BYU Coach Mendenhall

Look who we met today...



Yes, that is BYU Football Coach Bronco Mendenhall. We just happened to run into him today. Jacob and I were both wearing our new BYU hoodies. Coach Bronco was walking in the door as I was getting ready to exit. He stopped and pointed to my shirt and then to his and said "We match". He was so nice to stop and take a picture with Jacob. Jacob was excited to see the "BYU Coach". Love my alma mater. Go Cougars!

Cardiology Update

Today was Jacob's cardiology appointment. He had an echo, ekg and visit with the doctor. Jacob didn't want to go until I reminded him that he usually gets a prize from the doctor.

The nurse said she was going to make him look like a robot:



Doctor Etheridge commented on how happy he was. He really is happy and smiley. He likes to make us laugh and make up silly words for things.



He held still and watched Thomas the Train for the echo. It was a little hard to see the pulmonary branch arteries but the echo tech came back to them later and got some really good views.



Report:
So overall Jacob looks good. Dr Etheridge wanted to make sure he is keeping up with his friends and cousins and he has been, so that is good. The branch arteries that they got good images of look better (less stenosis- last time measured at 15, this time at 12 and 13). Thus his murmur was less pronounced. As far as the Aortic Root Dilation goes, not as great news. His z-score was 4.5 which means his aortic root is roughly 4.5 times larger than the standard deviation (this is a statistical number they use based on his height, weight, and size of the root). The doctor is hoping that it will stop growing while he continues to grow (thus reducing the z-score... a good thing). We will have another appointment in a year and look at it all again.

Shark Teeth

Jacob has been a thumb sucker since he was a baby. I wanted him to have a way to comfort himself especially with all that he had been through with surgery and all. Now we are dealing with the effects of letting him suck his thumb at will. He has a really bad overbite. But he is so cute...


After lots of attempts to get him to stop sucking his thumb we talked to a couple of different doctors. Since Jacob says "I like sucking my thumb" and has no desire to stop we have had to resort to a orthodontic appliance. It looks worse than it is, we call it his shark teeth (sharks have multiple rows of teeth and since these are behind his regular teeth that is where we got the name). It looks like a rake that pokes his thumb (they are not sharp) if he tries to put it in his mouth.



It took him a couple of weeks to get used to talking with them in. The first couple of nights were ROUGH as he had to figure out how to get to sleep with out sucking his thumb. He had the appliance in for three months and has now had it out for a while. It was nice to brake the thumb habit and hopefully his jaw and teeth will adjust without needing future orthodontic work.

Blog Book

I finally got Jacob's blog printed into a book. I love it!



This is the first four years of posts. It took me a long time to edit and get the layouts that I wanted but I was able to find a coupon for $40 off the book printing so I got an awesome deal. Just waiting to find another coupon so I can print a second book!

Doctors

I love our Pediatrician. Dr. Ryan Wilcox at Utah Valley Pediatrics is so great and his office staff is wonderful. Nurse Sam knows me well and we talk on the phone often. :) Thankfully as Jacob has gotten older and we have gotten things under control with his heart, asthma, croup, and allergies we have been to the doctor less. Yea! At Jacob's last well child exam Dr Wilcox spent a while looking in his ear. I was thinking Jacob must have and ear infection but he had not been complaining or anything. Then Dr Wilcox says "I think there is something in there." Nice, so we were off to the Ear, Nose & Throat Doctor.



Yep, sure enough there was something in there. In order to get it out they wanted to strap Jacob to a papoose board so he wouldn't fight them to get it out. I did not feel comfortable with that. I told them he would do fine and I would hold him if need be. Jacob turned his head and held perfectly still as the Doctor removed a small red bead from his ear.



Jacob is so great and compliant with doctors. It makes appointment go so well.

Cardiology Update & 4th Birthday

Jacob had his yearly cardiology appointment recently. We were lucky to be able to schedule with the outpatient clinic in Riverton which is an extension of Primary Children's Hospital but way less busy. I had tried to prepare Jacob for the appointment so he would understand what was going to happen by telling him he would get stickers on him (EKG) and then some fun goop (gel) on his chest for the Echocardiogram. When we got there he started saying “I don't want stickers. I don't want goop.” He didn't want to take off his shirt for the EKG stickers. So the nurses bribed him. He got to pick a stuffed animal. He picked a cute monkey. He let me take off his shirt and held still for the EKG.



Then we went into the other room for the Echo. Again Jacob had more whining about the goop, but we put on Toy Story to watch and gave him a sucker. He laid down and cooperated really well. In fact the Echo Tech said “I wish all my patients today would act as good as you!”


We met with the the Cardiology Fellow. She was super sweet and asked a ton of questions about how Jacob was doing, how active he was, his development, any concerns, etc. I was glad to be able to tell her that Jacob is growing and developing right on target. He is potty trained and talking up a storm. He does gets extra tired some times (still takes naps), wants to be carried if we are walking a lot and will go a little blue if he is super cold. But there are no real things that we are worried about in his day to day activities.

Dr. Etheridge came in and talked to us. She is really happy with how Jacob is looking. They are still watching the Pulmonary Branch Stenosis and the Aortic Root Dilation, but neither has gotten any worse so that is wonderful news. We will go back in another year and do it all again. Yea for a good report!


Jacob is now a big 4 year old! His is excited to be a big boy. I am so glad he is potty trained. We are still working with him to stop sucking his thumb. He picked Tony the tiger cereal for his birthday breakfast cereal. He wanted to have a Red Birthday Party with our family. So we had everything red: plates, cups, silverware, napkins, streamers, jello, strawberries, kool-aid, cake, ice cream & chicken (regular color) but with ketchup. It was a great day.


During dinner my sweet husband was reflecting on where we were 4 years ago when Jacob was born. Our 10 year old daughter commented “I am so glad we have the church.” When I asked her what she meant she talked about my husband having the Priesthood and gratitude that Jacob has been blessed to still be with our family. I want to echo her gratitude for having the gospel of Jesus Christ in our lives. I do not know how we would have coped without the comfort of the Holy Ghost, the understanding of the Plan of Salvation, prayers offered in our behalf, and the Christ-like service that was rendered (and still is) to our family.

NG Tube

Jacob turned THREE years old and is such a boy. He loves bugs, trains, cars, Buzz Lightyear, and his army guys. I am starting to see the wheels turning in Jacob's little brain.

The other day Jacob was helping me with the laundry. Everytime we went in the laundry room he would point to the yellow gas line and say "that is mine". I had no idea why he would think the gas line is his so I just replied with "really" or "that is nice". On the forth time he said it I stopped to figure out what he was talking about. Here is the gas line...



I asked what the yellow thing was and he couldn't remember the name. I asked him what it was for and he said "for my nose". For you nose? Really? Jacob said "yes, for my nose when I was a baby." Then I remember showing him this picture in his baby book...



He asked about the yellow tube in his nose. I told him that was how he got food when he was a baby until he learned how to eat. We then had show and tell where I got out a NG tube from the extra supplies we never used...



When he saw the huge gas line he thought it was the NG tube and that is why he thought it was his. I told him it was too big for his nose. He asked if it was for when he got older. I was laughing at this point. What a cute little guy!

TGA Video

I found this video today on You Tube. It is a 6 part video put out by the Children's Hospital of Philadelphia all about Transposition of the Great Arteries. I think this is a must see for TGA heart families. Wonderful graphics on the heart, surgery and information about long term prognosis. Click on the link and then on the right hand side under "next in series" turn the auto play to "on" and it will play all six parts (total about 20 minutes).

http://www.youtube.com/watch?v=2ddxXHQzWF8

The Echo and Cardiology Appointment

We had a long day yesterday. The biggest blessing is how well Jacob behaved. His echo took over 45 minutes and he held still and cooperated the entire time (even when he couldn't see the tv screen!). In summary Jacob is doing well and there are two areas of concern that the doctors will have to keep watching over time.

We woke up to a lot of snow on the ground. Thankfully once I got to the freeway it was pretty clear. We got to Primary Children's and checked in at Cardiology on time. After waiting an hour we were finally called back for the echo. Jacob got to watch the Disney movie Cars. He did so great holding still and let the echo tech do his job. Towards the end of the echo the tech could not see the Pulmonary Branch Arteries and asked Jacob if he was hiding them. Jacob said yes. It was cute. Another nurse/tech came into see if she could see the branches better and she was able to find them.



Jacob got a sucker for behaving so well. We were then off to another room where nurse Tiffany did an Electrocardiogram. Jacob had fun playing with one of the stickers. Tiffany is a member of IHH because she also has a heart defect. It was nice to talk to her. She took Jacob's blood pressure and vitals and left the room.



Jacob had brought his Fisher Price Doctor bag that he got from his cousin Alec for Christmas. After Tiffany left he got out his blood pressure cuff and stethoscope to take my vitals. He sure knows what is going on. I am just grateful he is so cooperative with doctors.

We had the Physicians Assistant come in and go over how Jacob has been doing in the last year. We talked about the cats and asthma. He asked about our other children's health and I told him about the scare with Jade's heart but how everything is fine. I appreciated the time he took to make sure they had all the info they needed and go over any concerns I had for Jacob. He listened to Jacob while having Jacob hold the stethoscope on his chest and moving it around. Then he let Jacob listen to his own heart beat. He commented that he thought Jacob would make a great cardiologist. :)

Dr. Etheridge came in and met with us. I think she is so great. She went over the echo results that everything was looking pretty good. There are two areas that they need to keep an eye on in Jacob's heart. One is that he has Pulmonary Branch Stenosis. This is a result of the switch operation and is common in Transposition kids. This is what causes the heart murmur he has. The other area to watch is the Aortic Root. When Jacob's body developed with Transposition of the Great Arteries, the Pulmonary Arteries grew where the Aorta should have been. When they were switched during his operation the pulmonary artery became the aortic artery. The new aortic artery that grew to handle low pressure blood going to the lungs is now handling high pressure blood going to the body. Because of handling higher pressures the aortic root is stretched or dilated. Thankfully both of these things are growing in proportion to his growth. We will be getting echos every year and then adding MRIs when he is a little older so they can know when/if intervention is needed. We had been aware of the root enlargement (but thought it was the other artery) and had been explained about the murmur but this was the first time I had heard the actual terms for what he has. I walked out feeling like I have a better idea of what is going on with his heart and why we are watching those areas.



Jacob was excited to get a new hot wheel car as a reward for being so good. He also got some “good patient” coins that he used to get prizes of a bouncy ball and a monkey toy.

I ended up with a really severe migraine. I tried my medicine, food, caffeine and nothing was helping. I tried to drive home but felt dizzy, nauseous, unfocused, and had major head pain. I had to pull over and have my husband come rescue me from Salt Lake. I spent the rest of the day resting. I guess I was a lot more stressed than I thought!

Allergies & Asthma

We just can't stay out of doctor's offices this year.

In November my brother got married in Louisiana. We were excited for this family trip and decided to visit my husband's grandma in Arkansas too. Grandma has cats and come to find out Jacob is allergic to cats. Severely allergic.



After a couple of hours at grandma's Jacob's eyes were red and puffy. I gave him some benadryl and he looked better. We went to bed. In the morning his eyes were read and puffy and he was wheezing. When I changed his clothes his chest was retracting with each breath. Yikes! Another dose of benadryl and we packed up and hit the road.

I called our pediatricians office back in Utah as soon as they opened. Nurse Sam told me he needed to be seen ASAP and that he might be in anaphylactic shock. We called my father-in-law and had him look up insta-care facilities that would take our insurance. We found one in Texarkana, Texas that wasn't too far from where we were at on our route from Arkansas to Louisiana.

We got to the insta-care and the nurse practitioner came into see Jacob. We talked about Jacob's medical history, heart defect and his open heart surgery. The NP listened too Jacob's heart and lifted his shirt to see the retracting I was talking about. The NP left the room and came back seconds later with a doctor and nurse. The two more nurses came in. Jacob got a shot of steroids, more benadryl, and a breathing treatment of albuterol. They were worried about him and I realized “Wow this is a lot more serious than I thought!” After all the drugs had kicked in we were released with prescriptions for four different medicines and off to the local Target to get them filled.



After a fun wedding in Louisiana we headed back to Arkansas for more time with grandma. We were able to stay with a wonderful neighbor of theirs and have short medicated visits to grandma's house and a couple of field trips before we flew back home a few days later.

The day after arriving home I called and scheduled an appointment with the allergist. Jacob has a skin scratch test done. Sure enough cat came back with a highly positive reaction. No furry friends for us anytime soon!



After talking about Jacob's tendency to contract colds that turn into croup the doctor suspected Jacob also has asthma (which also runs in out family, I know nice genetics). So now Jacob will spend the rest of the winter on medicines to see if it helps him stay healthy. After 6 weeks things are looking good so far.

Jacob's echo is tomorrow. I am anxious but hopeful that all will look well. This is his first echo since he was 6 months old. Did I mention I am feeling a little anxious?

How cute is this boy!