Let me start with the most important news: WE ARE HOME!!! June was discharged yesterday afternoon - a month after she was first admitted. This was the longest stay we have had since back in the NICU days and triple the travel time. Whew!
Waiting to go into surgery
The surgeon came out to meet with me at 6:15 pm. Everything had gone well. June's stomach was on the smaller side but not the smallest stomach she had seen. She was able to pull the stomach up around her esophagus to tighten the opening so that it would be harder for June to vomit. Imagine taking a towel and using your forearms to wrap it up around your shoulders. She also moved the interior placement of June's gastrostomy (G) tube. The button on the surface of June's stomach stayed in the same location, but the balloon inside June's stomach that holds the tube in place was pushing on her pylorus (connection between her stomach and intestine). June had an atresia (blockage) at her pylorus that was repaired in the NICU. The surgeon decided that the balloon pushing on the repair was putting unnecessary pressure on it, and the balloon might be blocking the stomach's ability to drain properly. We also discussed what the future would hold for June. It will be important for June to learn to take small bites (no hot dogs - ever) and wash down the food with sips of liquid. June will need lots of time to eat meals in slow, small bites.
I got back to see a snoozing June at 7:00 pm. We got her back up to the room and settled in her bed. Since they were able to remove the breathing tube, she did not need to go to the Pediatric Intensive Care Unit and could go back to the room we had been staying in. They did, however, give her a nasal cannula because they wanted to make sure she took deep enough breaths and didn't stop breathing because of the pain from cutting into her abdomen. The first night was very rough for June. She was in a lot of pain - anytime she moved or her bed was bumped, she screamed and shook. There were some hours that she screamed out in pain every couple minutes. She was on a continuous morphine drip and had a pain button that I could push for her every eight minutes. Some hours she was able to tolerate the pain with just the continuous drip, but there were several hours where I had to stay up to push the button every eight minutes. June was also very congested, and she started vomiting thick secretions that she would gag and choke on because she couldn't swallow them with the swelling in her stomach or throw them up because she was in too much pain to wretch.
In the morning, our day nurse helped tremendously with getting June more comfortable. She got her pain medication switched to a different narcotic that made a difference in less than an hour. She also contacted the doctors regarding June's respiratory problems. They prescribed breathing treatments every six hours to thin the secretions so June could breath and have an easier time of geting them out of her body. Once June's pain was under control, we got her out of bed and into my lap so we could cuddle for seven hours. The next night was rough for June too. She spent most of the night gagging and vomiting. She had a desaturation of her oxygen levels after one session, so they increased her oxygen and took a chest X-ray.
Each day, we started seeing more and more of our little girl's lively personality coming back. She still struggled with the thick secretions that were lodged in her throat. She ended up with the nasal cannula being put on at night because that is when she struggled the most with breathing. After 48 hours (Sunday), they tried giving her Pedialyte in her G tube. Two bags were connected to her G tube with a splitter - one held the Pedialyte and the other was where excess Pedialyte, gas, and air could escape. All of the Pedialyte ended up in the excess bag, so they stopped feeds. The next day (Monday), they tried again to give her Pedialyte. The same thing happened again; however, after they gave her erythromycin (the medication we give June four times a day so her stomach nerves are stimulated and work properly), her stomach started processing the Pedialyte. On Tuesday, they switch her to Pedisure and started working the rate up slowly. June was also cleared to eat soft foods, such as yogurt, applesauce, mashed potatoes, and smoothies. June didn't eat much but would have a few bites three times a day. We hit 35 milliliters an hour by Friday, and that is where the problems arose. June started having breathing issues and was vomiting again. On Sunday, she was vomiting Pedisure, which she shouldn't be doing because the Nissen was suppose to prevent vomiting. We had been set to be discharged on Monday (March 20), but with the new developments, June's discharge date was pushed back. June's surgeon switched her feeds to her J tube. Since June was expressing interest in eating, her doctor didn't want to suppress that interest if she continued vomiting. The goal is to get her enough calories to continue to grow while taking pressure off the stomach. We also started draining her stomach 24-7.
On Wednesday, we met with June's surgeon. She felt that June was getting close to being ready for discharge. They were planning to keep her one more day (which would be two weeks out from surgery) but were willing to let her go that day if we were comfortable with the plan. We were more than excited and willing to bring our baby home that day. To give you an idea of where June should be, our surgeon said that typically by two weeks out from an abdominal surgery, kids are cleared to eat regular food. June is still on a very limited soft food diet because her stomach cannot handle the stretching at this point. She will also never end up getting continuous feeds in her stomach because the surgeon doesn't think with her stomach size that she will be able to handle it. June receives feeds 20 hours a day to get the calories she needs and can eat foods (yogurt, applesauce, baby food) for breakfast, lunch, and dinner. Her stomach is also drained 24-7. To make matters a little easier (since the last time we were on continuous feeds June was just taking her first steps and now she is running wild with her brother), June now carries around a backpack with her food and drained stomach contents. She actually does really well with the bag and doesn't notice that is on most of the time. We have a long road and a lot of work ahead of us, but the moments that have followed since we brought June home on Wednesday, March 22 is more than worth it.
June loves her new flamingo hat - it is perfect to hide from the nurses:
Home At Last!
She's ready to roll: