Merry Christmas to All!

Wonderful stockings we received from Aaron and May with the beautiful banks that Lynn made

Grandma made little blankets for many of the grandkids.

The three daughters with Mom.

Spencer's Orchestra Bass section & others at Christmas Concert.

Christmas Eve Eve Slumber party. (above) and Christmas Morning (below)

Kathy sledding with Spencer, Rickey, Trevor, and Aaron and Sarah.

This is Sarah and Timothy dancing to the Mormon Tabernacle Choir Christmas special that Grandpa and Grandma sent us from Tonga. We all loved it.

Timothy is Home!

Timothy back at home after a long week.

Sarah and Timothy enjoying some books with Grandma Shields.

With some of the Remund cousins on Sunday: Dallin, Joanna, and TaylorSarah finally got to come visit Sunday night. She really liked the setup and begged to sleep over.

Kathy and Timothy heading to church at the hospital Sunday morning.

Timothy in his recovery room after leaving the PICU.

We are so happy to report that Timothy came home today. He left the intensive care unit on Sunday and moved to the regular recovery room. He was doing very well except he was not eating or drinking. The doctors and nurses warned us that they wake up from their surgery wanting to eat and drink everything, but then after a few hours they lose their appetite. Well Timothy lost his and was nauseous. When Jeff brought Sarah for her first visit Sunday night, he ate a few tater tots and some brownie brought by Kaitlyn Morgan, one of our Spain students. Doctors thought they might send him home Monday, but he began throwing up again. So they kept him another night, although by Monday night they were pretty sure he’d go home on Tuesday. On Tuesday the nurse practitioner, Bonnie Clay, and Dr. Kouretas, one of the surgeons, came by to see him and they really liked what they saw. Timothy even told them he wanted to eat paella (a Spanish rice dish), which was one of Timothy’s favorite foods in Spain, which he frequently requests. The doctors felt that being home would be better for his appetite and for his recovery in general. Home is the best place to be if at all possible.

So Timothy is home and he will hopefully continue to recover. He is on oxygen day and night for the next week, as ordered by the doctors. After a week or so his normal oxygen levels should remain in the mid to high 80s, and perhaps even into the low 90s. Tonight, Timothy ate essentially his first meal since last Wednesday: a quesadilla and some salad. We are grateful to all of you for your thoughts, faith, and prayers. We are thankful to the Lord for His comfort and blessings.

Nog leaves not only lasting impression, but NAUSEA!

Just trying to get comfortable, or throw-up, or taking a little snooze waiting for it to come.

Sibling Visits

We enjoyed visits from his Great-Grandma Merrill, his Auntie Heather, his sister, Mikelle, and cousin, Natalie Shields today. Yesterday I was grateful for visits from Mehana Jansen, Rachel McDonald and Timothy's four brothers: Spencer, Rickey, Trevor, and Aaron. Also, Julie Ahlstrom and Grandma Shields spent the day Friday. Thursday night we saw Zach & Liz, and Lynn & Lisa and appreciate all the time and effort spent by those who have come to visit.

As of today, poor Timothy has not been himself quite yet, although they assure me he's doing wonderfully and these are typical recovery steps. He actually progressed enough to get all of his chest tubes pulled out and stitched up. He got off the milrinone and was moved to the floor, where he's literally enjoying the floor. (see photo)

The best thing I packed (next to the mound of picture books from the library) was the egg shell carton mattress so I can lie next to him and comfort him on the ground. We're both also glad I packed the red Christmas lights for the ambiance of the room. He loves both and I loved getting to hold him today once the chest tubes were gone. He slept in my arms most of the day and he also really liked being up on his knees, rather than on his back. He often fell asleep while sitting or kneeling while in the most uncomfortable positions.

Timothy was very nauseous, tired, and worn-out though today. He had one of his throwing up sessions while in transit from the PICU to the 3rd floor and was unfortunately laying flat on his back. We tried to quickly roll him, carefully of course, but he doesn't like his bibs getting dirty. We got a blue one for him this time. The way they're talking, it looks like Timothy might be on the fast-track home--like maybe Monday or Tuesday. We'll see, but things are looking positive. He of course doesn't look so good to me, but I'm hoping that will improve before I'm left to take sole-responsiblity for his care. Enjoy some photos and real life clips of his days in the hospital.

Thanks again for all of your love, prayers, and support!

Love, Kathy

Neck and Nog leaves lasting impression

Last Monday night we invited our Spain students to our first annual "Neck & Nog" party. We all had (or tried to have) Christmas sweaters, turtle necks, egg nog, hot chocolate in decorative Christmas mugs (thanks to Kathy's nephew, Marcus) and cinnamin rolls. It was delightful, but little did we know what an impression it made on Timothy. This morning at 4 am when we called to check on Timothy, (they don't let us sleep by him in the ICU, but we did get a room in the hospital) the nurse asked us, "Do you give him egg nog?" Apparently the fasting, the surgery, and the drugs combined to make him very thirsty. All night he kept saying "egg nog, egg nog," even in his morphine stupor. He only slept one and half hours, but everyone around him got a kick out of hearing him plead for egg nog, and a lot of people heard about his OBSESSION ( as the nurse worded it) with EGG NOG!!! He would not be calmed, but he could not drink yet either. Finally at 6am, they tricked him with some vanilla milk and told him it was egg nog, and he was pacified while he had it.

We came to visit him at 6:30 am. He seemed fine drinking his "egg nog," We had to leave at 7:00 for shift changes. Little did we know what was going to happen right after we left. We don't know if our leaving caused it, but whatever the case, Timothy proceeded to get totally out- of-control for one and a half hours. He screamed, thrashed around, and pulled at all of his tubes. He bled from his chest tubes and nose. To calm him they had to use a different drug, Versed, which they had informed me the night before that they don't usually have to use after the this surgery (the Fontan) like they did after the second surgery (the Glenn). The night nurse stayed 2 extra hours and he took 4 nurses attention to calm him and re-dress all the lines he had loosened. By the time we returned, he had calmed somewhat. The nurses made it pretty clear that we should lay low and let him sleep. That hasn't really worked because when he sees me (Kathy) he wants me right by him. I assured him that I have no plans to leave him. It was interesting when he rejected one of his bibs because it was bloody. Fortunately, I always keep a stash of bibs handy.

Timothy's update

Doctors wait for the bypass machine to start.

A sample of the Gortex conduit now connecting Tim's inferior vena cava to his pulmonary artery.

Kathy, Mikelle, and Grandma Shields just after Tim's surgery.

You can see Tim's head in the lower middle. This is in the middle of the surgery.

Jeff and Tim before the surgery.

We are pleased to announce that Timothy’s surgery was successful. Dr. Hawkins met with us and told us that everything went well. He had hoped to get a 20 millimeter Gortex conduit in, but Timothy’s inferior vena cava was a little small, so he put in an 18 millimeter (see new pictures). He was happy with that, but if Timothy becomes a big man, perhaps at some future time he may need a bigger conduit.

We were able to see Timothy for a few minutes in the pediatric intensive care unit (PICU), but then we had to leave between 7-8:00 because of shift changes. He looks good but they are giving him a lot of drugs. His first word was a groggy and painful “Mommy,” followed soon by “Daddy.” Kathy had his favorite bib and he seemed to like that.
He is on a lot of oxygen and his levels are in the low 90s, which we haven’t seen since he was born. Hopefully his saturations after his surgery will be between 85 and the low 90s.
We are very grateful to the Lord for how well he is doing. Thank you for all your love and support.

Timothy is in surgery

Our last glance of Timothy as he went back into surgery.

Kathy's last kiss before handing Timothy off for surgery.

Primary Children's knows how to distract kids as they are transported to their surgery.

Timothy wasn't sure he wanted to be with Dr. Hawkins, his surgeon for all three of his surgeries.

Aunt Lisa Remund, James Remund, Timothy, Mikelle, and Kathy in the waiting room before surgery.

Dear friends,
We just turned Timothy over to the anaesthesiologists who took him to the operating room to begin his surgery (see new photos). We arrived at Primary Children's at 11:30 am today, checked in, and met with Dr. Hawkins (Timothy's surgeon for all three surgeries) and other doctors. Because younger babies get put first, Timothy is in the second surgery slot of the day for Dr. Hawkins. He was first in his previous surgeries. We enjoyed not having to wake up at 5:30 am to bring him down. Timothy ate his last bit of food (a banana) at 11:30 pm last night, and drank some Gatorade this morning at 10:00 am, which was the last thing he could drink. He did not ask for anything to eat or drink after that, which was nice. Timothy was mostly cheerful, with a few unsure moments. He assured Lisa that he already had his heart fixed.

There are risks with this surgery. Whenever anyone has open heart surgery, any number of things can happen, but compared to the other two, this one is the least dangerous. Dr. Hawkins has had only 2 babies die on him in 18 years of doing this surgery. 10-15% of children who undergo this procedure need pacemakers. Pleural effusions (liquid building up around the lungs) is always a threat as well.

We will keep you updated throughout the day. Thanks for your thoughts and prayers.

Timothy's Heart Cath Lab

Timothy's next surgery this week.

We just wanted to let you all know that Timothy's next surgery is scheduled for this week--Thursday Dec 4, 2008 (see new pictures). On November 19th, he had a heart cath lab where the doctors inserted a camera into his heart to see how things looked so they could make their plan for the surgery. Spencer was a great help on the day of Tim's cath lab on November 19th, 2008. Jeff was in Argentina for a month doing research, but he got home just before Thanksgiving. Spencer drove Kathy and Timothy to the hospital and was a great comfort to Tim and Kathy. One doctor even thought he was the dad. (SCARY!)
This surgery is called the "Fontan," named after the French doctor who came up with the innovation. Based on our understanding, in this surgery the doctors will attach a gortex conduit to the inferior vena cava (the huge vein that brings back used blood from the lower half of the body to the heart) and sew it into the pulmonary artery. This is essentially what they did with the upper vein--superior vena cava--when Timothy was four months old. So after this surgery, all of Timothy's blood will return from the body and go straight to the lungs to get oxygen (thus bypassing the heart). This will allow his only ventricle, the right, to pump oxygenated blood to the body.
Timothy does have a bit of a cough, so there is a chance that the surgery will be postponed because they are wary of operating on sick children. We are planning on posting updates on the day of the surgery and afterwards. They have told us to plan on 10-14 days in the hospital and then 6-8 weeks for recovery at home. We hope to all be home for Christmas. Recovery time varies widely depending on the case. We know one child who came home after five days days after the Fontan. Others, however, have been in much longer.
We ask again for your prayers on Timothy's behalf. We are grateful for all the faith and prayers that have strengthened Timothy and us these past two years.