Therapy...of the Canine Variety

Paxton slept much better last night. His nurse was phenomenal and was really in tune with his needs. She made sure to give Paxton pain medication on a set schedule per Susanne's request instead of on an as needed basis. This seemed to make all the difference in the world. He was able to settle down a lot more easily. Susanne liked the concept that his pain would be consistently controlled instead of waiting until he was showing clinical signs that he was in pain. He was febrile starting the previous night. His temperature had gone up to 101.8 at one point. Nothing was helping. The nurse decided to wash him with cool water and place a cold wash cloth on his forehead. This really calmed him down. Susanne held him a lot and stroked his hair. Once he finally fell asleep, he was down for a while.

This morning, Susanne was up bright and early to take care of Paxton. He had started having bowel movements again once he was transitioned back over to breast milk.

Susanne immediately noticed that Paxton appeared to be much more content than yesterday. He actually smiled at her when he woke up. She was impressed that Paxton had not had any gagging or vomiting episodes the last two mornings which was unheard of in her world. The hope that it would go away once the NG tube was removed had thus far been holding true. Paxton was able to fall back asleep with little effort today. The only problem was that every time he would doze off someone came into his room to mess with him. The first set of rounds started early in the morning. Susanne kept trying to find an appropriate time to pump. At one point she thought that everyone had a stopped by Paxton's bedside that needed to assess him. She was probably pumping a total of five minutes when the entire team from cardiology stopped by to discuss his case. She couldn't win.

In a matter of a few hours, Susanne had managed to talk with the cardiology team, surgery team, ENT team, nursing staff, nursing students, residents, fellows, attendings, case manager, and social worker. It was overwhelming how many people were needed to look after Paxton. Susanne knew that he was in the best hands.

Later, the staff presented a symbolic bead necklace to Paxton. It was from an organization called Beads of Courage, which is a unique program for children coping with serious illness. Paxton received a different bead for each night he had spent in the hospital, for each procedure he had done, for every major diagnostic test that was performed, and for every catheter he had placed. They also honored his past hospital stays by giving him a special bead that symbolized those portions of his journey. Susanne also received a bead. Hers was the courage bead that represented the courage that it had taken her to get through each day thus far. She was so touched by the gesture. She would definitely wear it with pride.

Susanne saw that the therapy dogs would be visiting Paxton's ward this afternoon. She got special permission to disconnect Paxton and walk him down to the room where they would be. The nursing student brought a red wagon for Paxton to be transported in. He thoroughly enjoyed the ride. He was smiling and laughing the entire way. He loved meeting the dogs. The oldest pup of the bunch came right over and rested his head on the side of the wagon. At the end of the visit, one of the dogs performed an entire choreographed routine with his trainer. It was very entertaining.

Before Paxton was reconnected back= to all of his machines, Susanne gave him a bath. She could only give him a sponge bath just like the old days. It was more difficult than she had remembered. It was interesting trying to avoid his surgical sites.

Moppy stopped by for a short visit. She was on top of making sure that Susanne didn't starve to death. This was the only hospital that Paxton had been in thus far that didn't provide a meal for one of the parents when their child was inpatient. They also locked down the nourishment center where Susanne usually refilled her water. They had recently had problems with parents stealing formula. Susanne was constantly shocked at the quality of people that roamed the earth.

Colleen and Chris were able to stop by before the visiting hours were over. Once they were going to get kicked out, they somehow convinced Susanne to leave the hospital to get away for a few hours and enjoy a nice dinner. They ended up going to a pizza place called RedRocks in D.C. They were well known for their firebrick oven pizzas. Chris had done the appropriate research prior to selecting this restaurant and found out that they actually had some options for Susanne. They actually served pizza without cheese and it was delicious. Go figure.

When Susanne returned back from dinner, she was told that Paxton's abdomen was really distended and he seemed uncomfortable. The nurse showed Susanne how to vent his stomach to relieve it of any excessive gas. He immediately felt better and within minutes had a smile on his face. Susanne also noted that Paxton had a catheter in a different place then before she had left for dinner. The nurse let her know that the previous catheter stopped working when they tried to give him his last dose of intravenous medication. They replaced it while she was away. Susanne was a little sad. She would have preferred to have been there to help distract Paxton. They had a system that seemed to work. She was usually able to prevent him from crying. She was bummed at the thought of him wailing through the catheter placement. The only thing that kept her from crying was the knowledge that he wouldn't remember any of it a day from now.