Vandrovec Family

[SkippyJack]

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!

[SkippyJack]

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"

[MontanaRabbit]

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.

[SkippyJack]

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

[SkippyJack]

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.

[bigticket1]

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 !

[jackmd]

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.

[SkippyJack]

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.

[SkippyJack]

Re: Vandrovec Family

Newest post:

Kailey has handled the nitric wean very well so far. She hasnt needed an increase in oxygen for over 24 hours. Shes keeping her sat in the mid to upper 90's and is in 38% oxygen. In the past the hardest part of the nitric wean has been getting off of 2 and 1. She's currently at three. I'm praying , well actually begging and pleading God to let this wean happen without any setbacks.

Kailey got her catheter out today. That means her bladder has woke up and is functioning as it should! Yeah! It also means one less foreign object in her body that could potentially be a source for infection. She's got an IV in her foot, an art line in her hand ( its basically an IV that strings up her artery into her chest by her heart) and a central line that also strings up from her groin along her trunk up by her heart. She's getting full volume feeds by NJ which is a tube in her nose that goes through the tummy and into the beginnings of her intestine. And of course that ET tube in her mouth. I can't wait for her to be tube free. I keep showing everyone who walks in this room pictures of what Kailey looks like without all the "life lines"

She's been waking up more and crying. But remember, you cant hear her, she cant make noises. It rips my heart out but she is quickly calmed down with a bolous of pain meds. She usually points to the door and then cries. It's like she's saying "bye bye". We just need to keep her comfortable now so she can relax as much as possible and prepare to be extubated hopefully later this week.

Terry and Mya were given tickets to the Wild game tonight so they are out having some much needed father daughter time. I'm just standing watch my Kaileys bed, ready to hold her hand or comfort her when she needs it. She's actually been sleeping hard for about an hour, which is great.

As we get ready for the big day when she won't need the vent kailey needs prayers for strength and comfort. She's going to be going through a lot....narcotic withdrawls, pain, confusion as to why we are not holding her, stress, anxiety, fighting the vent to breathe, yet her body has to continue to heal and be ready to breathe on its own. I'm not sure many adults could go through what she is about to face. She's a tough kiddo. Thank you for keeping her in your prayers!

We will update tomorrow morning after the doctor rounds, unless something changes over night.

[boxerboy]

Re: Vandrovec Family

Thanks, Skippy Jack, for the update.

[SkippyJack]

Re: Vandrovec Family

Here is the latest Caring Bridge update - great to have some (cautiously optimistic) good news!

Mark 10:27Jesus looked at them and said, "With man this is impossible, but not with God; all things are possible with God."

I believe the doctors exact words were "She's had a great 24 hours. She's a different girl than 48 hours ago. I think we are on the side of improvement.". Then he said something about, "this can change, there will be hiccups," etc but I'm holding on to the first part.

For as sick as Kailey got, there is only one way she got better, God heard our prayers and guided the nurses and doctors to give her the best care possible. She has a long way to go, she is still on life support. It sounds like if things continue as they have she will be off nitric by 9:00 tomorrow morning and then the vent settings start to get weaned. They have already started the methadone to help her with withdrawls she will be having as they wean off all the pain meds. They have also started another pain reliever that is not a narcotic. Tomorrow they will begin the narcotic pain med wean. She is waking up more now and moving around. This is great. this week it will be hard to watch her remain intubated but wake up more. She can't talk or make any sounds. I can see in her eyes she is scared. I can see her asking me "sound" or saying " clean clean" when the cleaning ladies come in. I can hear her eyes saying " all done" when they clean her mouth. Her personality is shining through her beautiful blue eyes. I was singing to her this morning and she reached up and touched my face. My sweet little Kai Kai is on the mend. She has been sick for 13 days and intubated for 5 days. She could be extubated later this week or early next week IF all goes well. We have to remain cautious.

Proverbs 16 The wise are cautious and avoid danger; fools plunge ahead with great confidence.

[bigticket1]

Re: Vandrovec Family

A new post just went up. Sounds like things are holding as is.

[TransAmBison]

Re: Vandrovec Family

It has been very quiet on Terry's twitter, and the caringbridge acct. Getting kind of concerned.

[boxerboy]

Re: Vandrovec Family

Dear God, bless and uphold this family, in their time of need.

[SkippyJack]

Re: Vandrovec Family

Latest Update from Terry:

It was another eventful day in MSP. Mya and I decided not to leave in light of Sunday and because the twins are being well cared for at home. We got to FaceTime with them tonight, and Ty was full of smiles.
Kailey was taken off muscle relaxers tonight for a bit. That is likely to become a daily thing while so is sedated - the docs want her to remember that she has muscles and can use them. During that time, her fingertips started to twitch. Then she was gripping my hand. Her core muscles also started to move and she opened her eyes. It was cool and terrifying at the same time. The last thing we want is for her to get anxious or pull out a line. The nurse saw all the movement she needed to and restored the drugs (at half the old rate).
Again, it was a weird thing to see, and a reminder that rest and healing is a tricky thing for a 2-year-old. I think we're still too scared to assume she's going to get to that point.
I'm staying with Kai, while Jess and Mya are making their debut at the Ronald McDonald House. It's in the hospital just two floors below the PICU is only one year old and really nice. Each room is like a hotel room and the bathroom is much nicer than the ones at home. We are thankful for that service.
I took Mya to a famous local pizza spot for lunch and then we hit up the Minnesota History Center this afternoon with a friend. We're trying to keep her busy and having fun, knowing this is a difficult time for her, as well. She and I are getting some good bonding time, one of the many blessings from this situation.
No real plans for Kailey overnight. Hope it stays that way. We'll reevaluate everything in the morning.
Thanks again to all of you for everything. It's overwhelming and life-affirming all at the same time. Until tomorrow ...