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.