Easter Weekend

So it was a very busy weekend, followed by a busy Monday. Caelin is currently doing alright but his forward progress has recently been accompanied with a few bumps and speed limit signs (apparently he is trying to go too fast for his little body).

Saturday Caelin’s noisy and raspy breathing continued which led to a visit from the ENT (Ear, Nose, and Throat Specialist). The ENT examined his vocal cords and declared they are both functioning, which fortunately typically rules out paralysis. On the other hand, this means they need to continue to monitor him to diagnose exactly what is causing it. The intensivist and cardiologist are suspicious of Laryngomalacia but really cannot diagnose it without a bronchoscopy; however, they do not want to do a bronchoscopy yet because it is another invasive procedure for which Caelin would have to receive anesthesia and be re-intubated. In addition to the noisy breathing, Caelin started throwing up frequently. He was receiving breast milk through his ND tube but it was not milk that was coming up; it was mucus, phlegm, and at times some yellow bile. This also puzzled the doctors and they are not quite sure what is the cause. On a more positive note, Caelin was able to take one full mL of breast milk with his pacifier. He sucked on the pacifier while Mommy inserted a syringe full of milk and slowly pushed the milk into his mouth. As he sucked, he swallowed and began sucking vigorously. This is a good sign for the future!

We hoped Sunday would be a day full of promise- if not positive progress, at least happiness. It started off with Caelin not getting much rest but he had a visit from the Easter Bunny and this made Mommy excited! He got two baskets (one from the hospital) and a musical bunny from Grandma, as you can see in the picture. But it quickly became a morning full of throwing up. He threw up 8 times from 7:00 AM until about 1:00 PM and each time there was a significant amount of mucus and phlegm. Although from a Cardiology standpoint Caelin was doing well, we were highly concerned with the recent developments regarding Caelin’s health and how it was affecting him and how it could affect his heart. So we waited until almost 1:15 PM for the doctors to come speak with us during rounds; however, there was an emergency in the PICU that required the doctors’ attention that kept delaying their rounding to each patient. So our nurse told us we should go get some lunch because it didn’t seem like the doctors would be coming any time soon. We did. We came back to the Charge Nurse outside of Cael’s room, our nurse in Cael’s room with the respiratory therapist, and Cael pale as a ghost, breathing at a low rate, and receiving oxygen. Daddy’s legs felt like Jell-o while Mommy’s heart began racing so much she felt nauseous. For over an hour his respiratory rate resided in the low teens, his oxygen saturation level would rise out of the 60s, and his skin was milky white. Our nurse tried contacting the doctors but they were tending to the emergency in PICU. Mommy was beginning to panic and lost her patience with the nurses and respiratory therapist- she wanted a doctor to help her baby and there was not one available. After sending several pages to the doctors, Cael’s nurse sent an emergent message to them and they arrived. We were incredibly thankful for the nurse being a strong advocate for our son because the situation needed to be assessed by a doctor and one was not coming. When they finally did arrive they viewed his trending numbers and stats, got him on vapo therm, ordered a blood culture, a blood transfusion, and then discussed possible causes. Then one of the doctors took Cael’s nurse outside of the room and scolded her for her actions. This upset me because what she did was right! She wanted to control the situation before it became an emergent one and if the doctor was really that tied up with the other patient, then another doctor should have been asked to come in to assist. We thanked the nurse but we also thanked the doctor for coming and stressed to her that something was seriously wrong with our son and something needed to be done before it was too late. They put him on 40% oxygen with 4.0 liters of flow and after a little while this helped bring up his stats. They still are not sure what caused this episode but they have a few possible things in mind. So needless to say, it was not quite what we had imagined the first family holiday would be like. :/

Today he continues to be on the Vapo Therm but by 4:00 AM he was down to 21% oxygen which is the level in room air. What is helping him the most is the humidified flow. The doctors want to try to wean him off of the Vapo Therm but we do not want them to go to fast because it seems like his body needs the extra flow and is benefitting greatly from the humidified air. Unfortunately we cannot bring in a humidifier for his room because of the bacteria often associated with them. So around 2:30 PM his flow was dropped down to 3 liters and at 5:30 PM to 2.5 liters. The speech pathologist stopped in to practice feeding but she did not know about the cannula and high flow level. So before we can start back with oral feeding, he must be below 2 liters of flow.

They took him off feeds yesterday with the throwing up and the respiratory issues. They restarted them this morning at 8 mL/hour to monitor how he does and if he experiences any acid reflux. He needed to get a chest X-ray to check the placement of the tube because it sort of looked like it looped back around into the stomach. The X-ray this morning was still inconclusive but Cael has shown no signs of it looping back. He is also receiving a medication to help prevent reflux. At midnight the feeds will go up to 16 mL/hour. Since his feeds are getting so close to target, they are discontinuing his TPN and Lipids infusions. Before we can start actually breast feeding, he must meet the goal of 20 mL/hour and be able to tolerate it in his stomach. He will be at 20 mL/hour through the ND tube at midnight on Tuesday. Hopefully on Wednesday or Thursday they will pull the tube back into his stomach (NG) and monitor how Caelin’s body responds. If he does well, we should be able to start breast feeding by Monday of next week. If his body is not ready, then we will give him more time.

His color and stats are much better today and his noisy breathing and coughing is very minor. Again, the doctors still are not sure what caused all of these recent symptoms but they are doing what they can to figure it out. Despite these slight improvements, he tested positive for Cocci in clusters, otherwise known as staphylococcus or a staph infection. :( Because of this they started him on antibiotics and are retesting to confirm. The initial blood culture was drawn from his left Atrial line. So to recheck they drew two different samples. The first came from a venus puncture blood draw and the second a urine sample. But the urine sample had to be sterile so they had to insert a catheter to pull out the urine. He was such a cooperative boy considering everything he had to go through today!