4 Months Old

Bright eyes after a bath.

Smily in the morning!

Cheesin' for Momma!

Rolled from his back to his side all on his own!!

Someone played a bit too hard...

We were tired. Daddy took a picture of us before waking us up.

Blue diamond eyes. My how they sparkle!

Daddy & Cael on his 4 month birthday!

Mommy & Cael on his 4 month birthday!

Nurse Dana & Cael on his 4 month birthday!

Caelin is officially four months today. We find it hard to believe that Caelin has been born for four months and spent every day in the hospital. Never did we imagine he would be stuck here for this long; nonetheless, that is our reality. We look forward to the day we can take our son outside for the first time and familiarize him with life outside of an ICU room.

Caelin is now on four medications for his heart: Milrinone (increased this afternoon to .75 from .5), Amlodipine (twice daily), Clonidine (three times daily), and Captopril (three times daily). Yes, they are trying the Clonidine once again. But this time it came in 0.04 mLs as opposed to 20mLs- so we are confident he is now receiving the right dose. When he was supposed to go home on Monday, he was only on Amlodipine. They added the other three because of his decrease in function on Tuesday’s echocardiogram and his hypertension. His blood pressures have consistently been between 100 and 130 systolic. In addition to these medications, he is still on Lasix twice a day. This morning the intensivist, Doctor Saltiel, increased this to three times daily but Mom said she was not comfortable changing the Lasix with also increasing the Milrinone and adding the Clonidine. So Dr. Saltiel backed off and said we would reassess in a day or two.

On Thursday evening, Dr. Stapleton came in to tell us Cael’s echocardiogram showed his function looks better but that his right ventricle muscle looks like it has thickened with indicates it is being overworked. He also told us that Cael’s blood pressures are trending higher again so he is adding Captopril to help them. With that said, he still had no explanation for why Cael is requiring extra oxygen and flow. At this point he was only requiring about 35% oxygen… he is now up to 40% (down from 42% from this morning).

Since he is requiring more oxygen than he was earlier in the week, Dr. Stapleton ordered another echocardiogram. Of course right before the echo, Cael woke up and I was sure he was going to object; however, the echo tech was Manu and him and Cael are buds! Caelin was so patient and enjoyed Manu’s company and allowed for him to get some great pictures of his heart- which the doctors really needed. So after the echo images were sent to Dr. Stapleton and he analyzed them, he came in to speak with us. Cael’s function still looks good; he believes it is back to Cael’s “normal” (mind you he is still on the Milrinone). He said his Tricuspid valve regurgitation is unchanged and is still mild. He also said his shunt is wide open and does not seem to have narrowed or changed over time. Dr. Stapleton has absolutely no real explanation as to why Cael is requiring twice the amount of oxygen that he should. He has collaborated and brainstormed with Dr. Wilmot and the only thing they can try to do now is lower his blood pressures. Since Cael’s pressures have been trending up, they increased his Milrinone, added Captopril Thursday, and added Clonidine today. Dr. Wilmot mentioned trying Enalipril again but we are not comfortable with that addition since Caelin’s kidneys were adversely affected by it. He still is not peeing near as often or as much as he used to.

A bacterial or viral infection would explain his increased need for oxygen support so they cultured his Atrial line and ran a respiratory culture- both are preliminary negative. But since he was cultured for a viral infection, he is on "Special Contact Precaution" which means everyone other than Mommy and Daddy who enters the room must wear a yellow gown, gloves, and a face mask. :/ He received a blood transfusion of 60mLs on Wednesday and his body did not respond to it like normal. Typically he would get much pinker and his saturations would increase for a while. This time around, it had only a couple hour effect. His saturations went up about 2% and by morning he was paler than he had been in a long while.

Dr. Stapleton is going to speak with Dr. Chai tomorrow during their big morning conference about Caelin’s recent developments. Cael’s current weight is 4.493 kilograms. He is about a half of a kilogram away from where Dr. Chai said he would do Caelin’s Glenn. But if he does not improve soon, it is possible this surgery might happen sooner if Dr. Chai is comfortable with it, his cultures stay negative, and everyone else believes it is the right step. We will keep everyone posted.

Thursday we met with the RN Clinical Manager of the CVICU, the director of Risk Management, the head pharmacist, and the pharmacist involved with Caelin’s overdose on Clonidine. In the meeting they presented us with the facts of the situation and the steps they have taken to fix the errors to make the process have fewer flaws. This includes changing the labels on the medication to make the checking process more accurate and consistent, staff development for the nurses to show them how to access and use Lexicomp before calling pharmacy to check the dose of a medication, dosing alerts upon ordering on both the physician and pharmacist’s ends, and other changes. We wanted to make sure they were actively making changes to improve the process to ensure it does not happen to other children in the future and they have done that. So at this point, we want for this event to just remain in the past. We are thankful the overdose was not with a more potent medication and that Sean was there to notice the physical changes in Caelin before he got to the point of no return. Nonetheless, with every new medication he is prescribed, we ask the nurses to double check the dose on Lexicomp and we check it ourselves.

This afternoon he also had a follow up femoral ultrasound to check out the veins and arteries in his groin area that were previously diagnosed as several narrowed/partially occluded. We are still waiting for the radiologist to read the report and dictate his analysis.

Thank you for your continued prayers for our son, Caelin, the powerful warrior. Even when it seems he is doing better, he still needs as many prayers as possible because it is obvious things can change real quick. It really isn’t fair that he can get worse so quickly but it takes so long for him to recover; however, we are thankful for each recovery he has made and we pray he continues to recover through this obstacle and the infinite ones the future holds.