Night and Day

Cuddling with Daddy the first time without facial hair!

Daddy & Baby.

Going on his first walk around the unit with Daddy & tech Melody!

After bath time!

Walking around the unit for the first time with Mommy!

In his robe and slippers!

Little man.

Darling eyes.

Happy Family!

Since Tuesday, we have been taking things steady and easy. Caelin had not been feeling the greatest so they did not want to try to make any big moves or push him too much.

Wednesday and Thursday his temperature was warmer and he had more cultures done. His peripheral culture from Wednesday came back positive for bacterial growth but Thursday the repeat culture was negative; so they interpreted it to be a contaminated sample creating a false positive. Since none of his cultures had a real positive, we are not sure what is causing him to continue to spike low-grade fevers.

Friday the surgeon, Dr. Chai, decided against the Broviac. Since Cael’s RA line is still working for meds and drawing blood, Dr. Chai does not want to put Cael through another procedure and risk losing the vein that the Broviac would go through. After speaking with Dr. Chai about the Broviac, we asked him about the plan for Caelin’s second step of the Norwood Procedure- the Glenn. Although this is the second step of the process for the restructuring of Caelin’s heart, it will be his fourth open-heart surgery. Dr. Chai said since Caelin is almost 4 months old, he is comfortable doing the surgery when Caelin weighs consistently 5 kilograms, which converts to just over 11 pounds. Friday he  weighed around 4.1 kilograms so we assumed it would be about three to five weeks before he weighs enough consistently for the Glenn. He did get 80 mLs of blood today because his hematocrit and oxygen saturation levels were low. We weighed him two hours after his blood transfusion was complete and he weighed 4.4 kilograms!!! We will weigh him every day to trend his weight and if it stays this high and continues to gain weight, the surgery may be sooner than we thought! Although his RA line stayed in, he got his pacing wires removed. As protocol, they place pacing wires in to every patient’s heart during a major surgery in case he/she develops an arrhythmia. Cael is now far enough out of surgery to have them removed. An echocardiogram was performed to make sure there was no blood leaking outside of the heart after they were removed; no one came to tell us formally, but we are assuming everything looked normal.

With Caelin having limited central access, he had to get a peripheral IV last Sunday for his Lipids and medications. On Wednesday when he got his blood cultures done, he got a back up peripheral placed because the one in his right arm was still working, but looked like it was going to go bad soon. His right peripheral IV did go bad Thursday evening and his left one ended up going bad this morning (Saturday). But he did not have to get a new one because many of his medications were changed to oral from IV (Lasix, Prevacid, Aspirin & Lovenox shot) or discontinued (Heparin, Zosyn). Since his feeds were increased, he no longer needs his Lipids as long as he continues to tolerate the formula volume. He still is on 0.5 of Milrinone to help his heart squeeze but they will continue to wean this medication over the next week or two. Also, he is on the same doses of Methadone (.4) and Valium (.5) that he has been, but this morning the frequency was changed; they were moved from every 8 hours to every 12 hours. So he now gets a narcotic every 6 hours instead of every 8.

Speaking of increased feeds, he is now at 11mL/hr. He got bumped yesterday (Friday) from 9 to 10 mL/hr and his concentration was increased from 20 calories to 22 calories. So today, he got to 11 mL and 22 calories. He is still retching but overall, he has tolerated the increase pretty well. We are really hoping to continue to increase his feeds by 1 mL each day but in order for that to happen, Cael’s body has to be okay with it.

Last night Caelin got to go for his first walk outside of the unit. He was fussing before the walk so we were nervous that he would not like it but he seemed to love it! He was content the whole time, looking around at the lights on the ceiling and the different people in the hallway. His oxygen saturation levels increased and his heart rate decreased- which means his numbers got better and we interpret these changes as positive signs. Since he did so well with his first walk, we took him for another one this afternoon after his bath. Again, he loved it! There were a lot of nurses and staff in the hallway today and they all stopped us and wanted to talk to Caelin. He sure is Mr. Popularity! J

Other than working on increasing feeds, gaining weight, and getting off Milrinone, Valium, and Methadone, we are trying to get him back on a normal schedule. Right now, he is sleeping through most of the day and awake at night. Although it doesn’t bother Cael much, it is difficult for Mommy and Daddy. During the day there are so many people coming and going that Mommy and Daddy really can’t sleep much and with having to spend some of our time at home with the dogs, it is not always easy to trade off sleeping and being awake with Cael at night. Hopefully it won’t take too long for us to get him to a more manageable schedule.

Comparing pictures form this week and a couple weeks ago, Cael’s progress is once again remarkable. Each day seems like an eternity while being here; however overall, time is going by quickly. Looking back on the obstacles Caelin has overcome and thinking about what it was like during that time is almost surreal. We are so blessed to have him as our son and to have so many people praying for and loving Cael. Thank you!