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

Three Weeks - Post Fontan

First and foremost, all is going well at the Schattmaier house. I can’t believe it was three weeks ago today that Henry’s heart was given a new lease on life. Henry continues to get stronger and stronger each day. His fingers and toes are no longer blue and his skin is this wonderful shade of pale PINK!!!! . We have visited CHLA twice since coming home. During both of those visits, his sats were around 97. As a CHD mom, this is something I only could dream of prior to this procedure. Words cannot express how proud we are of our little guy. It’s difficult to imagine that your almost three year-old knows what to expect during his blood draw, chest x-rays, echocardiogram and vitals. During these visits and also a visit to the pediatrician, he was so accepting and sociable. Not what one would expect given his surgery just weeks ago. Simply amazing!



Henry at his 1 week check-up with the surgical team

Steve and I want to thank my mom for being here with us. It was comforting to know that the two older boys were home safe with her or at Jamie’s house while we were away at the hospital. She was also able to stay with us for two weeks after Henry came home. I described Henry’s behavior after coming home to a few of you as, it was like having a newborn that could also walk and talk. We were exhausted! My mom allowed me to take those afternoon naps and spend time with Ben and Will. As for Ben and Will, they had a busy two weeks since I last posted. Steve took Ben and Will to Zion National Park for three days of tent camping. The boys hiked, swam in the river and experienced their first rain storm in a tent. Last week the boys started school – Ben 1st grade and Will Kindergarten.





Zion National Park - August 2011


We are settling in at home, saying good-bye to summer but looking forward to a new school year. Gramma Jerre, Steve’s mom, will be visiting us later this month. We’re looking forward to her visit. The boys love a visit from their Gramma. She’s quite the trooper playing sports, trains and cars and reading books to the boys.





Will and Ben First Day of Kindergarten and 1st Grade

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!

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

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.

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.

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.

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.

Post-Fontan Heart Cath

Henry’s Cath went well. We came home very late on Thursday. It has been challenge to find some quiet time to sit down at the computer and update you all. This house is quite busy with three boys.

Henry was in good spirits before his procedure. Admitting and pre-op went smoothly. Before taking him to the cath lab, they gave him a dose of Versed (a sedation drug) that made him very loopy. He was very fascinated making Elmo out of the Play-Doh finger puppet mold. The nurses did a good job at distracting him too as they rolled him to the cath lab. He enjoyed finding the monkey and other animals on the hallway wall mural.




In Pre-Op

The cath itself went well. Henry was in the cath lab for about two and half hours. They had to put a catheter in his groin and his neck. His heart looked just as they expected. They had to balloon both of his superior Vena Cavas due to narrowing from the Glenn procedure. We were with Henry by 11:30am in the recovery room. Due to ballooning, they wanted us to stay overnight. Initially, we were okay with this as his prior cath did not go as smooth and I was not ready to go home so quickly then. However, this time after the sedation wore off and a few hours of trying to keep a two and half-year old in a crib, we wanted to go home.



Henry in the recovery room (thanks Coach Shannon for the blanket)

Henry had to lay flat and keep his legs straight for three hours. This wasn’t too bad (I had read some pretty rough stories from other parents). Henry spent the whole time in the hospital trying to rip the IV out of his arm. Initially, they had his pulse ox on the same finger and I kept trying to tell him that the red light was Luke Skywalker’s light saber. He found that amusing for about a minute as he was still heavily sedated and swinging his finger around. We tried to keep him distracted with every preschool video we had, Thomas, Dora, Backyardagains, and Little Einsteins. The new Thomas the Train engine, Henry engine and portable carrying train case that we had him unwrap gave a few minutes of peace until he realized that he could not push the train around the track (still heavily sedated at this point). Nothing seem to be working, he was not happy and very irritated. We moved from the recovery unit to Six West, our new home for the night. After a couple of hours in the recovery room, he drank some apple juice. That seemed to be going well, so they let us try more foods. Let’s just say that the McDonald’s vanilla shake did not sit too well in his tummy. As the doctors were examining him to see if he could be released earlier, Henry became queasy from the drugs and starting throwing up. They gave him Zofran (anti-nausea medicine) and after a couple hours, he appeared to be okay. It was getting late and I know everyone wanted us just to stay the night. However, the thought of an irritated two and half-year old, hooked up to machines, lying in a crib was not a formula for a good night sleep. So at 10:30pm, the nurse gave us our discharge papers and we were on our way home.


Henry before coming home and three outfit changes later. However, the Thomas the Train engine PJs that Gramma Jerre made were pretty darn cute.


Henry got a solid six hours of sleep Thursday night but unfortunately woke up around 6am hungry and still very agitated. Let’s just say that Friday was a tough day for him. However, by Saturday, Henry was back to normal. He did take long naps but was happy and enjoyed playing with everyone in the family. Steve’s mom, Jerre, arrived on Saturday before the procedure and just left today. It was great having her here. She got to spend some great time with all the kids.



Henry on Sunday climbing the slide

At this point, we are scheduled to meet with Dr. Starnes, Henry’s surgeon, on July 7th to discuss the cath and Henry’s next surgery, the Fontan. We anticipate that the surgery will be scheduled for some time in August.

Pre-Fontan Heart Cath

Henry has his Pre-Fontan heart catheterization tomorrow morning. We are scheduled to be at the hospital at 7am. As we are the first case of the day, the procedure should start around 8:30. This is great, as Henry can’t have any food or milk after midnight tonight. They are allowing him water until 6:30am. He typically sleeps until 7:30am. So, we hope the water will be enough for the drive to LA in the morning. The procedure should take a couple of hours. There is a chance that we could go home tomorrow, but I’m not getting my hopes up. It all depends on whether or not they’ll need to do work while they’re in there.

Basically, the heart cath is being done to determine if Henry will be a good candidate for the third of the three staged surgeries used to treat HLHS. The first (“Norwood)” was done shortly after birth; the Glen (aka bi-directional Glenn, or Hemi-fontan) was the next phase, and Henry’s had that already as well. The Fontan is the completion phase of the Glenn. If you would like to read more about the heart cath or Fontan checkout - http://en.wikipedia.org/wiki/Fontan_procedure

Again, thanks for your thoughts and prayers!

Recent Shots of Schattmaier Family

Update to Pre-Fontan Cath Prep

It’s been quite some time since we have posted updates of Henry. He has been routinely visiting his cardiologist, Dr. Grace Kung at CHLA, every four to six months. During those visits, he has had echocardiograms and they have been monitoring his development. Thanks in large part to his big brothers, Ben (almost seven years old) and Will (five years old), he is like any typical third little brother would be, mischievous and energetic. It’s not every day a two and half year old is humming the Star Wars theme song. I'll post some recent shots of the boys.

1 Year Old

Henry is now 1 year old! Recent visits to his cardiologists have gone great and he is doing very well. A recent shot of Ben, Will, and Henry:

Home and Recovering

First, I want to say thank you for your continued support and prayers, it means so much to us.....Shanna

Henry is resting in his bed at HOME!!! We came home on Friday, hooray!!! His recovery has been just amazing...with the help from the surgeons' hands, care from the talented nurses and doctors, your prayers and most of all God, we have our blessed Henry home with us. We apologize for the delay in posting but this week has just gone by so quickly.

Dr. Wells, one of Henry's surgeons, came by on Thursday afternoon and was extremely pleased with Henry's progress and thought his recovery would be best at home. He is no longer requiring oxygen and is on minimal pain medicine (Tylenol as needed). His only regular medicines are Lasix and Zantac. So Friday morning the staff at CHLA completed all the discharge requirements and we were on our way by 2:30pm. CHLA is wonderful but Henry can rest and recover much more easily at home, no vitals at 4am, X rays or blood drawn after just falling asleep. :-) My mother, Steve and I are taking turns cuddling lil' Henry. He has determined that his favorite position is in our arms while we are standing and patting his back. It is so wonderful to see him smile and coo. He especially enjoyed his sponge bath this afternoon. It's nice and quiet in the house as his big brothers and dad are at a UCI basketball game. The boys were excited for us to come home as Ben exclaimed "they fixed Henry's heart, he can walk now".

As Steve had previously mentioned, the surgery went well. The first twenty-four hours of recovery from this surgery were the most challenging. His head was adjusting to the new pressure and because of this they were unable to keep him heavily sedated. Ughhh, I'm just glad he won't remember any of this. Luckily, they were able to extubate him that evening but he was still quite agitated from the pressure in his head, no food since 3am, two chest tubes and surgery itself. We were hoping to feed him sometime that night but they put him on something to help him breathe a bit more easier than just oxygen alone called Vapotherm but this hindered him from eating. Finally, he was able to eat late Tuesday morning. He was so frustrated that he kicked one of his chest tubes out - this got the doctors attention and approval to eat. We were able to remain in the CTICU until Wednesday evening as there were no beds in the recovery unit. This was our preferred place as Henry had one-on-one care in CTICU. Once Henry moved upstairs to 6 West, the other chest tube and central line were removed and oxygen was down to one-quarter liter. We knew we were one step closer to coming home. On Thursday, Henry was able to maintain his saturation levels (his preferred sats are 75-85, normal are 95-100), he fed well, the swelling from his head was minimal and he even started to smile and coo. It is just amazing how these babies recover from such a complex surgery.

CHLA is such an incredible place. Steve and I have learned so much this past year and thanks to the many, many doctors, nurses and specialist at CHLA who have comforted us during this journey. There are miracles every day in that hospital and we feel so honored that Henry could be one of those miracles.

We have some pictures to post from the big week - so check back in a few days after we get the camera adapter to download some photos. Until then, here are a few family shots from Christmas - it seems so long ago. What a new year!!!

Out of surgery - Doing well ...

Henry went into surgery at 9:00 am and was out by around 12:15. Dr. Starnes said the surgery went very well. Henry looks very good. He has opened his eyes and moves his feet. Most likely he will come off the ventilator first thing tomorrow and from there his recovery should move quickly. All his vitals are good. His color looks great. Shanna is snapping pictures so I will post an update tonight or first thing tomorrow.

Thanks for your support and prayers.

Steve and Shanna.

Surgery on Monday

Henry is now close to 12 pounds and is ready for his next surgery. This surgery, called the Glenn, will be performed by Dr. Starnes at CHLA first thing Monday morning. The surgery is expected to take 3 hours and Henry will be in the hospital for about a week.

I will post an update on Monday after the surgery.

Thank you for your thoughts and prayers for Henry.

Steve and Shanna.