“out of the box”
As of 6pm today, Tyler received an equal number of red blood units as he did yesterday. Staying even isn’t the same as getting better, but it’s better than requiring more units as he had been daily. Also, the doctors just met and offered us an option to try a drug that is definitely “out […]
heavily sedated again
The “out of the box” med doesn’t appear to be working. Tyler’s abdomen is more distended and hard, and they are pulling lots more blood out of his stomach through his oral gastric (OG) tube. He is at this moment receiving 3 units of blood because his blood counts dropped throughout the night. Tyler is […]
no more medical options
Ty’s condition is now complicated by an obstruction that is preventing the blood in his stomach from passing out of his body. This is very painful. The blood is pooling there in increasing volumes, causing his stomach to stretch painfully and risk perforating as he continues to bleed. This means continuing to transfuse him with […]
no surgical options
We’ve completed our meeting with an adult surgeon, pediatric surgeon, and the rest of the team as far as the possibility of surgery. Our pastor attended the meeting with us and summarized as follows in a prayer request sent to our church. I just wanted to extend that request to all. Thank you so much! […]
a new plan
I know it’s been way too long without an update, but most of the day I haven’t known which end is up. We have had a series of back-to-back meetings and discussions with doctors today. A lot has changed and a lot has stayed the same. The same: Tyler still needs complete healing of his […]
more challenges
Tyler’s presenting with a few more challenges for his medical team. Please keep praying hard for the blood to finally move out of his body and for his tissue to heal and stop bleeding!
wrong direction
Compared to three units of red blood total yesterday, Ty has needed seven today. He is clearly bleeding more, and that’s with the support of the clotting medication. Definitely a change in the wrong direction from yesterday! Other than giving him more blood products, his team is really not sure what to do. He is […]
glimmers of good things
Some glimmers of good things tonight after a day of uncertainty…please pray the current trajectory continues!
a see saw
The see saw continues. Ty had a terrible night. One crisis after another meant he wasn’t able to get blood products when he needed them and even ran out of one of his sedatives at one point. A serious issue is that one of his PICC line lumens is now clogged, so he needs another […]
stabilized
As of this evening, Tyler has finally stabilized. He is better sedated, his blood pressure needs less support, his coloring is better, and his red blood counts are once again hitting the goal levels when he receives blood products. They were able to avoid placing another PICC line by getting an IV into his hand. […]
second prayer vigil
Ty continues to be stable, but with a LOT of work on the team’s part. In addition to the amicar to help stop his bleeding, he got another treatment of Factor VII yesterday. Later today the amicar will be replaced with tranexamic acid, which is more powerful than amicar. He’s had some ventilator issues – […]
bleeding at a faster rate
Every day I hope for signs of healing, but I would also accept just a simple, boring day in the PICU! Over the past two days, less and less blood could be pulled back from Tyler’s OG (oral gastric) tube. Despite his increased distension, the doctors were hoping less blood meant less bleeding. This afternoon, […]
God knows
Today is a new day. Tyler’s bleeding hasn’t slowed down on the new drug, so they will increase the dosage. He continues to retain fluid and be more swollen. We are praying so hard for him to get better. I keep envisioning him with a full head of hair, working on his rehab with determination […]
update
They were unable to go up on the dose of the new medication, tranexamic acid; in fact, they had to discontinue it pending reapproval since Tyler’s bleeding did not improve after the first 24 hours. He is getting another dose of Factor VII and going back on amicar in the meantime. Nearly another two liters […]
angiogram
If you can take a moment to pray right now, Tyler is at this moment undergoing a two to four hour angiogram under general anesthesia. Any procedure is risky for him; this one especially so. A lot happened last night. Tyler’s type of bleeding changed overnight to a much faster flow. He required lots of […]