The Kreman Family

Sloane update 12/21/2022 Today marks 6 weeks that we have been in the PICU at Children's Mercy in Kansas City. Sloane is such a warrior girl, she has truly shown us what strength is. She is truly a bright burst of light and love to everyone that she meets. Even after all that she has been through. I am going to recap and give our newest update just to keep things streamlined, as I know that many people are following her journey. - On Nov 7 I took Sloane to the Dr's office to get checked out because she wasn't getting better from her cold, in fact seemed worse - Upon arrival to the office she had a very low oxygen reading and was sent to the ER. In the ER she was diagnosed with RSV and Parainfluenza and pneumonia. - At that time she was placed high flow oxygen and was then flown to Springfield PICU - Once in Springfield she continued to decline and was intubated and placed on a ventilator. Things were not progressing, so they decided it was best to ship her to Children's Mercy in KC. - Upon arrival to KC she was treated and remained intubated and had a variety of testing completed. Chest imaging and cardiac imaging showed that she had an AVM in her left lung - An AVM is a blood vessel malformation that causes low oxygen blood from veins to mix with high oxygen blood in from arteries, causing lowering of the blood oxygen. Several illnesses can cause these to form, so genetic testing was sent off to look for these illnesses. - She was successfully extubated on 11/11 - She was taken for a heart catheterization on Dec 1 and at that time was found to have much more diffuse (widespread) AVM than originally thought based off imaging. At that time 3 coils were placed in the AVMs in hopes that it would "block" them. They did not get the results they were expecting. - She was weaned off Nitric last week (a gas that was helping her lungs to "accept" oxygen better"), but started to have worsening oxygen levels so they restarted her Nitric, which she remains on now. - She is totally back to herself and is full of personality and spunk, from this standpoint it has been very hard as she's tied to her room with tubes. - The genetics panel came back and she is negative for HHT, a gentic disorder that causes AVMs. She does closely mimic an HHT patient so the HHT center in St Louis is going to closely follow her. For now this means there is no concern that the other kids have what she has. This was our biggest fear because if she was HHT positive then we would have to screen the other children and worry about them developing an AVM. - Negative HHT....then WHY does she have the problem them? We don't know and maybe never will. For some reason she grew the abnormal blood vessels in her lungs, meaning it is congenital and is just a part of how her body grew and developed. - In the interim, the team has reached out to Boston Children's who has reviewed her case as well as St. Louis Children's Hospital. The team in STL has asked that we establish with them, as they have all reviewed her case (pulmonary, cardiac, ICU, lung transplant team, HHT team). -They have decided that they would like to have her transfer to them now, to continue to work with her and to move forward with more testing. They will likely do another heart cath to do some further embolization if possible. They also want us to go ahead and establish with the lung transplant team so that we have all of our ducks in a row if we get to that place. - We feeling every single emotion that you can possibly imagine right now. We feel helpless. The only thing that we can do is stand strong together and guide Sloane and our other kids as we walk on this journey. It is something that we never thought we would have to go through, just like many other parents before us. - We are waiting on all of the insurance and social work stuff to be completed and then we will transfer to STL. I will keep everyone posted on our next steps moving forward. Thank you from the bottom of our heart to all of those who have and continue to love us and our kids through this unimaginable journey.