July 12, 2013
Gabby's back at All Children's Hospital again. This time for a false alarm fever. All cultures and test have come back negative, so they'll most likely be calling this a virus. Thank goodness! She hasn't had a fever in a long time and it made us a little nervous. Looks like she'll be coming home tomorrow and just in time for the weekend. We're so relieved and happy! Why am I noticing a pattern with admissions to the hospital during "J" letter months this year. Maybe this is the last one for the year? Ha! Sure hope so. Strange...
June 11, 2013
She made it 1.5 years on her central line! It finally decided to stop working completely last night and she's at All Children's Hospital recovering from surgery. Operation went well, the line is placed on a much better part of her chest this time. Not so easy for her to rip at her dressings anymore. Going to make this entry short, pretty tired from being up most of the night. A big thanks to everyone that sent prayers and well wishes!
January 16, 2013
This has been a rough month for us. Gabrielle ended up with a severe zinc deficiency rash all over her body with caused hair loss and a staph infection around her right eye. Along with the deficiency, she's dehydrated and feeling very ill. Looking back through her TPN orders, we found out she's not been receiving zinc since October. There is a nation wide shortage that we weren't informed of and certain companies are playing the blame game on each other for not telling us. On the brighter side, because of this negligence we found our ticket away from the Doctors in Miami. Dr. Wilsey, here at our home in St. Petersburg, is willing to take her on for TPN/Lipid management until we can get Gabby to Boston Children's Hospital. Once Gabby starts running into liver complications and her direct bilirubin is at a 2 or greater, she will qualify for the Omegaven study which she can stay on long term since it doesn't cause liver damage. These qualifications are set by the FDA since it's not been approved yet. It's a lot of work and a long way from home, but she's worth every penny and more!
So in a nut shell...
This month has been a blessing in disguise. We are thrilled to be away from Miami and the pressures of them trying to force Gabby into transplant and even happier the doctors here at home understood and took her under their wings.
December 31, 2012
All in all, this year hasn't been to bad for Gabrielle. Had a few ER trips and hospital stays this year, but for nothing very serious. She's going strong with her with central line, it turned a year old on December 15th, the longest shes had the same line so far. Still has had only one central line infection ever in her life and that was over 2 years ago! Pretty positive it wasn't from us though. Way to go dad for all of your hard work keeping her infection free. We've had quite a few close calls with Gabby almost pulling her central line out and came up with an idea to help keep her from picking at it. Was working good, but she's growing older, wiser and trying to out smart us.
We go back to Miami on January 17th. This is the most dreaded trip ever because they want to place Gabby on the transplant list. I don't want to go too much in detail about it just yet, but those who follow her on Facebook know whats going on.
2013. Wow, I can't believe it's been a year already. We have some big adventures planned for this year and with the help of some incredibly amazing people, Gabby can get there. We are so grateful and fortunate for all of our new friends and family that have helped with Gabby. We can not express how much everyones love and compassion have meant to us and our little girl. We would not be able to make this journey if it wasn't for your help. We are so blessed to know so many angels out there.
Since 2012 is coming to an end, I wanted to list Gabby's favorites things this year. Pirates! Can't deny that she takes after her father. She loves anything that has to do with pirates and especially the Disney Junior show "Jake and the Neverland Pirates". :) She has a new found love for mermaids, or "mer-may" as she calls them and "ho-ho" which is Santa. lol. She still loves babies/small children and will never miss a chance to wave and yell "Hi baby!". Even if they're 4 years old she still calls them baby. Cracks us up sometimes. Lastly, Gabby loves to sing and sing karaoke! She makes me replay parts of movies or shows she's watching just so she can sing with the song again. I once had to replay a song in a movie 8 times so she could sing to it. She must get that from me because I'm constantly singing. Her personality has really come out this year and she's becoming such a big girl already. Gabby is so funny and brings so much joy to our lives...she's our little miracle. :)
Gabrielle's visit from a super special Santa that traveled 13 hours to see her. We are thrilled she got to see Santa out of the hospital this year!! We love you Santa, "Ho-ho"!
April 29, 2011
Gabrielle has finally hit the 12 pound mark! Still the size of a 3 1/2 month old, but she's getting there. She'll be 9 months in two weeks. How time flies. We've been in the hospital two more times since February. No line infections, just fevers brought on by cold like symptoms but we still have to do the 100.4 fever head to the ER routine. Gabby's coloring still looks really great. Her liver is still healthy, thank you God, and her labs are the best they've been in a very long time. The volume of her TPN has been increased to match her new weight. In the next week or so we should be able to keep her off infusion for 5 hours now. This will make planning trips out of the house much easier.
This past month she is really starting to recognize what food and drink are which makes having meals really difficult now. As soon as she sees us put food or drink to our mouth she starts fussing. It's really sad and unfortunately something we have to get use to right now. We now try to have dinner during her playpen time. I can only keep praying there is a cure for this disease one day. Overall our last appointment in Miami went really well, besides all of the incidents with being admitted to the wrong floor, the elevators being shut down, the sick baby in the bed next to us, and getting back home at 3:30am. Come to think of it I don't think we've had one trip there so far that's gone as planned. Pretty scary. Maybe June's follow up will be better...we hope. :)
February 19, 2011
It's been very busy since my last entry. Since then we've had 3 more hospitalization's for fever. All of which are negative for line infection, thank God. It's mostly been for RSV and Flu virus. How she got them...no idea! She finally hit 10 pounds, but after her last hospitalization dropped back to 9. She did develope a blood clott in her central line and had go under surgery to replace it. The surgeon was fantastic! He was able to use the same vein and entry site to replace the line. Gabrielle has been doing so well since last week I hope it keeps up. She is finally getting to be a baby again outside of the hospital and IV's. Hopefully she can beat her 3 week record home with no admissions. Would be so nice to avoid the hospital for one solid month.
December 15, 2010
Four months old today! She's been in the hospital about 3 weeks now. All of her test are coming back negative and she still spiking mystery fevers. Just when they are about to discharge her, she runs a fever and the testing starts all over again. Ahhhhhhhhh! I guess from her latest xray they see some kind of blockage in her central line. They aren't sure whether it's a blood clott or something else. They basically said worse case scenario they would have to remove the central line and place it elsewhere. I keep hoping she'll be home in time for Christmas, but it's looking less likely that it will happen. Maybe we can get permission to bring her home for Christmas day from the hospital, who knows. Also, I would like to add a special thank you to all of my family here in Florida and up north with helping us out with Gabrielle's expenses. You all mean so much to us and you have truly been a blessing to our family. God Bless and Merry Christmas!
November 23, 2010
Gabrielle was finally discharged home yesterday about noon. Everything seemed fine except her white blood count was up alittle bit on saturday and came down a little bit yesterday. She also seems to be choking a bit on what seems to be a thick white foamy mucous, along with having the dry heaves and a cough. Anyhow she was still discharged. Today she is spiking a fever of 101.6, so just being home a little over 24 hours now we are heading back to the emergency room. I'm starting to feel like we will never catch a break.
November 16, 2010
So I was completely wrong about the line infection. I was called the next day to bring her back to All Childrens Hospital because her blood culture came back positive for staphylococcus hominis. She's been in the hospital 6 days now. Poor baby has had so much labwork done that they have to give her a blood transfusion yesterday. Her hemoglobin dropped down to 5.5 which is extremely low. Good news is so far she's testing negative for the infection in her line, which means its probably now gone. One more negative culture check to go before she gets the all clear. Hopefully she'll be home in time for her first Thanksgiving.
November 10, 2010
Well, we had our first trip to the emergency room last night since shes been home. She started to get a fever that reached 100.8, so at 11:45pm I was on my way out the door. The doctors took some labs, all of which seemed to be fine, but we are waiting for a blood and urine culture to come back still. Luckily, her fever came down on its own at about 4am, and she got to be discharged back home with a follow up at her pediatrician's office. I'm so thankful it came down, which leads me to believe that she doesn't have a line infection. The cause of fever is still a mystery though. She received some antibiotics just in case so we'll see how her results come back. Life is so scary...things can be fine one minute, then upside down the next. It really makes you realize how many people take such things for granted. Life is truly precious.
November 4, 2010
Gabrielle has been home for 3 weeks now. Everything has been so far so good, we have met a few people through the internet and joined a support group for MVID. It's nice to know there are a few other families that we can talk to for support and questions. We don't feel like the only ones anymore. We also found out one of the children "Sam" is on a different kind of lipid in his TPN that does not cause liver damage! We are thrilled! Only problem is this is still experimental and insurance might not cover it. We are going to mention it to Gabby's doctor when we go back on the 18th to see if she would be willing to try it. If not then we might be consulting with a physician in Boston. I just hope this doctor would be willing to try this it would be amazing to see Gabrielle with a normal skin tone, and know that the one thing keeping her alive isn't also destroying her at the same time.
