Baby Eagan - NICU Day 37 - Frustrated

Eagan had a not quite so great day today. His bradycardia episodes were very frequent, some even back to back. He was moved to an isolation room. This should reduce stress from his surroundings and attempt to prevent infection since his very weak immune system makes him at a very high risk. His Jackson-Pratt and Penrose drains have suddenly stopped draining fluid. The surgeon is currently not positive whether there is simply no fluid to drain, which is pretty unlikely, or if something else is going on. 

Unfortunately, today has just been not as smooth. I spent the day fairly frustrated. We have had great experiences with our nurses for the most part. Today, I told Eagan's nurse that his IV had blown. I knew it was beginning to swell and I had caught it fairly quickly. The nurse looked at it and determined that she did not think it was blown. The thing is, I spend all day watching the every move of this tiny child that can fit in my palm. I knew this morning that he would need a transfusion and the blood test would come back that his hematocrit was low. How did I know this? Simply by looking at him. When the nurse told me he needed blood, I just nodded. She asked me had someone already told me, and I just told her I knew from looking at him. It is his twentieth transfusion. I can tell when he is starting to drop his heart rate just by watching him. I can listen to him and know he needs to be suctioned. I don't have any magical skills, but when you watch a baby for 15 or more hours a day, every day for 37 days, you figure these things out. It was determined a few minutes later, that yes, the IV was blown. Welcome to the NICU, the most frustrating place on the planet. Just to clarify, I do not have a degree in medicine and the doctors and nurses truly are amazing. The difference is, I know this kid. I know where every heel stick, IV, PICC line, etc. have been. I know how he likes to be positioned. I know when he is himself and when he is not. If it is your first day ever laying eyes on him, you probably should listen just a little to the person who has spent over 550 hours right next to him. Preemie moms - advocate, advocate, advocate for your baby. You know them best. For most people, a blown IV wouldn't warrant a huge paragraph. A blown IV on an adult can be painful. Can you imagine how it feels on such a tiny baby? The nurse could have prevented just a little extra pain for a boy who has had so much of it in his short life if she had just listened. 

This is Eagan's bed and everything that is attached to him. In this picture, the bed is open. Normally the section with the blanket is covering him. I made the blanket for him after I came back to my room one night. The artwork hanging off the end of his bed was colored for him by his big brother and sister. The machine on the left side of the picture is his ventilator. The tower of pumps on the right side has all of his medication, TPN, lipids, and replacement fluids. The lit up screen below the blanket controls his temperature. The screen displays his heart rate, blood pressure, respiration, and oxygen saturation. The box at the foot of his bed measures his urine. All of these things help take care of that itsy, bitsy boy in the bed.


Here is a run-down of his current status:

Weight
Eagan was not weighed today or last night.

Length 
14" at last measurement
 
Breathing
Eagan is now on the conventional ventilator. His settings were at 26 breaths per minute this morning, but by this evening it was at 35 breaths per minute. His oxygen rate was between 25% and 45%.

Vitals
Eagan's blood pressure was too low today and has several bradycardia episodes.

 

Vein and Artery Access
The arterial line is in his head.

 

Eagan had an IV in his head and left arm this morning, but both blew so he now has a new one in his head.

 

A CVL, central venous line, was placed during surgery. 

Medications

Sodium bicarbonate is being given for acidic ph levels.

Calcium gluconate is being given since his levels were low in his blood work.

Hydrocortisone has been started to help with blood pressure and stress response.

His Dopamine is up from 3 micrograms to 8 micrograms.

 

Eagan is on Vancomycin and Meropenum - both antibiotics, Amphotericin for the yeast infection in his blood, and Synthroid for low thyroid levels.

Nutrition
Eagan's only sources of nutrition right now are his TPN fluids and lipids.

 

Output

Eagan has a foley catheter in place. His urine output was a bit better today.

Transfusions

Eagan had transfusion #20 of blood this afternoon.

Thank you for all your love, support and prayers.