Hunter & Karsyn's Journey with APS type 1

Karsyn had a appointment at Arkansas Childrens a few days ago. Her liver levels are still elevated. So she will need a liver biopsy as soon as possible and will be put on medicines probably right after. Right now we are having insurance problems with them not wanting to cover the hospital stay for the biopsy. Cody's insurance has open enrollment in Nov so we are hoping to put her on his and praying it will cover. We are still waiting to hear back on her disability status. We are trying everything though to get this all taken care of as soon as possible. Everyone please say a prayer for her and all our family as we are going through so much recently. On a side note Kayleigh has been having a tough time since Hunter passed away. Someone who is very dear to us gave us a English Bulldog puppy for her. He has light her up in the past day. We are looking into having him trained to be a emotional support animal for her autism. Its nice to see her play again. It's only been 8 months since we lost our Hunter and I know it will be different from now on but to watch her struggle with his lose hurts me so much.

We found out today that Hunter's cause of death was due to his Addison's disease. 😟

Karsyn has been having elevated liver enzymes. So he GI at Arkansas Children's is going to do a liver biopsy just to see why and possibly start her on medicines. While hospitalized they are going to get yet setup with Endocrine and Immune doctors up there too.

I will never recommend UTMB for anyone even Dr.Hertel herself. They are horrible. After being there 24 hours with them pretty much forcing us to have her transferred to TCH even against our wishes and googling an googling GI doctors who might see a baby with APStype 1 MeMe for the win. Mrs.Lisa googled all-day and called several hospitals and doctors and FOUND HER ONE!! Karsyn will now be going to Arkansas Children's Hospital where their GI doctor actually has APS type 1 kids!!!!!! And we got to go home for the weekend. He even told them that she could go home cause they kept telling us how sickly she was and Dr.Hertel told them this and this well he told them off. He asked about her results, and how she looked and acted and he told them she was fine!!!! Hunter thank you baby boy for watching out for your sister. They admitted to being misinformed by TCH and discharged her!!!!

We haven't updated in a while. Things were going good. But our world came to a stop March 5th. Our first born and love of our lives passed away in his sleep. We aren't sure why or how. But our world got turned upside down.
https://www.gofundme.com/hunter039s-funeral-fund?utm_source=facebook&utm_medium=social&utm_campaign=fb_dn_cpgntopstickysmall_r

Sorry we haven't updated. Karsyn was released Saturday from TCH. She's doing much better. She's been a little stand off-ish with people and cry's when startled or anyone talks to her unless it's mommy or daddy. But she was in there so long it will take her a little while to go back to her happy never meet a stranger self. She, Hunter and Kayleigh had a great Christmas. It was the best gift for me and her momma to have her home for Christmas.

Karsyn is doing alot better. Bp is still running high but she's getting a bp machine to take home and she will see renal in clinic like Hunter. She's off all monitors right now and even has been switched to oral meds. She still has her NG tube but only for medicines if she's mad or asleep. They cleared her finally to eat as much as she wants! So she's happy about that. The only thing keeping her here is pretty much the weening of the morphine and adavan.

She tried to get mommy to pick her up ☹️ she's ready to come home. She's doing a little better everyday. Drs think few more days in PICU (Pedi ICU) and maybe transferred to transitional ICU, West Tower or home. They are now trying to work on clearing her lungs with Respiratory therapy, her withdrawals, lowering her oxygen and her heartrate and bp. Still not sure when they will take Central line out of her neck.

They finally got her vent out at 10am this morning. After that she had extremely low heart rates. Gave her a med to raise it and it raised just her bp. And when I say raise I mean it. They were running at about 170/140. Well they finally got her bp under control and then she got high heartrates 170-180bpm. She finally is doing good. Currently her heart rate s 119bpm, oxygen is 94% and bp is 105/57. Now if we can only get her through the withdrawals from the sedation medicines. 🙁 Poor baby has the shakes. Right now she is finally resting.

Karsyn is doing great. She hasn't had any episodes. Her swelling even went down. One picture is from yesterday and the other today. It's amazing how within a few hours how she's changed completely. They took out Cath this afternoon but she hasn't peed since so they may ultrasound her tonight to see f she might just be holding it in. Today they stopped fentanyl to morphine. There are less side effects with the morphine and it seems to keep her calmer and relaxed. She also spiked a fever so they took some cultures of her central line in her neck and got some mucus from her vent and we should hear from those in 2-3 days. She just got her bath done.

Karsyn is still on vent. Cultures are still all negative. Oxygen varies throughout the day.
Earlier today she scared us all. Her heart rate dropped to 78-80bpm. Drs, nurses everyone ran it. They decided to put her back on the paralytic medicine to stop her from fighting the vent. She had her central line placed this afternoon and a blood transfusion also. They are monitoring her hemoglobin and it actually went from 62 to 85 after the transfusion. Right now her bp is low it's running at 82/52 they turned off the medicine keeping it up a little earlier. Heart rate is 107. And oxygen is at 98. Will update after we see Dr in the morning. Hopefully they have the results from her thryoid fuction test by then just to rule it out.