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  • #61
    Re: Vandrovec Family

    Latest update from Terry:

    I'm terrified to say or write this because of all the downturns we have experienced, but ... Kailey could be extubated Friday morning. That's what the doc said at rounds this morning. It's dependent on continued progress, of course, but he thinks that is possible. This virus can be like a cold in that one day you just feel a lot better. He sees that for Kai based on a combo of improved X-rays, the nitric weaning and blood gasses. Nitric will come off any minute. If that takes, we can start weaning some vent settings. There would also be a cpap trial, likely Thurs.
    In the meantime, we continue to tweak the sedatives - we need her to be active enough to breathe yet mellow enough not to freak out or pull her tube. It's a balancing act.
    Also, there's a chance - again, not certain - that she would go home from here instead of returning to Sanford. Mind blowing. Might be with some oxygen, but still.
    All this news comes a few hours after Mya and I got back from the Wild game. We got tickets from player Matt Cullen, who I covered quite a bit during my time in Fargo, and had a blast. It will be a lifelong memory - the positive kind. There have been many of those from this situation, all involving family and love and the generosity of others. It warms my heart. (Or is that the coffee?)
    So we're on high alert today, making sure Kai handles all of the changes and is as anxiety-free as possible. It's terrible to see her cry in this state. We remain wary of curve balls.
    Thanks again for, well, everything. It means the world to us to have so much support.
    Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

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    • #62
      Re: Vandrovec Family

      Again, good things happen slowly like they are. Bad things happen quickly and often without warning. This is all great news. The nitric oxide is used to improve oxygenation and allow the doctors to reduce the amount of oxygen they are delivering to help avoid oxygen induced lung injury. The CPAP trial he speaks of is a way to determine if the patient is likely to tolerate extubation, we also call it a spontaneous breathing trial (SBT). If Kailey tolerates CPAP and seems to be awake and alert enough they will likely extubate her and see how she does. Very encouraging news and reason to celebrate.
      We are here to add what we can to life, not get what we can from life. -Sir William Osler

      We do not see things as they are, we see things as we are.

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      • #63
        Re: Vandrovec Family

        It's amazing how things can go from absolute desparation 5 days ago to this hopeful news today. Prayers can be answered !

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        • #64
          Re: Vandrovec Family

          the latest:

          Kailey is resting well between the times she wakes up and moves around. That is good because they continue to wean pain meds and sedation meds so the fact that she calms down without extra meds means we are on the right track for Fridays pending extubation. They are taking out her art line today and also just turned down her PEEP which is what the vent gives her to help her keep her oxygen sats up. You and I have a PEEP of about 3. So she went from a PEEP of 10 to a PEEP of 7, they like to have kids at a PEEP of 5 for extubation. So far, her body is adjusting to the change and she is keeping her oxygen sat up in the mid 90's. Thank you for the continued prayers.
          Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

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          • #65
            Re: Vandrovec Family

            Terry tweeted this a few hours ago:
            Kailey has two two-hour trials on decreased vent support today. If she passes both, the tube will come out tomorrow. #endurance
            Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

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            • #66
              Re: Vandrovec Family

              New update on Caring Bridge. The first trial went so good that a second one is not needed! Unless something goes wrong, the tube is coming out tomorrow.

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              • #67
                Re: Vandrovec Family

                You beat me to the punch MontanaRabbit - for those that don't access the Caring Bridge site - here is the full update

                Written 48 minutes ago
                What a great 24 hours Kailey has had. My prayer has been for healing and comfort for Kailey. God has been with us through it all. We have felt it, and seen it. As you know Terry and I have said how hard it is to see her cry, be scared, be in pain. But it could be a lot worse. God has guided the doctors and nurses to give Kai just the right amount of pain meds and sedation meds that she wakes up enough but is comforted easily and not trying to yank her tube out or climb out if her bed. It's REALLY hard to see her in this state, but it could be a lot worse. Last night when I was here Kailey was awake and pretty upset. Even though she got bumps in all her meds, she still wouldn't settle comfortably. At one point she grabbed my hand and brought it to her ET tube, like she was telling me to pull it out. Sometimes when your kids are upset you have to walk away. It got to that point last night and I'm not afraid to admit that. All she wanted was mommy to take out the tube and make everything better and I couldn't do that. It was supposed to be my night to stay with Kailey but Terry stayed instead. When I was here she wouldn't let me move a pinkie without crying, then she would desat...she was scared. After all the extra meds she was settling down and I left, I couldn't tell her I was leaving so I snuck out. Those of you who know me know how hard that was for me. I cried, a lot. It killed me to leave. To not be able to comfort her. But I love her enough to know she needed me to go. I asked God to wrap His loving arms around her and hold her tight. I asked him to comfort her because I couldn't. I admit, I also asked why this happened.....why couldn't I comfort her tonight.

                Isaiah 41:10
                Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand.

                Kailey did eventually calm down and rest very nicely throughout the night. We don't always get answers to our "why" questions but I did last night. Mya and I got to snuggle, talk, I was able to rub her back which I haven't been able to do in months, she loved it. I guess my biggest kid needed me more last night. God is always working....always!

                Things are still moving in the right direction for extubation tomorrow. Kailey passed her cpap trial with flying colors. Basically what happened is she remained vented but they turned off all the support. She had to show she could maintain her sats for 2 hours. Breathing when vented is like breathing only through a straw. You try to do that for two hours and see how hard it is. But she did it, there literally were not any hiccups through it all. No desat, no heart rate increase, no work of breathing, no fast breathing.....nothing, oh, they even weaned down her oxygen during the trial. She's unbelievably strong!

                They usually do two 2 hour trials but she won't need another one. They started taking away more meds and will be off two of them by early morning. She will still be on methadone and ativan for awhile. Once she starts to notice her pain and sedation meds are gone they will give her a drug called propofol and it will knock her out. This will stay on board until they turn it off in the morning to let her really wake up before they pull the tube. It should be a calm night here once she gets that med. the tube should come out around 8 or 9 in the morning so if you think of it at that time, send up some extra prayers.
                We will try to update one more time today and then for sure after the extubation tomorrow.

                For now I'm hanging on to this quote "God doesn't promise to explain the events of our lives to us, only to be present in the midst of them"
                Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

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                • #68
                  Re: Vandrovec Family

                  The latest:
                  Written 43 minutes ago
                  Things are still looking good for tomorrow! The propofol was turned on late this afternoon and Kailey has been resting nicely. She still wakes up a little and answers questions but isn't uncomfortable at all. The nurse today asked Kailey if she left a treat in her diaper for her to change and Kailey nodded....it was really cute. The plan for the night is rest. I like that.

                  I've been wondering what a week on the vent does to a little person like Kailey. I know one thing is that is allowed her time to heal and build up reserve. But it also will have set her back in almost every other area. I don't want to sound too negative, it's just the reality. She already had a paralyzed vocal cord so there could be more damage to that and at the very least she will be very hoarse sounding again. It may take awhile for her voice to come back. If her vocal cords do not work properly there could be some eating issues again as they work to protect your airway when you swallow. Kailey already had oral aversions and I can only imagine how far back she will go now that there has been a tube in her throat for a week. Respiratory wise she is still sick. Her lungs will always be this way so we will be doing nebs and steroids again. I don't mean she's always going to be sick, I mean she will always have the lungs she was born with and can get sick very easily. The doctor told me not to be surprised if we end up in this kind of situation a few more times before she turns five or six. Gross and fine motor skills have also taken a hit. She already had muscle weakness and some tremors but now we've taken a few steps back. She will not have the stamina she did before she got sick. She will have to work hard to get caught up but she will do it. We will make sure of that, we will do whatever we need to do to make sure that happens. PT and OT therapy will start here and continue once we are home again.

                  A week ago tonight we were not sure if Kailey would make it. Although we wouldn't have admitted it at the time, we were preparing ourselves to say goodbye to Kailey. It was a very scary time. I think God lets us feel those times every once in a while just to remind us to slow down and enjoy one another or to remind us that He has a plan and is in control or to remind us to talk to Him and trust Him. Through all the scary times we have been blessed by the prayers and generosity of so many. When I couldn't find words to pray or I was being overtaken by all the bad thoughts or when my body was numb, I would read your messages and it would help. Saying thank you isn't enough but I don't know what else to say. I'm lost for words.

                  So tomorrow morning is going to be great, it has to be! The plan is to be extubated and be put on nasal cannula. We will just have to see how things go. If all goes well we could be here another week or two. When it's time to go home we will take an ambulance back to Sanford for a one night stay, just for observation and then finally be discharged to home. That will be a great day.

                  Terry and Mya are on another father daughter date, at Disney on Ice thanks to the generosity of others. I'm sure he will write about their time tomorrow. We are ready for tomorrow to be here already. I will try to update as soon as I can after the extubation. Thanks again for all your prayers!
                  Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

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                  • #69
                    Re: Vandrovec Family

                    Don't mean to step on SkippyJacks toes....but The tube is out.

                    Written 1 minute ago

                    The tube is out. That went as planned. But her o2 sat isn't great because she is reluctant to cough. It may take a couple hours for her to acclimate. She is a little agitated, saying a few words and asking for a balloon. Dad has his next task ...
                    "Life is short so make sure you spend as much time as possible arguing with strangers on the Internet." - Person

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                    • #70
                      Re: Vandrovec Family

                      Not at all! I'm glad other people are updating - I'm online waiting to buy concert tickets. I read the update but didn't post yet so I'm really glad you did! And thankful that Kailey is continuing to improve!
                      Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

                      Comment

                      • #71
                        Re: Vandrovec Family

                        Here we go again

                        Written 1 hour ago

                        Kailey's X-ray was a lot worse than yesterday. Even though her blood gasses and oxygen requirements are good, she is not getting the junk out of her lungs like she needs to. The doctor even said " we need her to cough. We don't want that tube back.". My heart sank. Of course we don't want that but it's a possibility if she doesnt respond to the new neb treatments and start coughing. If xrays get worse we will have to have her intubated again. The neb treatments are now a vest they wrap around her and shake her. The hope is to get the junk loosened up so she can cough it out. But try to get a two year old with a sore throat to cough on demand. It's nearly impossible. My prayers are for rest and continued progress but also for coughing like I've never seen from a two year old.

                        Kailey finally fell asleep....little stinker!
                        "Life is short so make sure you spend as much time as possible arguing with strangers on the Internet." - Person

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                        • #72
                          Re: Vandrovec Family

                          Written 1 hour agoPardon the brevity tonight ... Last night in MSP for Mya and I. Wish we could stay to see this through but school, work and the twins need us. Another huge thanks to all the friends and family that welcomed us here. You are amazing. We really felt loved. Jess and Kai will stay here as long as necessary. Hard to say how long that will be. Kai had a ... decent day. Napped, bounced in and out of play mode and got a lot of RT. We'll find out with the morning x-ray if it helped or not. Could be a long process, but we certainly hope not. It's going to be difficult to be split up again. Feel especially bad for Mama Bear - it kills her to be away from the cubs. More soon. Thanks for caring.
                          Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

                          Comment

                          • #73
                            Re: Vandrovec Family

                            Kailey had a pretty good night. Terry stayed with her because he isn't going to get to see her for awhile now. He and Mya headed back to Sioux Falls early this morning. Kailey slept for a good six hours and has taken two good naps today. Her X-ray hasn't changed, her right lower lobe is still really hazy but she is coughing more. we need her to do a better job at it though. She tolerates her vest treatments so I hope they continue to work. They also added a hyper tonic saline neb which should help her cough. She is more perky today but gets tired fast. She was asking me to wash her hair today, how cute! I realized its been just about two weeks since her hair has been washed. She had a sponge bath and they took out her central line. The only tube left to take out is her NJ feeding tube, but there isn't any talk of that yet. She is getting full volume feeds now which should help her feel better too. Her oxygen needs are the same, anywhere from 30-100% and needing 7liters, satting in the mid to upper 90's and desats sometimes when she is being messed with or has to cough. I hope for another good night for her with lots of rest and for that xray to look better tomorrow. Although, I wonder how bad her lungs look on a good day. I'm trying not to focus on all the numbers and X-rays. She looks good and I will take that. This week is going to be so hard. I haven't held, fed, carried, touched my babies since Feb 14. Since I've been gone so much has happened. They are sleeping longer, eating more, making noises, smiling, laughing and even grew too big for their newborn clothes and newborn diapers. I'm really sad that I missed out on that. For me, those little things mean so much. I don't take anything for granted. I'm just glad the people who were there to see this happen were family and loved up those babies the entire time. I hate not knowing what the plan is for Kailey or when we will be home again. I'm trying hard not to get discouraged but I have my moments. Last night I was pretty down. I think knowing today was the day I would be alone up here and not know when I would see my other kids or husband again was terrifying. I hate the situation we are in. As easy as it would be to focus on all the bad that is happening right now, I refuse to do it. God has given us so many wonderful and generous people to help us through this: family, friends, strangers, doctors, and nurses. God has blessed us and reminded us that He is always there, His plan is in place for each of us. The plan might not be what we want but He challenges us to trust in Him. I want to focus on all the good things God has given us. "Let all that I am praise the LORD; may I never forget the good things he does for me." - Psalm 103:2 Thanks for checking in and please remember to keep Maddox's family in your prayers.
                            Message for the youth: “Set your goals high and work for them, because if you set your goals where they should be, it’s going to require a lot of hard work. And even if you don’t achieve them, it shows longevity, and it shows commitment. And those are both things you need for the rest of your life,” Tony Fiegen

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                            • #74
                              Re: Vandrovec Family

                              Terry's back,well maybe tommorrow,Kailey's going to be all right....wooohooo!

                              Now i can really enjoy the Summit Leaugue Tournament,with that potential tradgedy averted and left behind. From Terry ,Link: http://terryvandrovec.tumblr.com/

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                              • #75
                                Re: Vandrovec Family

                                Originally posted by jackdaniel View Post
                                Terry's back,well maybe tommorrow,Kailey's going to be all right....wooohooo!

                                Now i can really enjoy the Summit Leaugue Tournament,with that potential tradgedy averted and left behind. From Terry ,Link: http://terryvandrovec.tumblr.com/
                                Kailey is not exactly out of the woods yet. She is still a very sick kid and they have no idea how long she will be in MSP.

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