September 6-12 is a great time to go to GKTW Eva Paige's Wish Take 2

[cogero]

sending prayers your way. you are in my thoughts

 

[tinytreasures]

praying for her

 

[Blyssfull]

definitely praying hard for you guys. Hope all goes well with the brocho and they finally get your precious girl the relief and health she deserves!

Maybe if you get dates in September we'll cross paths, our dates are from Sept. 12-16th.

 

[angeque143]

Eva did well with the bronchoscopy. She spiked a temp this am but it is gone now. Again she desated to 77. The bronchoscopy showed that the cause of her partial right lower lobe and full left lower lobe collapse was actually from asthma and NOT pneumonia. We now need to wean her off of the O2 (at 95%) Get Eva able to tolerate her g tube feeds without vomiting it (she is on IV only) and have her lungs begin to heal. They say she will be here at least 3 more days.

The biggest problem we are having is when anyone does ANYTHING to her she cries and starts coughing and desats very low and then cannot catch her breath.
Long road ahead but we will get there tiny steps at a time. My work at home is going to be fun though because now I have to watch EVERYTHING with her and see if we can determine her triggers and try to rid the home of them if at all possible

NIGHT UPDATE:

Spiked a 103 fever weaned off the O2 down from 95% to 25%

 

[tinytreasures]

Checking in for a update

 

[angeque143]

Pretty good day here...Eva still refuses to sit up but she is smiling and talking and watching TV. She still requires oxygen since without she will fall into the low 80's down to high 70's We were able to start her tube feeds but she is only up to 20cc per hour. In order to go home she must hold her sat during the day over 90 and be able to take her tube feeds and walk on her own...she can go home even if she needs O2 at night just as long as all the prior requirements are made.

I am very fortunate that Grandma is here for this one it has made it a bit better to deal with. Eva laughed a bit at us today but we soon found that this was NOT a good thing!! The laughing triggers the coughing and then we really desat super fast

I still dont understand how all this happened...They say asthma but she now got the viral results and came back positive for enterovirus and adenovirus.

She sleeps comfortable right now just needs to bring her heart rate up a bit because the alarms start going off now and then.Will update tomorrow with any changes.

Sort of sad today because in a week we would have been in Disney..I am still not sure how to explain this to my son. So disappointing but when you look at the big picture she needs to be well and this is what matters most!

 

[rachel09985]

Your story is really touching my heart. You are an amazing woman and you are in inspiration to me!! I will be praying for Eva and you tonight.

 

[angeque143]

So can you tell this was a GREAT DAY!!!!????!!!!!

We got new dates!!!!


Eva sat in a stroller for 1 1/2 hours!


WE ARE OUT OF THE PICU!!!!!

Looks like we MAY go home over the weekend!!

 

[Perrinsmommy]

So can you tell this was a GREAT DAY!!!!????!!!!!

We got new dates!!!!


Eva sat in a stroller for 1 1/2 hours!


WE ARE OUT OF THE PICU!!!!!

Looks like we MAY go home over the weekend!!

Sounds like a day of great news!! I hope you are able to go home!

 

[maroo]

Bless your heart!!!!

I had missed all of these updates!

I am praying for you guys!!!!!!!

 

[chelleydi77]

I hope you get to enjoy Mother's Day at home!!!

 

[angeque143]

We had a good night in the fact that we were able to get answers...not clear cut definitive answers but we are headed in the right direction.....We have had a terrible time trying to discuss Evas genetics results but the Dr was gracious to stop in and do it...Eva has a duplicate copy of material on one of the branches of the 15th chromosome...This is a "new" find in that there is no documentation of it. I and her father will be tested for it if we have it then we can rule it out but if not they are going to use Eva for research along with any other children they find with the same thing and simular markers.

Also her final report came back from the viral culture and it seems that what started this all was what is called Human Metapneumovirus which is in the same family as RSV...this is why it struck so fast and so hard. She is a bit older than most that get it but the Dr said the she is so compromised respiratory wise that she had no chance.

We have just been informed that we will be here thru the weekend...At least I have my mom here and my dad will swing by with the kids on Sunday. Heres to looking at Monday!!

Honestly I thank God this happened here and not at Disney..that would have been an absolute nightmare.

Eva keeps getting stronger with each day. We are back to full feeds but not before losing 2 lbs!!! This is a HUGE loss for her so I am glad that we have till September to "fatten" her up!! LOL She is sitting for brief periods and playing with a couple of toys but the coughing fits have just tuckered her out. She really has a time keeping calm through them and it is so hard to just watch. They said that her lungs are moving air in the lower lobes again so this is fantastic.

I will update later if anything changes I appreciate all the kind word and the prayers because they are most certainly working!! A week ago I really thought that this was going to have a very different outcome.

 

[ellenbenny]

We had a good night in the fact that we were able to get answers...not clear cut definitive answers but we are headed in the right direction.....We have had a terrible time trying to discuss Evas genetics results but the Dr was gracious to stop in and do it...Eva has a duplicate copy of material on one of the branches of the 15th chromosome...This is a "new" find in that there is no documentation of it. I and her father will be tested for it if we have it then we can rule it out but if not they are going to use Eva for research along with any other children they find with the same thing and simular markers.

Also her final report came back from the viral culture and it seems that what started this all was what is called Human Metapneumovirus which is in the same family as RSV...this is why it struck so fast and so hard. She is a bit older than most that get it but the Dr said the she is so compromised respiratory wise that she had no chance.

We have just been informed that we will be here thru the weekend...At least I have my mom here and my dad will swing by with the kids on Sunday. Heres to looking at Monday!!

Honestly I thank God this happened here and not at Disney..that would have been an absolute nightmare.

Eva keeps getting stronger with each day. We are back to full feeds but not before losing 2 lbs!!! This is a HUGE loss for her so I am glad that we have till September to "fatten" her up!! LOL She is sitting for brief periods and playing with a couple of toys but the coughing fits have just tuckered her out. She really has a time keeping calm through them and it is so hard to just watch. They said that her lungs are moving air in the lower lobes again so this is fantastic.

I will update later if anything changes I appreciate all the kind word and the prayers because they are most certainly working!! A week ago I really thought that this was going to have a very different outcome.

I am so glad to hear that things are at least going in the right direction. Sorry you won't get to go home this weekend I hope you are able to have a nice visit with the family and a nice mother's day!

 

[mom2pixies]

Oh Angie!!! How did I miss everything that has been happening with Eva this past couple of weeks?! I'm so sorry to have read all of this--to hear that you missed the reveal party, Carissa's birthday and the trip had to be cancelled--but most of all, to hear that Eva (and you and your fam) have been going through such a stressful and painful time!

I'm glad that things seem to be on the right track though and that they've identified what caused the craziness and now that Eva seems to be recovering.

Also glad that you were able to get new dates--the trip will still be incredibly awesome--even more so because of how you've had to cancel it once due to illness. And like you said, better to have this happen at home then ruin the trip and cause all kinds of chaos in Florida! I just hope AJ won't be too disappointed. It's hard at that age to understand.....

 

[Blyssfull]

AWESOME UPDATES! You guys definitely deserved some good news.

Sometimes medical care can be so frustrating!! But I'm so glad they got some extra answers for you. Hope you have a blessed Mother's Day and you get to finally enjoy some time outside of the hospital. I know it's hard on you with her in the hospital. Tell AJ and Carissa we are thinking of them and praying for them too.

Big Hugs!!

 

[evsmama30]

oh gosh, i am just catching up...

so sorry things have been so scary. hope eva is feeling better and you all get some rest real soon!

big hugs!

 

[angeque143]

We were on room air but still have times when we cannot breathe due to huge amounts of congestion. O2 sats are around 91 %. We had a little episode where she may have aspirated so now it is just a wait and see.... back on O2 and sats are ranging from 85-88% So frustrating to watch because you cant do anything to help her.

 

[Tonyababyrn]

 

[angeque143]

So we were off of oxygen for a few hours and then the fun started all over again. Desating and super congested. they say her lungs sound clear but she vomits buckets of mucous and her feeds so it is incredibly fun!

I just want to go home at this point...8 days is way too long. I am sick of sleeping and jumping up at all hours and I dont think my stomach can take much more of the same 4 choices of cafeteria food. This whole situation has me beyond stressed. I just want to know why she alarms all the time and why she cant hold her levels. They said she can go home with a level of 88 but she goes below that and there have been time I have to send my mom running for help because Eva gets into trouble. The virus she has is supposedly a bear on top of it all I am getting allergy attacks! It just does not let up!

i just hate it that our kids get so sick and have to suffer and that with all the knowledge and medicine out there that they have to be in pain or feel like they do.

 

[Mom2mitokids]