Isabel Warrior Princess
This picture was taken as a last family photo before Isabel was air lifted to Houston for a lung transplant. They had no idea it would be their last. Over the last few months this family has dedicated their lives in the well-being of baby Isabel. In doing so, they have lost a substantial amount of income, on top of accumulating A LOT of medical bills. We can’t really lift the emotional pain they are feeling but we CAN help lift the financial burden. This family has been through enough!! I hope you find it in your heart to help lift some of this pain they are feeling. Here are some post from Isabel Warrior Princess facebook page:
https://www.facebook.com/groups/276953029175069/
#IsabelWarriorPrincess
http://animoto.com/play/unOAsRMZDsyRRyU3Fky2ag?autostart=1
(Video provided by Casey&Jen Nelson)
"We officially will be leaving tomorrow for Houston! I cannot even express our excitement! I think Nelson Mandela put it so beautifully "as we let our own light shine, we unconsciously give other people permission to do the same". Isabel has always been such a beacon of light from her first moment and people have always been drawn to her. She is continuing to prove she is a warrior! A girl with more fight than everyone I've ever known. The last 24 hours Isabel has proven once ...again how amazing she is, we have been able to wean her fio2 to 54 and her sats are still sitting at 96, her PH and blood gases are AWESOME! She has continued to drain fluid and is at an optimal health for travel. A few days ago I will say I was extremely nervous for travel to Houston however I have so much confidence in tomorrow. I am constantly reminded that we are on God's time, he is not working on mine. Isabel and I will be traveling with a private transport company and one of their nurses as well as one of the transport nurses from Children's Omaha, 2 pilots, and one of my favorite intensivists who is also a pulmonologist! Damon will fly and meet us. We are so excited/nervous for the next phase of our journey. We know we have a long road ahead but we are confident we are headed where we need to be. Isabel will have an MRI and be looked over by their transplant team before she will be added to the transplant list. Due to the severity of her lung disease we believe she will be placed toward the top of the list to receive lungs! We were able to spend time with Roman today too, man do I miss that amazing boy! We are looking forward to our next family picture where Isabel can join us with her beautiful eyes and bright smile!"
"WONDERFUL NEWS!!!!! Dr. Kadlec our daytime intensivist just came in to tell us the AMAZING news that Medicaid has officially accepted our out of state transplant! This means no more hoops to jump through insurance wise! They are now working on the safest way to transport Isabel to Houston (most likely their transport team will come pick us up). Today has truly been our blessing in disguise! Isabel has been able to pull massive amounts of fluid off by peeing like a champ (I'm ...not even slightly embarrassed at how excited Damon and I have been all day talking about it). She is currently -375 ml's which means she could easily double that by morning! She is looking so much more like herself, her oxygen saturations have been awesome all day even on her back (which she hasn't tolerated in almost 4 days) and we have been able to wean her fio2 (oxygen) currently to 87. This is incredibly important as we need wiggle room while we fly as the altitude will change her oxygen needs. Her gases and PH have been awesome with her co2 levels looking the best they have in weeks and her oxygenation is amazing as well! Our night intensivist Dr. Trumper even told us he is planning to wean her vent because he doesn't want to over oxygenate her (yes, oddly enough it's a real thing... there is a balance just like everything else in life)! I know today as frustrating as it was when it began was just preparing Isabel for her optimum health before transport. I am grateful for this day of pulling off fluid and for the response of the Dr.'s as well as all of your love and support!"
"Update: Early Friday morning Isabel gave us quite a scare when she spiked a fever, her sats dropped and her co2 levels came up in the 150's/160's. Our pulmonologist came in and did an emergency bronchoscopy and lavage which seemed to help but her co2 levels still stayed relatively high as well as her PH staying low. We were quite concerned with getting her out of her acidotic state. At rounds it was expressed that they were really concerned for Isabel and then our pulmonologist came in asking if we could do a conference call with Dr. Mallory from Texas Children's Hospital around 2- we said absolutely! I can't tell you how hard I worked during this time makings sure all our insurance information was sorted out. I knew this was going to be one of the questions during the interview which could quickly disqualify us as a candidate. I received the call at 1:55 that everything was taken care of and we were escorted into the conference room just minutes later. The room was thick with anxiety however as Dr. Mallory started speaking and asking questions and going through explanations we started to feel a huge sense of excitement and ease. We were told that despite how sick Isabel is children are extremely resilient especially at young ages. He told us a story of a girl close to Isabel's age who was quite sick, got her transplant after 2 weeks and 10 days later got her trach taken out and is sitting on oxygen saturations of 100% on room air! He asked us our favorite memories of Isabel in the last 6 months and told us he will hold on to those memories until he meets her! I expressed our gratitude for him and his team and for giving us this amazing opportunity. So... you are probably wondering what this means. Insurance is working with the hospital in regards to transplant and transport. Most likely Isabel and I will leave Monday for Houston. We will take an ambulance to the airport where we will take a medical plane to Houston and then another ambulance to the hospital. The flight will take around 3-3 1/2 hours and will be risky and dangerous because of her oxygen needs and support. Her chest tubes are beneficial as we can use higher pressures if need be and if we get a pneumothorax the tubes are already in place to take care of the air. We will then be admitted to the ICU where we will do additional testings for Isabel's neurological function (a CT scan is expected). As soon as they determine Isabel's lungs to be the damaged organ and that her body is functioning optimally otherwise (which as far as we can tell it is) we will be placed on the lung transplant list. There are 4 other kids on the list in her age group. Lungs become available weekly. We may need to wait several months but the average wait for her will be under 3 months. We think about and pray for the families we will receive the donation from. We know what our gift means for them. We have had similar conversations ourselves. None of this is easy however we choose to focus on the good. Gratitude for our doctors and our every door that has opened for us. Love that is surrounding us and that we pass on in every moment. Peace knowing that this is God's plan. Faith moving forward without guarantees. Strength to fight everyday for knowledge alongside our Warrior Princess. We have a long road ahead but we are looking forward to it. We will be moving to Houston while we wait for Isabel's lungs and for several months after that. Isabel will most likely have a trach in the next few weeks so that we can take away most of her sedation and build up her strength while she waits for her new lungs. We are so incredibly grateful for this opportunity, knowing each day brings its own challenges, we can't wait to hear our daughter laugh again, we can't wait for her hugs and kisses and cuddles. We can't wait to hear the excitement in her voice when she sees a dog or aunt Katie! We can't wait for her to be able to be the beautiful and amazing two year old that she is! We can't wait for her to be able to BREATHE!"
