Eli's EKG Review

Well yesterday Eli had his second EKG within the week. Everything is looking pretty good. Last week when he had the EKG he also had a high fever, which made his heart beat close to 140 beats per minute. An EKG is very VERY sensitive to every beat, pulse, and rhythm. So his rapid heart beat probably caused some irregular heart rhythms, or made the EKG think that there was some irregular heart rhythms. Yesterday Eli's heart beat was around 117 beats per minute, and the heart rhythm seems perfectly normal... 

Another note, love being able to see a pediatric cardiologist that is just down the street! When we lived in Rexburg all our heart appointments were in Salt Lake City... 3 1/2 hours away. The cardiologist here is wonderful and has a great communication system with Primary Children's Medical Center (SLC), including a great professional relationship with Eli's surgeon there. All of the procedures will still be held at Primary Children's, but Boise will be able to meet the day to day needs. 

The cardiologist was pretty interested in the fever. (Remember this post?) We told her the symptoms, which was 4 days of high fever easily controlled on Tylenol, then a prickly rash over the neck and chest. She determined that it was probably Roseola. That seems spot on. Click HERE to see full details of Roseola. 

Sedated Heart Echo, etc.

Last week Eli had a sedated heart echo and check up at Primary Children's Medical Center in Salt Lake City. Oh, what a stressful time! Eli had woken up Monday morning with fever, but we had to leave Monday and stay the night in Salt Lake City for the appointment on Tuesday. Taking care of a sick baby on the road... I don't recommend that. Thank goodness my mother and sister were able to come with me. (Matt, my husband, stayed home with our 3 year old and finished packing the house. Oh yeah, we moved last week. Stress.) 

That night in the hotel my mom and I got a combined total of 2 hours of sleep. Eli could not rest because he did not feel well. But up and awake we were at 6am to give Eli his last bottle before the sedated heart echo and to be at the hospital by 7:15am. 

Eli has had one sedated heart echo before. But being so young (3 months old) he was able to take the sedation medicine orally. Not this time! His sedation medicine has to come through an IV.  Understand that he already did not feel well because of fever and was very cranky because of lack of sleep. So when the IV team came in and started touching him, he let them know he was not a happy camper. It took three pokes till they found a good vain. Lots of crying, lots of kicking, and a very stressed me. They finally got a good stick and off to sedation echo at 8:30am. 

Eli was so tired he only took half the sedation medicine alloted through the IV before he conked out! The echo began and Mom saw for the first time what Eli's heart looks like. She calls it an "open mouth bass," and kept wondering what we were looking at. It is pretty weird picture: the two chambers on top are connected, making one big chamber, then there is one big ventricle on the left side. And that is Eli's heart. 

Afterward Eli went to recovery for an hour and a bit to let the sedation medicine ware off. Wondering what an echo is? An echo is an ultrasound of the heart. They like to do this every once in a while to see how the heart is functioning in real time... gives much more info than an x-ray. Children Eli's age are sedated because they need to be very still for 45 min or longer. Make sense?

Met with the doctor after Eli fully recovered. There are concerns, one being the narrowing of the pulmonary artery on the right side where the stitching from the surgery took place. This can be typical in those who have had Glenn Shunts procedures. The worry is that the narrowing will cause a low blood saturation. Eli is already at 80 to 85 percent, so he does not need to go any lower. If this becomes a bigger deal before his next surgery--which is next year--then they will need to fix it before then. That is done through a cardio cath. They will run a line up his groin artery to his heart then expand a balloon to open the narrow pulmonary artery. 

AND I just got a call from Eli's cardiologist at Primary Children's saying that his EKG from last week shows some issues. Great. So tomorrow we are meeting a new cardiologist in Boise (because we moved) and are having another EKG done. Now an EKG is just stickers on the chest and measurements taken that way... not to big of a deal. Goodness, I hope everything is okay. It is okay that I cry a little, right?

Fever.

Eli is feverish today. No other symptoms, just burning up! Tylenol already given. 

I guess this is what I get for bringing him to church for all three hours! Sorry Eli baby, I promise to take better care. 

Shots cont.

Eli had his shot yesterday... but Matt took him, maybe not so bad? Only one more set this winter season! 

Oh, Shots!

Eli has learned to hate doctors' offices. Can you blame him? As soon as the nurse or doctor puts the stethoscope to his chest he cries and does all he can to reach for me. Breaks a mothers heart, I must say. 

Since December he has been receiving Syangis vaccinations. Syangis vaccinations happen once a month up to 6 months long, all through the RSV season. This is to protect a developing baby's lungs. Eli gets these because respiratory aliments can be devastating to heart babies. 

His shot is next week... Not looking forward to this at all. 

Its Been A Year...

...Since we had Eli's 20 week ultrasound and were given the first clue that his heart may not be normal.

Now this will probably be a long wordy post, and I might cry while writting this, but I need to write the whole story down before I forget to much.

Last fall we were living with my parents in the Birmingham, Alabama area for Matt's interenship. I had a really great docotor who took great care of me. I was actually hospitalized over night around 11 weeks pregnant. I had gotten really pregnancy sick, but was afraid to ask for medicine because of expense. Wieght already down 13 lbs in three weeks, I contracted the flu. During the night I started emptying my stomach a few times every hour for 8 hours. In the morning Matt took me to Dr. DeRosier's office at St. Vincent's Hospital, and I was so weak I almost could not stand. She took one look at me, ordered a wheelchair, and put me in a private room on the maternity recovery floor. For 24 hours I stayed with IV bags and popciles as company.

Anyway...

Dr. DeRosier perscribed some sweet medicine, that was not very expensive, not at all! Was able to eat again and life became easier. 20 Ultrasound was schedualed for the day before Thanksgiving. My parents and little sis came with us, along with crazy 2 year old Isaac. (He was crazy, and very sleep deprived that day!)

Matt and I had the first looks at little baby-to-be, and Matt saw that baby was a boy! But did not tell me. The ultrasound tech took a lot time, but we didn't think anything of it. My parents, sister, and Isaac came in and we were told offically that baby was a boy. Hooray! Right before the end the ultrasound tech took a few more pictures, ending with the heart. I said, "Wow, you can see his chambers!" and the tech said nothing.

Dr. DeRosier went over the results with us. Said her congratulations, then metioned that the ultrasound tech did not get the best look at the heart. Dr. DeRosier said not to worry, that we will just go to a digonositic clinic the following week at UAB and they will be able to get better pictures. She said that most of the time it is just positional and there is probably nothing wrong.

My mom and Matt were pretty optimistic, but I was worried. I tried to not let it show, and just enjoy my Thanksgiving week with food, food, food! However, I had some dread.

Diagonostic Clinic oppointment came, and boy was early it in the morning! I laid on the table trying to control my fear. The ultrasound tech looked at the brain, the kedneys, the legs, the bone facial structure, and then the heart. At that point she became really, really quiet. And spent forever trying to get better pictures. I started to cry. I knew it! I knew something was wrong. The ultrasound tech left and the speacialized doctor came in. She then took more pictures of the heart. Matt was very quiet. I was very quiet. The doctor was very quiet.

The Docotor had me sit up and then told us the news. This baby's heart did not develop correctly. The right side looked to be very underdeveloped, and there was mixing of blood between the two sides. She did not have a diagnosis nor a prognosis, but told us to be optomistic. "We may not have a football player, but we could have a trumpet player."

She said that it would be important to know the baby's chromosomes, and that doing anamniocentesis would be smart. If the baby's heart defect was due to the chromosomes then the baby probably would not live past a few months after birth. She said if this was the case then most couples opt to abort the pregnancy... I was crying, but with grace, through all of this. After two minutes I was able to find my voice and say that I would have the amniocentesis. Doing an amnio may cause a miscarriage, the chances are maybe 1 in 400. So that was a hard decision. I knew even if the chromosomes were abnormal I would not abort, but I felt that doctors needed to know all that they were dealing with. I was weeping hard, and almost unable to see where I needed to sign my name to okay the amnio. As the amniocentesis started, all I could think was: "You better not kill my baby! I am not ready to say goodbye."

On the 35 minute ride home Matt and I were very quite. We got Isaac from the sitter, and then I went and laid down. I felt at peace, but maybe more overwhelmed.

It took a week to know the preliminary chromosomes. I was very much in a mechanical mode. Thank goodness I had my mom to help me with Isaac, because I don't know how I would have handled the days without her.

I got the call on a Monday evening... they looked normal! Oh, sing praises! This baby would have a chance at life! There was still so many more questions, but for now this was good news. And we needed good news.

So this is what we were doing this time last year. Thanks for bareing with me. I wasn't in the blogging world at this time, so this is probably the first time most people have heard this story. Thanks to all for the support. We so appreciate it.

Check Up!

Eli recently had a routine check up at Primary Children's Medical Center. What a trip! Because we live a few hours away, Eli and I left the night before and drove down that night. Luckily Idaho Medicaid will reserve and pay for a hotel room if one is needed. And one was needed! It was actually quite nice: two queen size beds, a clean bathroom, and a little kitchenette. I forgot to bring a pack-n-play for Eli. He kept rolling all over the place and unable to go to sleep. I called Matt at 1am just wanting to complain. Matt then suggested a prayer... oh yeah! After the prayer Matt proposed taking the comforter off the bed, folding it up, and if the bath tub was dry, lay Eli in there. This I did, and Eli fell asleep in a matter of minutes. 

Wake up was 7:30 am. Was a breeze to get ready, and we were off at 8am. I arrived at PCMC at 8:20am, was able to a scrumptious breakfast at the cafeteria--the food there is so good!--Eli gagged a bit on a napkin and threw-up all over the place, and we checked in at 9am. I need to remember to bring a stroller. Carrying a baby with two big bags without any help was not fun. 

First to Chest X-Ray. Every time we go he gets one. Just need the shirt off, then two nurses hold him down and still. Eli gets up set! But typically it only takes 5 minutes. 

Back down the hall to wait for a basic Heart Function Echo. No sedation this time, so Eli was able to eat when hungry. When Eli's name was called we were led to a small dark room with a huge bed for Eli. Shirt off again, bottle made, TV on for distraction, and the Echo began. Eli stayed pretty still while the ultrasound (echo) was performed. He just drank his bottle, which I held, and watched a bit of Mickey Mouse ClubHouse. Only took 20 minutes at most. 

Then off to another room. Eli was weighed and measured, coming in at 18.9 lbs! and 27 inches long. That is pretty big for a heart baby. Stickers were then placed all over his chest to perform an EKG, and a blood saturation  toe measurer was placed on the foot. EKG takes five minutes, but taking the stickers off afterward is killer! Blood saturation is kept on for a while--maybe 10 minutes--to figure out a good average. Eli's was a bit lower than wanted, at 80%. Doctor came in, listened to the lungs and heart. And we were done. 

All in all, two hours long. 

Eli and I got back in the car and started to 3 to 4 hour drive back home. Phew! It was exhausting.