Vandrovec Family

[jackmd]

Re: Vandrovec Family

Jess just updated the CaringBridge site. Seems Kailey is stable and they have been able to reduce her oxygen. Certainly sounds like a small step in the right direction.

Your inbox is full, need to delete some messages.

Great news about Kailey. One piece of advice for everybody, good things happen slowly for critically ill patients. Bad things happen quickly. The fact she is stable and perhaps even slightly better is encouraging.

[SturgisJeff]

Re: Vandrovec Family

Jess noted this morning that at 5 am they moved Kailey on her side and had problems. o2 went down so they boosted it back up and scans showed more clouding in the lungs.

[SkippyJack]

Re: Vandrovec Family

Jess Vandrovec just updated her blog with some good news:Liking LasixWritten 23 minutes agoA good news report! Since I posted just a few minutes ago Kailey has peed even more fluid off and is down to 60% oxygen and satting 98%! She will get weaned down again very soon and that will bring her into the 50's. We hope we figured out that all she needs is a little diuretic to maintain a balance in fluid. When you're sick like she is your cells don't hold fluid like they should and it leaks into your body, causing fluid retention in places it shouldn't be. She gets very puffy on the outside, I can't image what she's like on the inside. The lasix pulls the fluid out of those places and into the urine and then out of the body. She peed about 400ccs in just a short time. If this is as simple of a fix as it seems, we are in a very good spot!!! This is really easy to control. And, she's not even needing IV lasix, she just gets it in her gtube. She's really doing well for how sick she is. She just needs time to heal. I know many of you check this site often and I just had to share the good news!!!Not out of the wood yet but some improvement!

[NoVaJack]

Re: Vandrovec Family

any news?

[SkippyJack]

Re: Vandrovec Family

Nothing since the last post I cut and pasted - I'm hoping that no news is indeed good news.

[SkippyJack]

Re: Vandrovec Family

Terry just posted this update:

So far so good since I took over on parent duty about 3 pm. Kai continues to be in 50-percent oxygen even after her latest positional change.
Still, it's so strange to see her just laying there. I want to climb in bed and cuddle her. To that end, the secondary emotions are setting in.
Had a great breakfast at a local tart shop and a hard workout. But by the end I was spent - running for Kai, trying to join her in battle was exhausting. I felt the same way during the first Team Tiny Miracles race. Trying to do some normal things for sanity's sake yet wavering between feeling good about that and stupid about that.
Had lunch with three close friends from college today and they were so caring and giving. That was a big highlight. We feel so loved, and I know Jess and Kai will be taken care of when I go home. That my be as soon as Sunday. Dreading that. I kind of can't imagine doing daily chores right now - I just want to be here. But the twins need me, Mya has to go back to school and I'll have to resume working at some point.
I consider myself to be pretty self motivated most of the time, but not right now. Have to work through that.
Enough narcissism. Thank you all for supporting us through this. Kai is a special kid to be able to generate so much love from so many people.

[SkippyJack]

Re: Vandrovec Family

TV just tweeted:

Terry Vandrovec @TerryVandrovec
Kailey had a bumpy night so Mya & I will extend our stay in MSP. Special thx to the folks in SuFu allowing for that & for the love in MSP.

[SkippyJack]

Re: Vandrovec Family

Latest Update:
Another rough night

Written 1 hour ago
First of all, THANK YOU to everyone who has lifted Kailey and our family up in prayer.

John 14:13-14

Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it.

Your prayers are being heard even through the setbacks. Even though Kailey isn't getting better, she isn't getting critically worse. The prayers are most important right now and we feel them coming day and night. That said, we can't even begin to thank everyone for all of the donations of food, gift cards, money, visits, offers to help, and so much more that have been pouring in. You have no idea how thankful we are for everything you are doing to try to help support our family during this time. Thank you just isn't enough. We are just at a loss for words.

Now on to the not so good update. The attached picture of Kailey is what we see day and night. A seemingly lifeless sleeping beauty. She's beautiful isn't she?! But I get a pain in my heart and a lump in my throat each time I see her. All the tubes and lines and machines. It's a constant reminder that she went through some terrible stuff and is really, really sick. She doesn't move. She doesn't respond. But that's good because she needs to rest....that's what I try to tell myself anyway.

This virus has been running wildly in her body for 10 days now. This is her third day being intubated. This virus has started to cause secretions from her nose and lungs now. In fact she had multiple bubbles coming out of her nose this morning....it was actually quite impressive. The secretions in her lungs come and go and they are very deep in her lungs. They have a suction tube hooked up to her ET tube but that doesn't go far enough down to suck out the junk that is in there. They do this thing where they bag her and push down on her chest, like a forced cough almost, except her limp body makes it look like they are doing chest compressions. It was very hard to watch.

She had a good night until midnight when they came to do her meta neb. She was turned over, had her bedding changed, and just messed with a little too much for her liking. This caused her to get stressed out. When Kai is stressed or anxious her airways get reactive and start to close. This is what I've been trying to say all along....and I've felt like I wasn't being heard. I realize there are certain things that medical staff must do to keep her alive and well BUT when I've told them how my baby reacts and what I know about her and they choose not to take that into account and do something that causes her to have issues, I get really frustrated. That is where I was at last night. Anyway, she closed up her airways and desatted quite low and went back up to 100% oxygen. The vent was really pushing air in and she wasn't opening up to allow it to vent her. After the albuterol neb her airways opened a bit and she started to relax, but it took her a good three hours to recover and was only weaned down to the 70's. Once she started to calm down, it was only one hour of rest before they did it all again....X-ray, blood draw, nebs....these things have to happen but gosh, can't she just catch a break. She was back up to 100% oxygen and is currently only weaned down to 70%. Thankfully our day nurse agrees that Kailey has been under so much stress already and she doesn't mess too much with her. She does only what is necessary and that's it. I am betting Kailey will wean back down in oxygen today just because she's getting the uninterrupted rest she needs.

I need to be patient, I'm already feeling that. Patient for this virus to pass, patient for kailey to tell us when she is well enough to work toward extubation, patient with the staff that are doing their best to help kailey, patient with the situation my family is in, patient when my feelings and fears start to take over, patience is what I'm praying for today.

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

[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 ...

[boxerboy]

Re: Vandrovec Family

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

[TransAmBison]

Re: Vandrovec Family

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

[bigticket1]

Re: Vandrovec Family

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

[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.

[boxerboy]

Re: Vandrovec Family

Thanks, Skippy Jack, for the update.

[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.