Back to the hospital we go!

It has been a crazy week. Since we first came home we have been back twice to the hospital. We last went home Tuesday and Tuesday night we were back were we started. We can not figure out what is wrong with Victoria. Still getting fevers and her mouth is really bothering her. She has white stuff on her tongue so they originally thought she had thrush but I really do not think so because the only thing that makes her mouth feel better and her fever to go away is antibiotics. So the doctors start her on antibiotics and then nothing shows up in her lab work as far as bacteria so they stop them and then go home and she gets fever and sick and keep going in circles with this. So she is on antibiotics right now and finally feeling better again. I hope they keep her on them regardless what the culture shows. They moved Victoria from the ICU yesterday so things have been more laid back for us, but of course its not home. Please continue to keep Victoria in prayer. As usual we will keep you posted.

Quick Stay at the Homefront!

Sorry we haven't been able to update for awhile. Victoria came home for five days but became sick and ended up back in the ICU. Things have been really crazy at the homefront. Our computer has not been working so I couldn't update, but now that we are back in the ICU I again have access to the computer and internet...... It felt sooooo good to be home again with our angel. But she had a fever from the first night she came home. I thought it was just teething but as the week went on she got worse. Her heart rate was really high and she was on around the clock Tylenol and still the fever would not go away. She was unable to sleep for more than an hour at a time so we thought it was just her getting adjusted. We soon learned that was not the case. So the first night we were home, I get a call from her Immunology Doctor telling me that blood work came back indicating that Victoria has an immune deficiency because her T cells are extremely low. They put her on an antibiotic for maintenance called bactrim. This will help her immune system. We are still learning what this will mean for her health, its not really the news we wanted to hear her first night home. Grandma and I have been extremely tired because of being up all night with her taking turns. She just wasn't feeling well. She was acting like her mouth was on fire so I thought of teething. Come to find out that she has a fungus called thrush in her mouth so bad that her tongue turned green. She also got such a bad rash on her face which we also think is a fungus not really sure yet. She became so sick on Saturday night that we were debating to call 911. She had a higher fever and tachycardia and really acting miserable. But we made it until Sunday morning to go to the ER at Miami Childrens. They have run a bunch of tests on her with the suspicion of mono. Now we are just waiting. She has been sedated all day because they gave her a really high dose of chloralhydrate so they could do an echogram of her heart. So for now it is just wait and see. She has not had a fever since 10:30 last night. But something just doesn't sit right with me. Her head has been really swollen and I worry about that too. My mind is really fried right now.. so I should quit babbling .... Stay tuned for Victoria's Journey.. Please keep Victoria in prayer..

The Rock Star

Another visit from big brother EJ

Finally....We have a date to go home!

We have been really busy getting ready for Victoria to come home. She should be going home Monday. There are many things that have to be done. All her equipment for home, home nursing, meds, and clothes. She went to the hospital wearing size 8 months and now she fits into 24 months - 2t...... She had an off week with fever and fussiness and a lot of secretions but nothing serious. I still think her not feeling well was from her synergist shot... she started to feel better on Friday.. and is doing good over the weekend. On Monday she will be having a hearing test called ABR.... That is the last thing that needs to be done before going home. I have remained pretty indifferent about it because I don't want to get too excited too soon and then not make it home. So Dad and I have been hanging on the down low just waiting for Monday.

On with Victoria's Journey!

Well, of course Victoria had to throw another curve ball..... Last night she spiked a fever and became very tachycardia. Her heart rate was around 260s. I am wondering if it is do to a shot the docs gave her yesterday called synergist. It's a vaccine to help prevent her from getting RSV which can make little ones with heart conditions very sick.... so they say she should get one every month until she is two She used to act up whenever she got this before. So I really wonder about this shot for her..... ??? She has not slept in about 20 hours and she is totally restless and hot.... She finally fell asleep and I am here standing guard to make sure nobody comes in to wake her up. She has been through a really rough 24 hours.... The doctors were talking about her going home this Friday but I do not think that will happen but I still think she will be home very soon. Please continue to pray for our little angel...... That is what really gets her through these crazy times..

I'm 16 Months Today!

Hello Everyone....It's been a really good week here at the CICU. I am getting ready to go home. They are talking about next week or week after. I am off of the breathing vent and just taking in oxygen now. I also have to change my formula before I go home. I have been on a lower fat formula called portagen. I am going to switch to a organic formula called pedia smart.... I am still fed via my G-Tube.... but I can't wait to start my feeding/speech therapy again with Dr. Simone so I can have another swallow study to eat by mouth. I have been very happy playing as much as I can with my cast on my leg. No word on how long it will stay on. I will keep everyone posted on my progress. We appreciate everyone's prayers..... Take care for now...

I finally made it out of the ICU

My Doctor thought it would be good if I go out and get some sun today. The Vitiman D from the sun will help my bones and many other things. I was so happy because I got to wear my new sunglasses too. So my nurse Diana, Dr. Soler and Oni helped take me outside today. I loved it! I felt like a little princess...

I haven't seen the sun since March... I love it

Awe.....What a week!

Quick update. We found out Friday that Victoria also has a compressed fracture to her lower vertebrae L3. I knew that she had something wrong with her lower back too because ever since that Monday after physical therapy she cried when we changed her diaper along with her leg hurting her. I mean CRIED and still CRIES sometimes it takes 2 nurses to change it. There is nothing one can do to help her back but time. They have sent off blood tests to see if her vitamin D, Calcium, and other minerals are lacking. She has been on a special formula since March after her Heart Surgery because she developed a fluid that lined her left lung called Chylus which will increase with fats from infant formula. We will be working on changing her formula next week.