Home Sweet Home

We are Home Sweet Home! Henry was discharged on Tuesday afternoon. After they removed his chest tube on Sunday, they still needed to closely monitor the fluid on his lungs. So after a restful night of sleep, Henry was busy on Monday with his morning wake up X-ray @ 6am, vitals, and an echocardiogram. His goal on Monday was to move around as much as possible. There still remained some fluid on the lungs, so the doctors were aggressive with the diuretics which forced Henry to get out of bed often and use the bathroom. This helped him meet his goal:-). He had great visits with his brothers and more therapy dogs. One of his furry friends was named Clyde, a 125 lb Newfoundland, who hung out in his bed with him. Ben, Will and Gramma left Monday around 4:30. They enjoyed the train ride back home. Thanks to the Ronald McDonald, they were able to stay the long weekend with us. Henry continued to get most of his meds via IV, but by Monday night, they were only using the central line for blood draws. He did NOT enjoy receiving his meds by mouth and continues to be frustrated. I'm still trying to understand that one. He was extremely restless on Monday night but I realized that he had not received any pain medicine all day. I finally convinced him at 3:30am to take some Ibuprofen to help him sleep. They did his morning X-ray on Tuesday and the wait game began. The Surgeon Nurse Practitioners needed to consult with the surgeons (who were in OR)to determine if Henry could go home. By noon, our nurse let us know that we were going home! Woohoo! However, due to the fluid, we would need to come back on Friday for a chest X-ray. So after getting our bag of goodies from the pharmacy, we were headed home to Dana Point. After Henry's four surgeries and various hospital stays, I'm learning that there will always be ups and downs. It's a bit like riding a roller coaster. We are very blessed to have our family and friends. If it wasn't for all these special people in our lives, the journey would not be as comforting. Also, CHLA is the best! It always amazes me at the brilliant and dedicated staff at the hospital. We thank the Lord everyday for our family!

Day 4

Henry was happy to see his brothers, Ben and Will, and grandma Jerre yesterday. He was in some pain from the chest tube, so I think their visit helped take his mind off it for awhile. Ben and Will tried to cheer him up with their magic tricks they brought to the hospital. Henry finally slept through the night with the fluid around his lungs now draining into the chest tube. He woke up rested but still had a scratchy throat from the breathing tube inserted during surgery and from coughing. His brothers came back to the hospital around 10am and played with him for a few hours which really cheered him up. He talked to his cousins Kyle and Ryan and that helped too. He also had a visit from Belle, a Great Pyrenees. The dog climbed into his bed. I think she was bigger than Henry. She was from CHLA's dog therapy program. I'd post a picture but I'm not able to get it to work. Henry's goal today was to get the oxygen removed and chest tube pulled. He was successful with both. They removed his chest tube around 4 pm and nose cannula earlier this morning. we are getting one step closer to home. They think possibly Tuesday if everything continues to go well. Thank you for the special messages and prayers.

Day 2 & Day 3 - Busy

1st Night: Henry's first night goal was to stay as comfortable as possible. However, he had a different plan. He wanted to go home. Nurse Lisbeth was incredible and tried her best to make him as comfortable as possible. He's been in amazing care here. Thanks Paula N. for ensuring that Henry had the BEST nurses. Day 2: Nurse Lance came back to take care of him and Henry was ready to rest after a restless night. But Nurse Lance and the doctors had a different plan - eat, sit up, and start removing meds, chest tube and nose cannula. We had a busy day. He was doing so well that they moved him to CV Acute around 3pm after he had his requested grilled salmon and rice for lunch. While in CV Acute care he took his first walk down the hall and again had salmon and rice for dinner. The surgical team came in that evening and informed us that he was going to need another chest tube inserted to drain the fluid around his lungs. The Lasix and other chest tube (already removed) was not enough. He was also coughing quite a bit and becoming irritable that they had to give him 02 again, which caused even more anxiety. After some medication he was able to rest for most of the night. Day 3: Henry woke up about 5:30am just in time for his X-ray which would determine if he needed the chest tube. Given that he would possibly have surgery to insert the chest tube, he had to stop all food and fluids at midnight. We heard from the surgeon around 7:30am that he would need the procedure. By this point, Henry was very thirsty and agitated. They took him back around 9am and we were back with him by 10am. He's resting right now and already has 300cc drained from the lungs. Ben, Will and Gramma Jerre should be here when he wakes up. He really misses them. Please continue to pray for the little guy. Xoxo, Shanna

Surgery Day

Update @ 1:15pm: We are with Henry in CTICU. He's in great hands with nurse Lance. He has already been extubated and is just on oxygen via cannula. They are giving him some more pain meds as he woke up and wanted to go home. We spoke to Dr. Starnes and he is very pleased with the results. From what I could understand, they had to remove some sub aortic membrane as it was blocking the blood flow. They had to go through his septum to do so, which could have resulted in heart block (interrupting the electrical components of the heart). They were successful and Henry did not have to get a pacemaker. Thanks for the prayers. Xoxo @ 10:00am: Henry's currently in surgery. They said it would be about three to four hours before we can be with him in ICU. We were unsure until this morning if the procedure was "a go" and he had a cough the past few mornings. They did blood work and a chest X-ray along with the other standard vitals to ensure that he was healthy for the surgery. He has some vascular membrane pushing on his heart that they need to move. I'm still not clear on the exact procedure. However, it will be open heart, so recovery will take longer. He was not happy this morning 😢 but he's in amazing care. The doctors are incredible. Keep those prayers coming. God Bless!

Henry's Surgery this Thursday, May 21st, at CHLA

Hi All, it's been quite some time since we last posted to Henry's blog. Henry is now six years old and a very imaginative kindergartner. Henry has been going every six months to CHLA for check-ups since his last surgery in August 2011. During the past year, the cardiology team at CHLA has been watching a change in his blood flow. Henry had a heart catheterization procedure this past January and the doctors were able to determine the cause. He will be having surgery tomorrow to remove the excess muscle/tissue. Other than that the doctors are very pleased with the way his heart is functioning. Please keep him in your prayers. Hugs, Shanna