Henry was discharged from the hospital late Friday afternoon. He took one more long nap before we headed home. No more IV, oxygen, wires hooked up to him or daily blood work or chest x-rays. He did go home on five meds along with Tylenol and Tylenol with codeine for pain. Everything has happened way sooner than expected. This procedure typically requires a minimum stay of seven to ten days in the hospital and not uncommon for three weeks. Henry was on his way home after four and half days! Now on to our next challenge - trying to keep an active, almost three-year old calm and quiet. In the hospital, Henry wasn’t in any hurry to sit up or walk. However, home is a different story. Much of Saturday was spent watching Little Einsteins, Team Umizoomi and of course, Nemo. However by Sunday, he was getting himself down from the couch, playing puzzles and pushing cars on the rug. He is still quite traumatized from the prior week events, so he sleeps restlessly and giving medicine turns into quick meltdowns. Steve, Ben and Will spent the weekend riding bikes, swimming and playing baseball. Also, Mark and Janis took Ben and Will to an Angels game on Friday night. Henry loves seeing his brothers. However, the three boys together can get loud and rough quickly. Although Henry is home, CHLA has us going back almost weekly for follow-up care. Henry will go back to CHLA on Tuesday for blood work, chest x-rays and a check-up with the surgical team. He is also on warfarin for a minimum of six months to a year, which requires his blood drawn twice a week initially and hopefully will lessen to a few times a month. Other restrictions are a low-fat diet and no lifting under the arms and obviously, no “rough playing” for eight weeks Although I am exhausted and overwhelmed, being home has never felt so good. Thank you Jesus!
Monday, August 22, 2011
We are home!
Henry was discharged from the hospital late Friday afternoon. He took one more long nap before we headed home. No more IV, oxygen, wires hooked up to him or daily blood work or chest x-rays. He did go home on five meds along with Tylenol and Tylenol with codeine for pain. Everything has happened way sooner than expected. This procedure typically requires a minimum stay of seven to ten days in the hospital and not uncommon for three weeks. Henry was on his way home after four and half days! Now on to our next challenge - trying to keep an active, almost three-year old calm and quiet. In the hospital, Henry wasn’t in any hurry to sit up or walk. However, home is a different story. Much of Saturday was spent watching Little Einsteins, Team Umizoomi and of course, Nemo. However by Sunday, he was getting himself down from the couch, playing puzzles and pushing cars on the rug. He is still quite traumatized from the prior week events, so he sleeps restlessly and giving medicine turns into quick meltdowns. Steve, Ben and Will spent the weekend riding bikes, swimming and playing baseball. Also, Mark and Janis took Ben and Will to an Angels game on Friday night. Henry loves seeing his brothers. However, the three boys together can get loud and rough quickly. Although Henry is home, CHLA has us going back almost weekly for follow-up care. Henry will go back to CHLA on Tuesday for blood work, chest x-rays and a check-up with the surgical team. He is also on warfarin for a minimum of six months to a year, which requires his blood drawn twice a week initially and hopefully will lessen to a few times a month. Other restrictions are a low-fat diet and no lifting under the arms and obviously, no “rough playing” for eight weeks Although I am exhausted and overwhelmed, being home has never felt so good. Thank you Jesus!
Friday, August 19, 2011
Post Fontan - Day 4
1:30PM UPDATE:THERE ARE TALKS OF SENDING US HOME TODAY!!!
9:30AM: First, I would like to thank everyone for your prayers, thoughts and personal messages. They mean so much to Steve and me.
Yesterday was another busy day. Henry went on his second short walk around the hospital floor and sat up for a few minutes. He was very excited to see his brothers, Ben and Will, along with grandpa and grandma Crabtree yesterday. They enjoyed hanging out in his room watching Nemo and playing pirates.
Well, it looks as if Henry is a step closer to going home. The surgical team took out his last chest tube around 6pm yesterday. Henry's spirit perked up almost immediately. He was talking with the nurses, smiling and more comfortable moving around in his bed. It also helped him have a more restful sleep during the night with one less and very large tube.
The goal today is to ween him off his oxygen, get him up and walking around more. The surgeons said this is one of the speediest recoveries. That said, your thoughts and prayers are working.
God bless you all, Shanna
9:30AM: First, I would like to thank everyone for your prayers, thoughts and personal messages. They mean so much to Steve and me.
Yesterday was another busy day. Henry went on his second short walk around the hospital floor and sat up for a few minutes. He was very excited to see his brothers, Ben and Will, along with grandpa and grandma Crabtree yesterday. They enjoyed hanging out in his room watching Nemo and playing pirates.
Well, it looks as if Henry is a step closer to going home. The surgical team took out his last chest tube around 6pm yesterday. Henry's spirit perked up almost immediately. He was talking with the nurses, smiling and more comfortable moving around in his bed. It also helped him have a more restful sleep during the night with one less and very large tube.
The goal today is to ween him off his oxygen, get him up and walking around more. The surgeons said this is one of the speediest recoveries. That said, your thoughts and prayers are working.
God bless you all, Shanna
Wednesday, August 17, 2011
Post Fontan - Day 2
7am: Henry had a very busy day yesterday with one of the two chest tubes removed along with the pacemaker wires, his central line and other lines. He is off the stronger pain meds and is now taking just Tylenol with codeine when he expresses discomfort. They are starting him on a new set of medications to regulate his heart and may go home on a few of those too. His recovery has been amazing. He has less anxiety and is more tolerant of the daily interruptions (meds,blood draws, x-rays, etc).
Because of all this, he was able to move to the step down unit, Cardiac Acute in room 2344. He is slowly transitioning back to a "normal" life and the doctors have him on a low fat diet and minimal fluids for the time being. He ate all of his macaroni and cheese for dinner last night (of course low fat, so I'm not sure how yummy that could be but he ate it).
Over the next few days, the goal is for his body to adjust to his new cardiovascular circulation. The main indicator is the output from his chest tube. This is also one of his major discomforts and also requires him to be on a bit of O2 (.5 liters). The nasal cannula is also an irritant but at least he pulls on these and not the chest tube or incision. It is difficult to determine when we will be going home but we continue to be optimistic. Praying also helps:-).
I'd post some pictures but I'm using the computer in his room and not sure how to upload. The new hospital is pretty cool, Steve just showed me how to use the Internet from the room. Prior post were from my IPhone.
He's sleeping peacefully right now. When he wakes up, we are going for our first walk! Woohoo.
Because of all this, he was able to move to the step down unit, Cardiac Acute in room 2344. He is slowly transitioning back to a "normal" life and the doctors have him on a low fat diet and minimal fluids for the time being. He ate all of his macaroni and cheese for dinner last night (of course low fat, so I'm not sure how yummy that could be but he ate it).
Over the next few days, the goal is for his body to adjust to his new cardiovascular circulation. The main indicator is the output from his chest tube. This is also one of his major discomforts and also requires him to be on a bit of O2 (.5 liters). The nasal cannula is also an irritant but at least he pulls on these and not the chest tube or incision. It is difficult to determine when we will be going home but we continue to be optimistic. Praying also helps:-).
I'd post some pictures but I'm using the computer in his room and not sure how to upload. The new hospital is pretty cool, Steve just showed me how to use the Internet from the room. Prior post were from my IPhone.
He's sleeping peacefully right now. When he wakes up, we are going for our first walk! Woohoo.
Tuesday, August 16, 2011
Post Fontan - Day 1
Note: Most recent post will be at the bottom.
6:30am: Henry is finally resting this morning. They needed to give him another dose of the sedative, Lorazepam, for him to sleep. He is confused and anxious being hooked up to the IVs, wires and O2 and was up most of the night. As he was already extubated when we got to see him, he was able to have some ice chips during the night. It's their hope to ween him off his meds during the next twelve hours (morphine, lorazepam and a blood pressure med).
As a follow-up, we spoke to Dr. Starnes yesterday evening and he noted that the Fontan went as routine as to be expected. He was very pleased with the results of the surgery.
6:30am: Henry is finally resting this morning. They needed to give him another dose of the sedative, Lorazepam, for him to sleep. He is confused and anxious being hooked up to the IVs, wires and O2 and was up most of the night. As he was already extubated when we got to see him, he was able to have some ice chips during the night. It's their hope to ween him off his meds during the next twelve hours (morphine, lorazepam and a blood pressure med).
As a follow-up, we spoke to Dr. Starnes yesterday evening and he noted that the Fontan went as routine as to be expected. He was very pleased with the results of the surgery.
Monday, August 15, 2011
Surgery Day
Note: Most recent post will be at the bottom
Updates:
8:15am: Henry was taken by the surgical team around 8:15 this morning. They said he should be out of surgery in three to four hours. Their gentle assurance that they do this procedure all the time was comforting. He such a strong little guy.
12:30pm: We are with Henry in the CTICU. He came out of OR around 11am and we were with him by 11:45. He's a bit uncomfortable but looks great given what he has endured.
6:00pm: It's been somewhat of a roller coaster this afternoon. The doctors and nurses are taking amazing care of him. It has been a bit of a challenge trying to get his medication balanced. I'll post more later as he just woke up very unhappy.
Updates:
8:15am: Henry was taken by the surgical team around 8:15 this morning. They said he should be out of surgery in three to four hours. Their gentle assurance that they do this procedure all the time was comforting. He such a strong little guy.
12:30pm: We are with Henry in the CTICU. He came out of OR around 11am and we were with him by 11:45. He's a bit uncomfortable but looks great given what he has endured.
6:00pm: It's been somewhat of a roller coaster this afternoon. The doctors and nurses are taking amazing care of him. It has been a bit of a challenge trying to get his medication balanced. I'll post more later as he just woke up very unhappy.
Sunday, August 14, 2011
Post Fontan Pre-Op
Hello All, this is Shanna.
As previously posted, Henry had a heart cath in May which basically helped the doctors determine the best time for his next surgery, the Fontan. Well, that time has come. We met with Dr. Starnes in July and they set his surgery date for August 18th. We got a call last Thursday and they needed to moved Henry's surgery date to tomorrow, Monday, August 15th. So last Friday, we went to CHLA for his pre-op (xray, bloodwork, EKG, etc). He was such a trooper. It was a bit earlier than expected but it is so important to have him completely healthy for the surgery, so we gladly accepted the change. My folks are driving out here to help take care of Ben and Will. The boys enjoy teasing grandpa, so that should be quite an adventure for them. Henry, Steve and I will head up to CHLA in the morning. Steve will be staying at the Ronald McDonald and I'll be staying with Henry. CHLA just opened a new hospital last month and have accomodations in the room for the parent.
We are to be at Admitting tomorrow at 7am. They expect the surgery to last 4-5 hours. We are anxious to have it done and move forward. It is our hope that this will be his final surgery for some time. The surgeon is quite optimistic given his overall anatomy. The odds are in his favor (knock on wood), but it is open-heart surgery. Everyone we spoke with at the hospital focused on recovery and not the surgery, which was heartening. It almost felt as though Fontans are routine around here, which was comforting. But still - when it's your kid?
Thank you to everyone for all the love, strength and prayers. Know that you are held in our hearts and that your prayers and thoughts are helping to carry us through this.
This time tomorrow, the surgery should be behind us and we can focus on recovery and getting Henry home.
As previously posted, Henry had a heart cath in May which basically helped the doctors determine the best time for his next surgery, the Fontan. Well, that time has come. We met with Dr. Starnes in July and they set his surgery date for August 18th. We got a call last Thursday and they needed to moved Henry's surgery date to tomorrow, Monday, August 15th. So last Friday, we went to CHLA for his pre-op (xray, bloodwork, EKG, etc). He was such a trooper. It was a bit earlier than expected but it is so important to have him completely healthy for the surgery, so we gladly accepted the change. My folks are driving out here to help take care of Ben and Will. The boys enjoy teasing grandpa, so that should be quite an adventure for them. Henry, Steve and I will head up to CHLA in the morning. Steve will be staying at the Ronald McDonald and I'll be staying with Henry. CHLA just opened a new hospital last month and have accomodations in the room for the parent.
We are to be at Admitting tomorrow at 7am. They expect the surgery to last 4-5 hours. We are anxious to have it done and move forward. It is our hope that this will be his final surgery for some time. The surgeon is quite optimistic given his overall anatomy. The odds are in his favor (knock on wood), but it is open-heart surgery. Everyone we spoke with at the hospital focused on recovery and not the surgery, which was heartening. It almost felt as though Fontans are routine around here, which was comforting. But still - when it's your kid?
Thank you to everyone for all the love, strength and prayers. Know that you are held in our hearts and that your prayers and thoughts are helping to carry us through this.
This time tomorrow, the surgery should be behind us and we can focus on recovery and getting Henry home.
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