The Bad News is,
1. We've been here since Tuesday afternoon.
2. Veiyah has continued to throw up, spike fevers, and pretty much hate life.
The good news is,
1. She is able to keep some food down now, and we just have to play it by ear.
2. She smiles when she has Tylenol or Motrin in her. She even acts silly!
3. They stopped her fluids yesterday because her face was swelled with fluid. This is good because it means she is well hydrated enough to come off!
4. She may not be able to keep every feeding down right now, but we are used to that at home! We have tons of towels, receiving blankets or whatever is at hand to deal with her vomiting at HOME. We are so thankful that she was taken in and given fluids, that we WOULDN'T have been able to give her at home.
5. V was discharged today! 5.5 days and we're outta here!
Thank you all for your continued prayers and please continue to pray for her continued healing at home. She is still coughing quite a bit, but we will ride this out at home. Veiyah has reminded us, yes we sometimes need reminding of how precious her life is. How delicate she is and reminded us of WHY we DO keep her at home. We went out twice this last month to public places. I'm not blaming our choice, but I do know that I won't be making that same choice next RSV season. We are excited for Spring to get here, but we will be waiting till about May to even think of taking Veiyah out to any public place. We go to Dr appt's, we go to my Mom's house, and that's it. Even that can be too much on her, but we also can't shelter HER or OURSELVES!!!! Winter months are longer than they've ever been for us.
Church is out of the question. Grocery shopping goes with OUT Veiyah and a lot of times, with out US. With Jeremy working, and me Home Schooling my girls plus being Veiyah's nurse all day long every day, we have a lot of times opted to have Hy-Vee (local grocery store) deliver our goods!! Let me tell you how much stress this has taken off of our family!! Yes, there is a $20 delivery fee and they are literally around the corner from us. I don't look at it as a delivery fee. Someone is SHOPPING for my family and then bringing it to us. I'm gladly paying $20 for that!!!!
Okay, enough justifying my family for not taking Veiyah anywhere during the RSV months. Plus, my Dr's would have my head. ....Don't know what good that'd do them, but....
After a week of Jeremy spiking fevers up to 104, and STILL battling them, Me taking care of V at the hospital, my family stepping up, as usual, to help with my kids, my NEIGHBORS stepping up as well, Madi being an amazing help keeping me company and helping the nurses and I calm Veiyah, my van being in the shop so there was no chance of Jeremy going anywhere even if he wanted to, I decided to go get my family yesterday (Saturday). We used some tax money (hoping the transmission is not out on the van ;))to get a hotel last night. It's the same hotel we always get, but the girls LOVE it. We slept wonderfully, the nurses URGED us to go, one of the cardiologists even bought me a people magazine and told me I could NOT read it in Veiyah's hospital room. ;) I'm so thankful for my daughters Dr's. They are incredible and they always make us all feel like we are at "home" while we're there. They are our "people". When we need something, or if Veiyah is the least bit in distress, they are at her bedside or calling us and asking us what they can do. We are ever so thankful for each and everyone of them. The nurses were incredible once again, and we thank you guys so much! This may not have been an open heart surgery, but they all know as well as I do, that anything with V, is complicated. That anything can be an emergency. As hard as that is, we are okay with it. We are thankful that Veiyah is so well taken care of and taken seriously.
We love you guys all so much! We've had an awesome (almost) year home with our miracle girl! She is so very precious to us and we can't get enough of her. So, as we face another open heart surgery once again this Spring/Summer, we know that Veiyah has thousands of knees on the ground praying for her, lifting her up. Be blessed you guys! You have blessed us tremendously!!!
P.S. Aren't those last 2 pictures of V's hats so cute?!?! I have to introduce to you, Katy. She has made all of V's hats so far, and these were particularly made for Heart Month, CHD week, and Valentines Day. The pink one, she named the "Aderah Hat", The white one is the "Veiyah Hat".
I have no words.
Katy's Etsy shop link is: Daisy Mae Hats
Be sure to check her out!! xoxo
Sunday, March 7, 2010
The Bad News is,
Thursday, March 4, 2010
So we are still here, staying another night at the U. Veiyah's temp has stayed down with Tylenol and Motrin. Her oxygen sats have stayed in the mid 70's due to blow by oxygen, but she is non-stop coughing, throwing up, and just all around crabby. She looks so so tired. I finally asked if we could give her some Benadryl (sp) and they were just fine with that, so that's been given a few times today. I think the longest she slept at a time was an hour and a half, which is great, but at night, that's not very long at all. (It's 2am, excuse my awful punctuation)
It was such a long day. With Jer at home with a very high temp, he cannot be here. PERIOD. Poor guy is all by himself. I feel so torn. I need to take care of both of my babies!!! ;) Love you babe! xoxo
So Madi and I tried to get out a few times today. We went upstairs to a nice little "diner" for lunch inside the hospital. It was still very loud though, so it wasn't much "rest". We came back and Child Life came and asked Madi if she'd like to go to the Salon to get her hair played with and her nails done, some pretty tattoos and all! She had a blast, so that was good for her. I'm sure this isn't what she felt like doing all week...but she's so awesome you guys! I honestly have the best daughters ever. And I'll totally win that argument, so don't go there. ;) just kiiiiiddddinggggg!
So, they decided to keep her to make sure she got her feeds down and to keep her on fluids till she did. Wellll, it's not going so well. I tried to be more sporadic during the day, and so she did a little better, but that was like 20 cc's at a time!!! I tried to up it and it all came out. :( So, I'm thinkin' we'll be here at least another night. Honestly, I feel better knowing she's HERE and doing this, though as hard as it is on the family right now.
My prayer requests include a few things. For full restoration to Veiyah's upper chest. That it will clear up and she will be able to eat again with no throwing up. That her agitation will ease up and she will be able to rest.
For Jeremy, as he is alone at home, missing work due to his fever being high pretty much all day long and a terrible cold/cough. Our van is in the shop, so we only have one car, and that car is HERE. He is feeling very torn. He wants to be here for Veiyah and for us, but he also feels like he needs to be at work, and it is tugging at him constantly. His company has always been amazing to him, so I know that they understand. Please pray that Jeremy will begin to heal and get enough rest. For his nerves to calm and his worries to be at peace. So that he knows he is doing what's best for himself by being home and the best for Veiyah by not being here.
For Selah as she is being tossed around from home to Aunt Sarah's. She does so great, but I know that she worries about Veiyah.
For Madi to know how thankful I am for her during this time, and that she'll embrace this time, as I know she already has.
Lastly, for myself. I was the second (Selah being 1st) to catch this virus. I am still coughing and going into coughing fits where I am having to use my inhaler to breathe. Not so great while I'm at the hospital trying to get Veiyah better from what we both have/had. I really believe that this is the last part of it for me, so it's just getting all the gunk out. This is a nasty virus and I hear it is going around, let's pray it stops QUICKLY!
Also, one more favor. Jeremy's Grandma Norma fell yesterday and broke her hip. She is in her 80's and lost her husband, Jer's Grandfather, about 4-6 years ago.(??) She does great on her own, but is just that, on her own. She had to have hip replacement surgery yesterday morning. What a huge shock to her! We are praying for you Grandma! For full restoration and complete healing~ You are so strong, and we know that...but rest! Don't try to be too strong. ;) Thanks everyone for lifting her up in prayer with us.
Looks like our family is being hit pretty hard. We really appreciate you guys always rallying around us and standing with us.
Will keep you posted! I'll get some pics up here soon too, as I know those are way more fun than just updates! :)
We love you guys! You are all incredible~
Wednesday, March 3, 2010
Veiyah was admitted to the University this afternoon. I almost called 911 but we crammed oxygen in the back of the car and took off. Her temp was up to 104 when we got here, her sats sitting at 63-65. She is coughing a lot and throwing up at every feeding. We've all been sick this week at our home. I went on a cleaning spree and it didn't help much. Jeremy is very sick and is home resting. I am here with my big helper Madi, staying with V. She is getting fluids and Tylenol and Ibuprofen to help with her fevers. She came down to 100.3 and now is resting and down to 98.9!! I was already giving Tylenol every 4 hours, and we also were doing blow by oxygen, but it wasn't enough at home. The fluid is definitely helping.
I will be updating as to how she is doing and what they find. Asking for all of your prayers! We're looking at surgery soon. Trying the Glenn again, and she needs to be well for any surgery. Pray there is no infection. Surgery is hopefully set for late spring/early summer. Let's keep it that way V!!!!
Thanks everyone! Miss you all!!