Hakuna Matata

Here is Caelin without his chest tube! Hooray! :)

We are much overdo for a positive update, so thank goodness it is finally time! Yesterday our nurse used the phrase "Hakuna Matata" and commented on how that song can put anyone in a good mood- you just can't help it. So all day, Mommy found herself singing "Hakuna Matata" and anxious to watch The Lion King with Caelin. Now if only we really could have no worries for the rest of our days... but we will take what we can get!

Caelin had a pretty good night last night- they began weaning the ventilator. He did not get as much rest as we would have liked for him to get, but he ended up making up for it today.

This morning during rounds Mommy and Daddy were very involved in the discussion with the doctors because we saw Caelin's strength and desire to improve but the past few days had passed with little changes for him. Although we understand why, we were concerned with the weekend coming and knowing they do not like to make many changes on Saturday and Sunday because they do not have a "full staff." So this would essentially mean two more days of little progress for Caelin. So we respectfully shared our concerns and observations and the doctors listened to us, in fact, they agreed with what we had to say! It was a great feeling advocating for our little warrior and realizing how knowledgeable we have become about our son and his condition.

So here were the big changes for today:

1) He got his chest tube out! :) The chest tube was in place to allow excess blood and other fluids to drain from around his heart. For the past two days, it had not excreted any fluid so the doctors decided it would be a good time as any for the tube to be removed. Jen, the surgeon's PA and who we believe to be Caelin's personal angel in disguise, came into his room and carefully removed the tube. Cael did not even budge! The tube came out easily and revealed it had clotted off which explains why no fluid had come out through it in the past two days. Jen said because of the clot it essentially was not working anyway, that his body had really already adjusted to the tube not doing its job and it was like it had not been there.

2) Caelin is back on feeds! Beginning this afternoon Caelin is allowed to have a continuous drip of 2 milliliters per hour of breast milk. It is not much, but it should help get his bowels moving again and should help to bring his bilirubin level back down. We are hoping as his stomach adjusts to this amount, they will start to slowly increase it.

3) His bilirubin level has been trending upward again. Monday it was around 8, Wednesday it was around 12, and this morning it was up to 15. Because of this, they decided to put him back on the bili-blanket as a preventative measure, hoping he will not have to go back under the lights. The blanket combined with him being back on feeds and hopefully starting to poop makes the doctors think his bilirubin level should lower.

4) His chest X-ray was much better this morning. He coughed a lot during the evening and hacked up a good amount of mucus and this helped his lungs clear out and improve. The respiratory specialists are still doing chest therapy but less frequently. This afternoon he has not been coughing as much nor has he had near as many secretions.

5) The respiratory therapists are weaning oxygen and the respiratory rate on the ventilator working toward Caelin's extubation. They are going a little slower this time than they did last weekend because his stats are good, but not as excellent as they want them to be so they do not want to push him too much. Mommy and Daddy want that tube out of him so he is not so uncomfortable, but we fully support their decision because we want his body to be fully ready to breathe on his own. Right now, he often lets the machine do all the work while he is sleeping. He has been doing this less frequently and initiating more breaths on his own since the respiratory rate went down to 20 breaths per minute from 28 but we still do not want to take any chances.

Overall, today was a big day for Caelin and a great day! After the chest tube was removed, we noticed an immediate difference. He has been incredibly happy all afternoon! He was awake for almost two hours after the tube was out (that's with extra pain medication so he was fighting falling asleep because he wanted to celebrate) and he was happily awake. It has been a while since he was awake for that long and not agitated. This was such a reassuring feeling for Mommy and Daddy. After being awake for so long, Caelin decided to take a nap. He slept pretty much undisturbed, with the exception of a few diaper changes and suctions, for about five hours and this allowed Mommy and Daddy to get some much needed rest. Again, it has been a while since he has slept that well for that long.