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.