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  • #76
    Re: Vandrovec Family

    Originally posted by MontanaRabbit View Post
    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.
    I'm still praying,but feel much better about the chances for a full recovery for Kailey.

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    • #77
      Re: Vandrovec Family

      Around 3:00 this afternoon Kailey started to show some big improvements. She was weaned down from 7 liters flow to 4 liters and is in 60% oxygen right now. She's satting high and coughing pretty good too. I'm looking forward to the X-ray in the morning. It has to be better than today. This morning she was still retracting quite a bit when breathing but not tonight. I'm really excited about this. She was playing catch and peek a boo with the RT tonight and starting to show her silly side a bit. She's been asking for food and water which is another good sign, she can't have them yet so it's been hard telling her no when I want to give in. I really hope we keep moving forward from here. She's set to not be interrupted all night again so another good night of sleep is going to great. If tonight goes well I am pretty sure there will be talk about getting back to gtube feedings and maybe taking out her NJ feeding tube. Kailey is on my lap and wants to type a big thank you to everyone for praying for her. mmmnoooimqs wiwqja Siam,b an. D ::.////s¥hhbbvdgr m O 999@ I will update tomorrow after rounds.
      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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      • #78
        Re: Vandrovec Family

        Now thats good news! Hope the xray tomorrow morning shows improvement.

        As I posted in the other thread our donation is in route to Terry in Sioux Falls. If he has not checked on here Im thinking he will be shocked with the amount.

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        • #79
          Re: Vandrovec Family

          Awesome news...

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          • #80
            Re: Vandrovec Family

            EXCELLENT NEWS!

            If all goes well we will head back to Sioux Falls on Friday. We are going back to Sanford, not straight home, but at least we will all be in the same town! Kailey had a great night, weaned down to 2 liters flow and still in 60% oxygen. Right now the liters is a bigger deal to me than how much oxygen she is in because if we take her home on oxygen she will be getting 100% oxygen at a smaller liter flow, under one liter. She is handling her methadone and Ativan wean well but she is still so weak. When I hold her I can feel her spine, she lost so much weight and muscle. I've been doing therapy with her here but she has a long way to go to get back to where she was before this all happened. Her X-ray looked great today, there wasn't any blood work taken, we were even downgraded to intermediate care from critical care. Things are looking and feeling good. We need to continue on this path, pray for no set backs. I'm so looking forward to Friday!
            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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            • #81
              Re: Vandrovec Family

              Kailey had a great night. She stayed on nasal cannula all night and only dipped to 91% once. Yeah! Today she's down to one half liter. We had her off oxygen all together for a little bit today and she dropped her sats to the 87-90% range. It's hard to know for sure but that could be her norm. We will work with the Sanford docs to decide if she will need oxygen at home. One thing we know for sure, we need to keep her asthma and reactive airway under control. She will have nebs and vest treatments multiple times a day at home along with other meds. Our ambulance is picking us up at 9:00 tomorrow....any ideas on how to keep a two year old happy while strapped down in the back of an ambulance for over four hours??? That should be interesting! We should arrive at the Sanford PICU in the early afternoon but I'm guessing they will not keep us in the PICU, she's too healthy for the PICU!! :-) We went on a wagon ride today and Kailey even walked in the halls, she needs to hold on to both of my hands when she walks because she is so weak but she was loving her walk! She's won the hearts of many here and they are truly glad she is going back home. We got moved to a different room late last night because they needed space in the more critical part of the PICU. She was a wild animal last night, which is why we probably got kicked out of our room. At one point the nurse just unhooked her from all the monitors because she was jumping and laughing and making silly sounds. She just kept pulling all her cords off and laughing. It was a moment that I knew I should have tried to keep her calm and tell her no, but I didn't. I loved EVERY MINUTE of her big smiles and hoarse laugh. Her sillyness and giggles and that spark in her big blue eyes. She got me laughing so hard that my tummy muscles hurt so bad and I almost dropped her off the side of the bed! It was two weeks ago today that I wasn't sure if I would ever hear her talk or see her open her eyes again. Well, it's nap time here....thanks for checking in! I will update later today.
              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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              • #82
                Re: Vandrovec Family

                When it rains it pours I guess.

                Terry took one of their twins in for a Synagis shot and the nurse accidently gave him ephedrine. Terry and Ty are in an ambulance on their way to Sanford for observation.

                Unreal.

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                • #83
                  Re: Vandrovec Family

                  Originally posted by MontanaRabbit View Post
                  When it rains it pours I guess.

                  Terry took one of their twins in for a Synagis shot and the nurse accidently gave him ephedrine. Terry and Ty are in an ambulance on their way to Sanford for observation.

                  Unreal.
                  Synagis is a medication designed to protect infants from developing RSV when a close contact is known to have it (assuming the Kailey had RSV). Ephedrine is a stimulant similar to amphetamine that is used by injection to increase blood pressure and heart rate usually in patients receiving anesthesia. It is also used very rarely to treat severe asthma in children and adults (very rarely). I don't recall the brand name and it is possible that it is similar to Synagis (something like synephrin). The baby should be okay, will be observed for fast heart beat or high blood pressure. Short acting medication so they should be home soon.
                  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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                  • #84
                    Re: Vandrovec Family

                    WOW. Needless to say, THOSE shots will be free.

                    Obviously an innocent mistake, but wow, check, double check, triple check what shots you are supposed to administer.
                    "Life is short so make sure you spend as much time as possible arguing with strangers on the Internet." - Person

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                    • #85
                      Re: Vandrovec Family

                      Ty has checked out fine and can go home. I'm so sick about this still but so glad my little mister man is ok.

                      Kailey is sleeping now and we are a little over an hour away from Sioux Falls. We will not be admitted to the PICU, just the regular hospital.
                      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

                      • #86
                        Re: Vandrovec Family

                        Written 59 minutes ago
                        Kailey has been off oxygen for about three hours now. We unhooked her to give her a bath, her first real bath in a tub in three weeks. When we hooked her 02 reader back up, she was satting 95! She was so excited about her bath today...giggling and squealing! I think I was more wet than she was by the end. After bath she needed to rest so she watched some cartoons in bed before PT came to work with her. Some of the simplest things are really hard for Kailey. Putting shapes into a shape sorter is hard because she has such bad tremors. She used to be so good at this skill. She can't stand up or get into sitting position from standing position without support. She will sit up alone pretty well. She will go from sitting up straight to sitting with her hands on the floor alone, but not into a true crawling position. She can't stand up from sitting, she can't squat down to pick up a toy, she can't walk without support. It is like having a baby who is just learning how to be mobile. She cannot be left alone for fear of falling and hurting herself. She struggles to do very simple tasks and her muscles shake so bad after a workout. We walked down the hall today with the therapist and Kailey wanted me to carry her back. Her little legs were just shaking from that small walk. The good news is she wants to get up and moving. I'm told her strength will come back but it is really hard to watch her little body struggle so much. I started doing therapy with her in Minneapolis and we will continue to do it here. Everything I do with her is deliberate, I need to give her every opportunity to get her strength back. We play tug of war with her blanket, I hand her small syringes and see if she can put the plunger part into the syringe. She helps me push her gtube button closed, she pulls tape off her toys, it's non-stop play therapy. Whenever we can we try to get out of bed and play on the floor or walk. It's a balancing act between pushing her just enough but not too much where she tires out and loses any reserve she has built up. She will need increased PT and OT when we get back home. I wondered if she might even need nursing care for a while just until things are a little better for her. We will have to see.

                        Just as I've been writing, she has fallen into a nice deep sleep and her sats started hanging around 89-90 so I hooked her oxygen back up. It's not uncommon for kids to need the extra 02 when they are asleep. I'm just happy she did so well without it when she was awake.

                        The pediatrician and pulmonologist who are on today are very pleased with her progress. The plan is still to slowly increase her gtube feedings. Although I am completely capable of taking her home as she is right now, we have the oxygen,nthe feeding pump, the oximiter, nebs, etc, it is nice to be here incase something does not go as it should. If we are able to keep increasing her gtube feeds without issues, we might get to go home in a couple days. The hardest part about being here is knowing I could be doing all of this for her at home AND getting to be a mommy to my other three kids.

                        Terry stopped by today on his way to the Summit League tournament and was all dressed up in nice clothes and a tie. Kailey wanted him to hold her but her gtube leaks sometimes so he put on a gown. He was asked if he was the doctor!!! It was pretty funny.

                        I just want to thank you all again for your prayers. The doctor asked me if we had a lot of people praying for us because kids like Kailey usually don't look this good after being as critically sick as she was. He said there was more to her healing than what man could do. It was very refreshing to hear a doctor say that!

                        1 Corinthians 12:6 There are different kinds of working, but the same God works all of them in all men.

                        God was working in our doctors and nurses every step along the way. I'm sure of it!
                        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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                        • #87
                          Re: Vandrovec Family

                          Heading HOME!

                          Written 1 hour ago
                          Proverbs 16:9 “A man’s heart plans his way, but the Lord directs his steps.”

                          All the best plans for caring for the sick can be made but ultimately God's plan will be. I would have thought I would know this by now....yet I get so stressed out when there are setbacks with Kailey.

                          The upper GI showed that Kailey's nissen is working perfectly and there is NO reflux happening. It also showed that her stomach empties into the intestines rather quickly which is a miracle in itself. After an event like Kailey had, and after her tummy was "shut off" for so long, it usually takes a while for the stomach to begin working properly again. She has been handling the small amounts we have been feeding her very well and that is what we will continue to do as we try to get her back to somewhat regular feedings again.

                          We are going to be leaving the hospital shortly and will all be together at home tonight! I told Terry how excited I was to be completely overwhelmed with the craziness of our family right now. We found out we will not be getting home nursing now....insurance is unbelievable. Anyone who has struggled with insurance understands my frustration and disappointment in the system.

                          The doctor is finishing up his discharge notes and I have to pack up....yeah! Thanks for checking in and I will post an update once we are all home.
                          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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                          • #88
                            Re: Vandrovec Family

                            Hands down the best news on this board the past week...and that's saying a lot!! Congrats to Terry and family. Happy and relieved for you and yours.
                            SDSU...Passionate, Relentless, Champions.

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                            • #89
                              Re: Vandrovec Family

                              Originally posted by propar80 View Post
                              Hands down the best news on this board the past week...and that's saying a lot!! Congrats to Terry and family. Happy and relieved for you and yours.
                              So true

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                              • #90
                                Re: Vandrovec Family

                                TV just tweeted

                                Terry Vandrovec                                 ‏@TerryVandrovec                                Kailey is back, lighting up our home after 28 days in the hospital. We are eternally grateful to all who helped make that possible. #blessed
                                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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