Day 20

     On Monday, August 15th, we found out that there would be no trial off ECMO. An ECMO trial is when the ventilator settings are turned up while the life support cannulas are clamped down. Aiden and the vent work together to maintain his "stats". Aiden did get a cranial ultrasound and his bleed is still considered stable. Aiden's bleed has been classified as being a Grade II, which is considered moderate. Bleeds catergorized as Grade I or II mean that the long-term damage is small because the blood remains contained within the ventricles and the additional fluid does not cause excessive pressure. The neurologist team at U of M are following Aiden closely because of his bleed. Aiden receives a cranial ultrasound every Monday, Wednesday and Friday to follow his bleed. They have found that because of his bleed the ventricles in the brain are dilated because there is no where for the bleed to go so they have discussed putting in a temporary shunt if needed after he comes off of ECMO. They stated that this may or may not happen and that usually after babies come off ECMO the bleed reabsorbs. We are hoping for this too. The cardiology team suggested that we keep Aiden on Vasopressin which helps to regulate the body's retention of water; it is released when the body is dehydrated and causes the kidneys to conserve water, thus concentrating the urine,  and reducing urine volume. Cardio also suggested we go up to 20 on Flolan, this medication is used to treat high blood pressure in the lungs (pulmonary arterial hypertension). Aiden is still having issues with peeing too much and peeing too little which in turn affects his sodium levels. The Endocrinology team is now working with the doctors and nurses to figure out Aiden's plan. Aiden now works with the Pediatric Surgeons, the ECMO specialists, the Endocrinologists, the Urologists, and the Cardiology team. WOW! I have a hard time remembering every little thing that each doctor tells me and now you all understand why because there are so many teams that work with Aiden daily. I am forever grateful for each and every one of these people.


     On Tuesday, August 16th, I found that Aiden was going to have a day of rest and the teams were all working together to figure out his plan. I was definitely okay with this because I had planned on my oldest son, Cole coming to Michigan for a day of fun. My dad and brother drove to Michigan with Cole. My mom was going to leave with them at the end of the night because she has been here for about a week. I spent the morning at the hospital and waited for them to arrive. When they showed up, we spent some time at the RMD House in the playroom of course. I showed Cole a bunch of games that I got for him for free from the hospital. We then went to lunch and to the Hands On Museum which was free. It's like Science Central in Fort Wayne, Indiana.  Cole had a blast! After the museum we went to the hospital so Cole could see Aiden again as well as my brother and dad could visit too. Cole was much more interested in the playdeck on the 8th floor of the hospital. He did tell Aiden he loved him and we were able to contain him to take a picture. After playing on the deck at the hospital, we headed back for dinner at the RMD. Everyone left around 8pm and I went back to the hospital for about an hour before I headed back to RMD for the night.


On Wednesday August 17th, I went up to the hospital where I stayed for the majority of the day. I met with the Pediatric Surgeon, Dr. Geiger and Dr. Ruiz. The plan was to trial off ECMO in the next day or two and then to have Aiden rest for a day or two and then do the repair surgery. This is the plan but the plan always changes because it is up to Aiden on what we do next. I also met with the Endocrinologist team to get some family history. They are looking into the renal gland or pituitary gland which could be the culprit for the peeing problems that Aiden has been having. Sodium seems to be the biggest concern and endocrinology has stated that they are leaning more towards the pituitary gland and thinking that Aiden may be in need of supplements as a short-term or long-term plan to maintain his sodium levels. I was able to help change his diaper again, take his temperature throughout the day, rub his head, hold his hand and hum to him like I do every day. Aiden loves when I hum to him! He always seems to settle down when I am by his side. He also loves his mommy's breastmilk. He receives some of my milk on a long q-tip that I put on his lips and on the inside of his mouth. He sucks on his bottom lip when I do this.

Thanks for checking in on Aiden. Thank you for all your support and prayers. Continue to keep praying for Aiden. He has a tough rode ahead of him and this is only the beginning. Pray that we figure out his urine issues. Pray that his bleed remains stable. Pray that the bleed reabsorbs itself and the shunt is not needed. Pray the his PPHN remains in a good place. Pray that this little guy comes off ECMO with no problems. Pray that his repair surgery is successful.