Pain, Pain Go Away...

Susanne, Scott, and Moppy tried to get as much sleep as possible last night. They wanted to try to rest up for a long day at the hospital. All of them had been so anxious and worried about the surgery yesterday that they had not rested easily the few nights before.

Paxton looked agitated today when they arrived. He was kicking and thrashing around out of frustration. He had no understanding of what was going on, he just knew he didn't like it at all.

Paxton had done so well overnight, that he was approved to be transferred to the step-down unit on the same floor. The doctor that evaluated him this morning thought that he was right on track. Susanne and Scott thought that although that may be true, he surely looked swollen. Some of the swelling was expected after any surgery, but it just seemed to be excessive. The previously loose identity band on his leg was now cutting off his circulation. His face kept getting puffier and puffier by the hour like a tick. His soft spot on the top of his head was as firm as a rock. Susanne knew these symptoms all too well. This was exactly what put Paxton in the emergency room in November. He had to be experiencing fluid overload.

Susanne inquired about his medications. She was primarily interested in when he would be started back on his diuretic. It was in this moment that she realized that they had made a mistake and had him down to receive his Lasix only twice daily. He was supposed to have it every eight hours instead of every 12 hours. In his world, this was a big deal. Susanne reminded the nurse of his accurate medication regimen. Also, she requested to speak with a cardiologist to discuss his current status. After their assessment, they decided to switch him to intravenous Lasix instead of giving it through his G-tube. The good news was that Paxton's lungs sounded clear and his heart sounded good. Sometimes when the heart was overloaded with fluid, it could exacerbate the murmur. The nurse gave Paxton a dose of the diuretic immediately. They all were relieved that they didn't wait to start the medication until that evening like they had previously planned. Susanne and Scott were hoping that once the medications had time to take effect, it would alleviate the pressure that had built up in his head. This would hopefully help decrease the pain associated with that.

Scott was able to hold the little guy in attempt to help to settle him down. He still couldn't seem to get comfortable. Susanne held him a little while later and had the same issue. Luckily, she found a position that he thought was comfortable. He ended up sleeping in her arms for a couple of hours. She couldn't take her eyes off of him. This was the best feeling in the world.

Scott got Paxton transferred back into his bed when they were ready to go get some lunch. He changed his diaper and snuggled him in. This was the most comfortable Paxton had looked all day. He slept so soundly for hours. His daddy did such a great job.

The second they returned from getting their lunch. One of the doctors from the craniofacial team stopped by to give them an update. If they had decided to actually eat their lunch in the cafeteria, they would have missed her for sure. It was funny how it never failed that the moment Susanne started pumping or they left the room for anything, someone of importance would show up. Overall, the doctors thought that Paxton looked stable. She educated them on the timeline for his full recovery. Susanne was given specific details about what therapy skills were acceptable and not acceptable to work on with Paxton over the next six weeks. She would not be able to work with the pacifiers at all, but she could still offer him pureed foods on a rubber tipped spoon as long as he didn't chew on the spoon itself. The facial massage would still be acceptable, but she would have to minimize the exercises she did inside his mouth. The doctor was hopeful that the suture attached to his tongue would come out tomorrow. Once his generalized swelling was controlled, they would start talking about sending him home. This was music to their ears.

When Paxton woke up, he seemed uncomfortable again. His nurse had done a great job of keeping up with his pain medications, but he still seemed restless. Susanne and Scott requested some oral swabs to see if wetting his mouth a little bit would help. Paxton was unsure about it at first, but then accepted it willingly. He felt much better after all of the bloody build up was removed. It was easy to tell that it soothed the back of his mouth. The short drips of water he was able to get out by mouthing the oral swab helped to lubricate his throat. They were so proud of him for pushing through the pain.

Paxton had much better mobility of his mouth afterwards. He was actually able to put his lips together and occasionally opened his mouth up to yawn. They were able to get a good look at the surgery site. There was definitely not an opening to his nasal passages anymore. It looked well sutured. He still had the stay suture intact for the doctor or nurse to be able to pull his tongue forward if it retracted too far backwards. They had not had to use it yet, despite his tongue being far back in his mouth. As a result of this, he sounded like Darth Vadar. He had difficulty breathing at times, but he would eventually self-correct the problem every time.

While Susanne was pumping, Paxton's primary cardiologist stopped by to discuss the results of the sedated echo from yesterday. She could have called that one. They had to repeat the echocardiogram from January because they had difficulty assessing the right ventricle and pulmonary artery with him awake. Now, they had a much better idea of what was going on. Scott and Moppy were ecstatic to hear that the right ventricle had mildly improved in size and function. There was actually also some blood that was being pumped up through the pulmonary artery to the lungs. This was a remarkable finding. Hopefully with time, this would continue to improve. There was some regurgitation of his tricuspid valve, but that was to be expected. This was more positive than they had expected. This was a nice change for them.

The rest of the evening was spent taking turns holding Paxton, sitting with him while he was entertained by Baby Einstein DVDs, and watching over him as he slept. Once they got him settled in for the night, they left to head back to the house. Tomorrow seemed promising for continued improvement. They were so pleased that he was starting to become more alert. They wanted their old Paxton back ASAP.