So, how would it feel if the doctors around you say they have never seen this before? Well, for Scott and I that is our reality with Emma’s condition. Emma is a complex little puzzle and the doctors are working very diligently to try to put those pieces together to try to get Emma better. Emma has seen several pulmonologists, cardiologists, intensivists, gastroenterologists, ear/nose/throat specialists, urologists, and nephrologists. They have poured over her medical history and to be completely honest, are stumped by some of the ways she is responding. They are not giving up on Emma and neither are we! Emma has proved that she is a fighter, so we all battle on to try to determine the best plan for Emma.
Emma is having nutrition problems. This has been an area that we have struggled with from the beginning. Emma drains fluid out of her chest cavity. They have tried several methods to stop/slow down the drainage and have been relatively unsuccessful. This drainage makes it hard to properly digest important nutrients. They have just started Emma on a steroid regimen to see if it will help with some of her nutrient loss. For those of you that know a little about steroids, you know that they are immunosuppressants. Since this is the “sick time” of the year and this new medicine is known to lower immunity then we will be cutting down on visitors in Emma’s room. We hope and pray that everyone will understand that this is in Emma’s best interest. There might even be times when Scott and I can’t be back with Emma. Emma should be officially listed on the transplant list this week. Due to being on the vent and other heart meds, she should be listed as a 1A which is at the top of the list to get a heart; however, if she were to become infected then she would be temporarily bumped to a two which would prohibit her from getting a heart until she became uninfected. So, as you can see, it is SUPER IMPORTANT that Emma stays well. As hard as it will be to be so secluded, it is to get Emma better!
Emma had a good day on Christmas and was a happy baby who enjoyed visiting with her company. See recent photos below of Emma:
|Emma's first Christmas!|
Specific Prayer Requests:
1. Pray that Emma can gain weight and nutrition
2. Pray that Emma can come off the vent
3. Pray that Emma can have good blood gases
4. Pray that Emma can stay infection free
5. Pray that the PERFECT heart will be generously given to Emma
6. Pray that the Doctors can figure out the best plan for Emma
7. Pray for the future donor family
8. Pray for the doctors, nurses, and staff in charge of Emma’s care
9. Pray for the other kiddos: Ella, Ella, Lyric, Blake, Justin, Haven, etc. who are fighting their own health battles
10. Pray that Scott and I can stay strong through this process