Cannula free!! :)

No cannula!

So nice to see his face!

Love!

Well today was supposed to be a really big day with Cael’s RA line and pacing wires coming out, but they are still in. Instead, it was a big day with Cael getting his nasal cannula off! WOOO HOOO!

He had been having some issues with desaturating this past week and needed extra oxygen support. This morning he was on 29% and 2 liters of flow. After rounds with the doctors, the nurse came down to 1 liter of flow and left the oxygen at 29%. At 3:00 PM Mommy and Daddy changed his “button stickers” that keep his nasal cannula in place and left the cannula off for 15 minutes. The nurse, June, came in and Daddy explained Cael seemed to be okay with it off so she suggested we leave it off and cleared it with the nurse practitioner, Laurie. So he has been off oxygen support since 3:00 PM and has been doing well since. He did have one event where he woke up screaming, dropped his heart rate, and desatted into the 60s… only one thing causes this- gas/constipation. Sure enough he had a nice big poop and was back to sleep within just a few minutes of cuddles with Daddy.

Caelin was supposed to get his RA line out because one of the lines occluded and would no longer allow meds to run through it. They wanted to run a PICC line but he does not have adequate access. This leaves two options- a Broviac or peripherals. He currently receieves TPN, Milrinone, and Heparin through his RA line. His lipids and meds are going through a peripheral already. He will be on all of these medications for at least a few more weeks except the Heparin. To replace the Heparin, he will be going back to Lovenox and Aspirin. The TPN concentration he is on for all his nutrition is not compatible with a peripheral. Also with peripherals, each one only lasts a few days, therefore, needing to be replaced frequently. Which means Caelin needs to be poked each time he needs a new one. He also gets labs drawn from his RA line and they cannot draw back on peripherals. This means every time he needs labs, he needs to get stuck. This is multiple times a week & he does not tolerate it well & ends up being incredibly stressful for his little body. The Broviac is long-term, allows labs to be drawn and will support his TPN concentration. But with a Broviac it could mean potential long-term damage to a very important vein that is used for catheters in the catheterization lab. Cael will need a full catheterization before he has his Glenn done. So if the Broviac goes through this vein and causes damage, it is our understanding that it could be trouble for his Glenn. Because of this, the surgeon, Dr. Chai, is not a fan of the Broviac. They will decide by Friday which route they will go. Dr. Chai said he will stop by Friday to discuss each option with us and to also talk about the timeframe he has in mind for Caelin’s next open-heart surgery: the Glenn.

Today he had an ultrasound of his femoral arteries and veins to look for access for a PICC/Broviac and they discovered that his right artery is partially obstructed (clot). Dr. Decker reassured us that this clot should not get worse because he is on such strong anticoagulants. Also, his left femoral veins are clotted off (from his Central line of 4 weeks). The surgical PA, Jen, said with time, these veins should heal. We hope Dr. Deck and the PA are correct because our son really does not need any issues with these preventing blood flow to his lower extremities… he has enough obstacles as it is.

Cael’s blood pressures are still higher and unpredictable. His upper extremities have been higher than his lowers, but this afternoon his lowers were higher than his uppers. Our son is definitely a mystery. His Enalipril was increased to help with his blood pressures and prepare for his Milrinone wean. His Amlodipine may be increased tomorrow or Thursday.

Caelin is up to 9mL/hr on feeds. He is almost halfway to his goal! Because he is still so low on feeds, he is on 9mL/hr of TPN and 2mL/hr of Lipids. We will continue to increase his feeds VERY slowly to eliminate vomiting and retching as much as possible.

His heart rate has also been fluctuating. It was stead for a couple days last week and recently it has been higher. Today while he was cuddling with Mom, Caelin’s heart rate hit 205 and stayed in the high 190s for quite a while. As a result, they ordered an echocardiogram and EKG like last Sunday. They were both normal and did not indicate his heart being under extra stress. He received some saline volume and this seemed to help. His heart rate is now between the 140s and 150s while asleep and up to the 170s while awake.

Although there have still been a few concerns here and there regarding Caelin’s heart, body, and stability, he is still heading in the positive direction of recovery. Caelin is just a marvelous and inspiring little boy. We are the most proud parents on this Earth.

Caelin got his first four online donations within the last 48 hours! Thank you to Denis Pelland, Tim Anderson, Saree Allen, and Great Aunt Sheri! We have also received support from Mireille, Caelin's Great Papaw, Grandma, Grandpa, and some wonderful teachers at Gibbs High School and Bay Point Middle School. Caelin says thank you for being able to offer some financial support (as do Mommy & Daddy) ! :)

We now pray for Caelin’s heart rate and pressures to steady out. For his body to tolerate breathing on his own and the increase of feeds for proper nutrition and weight gain. For his heart to continue to improve and strengthen as he is weaned off the Milrinone. We do not expect all of this to happen at once, but these are the things that need to happen over time in order for his body to be healthy and ready for the next surgery. If he does accomplish these things and he is consistently stable, it may not be impossible for him to be out of the hospital for a little while before the next surgery- which we so desperately want. Thank you for your love, support, and prayers.