Procedure #4? That's Nothing for our Warrior!

Check out the footballs on his cheeks! The nasal tube needed to be taped, so instead of putting plain tape on, one of the nurses cut it into the shape of a football and added the lines! So cute.

*Updated- Results of Today at the bottom of this Post! :)

Over the weekend, Caelin continued to progress and do well. Saturday morning we got a room change. We were in room 510 which was right in the middle of the hall, in front of the technician station, ideal for children with HLHS (he is considered a blue diamond patient). We had to move to 515, which is a smaller room and has a view of downtown St. Pete instead of the Gulf and sunrise. We had to move because there was a little baby expected to arrive who would need ECMO (machine that provides cardiac and resperiatory support) and his room is only one of two set up for this support and there was a baby in the other room already on ECMO. But we are happy with the room change- we feel it has a positive aura. Mommy is superstitious with numbers and she believe "15" is a great number since Caelin was born on March 15th. :)

Cael has really been loving life without that chest tube! Now if only he were able to get the breathing tube out over the weekend, he would have been one ecstatic baby! Yes, the doctors had been working toward weaning him off the ventilator toward extubation but Sunday morning, they decided to hold off.

The doctors had hoped Caelin would be ready for extubation by 9:00AM Sunday. Although he exhibited positive signs and they could have tried it, they did not want to risk him not being 100% ready with going to the catheterization lab this morning. In the cath lab Cael would need to be re-intubated for the procedure and the doctors finally agreed that the risks associated with coming off the ventilator and then going back on in less than 24 hours was not worth the benefit of him being off it for only a few hours. This was a concern Sean and I had shared and expressed before and now that the time had come, the doctors expressed the same concern and decided just to wait. We were thankful for this decision because we did not want Cael to experience any more trauma to his little body- going to the cath lab will be enough for his little body. So Cael will be extubated some time after he comes out of the cath lab, we are just not sure how long it will take. The doctors say it could be as soon as tomorrow morning or it may take a few days. We are hoping his body will be ready within the next couple days so he does not have to breathe through the tube any longer- we know it will make for a much happier Cael if he can thrive on his own.

With Cael going to the cath lab today, this marks his fourth major procedure in 18 days. Mommy and Daddy really cannot believe everything he has had to go through so far- it's way more than anything we have went through combined. The procedure he is receiving today is not nearly as invasive or complex as the first three he has undergone but it still has many associated risks, specifically because Cael's body is so small and his heart is so fragile. The plan is just to insert a catheter in through the main artery of his leg, inject dye, and take pictures of the shunt to check its stability and flow. If the doctors and surgeon decide the shunt is stable and the likely hood of it clotting off is low, they will NOT place a stent. If they have any doubt and believe the stent will help the shunt significantly, then they WILL continue the procedure with placing a stent. Of course, we will update with what the doctors decide.

Respiratory therapy has been helping Caelin's lungs. They are no longer collapsed and look much better. Yesterday the X-ray revealed the right lung was a bit hazier than Saturday but they said overall they still look much better. To keep his lungs as healthy as possible, they are continuing respiratory therapy every 6 hours.

Caelin's Bilirubin level decreased yesterday but they left him on the blanket to prevent it from rising again. He was on feeds (breast milk) until 12 AM this morning. This allowed his little tummy to get some food and for his bowels to start moving. ;) With being able to poop and continuing the blanket, Cael's bilirubin level continued to go down and is now considered to be in the "normal range." The doctors have not yet said this morning if they plan on continuing the blanket today or removing it. Side note: Cael easily charmed all of the nurses here, making an everlasting impression on the first day. They all comment on how cute he is and that he is overall an easy baby to take care of (he typically only gets mad when he has secretions that need to be suctioned or when he needs a diaper change). With getting back on feeds, his tummy created some gas pains which of course agitated him- but the nurses continue to call him adorable. I must say, he is adorable, but he is also the only male I know who can charm so many women with farting.

Results of the Cath lab Procedure:

At 8:30 AM Dr. Stapleton came in to talk to Mommy before the procedure and he answered all of her questions and addressed her concerns. At 9:00 AM the cath lab team (anesthesiologist, respiratory therapist, assistants, etc.) came in to get Cael ready for the procedure. At 9:14 AM they took him back to the lab and Mommy gave him a "See you soon" kiss. At 9:59 AM one of the nurses called Mommy's phone to tell her everything went great in the cath lab and that Dr. Stapleton would be out shortly to speak with me. He arrived about 10 minutes later and explained the procedure was straightforward and had no complications. He also said that after he and Dr. Quintessenza (head heart surgeon) examined the pictures of the shunt they concluded it is good and stable on its own and it would NOT need the reinforcement of a stent. He also explained to me that the staff would continue working towards Cael's extubation and it would likely happen in 24 hours. After he left, Cael's nurse came into the room and said, "They extubated him!" This shocking, unexpected news made Mommy's eyeballs pop out of her head while simultaneously causing her heart to drop into her stomach. Dr. Stapleton had told Mommy before the procedure that they would not extubate in the lab AND he had just said it could happen a couple hours after the procedure or the tomorrow morning. Apparently the anesthesiologist and the rest of the team thought Cael was ready so they went ahead and did it. Mommy trusted their judgement but was still taken by surprised, having been told one thing while another was done.

Thankfully, Cael has proven the cath lab team correct- he was ready! He still has a nose tube to give him some support but that is common and expected after being intubated for 12 days. His stats have been good, his breathing has been good, and he has been awake and alert. His cough is raspy and he is working on getting his cry back (it currently sounds like a faint, distant cry of a cat). Having the tube out also allowed him to get his binky back! It took Mommy's persistence of about two hours before he trusted what she was trying to put in his mouth after having unwanted tubes and suction tools shoved in there.

He got a nice bath this evening and he finally got to be in Daddy and Mommy's arms! It was such a wonderful feeling for us to be able to wrap our arms around him and hold him close to our chest after almost 13 days. He was fussy right before we got to hold him, but he stopped instantly when he was placed in Daddy's arms. Within minutes he fell asleep and he slept when Daddy put him into Mommy's arms. It was not until Mommy said, "Alright, I am going to get some food buddy so you are going to go back in your bed," that he woke up screaming (quietly but with great force). Now this may have been purely coincidental but we think it's quite obvious that Cael likes to be in our arms just as much as we like for him to be there... and it had been way too long.

We are thankful for another great day and step forward. Again, so proud to be the parents of a resilient little warrior.