Vandrovec Family

[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

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

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

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

[NoVaJack]

Re: Vandrovec Family

any news?

[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!

[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.

[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.

[MontanaRabbit]

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.

[KUlawJack]

Re: Vandrovec Family

Hyperbaric O2 has a role in treating certain conditions like infection due to organisms that do not like oxygen or poisoning with carbon monoxide but not for respiratory failure due to acute lung injury (ALI) or acute respiratory distress syndrome (ARDS) which is likely what Kailey is suffering from.

From the little I know about medicine, which is about a thimble full of water in the ocean, I do know that ARDS is really bad news. I am really feeling for the Vandrovecs. They are most definitely in my thoughts.

[JimmyJack]

Re: Vandrovec Family

Thanks JackMD for providing that information. I am so impressed with the amazing strength Terry and Jessica are showing through all of this. What an awful situation and what amazing people they are.

[jackmd]

Re: Vandrovec Family

would hyperbaric treatment work or is that more for healing the lungs after. When I had an upper respiratory pneumonia bacteria and staph infection in my throat, leading to a tracheotomy, for the last week in PICU they would put me in the
hyperbaric chamber for two hours a day which worked.

Hyperbaric O2 has a role in treating certain conditions like infection due to organisms that do not like oxygen or poisoning with carbon monoxide but not for respiratory failure due to acute lung injury (ALI) or acute respiratory distress syndrome (ARDS) which is likely what Kailey is suffering from.

[SturgisJeff]

Re: Vandrovec Family

Extra Corporeal Membrane Oxygenation is basically lung bypass. When a patients lungs (usual only neonates or children) aren't able to adequately provide the oxygen needed for the bodies metabolic functions ECMO can be employed. It is highly complex and reserved for only the most ill patients. As is obvious to everyone this girl is in serious, critical condition and her prognosis is guarded at best.

Other supportive modes of oxygenation include High Frequency Oscillatory Ventilation (HFOV) they may also be trying that.

would hyperbaric treatment work or is that more for healing the lungs after. When I had an upper respiratory pneumonia bacteria and staph infection in my throat, leading to a tracheotomy, for the last week in PICU they would put me in the
hyperbaric chamber for two hours a day which worked.

[jackmd]

Re: Vandrovec Family

Sounds like its getting worse again. might have to go to the cities and try ECMO. The good Doc could probably explain that a little better. Almost feel guilty i get to go home from work now and see my little guy. Can't imagine what they are feeling right now.

Extra Corporeal Membrane Oxygenation is basically lung bypass. When a patients lungs (usual only neonates or children) aren't able to adequately provide the oxygen needed for the bodies metabolic functions ECMO can be employed. It is highly complex and reserved for only the most ill patients. As is obvious to everyone this girl is in serious, critical condition and her prognosis is guarded at best.

Other supportive modes of oxygenation include High Frequency Oscillatory Ventilation (HFOV) they may also be trying that.

[filbert]

Re: Vandrovec Family

There are two ways to send money through Paypal. Goods and Gifts. If you send as a gift, they don't take a cut.

Didn't know that. Cool. Consider my above pledge made. Let me know how to proceed from there.