Off Milrinone & Enalipril! & Kidney Function Concern

Standing on the bed! Working my legs!

Hugs for Pooh!

Cute Cael face!

Big Yawn!

Happy 4th of July!

Smiley Baby!

Playing with my rings!

Laughing boy!

Holding up his head!

Wrapped up in one of my new blankies from the Schenks! Thank you!!!

Overall, this week has been a good one! He is super happy and getting back to a normal sleep schedule. Although, he is not sleeping much during the day now & saving it all for at night... not complaining because we would much prefer for it to be this way. But we have a feeling that he is going to be one of those toddlers who is too good for naps…

He did give us a big scare with his kidneys. Yesterday, his BUN, Creatinine, and Potassium levels skyrocketed. His BUN was around 40 (desirable around 20), Creatinine around 4.0 (desireable: 0.2-0.8), and Potassium 6.4 (desirable: 4-5.5). His urine output was also diminished. Normally he puts out 80-180 grams with his Lasix and he put out only 20-30 with yesterday’s doses. Immediately they discontinued his Enalipril (blood pressure medication) because it can decrease kidney function. His Vancomysin (antibiotic) was also stopped yesterday and this medication can decrease kidney function, as well. He received Kayexalate to help him get rid of the extra Potassium in his body and also a bolus of Calcium to help balance the electrolytes. With taking these actions, they did not add any additional blood pressure medications. They simply want to wait and see what his pressures do without the Enalipril. In addition to all these changes, they also reduced his Milrinone from 0.5 to 0.25.

This morning (Friday) the nurse drew his labs again. His Potassium was 5.3, Creatinine was 0.2, and BUN was 22. These numbers are much better and the doctors feel confident that Cael’s kidneys should not suffer significant long-term damage. Thank you, God! And thank you to all who joined in prayer for our little powerful warrior!

Overnight without the Enalipril and with the reduced dose of Milrinone, his pressures stayed in the same range they had been in. Because of this, they decided to continue to hold off adding any other blood pressure-reducing medications. The cardiologist, Dr. Nardell, also decided to come off the Milrinone. Caelin will receive an echocardiogram tomorrow morning to check the function of his heart as the leftover Milrinone should be out of his system and his heart will be pumping without any assistance.

Caelin’s feeds are now up to 20mL/hr! J This is HUGE for him!!! He is actually tolerating them pretty well, but not without a few retching episodes, a couple emesis, and frequent G-tube bilious output. The doctors (cardiologist, intensivist, and GI nurse practitioner) are not concerned with these minor responses because it is better for him to get the high volume and concentration, which his body has been lacking for so long. He needs to put on good weight. The weight he gained last weekend was all water weight and he dropped it by Wednesday. He is now averaging around 4.16 grams. So really, he still has a full kilogram (approx. 2 pounds) to gain before he can have the Glenn. The doctors said they would be ecstatic and surprised if he gained 30 grams a day. At this rate, we are looking at least 30 more days (around August 6^th) before Caelin will receive his Glenn.

All week he has been working with Physical Therapy and Mommy and Daddy to increase the strength in his legs, arms, chest, shoulders, and neck. He has made significant improvement with kicking his legs and starting to keep them straight instead of frogged all the time. Also, he is doing an amazing job of holding up his head on his own while being held, sat up, and in his Bumbo. He still is not able to lift it up off the bed while laying down but hopefully once we get his chest a little stronger, he will be more successful with that milestone. We have done a little bit of tummy time with him to help him progress and to relieve pressure in his belly but not too much because we do not want to push him. He has also been doing some taste stem with the speech pathologist, Julie. He took 2mLs straight on Wednesday! J We will most likely start spoon-feeding immediately after Glenn. J Woohoo- Mom is super excited about this!

Despite the downs amidst all the ups, we remain confident and hopeful in our son. He is an amazing little boy and there are big plans for him in his future! We know he is meant to change the world! Thank you for your prayers and support from all over!