids names!" all of those were incessant quotes Ben used in his constant non-stop jabbering. He also read every sign on the wall and apologized for everything from being slow to being mean to us. By the end of the day I was a bawling mess. I begged him to sleep, I held his hands down, we had tried every medication we could to knock him out and none of them had any effect except to piss him off some more. That night I tried to sleep. I huddled in the corner and listed to him talk to the wall, ceiling, nurses, and every other object in the room. I silently cried. My heart was broken and I was terrified. Midnight rolled around and Ben suddenly got way worse. All his vitals went nuts and we couldn't get them under control so they decided the best thing they could do for him was to sedate him and put him back on the ventilator. I felt horrible. I had prayed just hours before begging my Lord to please let him sleep no matter what it took, I know being intubated was an answer but it wasn't exactly the answer I was looking for. After that I took a sleeping pill and drifted at some point in the wee hours of the morning into a dreamless but restless sleep.
Sunday, I wish I had words for how I felt that day. I don't. Hailey came from Florida that morning they came to the hospital to sit with Ben for a bit. I gave up that day. I'm not proud to admit it but that day my soul was aching so much I quit. I quit wanting to live or wanting to fight anymore. I needed a break. I had been in that hospital for two weeks praying and hoping that the worst was over and it never seemed to hit that point it always seemed the worst was just beginning. So that night I went home. I went to my parents and picked up my babies that I had not seen in almost a full week. I ask my dad for a father's blessing which I was very thankful to receive and then I went home.
Bishop and my home teacher came over and brought me the sacrament that day which was very much needed. I truly felt the power and spirit of that ordinance in a way that I have never felt in my life. I was touched and changed for the better. Those poor men had to sit there and listen to me cry about my life but they didn't seem to mind in the end.
I called my mom that night after they left and ask her to come stay with me. I can't tell you how lucky I am that I can call my mom and say "Mommy, I need you" and she will jump in her car and be there for me in a second. It meant the world to me to be able to sit and cry with my own mom and have a chance to be a little girl for just a moment in time when I already feel so weak and venerable. My mom is the greatest gift I have ever been given and I pray that I can be half the woman she is and that I can raise my own children to be as amazing, strong and faithful as all 8 of her children have turned out to be!
Monday morning I did not send Eliza to school. She had a tummy ache and I didn't want to send her anyway so it was a good excuse for me to keep her home and just be with them. We played games, watched movies and read lots of books. I kept up with Ben and the lack of changes for him for the day but mostly I allowed myself the day off from the hospital and from all the stress there. I wish it would have been more effective in reboosting my ability to cope in the long run but it gave me a boost I needed. My visiting teacher came over that day and we chatted for a few hours. She gave me a ' Brave Girl Basket' that has lots of little gifts for me to open whenever I need to feel brave. It's a very sweet thing I think I will pass on to someone else one day.
NOTE:
I stopped writing at this point, I wish I would have continued a daily update here but I did not keep up with that so from here I will be adding my facebook updates and side note memories of this experience.
March 4- I am sorry for all of you who hang onto every update and that I have left you all hanging with the last news that Ben was placed back on the ventilator. The past few days have been relatively uneventful. Ben is on a lighter sedation this time around with the ventilator and he is more responsive which is nice. He also seems better able to sleep and rest with this round of being on the vent.
They did another brocoscopy on Sunday to see what exactly suddenly got worse in his lungs but we have not gotten specific results. They also did an EKG to see why his heart rate suddenly dropped so low as well. The cardiologists said that they can't find any specific reason but there are a few abnormalities on that test. They will continue to monitor that.
As of yesterday it was an uneventful day, He saw a physical therapist that he responded well to and also had a massage which helped him relax some and rest a little better. His night was good he slept!
Thus far today they have turned down the settings on the Vent to the lowest settings they use before taking you off the vent in hopes that possibly tomorrow they will be able to take it out and hopefully never have to put it back again! As for myself after the 12:00 AM mess of Sunday morning I accepted relief from Ben's family and have not personally been back to the hospital since Sunday evening. I have instead been trying to regroup and have some form of normalcy with my children at home. The break has been much needed and I now look forward to getting back to the hospital to check in and see how he is doing! Thank you so much for the continued prayers we feel them every day!
By the time I wrote this post I was back to functioning. I was a hysterical mess before that. The few days of pretending that my life was something normal was a huge relief to my mental state. I was thankful for Hailey who spent most of her visit here just being in a hospital room with a less than responsive brother that she loves more than words can tell.
March 5- Today was an excellent day! I spent the night in the hospital last night and today we hit multiple milestones!
1- no more ventilator!
2- removed his dialysis cath from his neck!
3- chest tube came out too!!!
4- they successfully placed a nasal feeding tube while he was sedated so it was not a traumatic as the last two attempts.
So he is now down to only 2L of oxygen and his voice is coming back a little bit at a time. Now the hard work for him will begin of regaining his ability to eat, and walk again! Thank you again for all your prayers and support!
April 1- GUESS WHAT! Ben Merritt got to come home today! We are so excited to have him in the comforts of home! There is still a lot of work to do to rebuild to where he was. But he is HOME!
Last Friday Ben was admitted to the hospital with a fever and possible infection. They weren't really sure what it was just that he was sick and we were also still diligently trying to figure out if the trouble he has been having with breathing is related to something we could actually do something about. There are lots and lots of long medical explanations for exactly what it is that they were looking for but at this moment I don't care to go into the long details. They seem minor and slightly irrelevant. Sufficient to say, they think he has COP which is basically a form of pneumonia that occurs between the avioli and lining of the lungs and makes it so his blood is not being properly oxygenated. Well after having him admitted they chose to have him get a lung biopsy. The lung biopsy was suppose to happen on Monday, then they just made Ben super miserable for the whole day before telling him that surgery was not going to be until tuesday night. To put it nicely I was a very pissed off wife by the time that decision made it down to us! Ben was miserable and it was for NO reason!
Tuesday Ben spent the day at the hospital himself. His mom came and hung out while he went into surgery and then I was there when he woke up and spent a few hours with him that evening. He was in a lot of pain but they gave him some good meds to help counteract that.
Wednesday was exhausting. I mean honestly I don't even remember everything about the day other than spending the afternoon with Ben who was doing fine. He was in pain and surgery was definitely catching up to him I guess there is something to be said for having 6in of your lung cut out and then having a large tube sticking out your side.
Wednesday night was when all hell broke loose. Apparently Ben had a very very hard night. He was getting sicker and sicker and it got so bad that Thursday morning I got a phone call from his nurse telling me that they were sending Ben to the ICU to be put on a ventilator that could breath for him. That was the worst phone call of my life. In a state of utter shock I mumbled some form of thanks and hung up so I could haul the kids to school. I remained in said state of shock until I got a phone call from Ben who's only words that he could muster was "I can't breath, they are putting me on a ventilator and I just wanted to tell you I love you one last time." At which point I had a total melt down. I called Ben's mom she and his Dad went right to the hospital, I cried and cried and cried. I made more miserable phone calls and left Parker with my friend Christine who thankfully said to just leave him indefinitely and that she would take care of school pick up for me as well. At that point I went directly to the hospital making phone calls as I drove to let people know who had to know right away.
I have to admit that walking in the room the first time was one of the worst feelings in the world. I knew to expect the worst but nothing really prepares you for that sight no matter how hard you try to prepare.Ben has tubes everywhere and looks terrible. He was also not paralyzed yet so his body was desperately trying to still breathe on its own which of course was making it harder on the machine and on him. His body was literally thrashing all over and his entire chest was sucking into his rib cage as he tried to get oxygen. I never thought it would actually be a relief to see my husband paralyzed but that day it was. His body quickly stopped shaking and shuddering the entire bed as soon as the medication kicked in. I was brought some level of peace that at least at this point they would be able to let his body rest a little and not have to work so impossibly hard to get oxygen and air! Diane and Bryan were both there and thankfully that was a huge help for me I really needed that moral support and then they were also kind enough to leave me alone for a little bit too which helps me as well! I don't know what it is about the hospital but there are times when the only thing I want is to selfishly spend every second with him and not share any of his time with anyone else. Maybe it is just the premise that hospitals are a place where your life is on the line and if something is going to happen I don't want to miss it and I don't want to share it! strange. very strange.
Anyway, the rest of Thursday was a constant bustle of nurses and doctors. I don't remember all the details but I know they often tried to talk to me and see if I had questions but the sense of shock was enough that words and questions completely evaded me. One of the phone calls I made that morning was to Ben's manager at work who was kind enough to show up at the hospital and come give me and Ben some extra support! It was a huge help! Not that I hadn't been crying enough but when I saw John, Brad, and Steve walk in the door I instantly burst into tears! I needed that so bad I needed to have their sweet unique love there to remind me that this is a fight worth fighting! I cried and then we stood around and laughed for a while too. It was nice to have someone there to make me laugh a little when all I wanted to do was cry. It was interesting too to sit and watch Ben while they were there, I swear if he would have been able to move he would have been right in the middle of those stories we were telling about him and making sure they got all the good details about the silly pranks they play on each other at work! It was a huge blessing to have them come talk with me about who he is not so much about what the current situation is.
Thursday afternoon and evening the kids went to Mal and Evan's house to play and boy did they ever have a blast there! I got frequent pictures texted to me of all the fun things they were doing! Then they went home and Lindsay put them to bed for me. I stayed at the hospital that night and didn't sleep a wink. I forget that when a patient is in that bad of shape the nurses leave all the bright lights on and bustle about the room at high speed all night long Ben was also seen that evening by all of the doctors at once. It was completely overwhelming and I had a full on non-functional panic attack being alone and having everyone rushing around him like he was going to die that very minute. It really freaked me out and I was unable to think clearly enough to ask any questions so I just sat huddled up in the corner trying not to cry or throw up!
That night he also started to take a turn. It was a huge relief to have morning come and have the nurses telling me they were successful in weaning him off of 1.5/3 of his blood pressure medications. His blood pressure was way way too low and so they were working really hard to get it back up! But to see him making that kind of good progress all in one evening was a huge deal! They also managed to get his vent turned down to only 80% oxygen instead of 100% and were talking about taking him off the paralyzing medications and possibly doing a 'sedation vacation' where they allow him to wake up a little and possibly try going off the vent as a trial wean.
So Friday... Friday morning was fantastic! I was relieved to see any progress in the right direction and ecstatic to see it in such a huge way! Ben likes to show off that way! So I went home for a few hours of sleep and a shower. Both were so desperately needed that I don't remember anything! I went back to the hospital after that and Lindsay had the kids for me. I arrived just in time to see them waking Ben up. I walked in the room and he was opening his eyes for his mom when she talked to him and then as soon as I walked in and said something he gave me the greatest gift I have ever been given! He turned his head, opened his eyes and looked right at me! Such a huge relief! They got around to doing the trial wean off his ventilator but it did not go well. You could see him really struggling, he started coughing and throwing up (nothing because his stomach is empty). It killed me to watch him be in that much pain! I wanted to rip the tube out of his mouth myself I'm pretty sure it would have been a good safety precaution to restrain my hands like they do his so he wont rip it out! After the wean didn't go so well they put him back under the sedation but that took a while to make that happen and he was having a really hard time! It really broke my heart to watch him suffer so much. After that eventful afternoon they said they were just going to keep him sedated and let him rest from the evening. I was glad to see him rest. his lungs are fighting more than I would like to see but I also know Ben well enough to know that he would rather do this himself but is willing to submit to what has to be done. That was one other really very reassuring thing. I could tell Ben that he was fighting the machine too hard and he would calm right down and let it work but he wouldn't do that for other people. I loved that tender reminder that our souls really are bound together. We belong to each other and that is how it is suppose to be!
Friday was also the day that our Family, ward and many many other countless people had a group fast for Ben. They all agreed to go without food and water for the day and pray that he would be healed. I know beyond any doubt that that act alone is what blessed us with such amazing progress that day. It was so tender to hear of the youth who went without in an innocent and heartfelt desire to bless my husband and my family. I was so touched!
Today is Saturday and this day is quiet so far. Ben is retaining a lot of water in the wrong spaces. His kidneys are pissed off and just not doing what they are suppose to do. For now they are looking at other options for trying to let them get the little boost they need to start working better but we will see how that goes. If it doesn't work they will put him on dialysis to get his blood filtered out the hard way! They will make a choice on that around noon today so say some prayers for us!
Saturday afternoon they decided the dialysis was going to be a must. It was kind of a bummer and a huge relief all in the same moment. I want to see him get some of that swelling down! They did warn me that it wouldn't be a real instant process that he still has a lot to go and that the dialysis wont specifically do that but it should help some. Saturday night I finally went home and slept at home. I was beat tired and slept great. Diane stayed the night with Ben and said it was a very quiet and uneventful evening. But they did not get the dialysis started until about 11 PM thanks to so many delays but they did get it started. The one disadvantage to dialysis that I was not prepared for was that it apparently makes the patient super cold!
Sunday morning Ben's core temp was only 95 and so he was freezing they tried warm blankets and a terrible looking hat. Ok the hat wasn't terrible at first but whoever made the hat didn't finish it off so after twice of taking it off it was all wrinkly and looked more like a bonnet than a hat. I couldn't take it so I whipped out a good looking orange and grey hat to keep him warm so he did not have to look so silly! I have to admit that he looks so much better when he is snuggled under all the blankets for some reason it just brings a great sense of peace to my heart! We did eventually get his temperature up to 97 by the end of the day thanks to putting him in a bear hugger (its a cool blanket that has hot air that blows through it to help keep him warm)!
Sunday night was also quiet they are continuing with constant dialysis for the next few days then will evaluate his ability to tolerate it in shorter intervals pulling more fluid off at once. Vent weans have changed drastically since the first one we tried where they tried to just cold turkey him off the ventilator and now they are doing it in much slower and smaller baby steps. At some moments I am glad they are letting him rest and then at others I just want to scream and beg them to let me talk to him and get him out of here and just make it happen faster. But then I have to remember that this is just part of being in an ICU there are lots of moments of rush and others that are slow and steady just waiting and waiting for what feels like forever!
Sunday evening I also had the privilege of hearing from Alayna's teacher that the kids in her primary class prayed for 'Alayna's daddy' completely unprompted which is really touching from a class of 4 year olds!
Monday was another normal day. I honestly don't remember most of it at this point seeing as how a few days have also gone by. He had ups and downs. Here is what information I posted about the day on facebook: Today was a little bit bumpy. Ben Merritt has been struggling with his heart rate and his breaths per minute (he breathes too rapidly). Thankfully just a few minutes ago they were able to make some adjustments to the vent that instantly gave him some relief! I was very pleased because it was exhausting to watch him struggle so much for so long.
We attempted to get him to wake up today for a little bit but were unsuccessful he was pretty determined to just keep sleeping! So tomorrow we will try again and see how he is fairing with all of the changes we have been making to his settings. The Dialysis is still going well even though some changes had to happen due to low blood pressure for him again. We are hoping that tomorrow will go better and that we will see him maintain his new found comfort in breathing!
Tuesday's update was as follows:
Yesterday's update:
Sorry it took me until today to do this, Ben's day was up and down yesterday. He had an hour or so of scaring the crap out of his nurses and doctors because his breathing and heart rate suddenly skyrocketed. But once they got him calmed down with more sedatives he was fine the rest of the day.
His trial wean from the vent was a total flop he lasted about 5 minutes before his vitals freaked out on us so they said they will try again tomorrow.
They are working on changing which kind of sedatives he is on and will do another round of dialysis tomorrow morning!
Then Wednesday:
Yesterday was a great day for Ben! We have really needed one of those, a day when things just all went in the right direction without complications!
He had a trial wean off the vent and did amazing for 3 full hours before they needed it back on for his second round of dialysis. The swelling is going down significantly for him since doing the dialysis and there are some good indicators that his kidneys are starting to show some improvement. They plan to do another weaning trial today so pray that it goes well and that we can be one step closer to having that tube out! Thanks for the prayers, food, and help with the kids!!
He had a trial wean off the vent and did amazing for 3 full hours before they needed it back on for his second round of dialysis. The swelling is going down significantly for him since doing the dialysis and there are some good indicators that his kidneys are starting to show some improvement. They plan to do another weaning trial today so pray that it goes well and that we can be one step closer to having that tube out! Thanks for the prayers, food, and help with the kids!!
Thursday was the best day of the week... or so I thought this was the best day. It was a day full of mixed emotion for me: Here is the facebook update:
Best news of all!!!
Ben got off the ventilator today!! They just barely pulled it out and he is my hero! One week of hell is worth seeing him breathing on his own and looking at me and responding to me! This road isn't even close to an end yet he will still have to be in the hospital and ICU for a while until he stabilizes but for now I am celebrating in this giant victory!!
It really was a short and sweet little post but then the reality of exactly how sick he is dawned on me. I was no where near mentally prepared for how hard it is to wake up and breath on your own after being on a ventilator for a solid week. His body refuses to move and he cant talk at all because the vent tube essentially splits your vocal cords in two and then you just have to wait for them to come back together again which usually takes a few days. Ben started out that day just fine being off the vent he was a little loopy but nothing that really concerned me. The day progressed and Ben's loopyness got aggressively worse. I thought it would be alright he just needed some rest and I know we really pushed him over his limit by asking so much of him right after he got off the ventilator. I was so desperate to hear his voice again and to know that he was still in there an alive that I didn't even consider how difficult it was for him and how his body would react. That night Ben was terrified of falling asleep so he ask me to stay awake with him. I managed to stay awake most of the night but there were a number of times he nudged me to wake up after I had fallen asleep. It was hands down the longest night ever!
Friday was another long day. I was tired and had spent 90% of the day just trying to understand Ben and help him figure out what it was that he needed. He hit a point during that day that he just didn't like me. There really was no logical explanation for that but boy he said some things that were so funny you couldn't contain yourself and other things that were just cruel. Ben became completely possessive of everyone. He didn't want anyone to leave the room, he insisted on talking about no one but himself and he was dead set on getting himself out of there. He didn't really want me around by that point because they had attempted to place a feeding tube and it failed so he had a very child like reaction that it was my fault for letting them try. After the first attempt had ended up in his lungs, not his stomach, I told them they couldn't try again that night. The next morning they tried again and failed a second time and Ben by that point was aware and vocal enough to tell them himself that he refused to have it placed again. I cried. I cried a lot because in my heart of hearts I felt like I was personally torturing him. I have no idea how mom's of little kids ever get through this kind of thing because it is horrible to watch the ones you love suffer so so much! Diane stayed at the hospital all night that night. She ended up being up all night long with a very delusional version of Ben who had officially been completely lost to us by this point.
Saturday was horrid. If I thought Thursday and Friday were hard Saturday was far far worse. I was still beat tired. Something about the inability to sleep when your spouse is in such life threatening position and being terrified that he was never going to pull out of this delusion and I would be married to a man who no longer wanted me and could hardly remember who I was. I was horrified at the thought so sleep evaded me for yet another night. But Saturday morning when I came back and took over for a Very exhausted mother I encouraged my love. Bryan stepped out into the hall to explain how bad it was getting before I even walked in the room. It's a good thing too because I don't think I could have handled that shock without a bit of warning first. Ben was a beast. He was mean, determined and to use a quote he used himself "Stubborn as a Mule". I cried a lot that day. I begged him to sleep, to rest his eyes to just be quiet for 10 minutes. But no, that was not going to happen. He was dead set on a few random things. #1- his puls-ox was Malory's and we needed to mail it to her. #2 He couldn't breath because I turned the oxygen mask (that was behind him not on him) off, #3 Someone was trying to tip his bed over while he was in it, #4 There were cameras in the ceiling that let the doctors watch him so he couldn't escape #5 "that's not the point" "that's not the whole problem!" "stop interrupting me" "your not listening" "But I didn't get to tell __________ my kids names!" all of those were incessant quotes Ben used in his constant non-stop jabbering. He also read every sign on the wall and apologized for everything from being slow to being mean to us. By the end of the day I was a bawling mess. I begged him to sleep, I held his hands down, we had tried every medication we could to knock him out and none of them had any effect except to piss him off some more. That night I tried to sleep. I huddled in the corner and listed to him talk to the wall, ceiling, nurses, and every other object in the room. I silently cried. My heart was broken and I was terrified. Midnight rolled around and Ben suddenly got way worse. All his vitals went nuts and we couldn't get them under control so they decided the best thing they could do for him was to sedate him and put him back on the ventilator. I felt horrible. I had prayed just hours before begging my Lord to please let him sleep no matter what it took, I know being intubated was an answer but it wasn't exactly the answer I was looking for. After that I took a sleeping pill and drifted at some point in the wee hours of the morning into a dreamless but restless sleep.
Sunday, I wish I had words for how I felt that day. I don't. Hailey came from Florida that morning they came to the hospital to sit with Ben for a bit. I gave up that day. I'm not proud to admit it but that day my soul was aching so much I quit. I quit wanting to live or wanting to fight anymore. I needed a break. I had been in that hospital for two weeks praying and hoping that the worst was over and it never seemed to hit that point it always seemed the worst was just beginning. So that night I went home. I went to my parents and picked up my babies that I had not seen in almost a full week. I ask my dad for a father's blessing which I was very thankful to receive and then I went home.
Bishop and my home teacher came over and brought me the sacrament that day which was very much needed. I truly felt the power and spirit of that ordinance in a way that I have never felt in my life. I was touched and changed for the better. Those poor men had to sit there and listen to me cry about my life but they didn't seem to mind in the end.
I called my mom that night after they left and ask her to come stay with me. I can't tell you how lucky I am that I can call my mom and say "Mommy, I need you" and she will jump in her car and be there for me in a second. It meant the world to me to be able to sit and cry with my own mom and have a chance to be a little girl for just a moment in time when I already feel so weak and venerable. My mom is the greatest gift I have ever been given and I pray that I can be half the woman she is and that I can raise my own children to be as amazing, strong and faithful as all 8 of her children have turned out to be!
Monday morning I did not send Eliza to school. She had a tummy ache and I didn't want to send her anyway so it was a good excuse for me to keep her home and just be with them. We played games, watched movies and read lots of books. I kept up with Ben and the lack of changes for him for the day but mostly I allowed myself the day off from the hospital and from all the stress there. I wish it would have been more effective in reboosting my ability to cope in the long run but it gave me a boost I needed. My visiting teacher came over that day and we chatted for a few hours. She gave me a ' Brave Girl Basket' that has lots of little gifts for me to open whenever I need to feel brave. It's a very sweet thing I think I will pass on to someone else one day.
NOTE:
I stopped writing at this point, I wish I would have continued a daily update here but I did not keep up with that so from here I will be adding my facebook updates and side note memories of this experience.
March 4- I am sorry for all of you who hang onto every update and that I have left you all hanging with the last news that Ben was placed back on the ventilator. The past few days have been relatively uneventful. Ben is on a lighter sedation this time around with the ventilator and he is more responsive which is nice. He also seems better able to sleep and rest with this round of being on the vent.
They did another brocoscopy on Sunday to see what exactly suddenly got worse in his lungs but we have not gotten specific results. They also did an EKG to see why his heart rate suddenly dropped so low as well. The cardiologists said that they can't find any specific reason but there are a few abnormalities on that test. They will continue to monitor that.
As of yesterday it was an uneventful day, He saw a physical therapist that he responded well to and also had a massage which helped him relax some and rest a little better. His night was good he slept!
Thus far today they have turned down the settings on the Vent to the lowest settings they use before taking you off the vent in hopes that possibly tomorrow they will be able to take it out and hopefully never have to put it back again! As for myself after the 12:00 AM mess of Sunday morning I accepted relief from Ben's family and have not personally been back to the hospital since Sunday evening. I have instead been trying to regroup and have some form of normalcy with my children at home. The break has been much needed and I now look forward to getting back to the hospital to check in and see how he is doing! Thank you so much for the continued prayers we feel them every day!
By the time I wrote this post I was back to functioning. I was a hysterical mess before that. The few days of pretending that my life was something normal was a huge relief to my mental state. I was thankful for Hailey who spent most of her visit here just being in a hospital room with a less than responsive brother that she loves more than words can tell.
March 5- Today was an excellent day! I spent the night in the hospital last night and today we hit multiple milestones!
1- no more ventilator!
2- removed his dialysis cath from his neck!
3- chest tube came out too!!!
4- they successfully placed a nasal feeding tube while he was sedated so it was not a traumatic as the last two attempts.
So he is now down to only 2L of oxygen and his voice is coming back a little bit at a time. Now the hard work for him will begin of regaining his ability to eat, and walk again! Thank you again for all your prayers and support!
March 8- Ben has been doing well the last two days. Everything is baby steps and our biggest goals now are beginning to regain his strength! He tried to sit up yesterday but he got too dizzy so that ended very quickly. Thankfully he has a great team of therapists to work with him and help him get a little stronger each day! Hopefully in the near future he will be able to do all the basics on his own again and we will be one step closer to going home!
March 10- Today Ben did some amazing things!
1- Got his feeding tube out! He is officially eating enough calories!!
2- sat up on the edge of his bed for PT and sat unassisted for 30 minutes!
3- Talked to the kids via facetime for the first time in 3 weeks!
I enjoyed my visit with him today and always wish they were a little longer but hopefully in the next few weeks we will see enough improvement in strength that he will be able to come home and do more therapy from home not a hospital room!
1- Got his feeding tube out! He is officially eating enough calories!!
2- sat up on the edge of his bed for PT and sat unassisted for 30 minutes!
3- Talked to the kids via facetime for the first time in 3 weeks!
I enjoyed my visit with him today and always wish they were a little longer but hopefully in the next few weeks we will see enough improvement in strength that he will be able to come home and do more therapy from home not a hospital room!
The first time Ben could actually talk to the kids was this day. It was the first they had seen of him and it quite literally reduced him to tears. I am reminded often of that memory and how much we matter to such an amazing man! Ben never cries but he is so deeply in love with his family that there is no other way to express that love! I will never forget the joy that it gave me to be part of that with him and the kids! I love that man more than life itself!
March 14 - Ben Merritt is doing well these days! He is weaning off of some of his steroids and working very hard at his therapy to regain his strength and abilities! His milestones in the past few days have included sitting in a normal chair, walking across his room and being cord free except for his oxygen!
Ben has lost a significant amount of weight in the past few weeks as well (that really is his leg!)so we are now working on calorie packing and muscle building with his therapy
Ben has lost a significant amount of weight in the past few weeks as well (that really is his leg!)so we are now working on calorie packing and muscle building with his therapy
March- 18 Graduation day!! Ben graduated from Bone marrow ICU to rehab today!! Hooray for being one step closer to coming home! Let the official butt kicking begin!
March 19- We had so so much fun seeing daddy again! These little monkeys sure missed him! Parker insisted on sitting with him over and over again between playing with window clingy thingys
April 1- GUESS WHAT! Ben Merritt got to come home today! We are so excited to have him in the comforts of home! There is still a lot of work to do to rebuild to where he was. But he is HOME!
Sunday, February 2, 2014
January, New Year New Post
Hello world,
Legos from Christmas. This was the best gift of all they spend hours and hours playing with them on a regular basis!
My ice skating princesses! They are both really very good at it!
Parker's new 'stern face'
Ben took me out on the funnest trip we have had in years for our anniversary! We went snowmobiling in Brekenridge! SO much fun I want to go again! And we got some cool video with Ben's GoPro camera that he got for Christmas!
The view from the top of the mountain! Right on the continental divide!
sled dogs!
round two of ice skating, We attempted to let Parker skate... to put it nicely he thought it was some sick form of torture. We only made it about halfway around before my back was screaming as loud as my son so we quit and let they girls have some fun!
Loving Colorado winters where we have blue skies and sunshine followed promptly by a snowstorm for sledding!
Ben got some freaky bad headache. It caused his face to swell up really bad and his platelet count was low so the swelling also caused him to get two black eyes... he looked horrible!
Parker playing with one of my newest hat creations!
This is what happens when you are dead set on walking over the snow, you fall on your bum and mom laughs at you. Poor baby!
HOW TO GO TO THE ZOO WITH 4 KIDS ALONE: put backpack leashes on the one year olds and had the leash end to the big girls. Tell them that if they get lost they're never coming home ever! We all stayed together very well, I pushed the stroller and the kids all thought I was totally cool for letting them all walk!
super active snake, really really liked Eliza!
It's been some time. But time has passed and we have had life occur. I could attempt to tell you all about our happenings this year but that is just silly at this point because I wont remember half of it anyway. So you can have a mush of pictures and some details on the week we have had!
This week has been busy for us I feel like I have put a couple hundred miles on the car this week just from all the running around I've been doing! Grandma Merritt had her knee replaced and that went very well she is recovering incredibly fast and is a super star! But with recovery comes a few day a week in physical therapy which I had the privilege of taking her to this week! It is fun to have some time to just sit and chat with her even if the time is short! I have also started working out more. You know, I really thought I was in pretty decent shape before but if the soreness in my body is any indication then I am the most out of shape person ever! I sure am thankful for friends who encourage me to keep going even if it hurts ;-) Oh and in other news, I finally opened myself an etsy shop! I have been holding out for a while now. Just too chicken to put the work into it and having absolutely no idea of what I am doing I made some obvious mistakes but thanks to a good friend of mine I now know what I need to do to fix it up a little!
The girls had dance this week and are doing very well in it! Both girls are doing really well in school and Eliza is working really hard on her reading! Wednesday was a day of pure madness for me from taking kids to 20 different places all day long and ending the day hitting my pillow and passing out! You know its been a good day when that is the end result! I don't think they will continue dance this summer though I think we will switch it out for swimming in the summer but we will have to see. They really love having some kind of guaranteed activity each week!
I'm pretty sure Parker grew an inch this week because all of the sudden none of his cloths fit. His pants are too short and his belly hangs out of his shirts frequently. Guess it's time to make the clothing swap for my little man! Parker has also recently discovered his manhood... And he wont quit playing with it! People keep telling me it's pretty normal that they eventually figure out its there but I sure wish he would have waited until he wasn't in diapers because sticking your hand in a wet diaper makes everything you touch stink! (by the way, future Parker, when you read this and want to kill me for it I wrote it all out of love!)
Alayna is my shy little super star! she sings and dances all the time. Unless of course you are watching her. Or ask her to do it. Either of those requests will generally result in panic and tears. We keep working on it but I sure love this snugly little princess! Her teacher says she is amazing at school and she has some good friends there. She keeps asking me to let her read everything so I imagine that she will be my little reader one day she sure loves to please everyone!
Eliza had her first eye exam this week! She also earned her first pair of glasses. We will pick them up next week after they are finished. Thankfully she is super excited about wearing glasses and keeps asking if they have called to tell me that they are ready! Funny girl just loves to accessorize! I am hopeful that this will help with her reading since she has been complaining of headaches etc for a while now. Her piano teacher was excited to find out about her needing them saying that she has been having a hard time there as well so hopefully she sees some improvement there as well!
Ben's doing great. We have had some real curve balls thrown out way with some of our finances in addition to some things at work. So he is really pushing himself to get back to work full time as soon as possible. It means he comes home from work beat tired but he is also seeming much happier! Health wise, Ben's lungs aren't working quite right... well its either his lungs or his heart at this point. We don't really know which yet but essentially his body is taking in enough oxygen, but the oxygen is not getting into his blood so we think that may be part of the exhaustion! He had a 3D CT scan on Friday and we will get results from that in a few weeks. In addition he had some blood work done to see how much ability his body has to actually fight illness and if that number comes back too low they will do a transfusion to help him be able to do a little better getting through the rest of this miserable flu season!
This was us talking to Eric on his mission, He was in someone else's house and they had that sign in the background... too funny to not capture a picture of that!
These boys are best buddies!
This week has been busy for us I feel like I have put a couple hundred miles on the car this week just from all the running around I've been doing! Grandma Merritt had her knee replaced and that went very well she is recovering incredibly fast and is a super star! But with recovery comes a few day a week in physical therapy which I had the privilege of taking her to this week! It is fun to have some time to just sit and chat with her even if the time is short! I have also started working out more. You know, I really thought I was in pretty decent shape before but if the soreness in my body is any indication then I am the most out of shape person ever! I sure am thankful for friends who encourage me to keep going even if it hurts ;-) Oh and in other news, I finally opened myself an etsy shop! I have been holding out for a while now. Just too chicken to put the work into it and having absolutely no idea of what I am doing I made some obvious mistakes but thanks to a good friend of mine I now know what I need to do to fix it up a little!
The girls had dance this week and are doing very well in it! Both girls are doing really well in school and Eliza is working really hard on her reading! Wednesday was a day of pure madness for me from taking kids to 20 different places all day long and ending the day hitting my pillow and passing out! You know its been a good day when that is the end result! I don't think they will continue dance this summer though I think we will switch it out for swimming in the summer but we will have to see. They really love having some kind of guaranteed activity each week!
I'm pretty sure Parker grew an inch this week because all of the sudden none of his cloths fit. His pants are too short and his belly hangs out of his shirts frequently. Guess it's time to make the clothing swap for my little man! Parker has also recently discovered his manhood... And he wont quit playing with it! People keep telling me it's pretty normal that they eventually figure out its there but I sure wish he would have waited until he wasn't in diapers because sticking your hand in a wet diaper makes everything you touch stink! (by the way, future Parker, when you read this and want to kill me for it I wrote it all out of love!)
Alayna is my shy little super star! she sings and dances all the time. Unless of course you are watching her. Or ask her to do it. Either of those requests will generally result in panic and tears. We keep working on it but I sure love this snugly little princess! Her teacher says she is amazing at school and she has some good friends there. She keeps asking me to let her read everything so I imagine that she will be my little reader one day she sure loves to please everyone!
Eliza had her first eye exam this week! She also earned her first pair of glasses. We will pick them up next week after they are finished. Thankfully she is super excited about wearing glasses and keeps asking if they have called to tell me that they are ready! Funny girl just loves to accessorize! I am hopeful that this will help with her reading since she has been complaining of headaches etc for a while now. Her piano teacher was excited to find out about her needing them saying that she has been having a hard time there as well so hopefully she sees some improvement there as well!
Ben's doing great. We have had some real curve balls thrown out way with some of our finances in addition to some things at work. So he is really pushing himself to get back to work full time as soon as possible. It means he comes home from work beat tired but he is also seeming much happier! Health wise, Ben's lungs aren't working quite right... well its either his lungs or his heart at this point. We don't really know which yet but essentially his body is taking in enough oxygen, but the oxygen is not getting into his blood so we think that may be part of the exhaustion! He had a 3D CT scan on Friday and we will get results from that in a few weeks. In addition he had some blood work done to see how much ability his body has to actually fight illness and if that number comes back too low they will do a transfusion to help him be able to do a little better getting through the rest of this miserable flu season!
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