One Week Post Op

Here is a picture of Alex one week after surgery. 

Day 5 Post Op

It's finally Tuesday!! I have been waiting for this day before we even arrived in St. Louis ten days ago. We were discharged from the hospital this morning around 10:00am, perfect timing to enable us to return the rental car and have lunch at the airport before we board our 2:00pm flight back to Denver. 


Alex has been feeling great. He is already back to putting everything in his mouth as you can see in these photos. Luckily, the fries he kept grabbing off of my dad's plate did not have salt on them - ouch! ... And he will have to wait MANY more years before he is allowed to have his first glass of wine :)


Alex has made huge improvements in his ability to eat solid foods. Drinking out of a bottle is still a challenge, but I know things will start to improve once the swelling in his tongue starts to go down.

Day 4 Post Op

Alex woke up this morning in a great mood! He was grabbing at his feet and babbling to himself. He is back to his normal self and looks great. He is on infant ibuprofen every six hours and only gets fussy 15-20 minutes before his next dose of medicine. DeAnn fed him a half jar of carrots and he ate without much protesting. He is now eating 3-5 ounces of formula every 3-4 hours. We were moved from the PICU to the floor and will be discharged from the hospital tomorrow morning. I read that many babies start to get pretty bad breath from the smell of the dried blood on the tongue, but so far we haven't experienced this. We have been told that Alex's tongue has healed very well -- it looks much better than I expected it to!

Day 3 Post Op

Alex was placed on a nasal canula last night to provide continuous oxygen while he slept - this helped reduce the number of desaturations he had throughout the night. He was started on bolus feedings, but he had a high residual from his midnight feeding (meaning that he wasn't digesting the formula) so he was placed back on continual feeds (small amounts of formula that are continually pushed through the feeding tube). His digestion started to improve in the early morning and around 8:00am DeAnn stopped by and agreed to let us try bottle feeding. 


For the first feedings you need to hold your little one very firm so that they can't wiggle away. With all of the stitches and swelling in the tongue, the bottle feels weird to the touch and many babies don't like the sensation of the bottle in their mouth. Alex didn't seem to be in pain, he has been chewing on his blanket and hand since yesterday. I won't lie. For the first few feedings it feels like baby torture. Like water-boarding your infant.  Alex screamed and tried to thrash around... but eventually they calm down and are so hungry that they give in and drink. 


DeAnn was great about explaining how to hold him and providing techniques for getting him to swallow. She provides a special kind of bottle that you squeeze to provide small amounts of formula to the back of the throat, which is great for those kiddos that don't want to (or can't figure out how to) suck using their swollen tongue.  Alex resisted initially, but he drank two ounces of formula. We will be feeding him 2-3 ounces every two hours throughout the day. 

Day 2 Post Op

This is the day that most kids are moved from the PICU, the pain medicine is weaned to Tylenol only, and they try to start bottle feeds. 

Unfortunately, due to Alex's breathing, they are taking things slow and we are staying in the PICU another night. They will not be trying bottle feeds until tomorrow. The amount of formula Alex is getting by tube feeds continues to increase (he started at 5 ml/hour, to 10 ml/hour and is now at 20 ml/hour) and he was more alert today. He played with some toys and cuddled with me in the recliner most of the day. They were able to take out the nasal trumpet which made Alex feel much better!

Day 1 Post Op

Nasal Trumpet

Expect bleeding and swelling during the first night and day after surgery. 


During the first night after surgery, they give Tylenol with codeine orally by feeding tube every four hours and morphine by IV only as needed if the baby seems to be in a lot of pain. 


Alex has opened his eyes several times and it's hard to tell if he is in pain or if he is just upset because he has tubes strapped to his face and restraints on his arms and legs.

Nasal Trumpet with Oxygen

Alex had a few episodes this morning where he stopped breathing for a few moments, turning blue. The nurses and respiratory staff were able to get secretions out of his nose and throat, and the first episode he had was likely due to the central apnea identified during his sleep study. 


Alex had a nasal trumpet inserted in recovery. This is a tube that goes up the nose and down into the throat and helps keep the swollen tongue from blocking the airway. Originally, they were going to take this out during the night, but because it makes it easier to suction him, they left it in today.

The tongue will be pointy after surgery. Dr. Marsh makes the tongue pointy on purpose because as the tongue heals it rounds out. He used to make "normal" rounded tongues during surgery and found that once the tongue healed it just didn't look right. I'll post a picture of the drawing Dr. Marsh did for us when I have a chance to scan it. 





Later in the afternoon, around 3:00, they started giving him formula by feeding tube (the yellow tube in his nose). Alex was awake and calm. He flirted a little with the nurse and sat up in bed wanting to play. This lasted about 10 minutes before he wore himself out and went back to sleep!

Recovery

"Buck" was so happy to see Alex in recovery!

Arm restraints, so little ones don't pull out their IV/feeding tube

Alex did phenomenal during and after surgery! The anesthesiologist was surprised by how well he did and said that his bleeding and swelling was minimal compared to many of the other children that have this procedure.  It was exactly 4.5 hours from the time surgery started to when we were allowed into recovery to see Alex (it would have only taken two hours for the tongue reduction). We met with DeAnn and the anesthesiologist team in the recovery area. I was surprised by how alert Alex was -- he was angry! They did have him on morphine, but they don't completely drug the patients because this can slow their breathing (which of course is a big concern for Alex and others with respiratory issues). 


After about 15 minutes, we were transferred to the PICU.  The rooms are large and have an attached bath and a fold out couch and recliner for parents that want to stay in the room. I'll be staying with Alex until he is discharged. My dad will continue to stay at the Haven House until we return home next week. 



We found out that there is also a Ronald McDonald House on the Mercy Medical Center campus. It was built a little over a year ago, so many of the medical providers here don't think to recommend this as another option for families traveling to St. Louis.  It's much cheaper to stay at this facility, too. Just something to keep in mind for those parents thinking about coming to St. Louis in the future!