The Glenn: Post-Op Day 1 & 2

Getting ready to head back to the OR.

Daddy giving "See you later" talk, hugs & kisses.

Mommy giving "See you later" talk, hugs & kisses.

Daddy with Caelin right out of surgery.

Mommy with Caelin right out of surgery.

Caelin immediately after his Glenn. Thursday 8.9.12

8.11.12

Cassie encouraging Caelin to kick the blocks.

Daddy talking with Cael as he hits and kicks his toys! 

Friday Morning Bright Eyes.

FIRST SMILE after his Glenn!

We are so blessed that Caelin was able to go to surgery on Thursday. The baby getting the Norwood Procedure that replaced Caelin as first case ending up having complications which prolonged his/her surgery and the baby came out on ECMO. If Caelin had not gone on Thursday, he would have definitely been pushed to next Tuesday. So thank you Dr. Chai and All Children’s staff for rearranging the schedules so he could go sooner!

Right out of surgery, Caelin was stellar! Mommy and Daddy spoke with Dr. Chai before being able to see Caelin and Dr. Chai told us everything was straightforward and free of complication. Cael tolerated being extubated in the OR immediately after surgery so when he came to the room he was vent free and on a nasal cannula at 2 liters of flow and 100% oxygen. We finally got to see him around 12:35 PM. For most of the afternoon Caelin was awake but calm and comfortable. He gets Morphine as needed and IV acetaminophen every six hours. He also got caudal anesthesia back in the OR which lasted for about 24 hours. The anesthesiologist gave him the injection below his umbilicus because the Morphine and Fentanyl was not enough. Like we said with his last procedure, he seriously needs horse tranquilizers to settle him down. HAHA … In all fairness, Daddy did warn the anesthesiologist before rolling Caelin back into the OR. ;) So all of his numbers and arterial blood gasses looked great immediately after surgery- the numbers reflected those of an infant who just endured open-heart surgery. Within 24 hours post-op, his numbers and gasses normalized, indicating his body is quickly recovering from surgery. Over night he did well. Although he was a little fussy, he slept for the most part.

Early Friday morning, pain started hitting Cael. He was fussy all morning and did not want Mom to leave his bedside from 9:00 AM until 12:30 PM when Daddy got to the hospital. He continued to get Morphine and IV Tylenol but they were not stopping the pain enough.  For those of you who don’t know, it is really common for babies to have a constant headache after their Glenn. The doctors attribute this to the change in blood flow with his heart’s new physiology. His body will adjust within a couple of days and his headaches will subside. Because of his pain, his blood pressures were high and he had to go to 4 of Nitroprusside and 0.7 of Precedex. Thank goodness for Cael’s nurse, Reaganne, who suggested we try ice packs on his head. BRILLIANT! After putting the first one on he calmed instantly. So with this now added to help his headaches, his pain seemed much more tolerable and he was more calm. And of course his binky and Wubbanub are his BEST FRIENDS! Thank God for pacifiers. His morning labs showed his Hematocrit was 30, so he got a blood transfusion of 75 mLs. Before his blood he was on 70% oxygen at 2 liters; after, he was down to 30% oxygen and 0.5 liters! Amazing! They planned on restarting his oral blood pressure medications to get him off the IV ones; however, his BUN was at 21 and his Creatinine was 0.32 so they decided to increase his IV Lasix to Q6 to help him pee out any extra fluid and get his kidneys working well. He was started on Pedialyte at 5mLs an hour and orders were written to increase by five every four hour up to fifteen. Once he was on Pedialyte for four hours at a rate of 15mLs/hr, they switched over to Elecare 20. Overnight he remained at 15mLs/hr of 20 calorie Elecare and tolerated it well. Friday he also got out his CVL (central line) because he does not need the extra access and his Foley catheter to prevent infection. So overall, he had a great first full day out of surgery.

Friday night he was pretty fussy from pain. Everything that helped in the afternoon also helped at night but they of course can only help so much. So what he really wanted was Mommy or Daddy to be next to him as he slept lightly. Over night he started having a little more difficulty breathing; he had retractions in his abdomen and nasal flared as he inhaled. To help him breathe easier, the nurse went back up to 2 liters of flow. We are guessing he required a little extra assistance because he had been upset for so long on and off and his lungs and body were just a little tired because by mid-morning he was back down to 0.5 liters.

Dr. Pettigrew gave orders to our nurse this afternoon to keep Caelin on 30% oxygen and 0.5 liters. Well as we all know, Caelin is the boss. So, he decided to rebel. But he FINALLY rebelled in a good way. His saturations were in the 90s consistently this afternoon and ideally they want him below 90. As a result, his oxygen got weaned and he is now on 21% at 0.5 liters! Our little man is remarkable! All of his GI meds were restarted today (Prevacid, Zantac, Colace, and Reglan) along with his Captopril for blood pressures. With adding the Clonidine yesterday and Captopril today, he is completely off both Nitroprusside and Precedex! He is still on Milrinone at 1 and IV Lasix every 6 hours. They plan to keep him on Milrinone for at least a few more days. Dr. Wilmot mentioned ordering an echocardiogram for Caelin early next week. Another great marker of progress is that by 9:00 PM he will be on full feeds (27mLs) at 20 calories! GO CAEL! They did not want to push him too hard too fast, so they will start to fortify his formula to increase his calories tomorrow.

Caelin has gone through a couple fussy spurts today (Saturday) but for the most part he has been awake, alert, content, and comfortable. He has even started to play with his blocks and rings hanging above him. He loves kicking them and batting at them with his arms- he is not going to let his chest tube, freshly-opened chest, lines, or headaches get in the way of play time! Mommy even got a couple of little smiles in the late afternoon/early evening. It is better than a breath of fresh air to see Caelin doing this well. We are long over-do for some good news. Also, we are really hoping he will get his chest tube out tomorrow so we can hold him! We hope he will come off oxygen tomorrow, too, so we can see his face again (it’s been almost 5 weeks)!!!!!

So needless to say, after constantly making the doctors walk on pins and needles, scratch their heads, and hold their breath… Caelin is finally on a steady path of recovery. The doctors and Mommy and Daddy are all extremely pleased with the progress he is making! Thank you all for loving our son as if he were your own and sending prayers in his name. We will never be able to thank you enough for your support!