Hello Friends!
What a rollercoaster these last few weeks have been. I apologize for the delay in getting another post written, I know how many of you have been following Asher’s journey. It has been 7 1/2 weeks since my last post and there is quite a bit to fill you in on.
Over the past few weeks Asher has put on 2lbs 5oz, had two surgically placed PICC lines, was intubated for 4 days, had a heart catherization, a contrast enema and a colon resection. He has moved rooms 3 times and graduated out of the PICU!! He is officially IV drip free and is eating 2 ounces by mouth, his end goal is 2.7 ounces. He has been through all the things and is showing every single one of us just how determined he is!
After my last post and us moving back to the PICU Asher was treated for his blood infection and his recurring NEC infection. His treatment plan was a 6 week course of antibiotics and IV nutrition to give him complete bowel rest. Unfortunately, after a few attempts on letting Asher eat by mouth made his intestinal infection kept coming back. It was after that, that his team decided the best next step was to preform a heart catherization to see what the actual blood flow out of Asher’s heart was. We’ve always known that his shunt was too large for his body and was causing not enough blood flow to the lower half of his body. We just weren’t sure how much extra blood was actually going out to his lungs. The hope was after the heart cath we would have a better understanding if Asher needed to have an additional heart surgery to help get more blood to his intestines.
Asher had his heart cath preformed on September 10th and the results were inconclusive. We were thankful that Asher did not need an additional heart surgery at that moment, but we were beyond frustrated. Why was this happening? Why did his NEC infection keep returning if there seemed to be a decent amount of blood flow being sent to the lower half of his body? If I’m being truthful, I felt defeated. Here we were again, stuck with recurring issues and having zero idea of where to go from here.
After a few more days of trying feeds by mouth and see what happened it was time to tey and find a new plan since Asher’s intestines kept getting inflamed and his had more abdominal gas than ever. I spoke with the cardiology team, the infectious disease team, his pediatricians and the pediatric surgical team and it was decided that it was time to try a contrast enema.
The hope with doing the enema would be to see if there were any obstructions or issues within Asher’s intestines that we were not able to see on the countless abdominal ultrasounds that he was getting. He had his enema done on September 23rd and it came back with at least one known stricture. An intestinal stricture is where a portion of the intestines have narrowed making it really difficult for food to pass. Asher was still having bowel movements so we knew it was not a complete blockage yet. The surgical team did not want to wait long before getting the structure taken care of so his surgery was scheduled for Friday the 25th.
After an emergency add-on case and some internal hospital drama Asher was taken back for his surgery late Friday afternoon. The surgeon made sure to examine Asher’s entire digestive system to make sure there were no additional areas of concern. It turned out that he actually had 2 strictures and some additional scar tissues from the multiple reoccurances of the NEC. The scar tissue was small enough that they were comfortable leaving it in place. The strictures were removed totaling about 8cm of Asher’s colon. Fortunately, his bowels were healthy enough to be sewn back together and no colostomy bags were needed.
After about a week of bowel rest and a prolonged extubation Asher was able to restart small feeds by mouth. He has done a wonderful job and more importantly his body has handles each feed with flying colors! He still had a lot of abdominal gas and discomfort but after about a week and a half that finally subsided.
My baby has begun smiling again and it is just so beautiful. He has been such a light and I cannot wait for the day I get to share his beautiful soul and incredible smile with everyone that has loved him from afar. He is so strong and is getting so close to being able to finally see outside of these hospital walls! Asher will be 3 months old on Friday, I never thought this hospital stretch would be anywhere near this long but we can see a faint light at the end of the tunnel.
I’ve said it before and I will say it one million times over, GOD IS SO GOOD! 🙌🏻
Please continue to keep Asher in your prayers. Pray that he can get up to eating his full 2.7ounces by mouth. With the exception of getting his PICC line removed and weaning off his last sedative that is the only thing holding Asher back from being able to get discharged!
We appreciate all of you for following Asher’s journey, for praying for us, crying with us and just your unwavering support 💙 We will keep you updated on his progress, hopefully sooner rather than later.
