BYUFan

A couple of months ago it was Diana’s birthday and I forgot to post some pictures. Even though she didn’t have a friend party like Sam she still had fun opening presents and eating cake and ice cream with her family.

Today was Diana’s annual Spring Program at Challenger School. They held it at 9:00 a.m. so I just went with Nancy to the program before heading to the office.

Having five kids in Challenger School has made us pretty familiar with the contents of the program - the format doesn’t change much from year to year. Still, it’s fun to see the performance each year even if it is fairly routine for an audience member.

We managed to forget the video camera even after we had charged it up. Fortunately, our handy little HP camera can take videos and they turned out pretty decent for such a small little still camera.

One good thing about Diana’s rendition is that she seems to sing and do the actions a bit more energetically than some of our other kids have in the past. I seem to recall one year one of the kids spent the entire time doing big yawns and one year one of them was grumpy and didn’t sing or dance or do anything.

Diana did such a good job that after the program Nancy took her out to get a treat while I headed to work.

Today we took a trip up to Salt Lake for Diana’s six month check up after surgery. I left a good hour before the appointment thinking that there would be bad traffic this morning because we were expecting a storm. Luckily for me the storm hadn’t started yet and the morning commute was winding down so we sailed into Salt Lake about twenty minutes early for our appointment. When we got there we did the same thing we did for the previous check ups. We had to go to outpatient registration and then to x-ray. Even though Diana has had quite a few x-rays allready she still was a little fussy when they took her picture. After the x-ray we went into the exam room to wait and after a while the nurse came in to do the usual height/weight check, blood pressure check and an ekg. Diana totally whined about the ekg, I guess she forgot about the many other times she had done the same thing. Kids are sure funny that way. After all those checks were done we then waited for the doctor. Since Dr. Shaddy is no longer at Primary Children’s Hospital we had to find a new doctor and his name is Dr. Su. He came in and listened to Diana’s heart and lungs, checked her hands and feet and looked at her x-ray. Dr. Su said that everything looked great and that Diana was doing very well. Dr. Su said that after five years Diana should be done with any post-op checkups, our next one will be in two years. I was really happy with our experience at Primary Children’s Hospital and that Diana will grow normally with no problems.

After the appointment was over we went out to our car in what looked like a blizzard. The wind was blowing the snow in our faces and making it difficult to see too far ahead. Being a California girl I was very scared to drive home, but I knew as long as I drove slow enough and leaving plenty of room between me and the car in front of me that I would be okay. I drove all the way home at about 30mph. It took an hour to get home, but at least I made it safely. I think this is the snowiest winter since I have lived in Utah. I just hope it will be enough so we can water our yard and garden nicely this summer.

Sorry I don’t have any pictures for this post. I forgot to bring the camera with me to Diana’s appointment.

I don’t like Thursday night games as a general practice but it’s fun to have one every once in a while. The main problem with weekday games is traffic. On a Saturday game I leave 1.5 hours before kickoff and usually have plenty of time to spare - time to see the band march up the street, watch warm-ups, national anthem, etc. Tonight the plan was to leave 2 hours early but I was late getting home from work and that put us 20 minutes behind schedule. Traffic was horrible all the way down to the stadium and we found our seats just before kickoff.

Other than the bad traffic, it was a perfect night for a game. The weather was beautiful- chilly but not too cold, the crowd was spirited, the teams were energetic, and my beloved Cougars came away with a win. How could it get better than that? Well, it could get better if the Cougars covered the spread. Last year BYU covered the spread in nearly every game. This year it seems like they’re winning but not covering the spread in nearly every game.

What is that thing?

I think TCU is a pretty good addition to the conference. The TCU fans aren’t completly crass and vulgar (Wyoming), they don’t have an annoying chant (UNLV), and well, let’s just say they don’t bug me as bad as the Utes. The only drawback to TCU is that they have the world’s ugliest mascot. That horned frog costume has got to be the ugliest thing I’ve ever seen.

Enjoying the halftime show (the drumline looks good Danny!)

I convinced Nancy to go (she only goes to one or two games a season and only if it’s good weather) and thus we took Sam and Diana (Diana gets bored easily and has to go potty frequently so I don’t like to take her by myself). The kids had a good time and Sam is starting to enjoy the game a bit more - but still not as much as he enjoys hot dogs and nachos.

The other day Buddy saw a BYU hat in Macey’s and told Nancy he wanted it. She got him the hat and purposely got it several sizes too big “so he can grow into it”. I didn’t think Buddy would last very long with the hat but he surprised me. He wore it the entire time and didn’t take it off to play with it or annoy me with it. He still had it on in the car on the way home.

Driving home after the big game

Today Diana went to the hospital for her two week post-op doctor’s appointment. We first had to go to get an X-ray taken and then go to the cardiac waiting room and wait for the nurse to call us back. When the nurse brought us back she took Diana’s blood pressure, oxygen saturation, and an EKG.

Diana doesn’t like getting an EKG

We then had to wait some more for the doctor and the nurse practitioner to come in to take a look at Diana. The nurse took off the rest of the steristrips and said that she was healing nicely. The best thing about that is now Diana will be able to go swimming with all the other kids. The only thing the nurse cautioned me about was that the scar could easily get sunburned so she either needs it covered when in the sun or she needs plenty of sunscreen on. I expected to be in and out fairly quickly today because Diana has been doing so well and back to normal, but the doctor noticed that in her X-ray, her heart looked larger than it did when they took an X-ray right before she left the hospital two weeks ago. So they had me wait some more so they could do an echocardiogram to make sure nothing was wrong. Diana was pretty fussy by that time and she didn’t want to go, but they are good at bribing kids with toys and lolly pops so she finally calmed down. After the echo we waited some more for the results and when the doctor came back he said that the echo showed that everything was normal and that we were done and could go home. We don’t have to go back to the hospital for 6 months.

It’s taken me a few days to get back in the swing of posting after taking a leave of absence for Diana’s surgery. Here is a pictorial timeline of the surgery with a few comments:

On Thursday morning we got up bright and early and headed to the hospital. Diana was scheduled as the first surgery of the morning for our surgeon. She seemed excited to go. She knew that her “broken heart” was going to get fixed but she had no idea what was really in store. Grandpa Kent came over and watched the other kids and made sure they got their breakfast and got to school on time.

Diana on the morning of the surgery

We talked to the surgeon and anesthesiologist before the surgery, got her dressed in the hospital gown, and waited in the waiting room until the anesthesiologist came to get her. We walked with her up to the entrance into surgery at which point we had to go to the waiting room and she had to go with the anesthesiologist. The parents have the option of giving the kid a drug that will kind of calm them down and basically make them go into la-la land before they even get to the anesthesiologist but we chose not to use it. Diana seemed to be very calm about the whole affair and we didn’t think she would freak out. Even with her calmness, she didn’t want to go off alone with the anesthesiologist and started to whimper and and follow us instead. It was really heartwrenching to send her off and tell her that everything would be OK and not to be afraid. In fact, I still feel awful thinking about it now.

During the surgery Nancy and I waited in the waiting room and the nurse gave us updates on the telephone every hour and a half. It was interesting to observe the behavior of the different parents in the waiting room. I was very stoic and only got out of my chair to use the bathroom and talk to the nurse on the phone. Nancy had lots of nervous energy and was very restless. Other parents had all kinds of family members and kids in the waiting room and were chatting it up or watching TV. Diana’s surgery was scheduled to be about 4.5 hours but it took longer because her heart had more complications than they originall planned. A big thanks to Melissa for the waiting room care package - I sat there and did sudoku puzzles for five hours straight. I was a great relief when the doctor finally came in to tell us that it was over and that she was doing well.

All through the surgery I was stoic and composed; however, when we went into the Intensive Care Unit to see Diana for the first time after the surgery I really choked up. Seeing her lying there unconscious with all the tubes and wires just made my heart ache for her. Nancy patiently stood by her side for the first few hours as it took Diana quite a while to come out of the anesthesia and even then she wasn’t very lucid due to the morphine.

Waiting for Diana to come out of the anesthesia

We stayed with Diana through the rest of the first day and finally went home late at night after concluding that there wasn’t much we could do during the night as Diana was mostly sleeping and heavily dosed on morphine.

Notice the little Cinderella doll clutched in her hand in the second picture

The next day we went back to the hospital in the morning just as the nurses were moving her out of the ICU. She had done well through the night and was alert and awake even though she didn’t talk much (the breathing tube had hurt her throat and she didn’t feel good in general so she only talked in little one-word squeaks). The nurses had removed several of the IVs and other tubes that were in her but the chest drains were still in. The wound on her neck is from some type of heart pressure measuring device they stuck in through one of her neck veins. Nancy and I stayed with her most of the day, trying to get her to eat and drink so she wouldn’t get dehydrated. Finally, at the end of the day she said she had to go potty so Nancy carried her to the toilet trailing all of the chest drains and IV cables along. It hurt her quite a bit to move around and sit on the potty and after she was done she fell asleep for the night.

Awake but not happy yet. Think that will leave a scar?

The next day (Saturday) Nancy went up to the hospital and I stayed with the other kids for the day. I called Nancy several times during the day to check on Diana’s status. Nancy even managed to get a few smiles out of her. Nancy said she was doing better, eating a little bit, talking a little bit, and watching “Booty and the Beast” over and over again. The doctors also decided that her bleeding had slowed enough that the chest drains could be removed so they took them out (Nancy reported that this was painful for Diana) and stitched up the holes.

The ballons, stuffed animals, and flowers came from family, my colleagues at work, and my Internet friends. Thanks to everyone.

On Sunday I went up to the hospital prepared to spend the day with Diana while Nancy stayed at home with the kids. Before I got there the doctors and nurses had already taken Diana for chest x-rays and drawn her blood for a lab workup. About an hour after I was there the nurse announced that Diana could go home. I wasn’t expecting her to go home for at least another day so I called Nancy and she came up with a change of clothes for Diana to wear home while Grandma Connie and Grandpa Kent went to our house to watch the other kids and get them ready for church. Diana was alert, active, and talkative. She hadn’t had any painkiller since some Ibuprofen on Saturday night - a completely amazing recovery in just three days.

Going home

When we got home, we wanted her to lay still and rest but she was up and walking around the house, hopping on the tile floors, and jumping off the bottom stairs. Grandma and Grandpa took the kids to church while Nancy and I stayed home and gave Diana a bath (trying to avoid getting the wounds wet) and got her cleaned up. Even though she wasn’t going to church, she wanted to put on her Sunday dress so she could be like her older sisters.

A complete recovery

Our thanks and gratitude go out to everyone that offered help, prayers, and wishes during the past few days. Thanks for all of the kind cards, flowers, gifts, and treats. We really appreciate the thoughtfulness that everyone has shown. A special thanks to both sets of grandparents for their patience and help in watching the other kids, to the doctors and nurses at the hospital for the outstanding job they did and the care they showed, and to the Relief Society for helping with meals. We are grateful that Diana has made an amazingly fast recovery and are hopeful that her long term prognosis is excellent and will require no other surgeries in the future.

Today we went to Primary Children’s Medical Center for blood tests, chest x-rays, and pre-checkin for Diana’s surgery tomorrow. Her surgery is scheduled for 7:30 a.m and will likely last 3 or more hours. She’ll be in ICU for at least 24 hours after the surgery and possibly more depending upon how things go. Once out of ICU she’ll be in the hospital another 2-3 days depending upon how quickly she recovers.

We’re nervous and hoping for the best. Say your prayers for Diana and we’ll let you know how it goes.

This past Tuesday we took Diana to Primary Children’s Medical Center for her six month cardiac checkup.  They did both the EKG and the cardiac ultrasound.   Last time Diana had to be sedated for the ultrasound because she was too wiggly.  This time she held still with the aid of a supply of purple suckers and Cinderella playing on the TV in the room.  The ultrasound is cool - they even colorize the blood flowing through the heart so you can see exactly where the hole in her heart is.

 The doctor basically said that Diana is ready to have the surgery whenever we are ready.   He asked us when we wanted to do it.   On the one hand, we want to get it over with and know that it has to be done or else she will develop serious cardiac problems as she gets older.  On the other hand, I just can’t imagine them cracking open the chest of our precious little angel (Diana’s particular defect can only be fixed through open-heart surgery).  It was almost hard for me to control my emotions as I was contemplating the sugery but Nancy and I basically told the doctor that we are ready now.   Because Diana starts pre-school in August, we decided to get the surgery done this June so that she will be fully healed before she goes to pre-school.   Now we are just waiting for the surgical secretary to call us with the exact date.

While waiting for our house to get finished we are living in a three bedroom apartment. Since there are not enough beds, we got the playpen out of storage and put Diana in it and into the walk in closet in one of the bedrooms. Diana doesn’t seem to mind sleeping there, but I’m sure she will be happier to move into her own room and into a big girls bed.

Diana’s bedroom(closet) door.

Diana relaxing in her own little bed.

Yesterday we took Diana to Primary Children’s Medical Center for a heart checkup. Diana has a congenital heart defect called “ASD” that consists of a hole in her heart as well as veins that aren’t properly draining into the heart. The official term is Atrial Septal Defect with Anomalous Venous Connection. Because only one of her veins is messed up she doesn’t have “Total Anomalous Venous Connection” which is when all your veins are screwed up.

Diana doesn’t like getting an EKG

Diana cried when they hooked her up to the EKG machine. The hard part about getting an EKG is that she has to lay still for ten consecutive seconds in order to get an accurate reading. When she wiggles, it messes up the reading and you have to try again for another ten seconds. We tried a variety of methods to get Diana to lay still but the most effective method finally proved to be to count the seconds out loud with her.

Counting to ten.

If you’re a “count the wires” type of person like Grandpa Kent is, that’s 12 wires coming off her (fortunately they are just sticking to her as opposed to stuck into her).

After the EKG, the doctor listened to her heart and said everything is fine. They still want to wait until her heart is larger before the operate. Waiting for Diana to grow will make the sugery easier for the surgeon and the risks of developing pulmonary hypertension at Diana’s age is minimal. Because the benefits of waiting for surgery outweigh the risks, it will likely be another year or more until Diana has open heart surgery. If she had a normal ASD condition, they could repair it without doing open heart surgery. Unfortunately, the nature of her defect, along with the messed up vein, will require open heart surgery.

The end result was that we set an appointment six months from now for futher evaluation. In the meantime we’re supposed to keep an eye on her and, in the doctor’s words, “let us know if she starts turning blue.