Working on Feeding

Caelin did not have a very great night Monday night. He was awake, agitated, and inconsolable for most of the night which is very different from the night before where he had cycles of sleeping and being happy, alert awake. He puked up mucous three times, yellow bile and mucous once, and had another breathing episode where his respiratory rate dropped and his oxygen saturation went down to the 50s. He was so irritable the nurse decided to give him a dose of Morphine. Although it made him sleepy, he was still fighting through it. For the rest of the morning Cael was in and out of sleep. He was consolable and went back to sleep when he awoke but he was in light sleeps. We attribute this to the fact that they went from 8 mL/hr to 16 mL/hr on his feeds and his body was just not happy with that decision. After he threw up (emesis) in front of one of the doctors, he finally realized that maybe Caelin is being affected by the higher dose of feeds. Caelin's breathing has gotten better since he has been on the Vapo Therm, so they have kept it all week but plan to take him off of it tomorrow because he is on the lowest setting. They said he can go on a different type of oxygen machine (high flow) if he needs the humidified air. His breathing is still noisy and they suspect laryngomalacia. but they do not plan on doing a bronchoscopy. So ultimately the doctors are not positive about what is going on with his breathing and have even less of an idea of what to interpret with his eating difficulty but they have started running some tests to rule out major concerns.

Because Caelin was throwing up they decided to reduce his feeds and start slowly again. They have not yet figured out why he is retching and experiencing emesis but they think that part of it is his body needs more time to allow good profusion to his GI track. The first test they did is called an Upper GI Track. This is to check the anatomy of his digestive system. During the test he retched and vomited but he should not have. This confused all the lab technicians and still has the doctors puzzled. Mom thinks it has to do with the tube hitting a reflex, but the doctors do not believe this is the case. The cardiac doctor says it is GI related while the GI doctor says it is cardiac related. So we are left with doctors having conflicting ideas and beliefs and no real answers. This is one of the most frustrating parts about this whole process- Mommy and Daddy have a complete lack of control. With our personalities it is difficult for us to lack control in any situation, but the lack of control with helping our son to recover is heart-wrenching and frustrating beyond belief. So poor Caelin has gone back and forth with being fed. As of now, the plan is to increase by 2 mL/hr daily. He is currently on 6 mL/hr and his goal is 20 mL/hr. If this is the plan they continue to implement, he will reach his target consumption on Thursday, April 19th. We were hoping to go home around that time, but it is seriously looking like that's not going to happen. At this point all we can do is hope and pray that he will be able to handle these baby steps and will be able to come home some time in May. .... On a more positive note, he is still allowed to work with the speech pathologist on oral feeding. Today he took 3 mLs in a row! He sucked and swallowed them down like a champion!!... Only 17 mL more to go in an hour! lol But the speech pathologist was very proud of him, as were Mommy and Daddy! :)

The second test they did was a protein intolerance test. They are checking this to see if his body is having difficulty digesting my breast milk. If he is intolerant, Mommy will have to stop eating dairy products if she continues to pump. Otherwise, they would switch him to a special formula in which the protein is already broken down.

Caelin's blood count was also really low on Tuesday night/Wednesday morning. His hematocrit was at 32.8 and his hemoglobin was at 11. 7. Ideally they want his hematocrit above 40 and his heoglobin above 15 so he received a blood transfusion yesterday. Because of these low numbers, they checked his stools for blood. In 2 of 3 stools there were microscopic traces of blood which could suggest some sort of bleeding in his body. The doctors say they are not concerned with the microscopic amount in the 2 of them because it is most likely just residual blood. If there were more, they would have more to be concerned about. He also had a head ultrasound which came back normal- THANK GOD! With the results of these tests, we are assuming his blood count was so low because his body has just not been able to replenish the amount of blood fast enough that is being drawn from him on a daily basis.

In other news, they still have not made a decision on which medicine they are going to switch him to from the Heparin. He is still on 21% oxygen and 2 liters/min of flow from the Vapo Therm but will be coming off it tomorrow. The doctors continued the wean of the Fentanyl and he came off it Wednesday night at 11:00 PM. To help him transition off the potent drug, they are using Methadone. Sean and I were apprehensive about this at first but after the doctors explained why it would be the best route for Cael, we agreed. He is receiving Reglan for acid reflux, although they are not sure if it is actually helping since his tube is ND and he is throwing up bile and mucous instead of breast milk. Although his blood culture and urine culture are still negative for growth, he continues to receive an antibiotic for the Staph infection, as well. The doctors came down in his Milrinone which decreased his blood pressure and strengthened the squeeze part of his heart. Because of them weaning him off Milrinone he is now on Enalapril.

I think this is the root of the updates- if there is anything I missed I will add it at a later time. It has been a very exhausting week for all of us- Caelin especially. Hopefully over the next two weeks Caelin will be able to come off more medications, get wires removed, and consistently feed... but we just have to take one moment at a time. Please continue to send positivity and prayers. Thank you!