After a long day at the hospital yesterday, Eli woke up this morning at his normal time (6:30 am....not quite sure why he wakes up that early, I am trying to convince him to change that) and was relatively happy. His surgery yesterday went very well. The doctor removed three cysts from his trachea. Dr. Preciado, who is absolutely wonderful, convinced me that this will put an end to our monthly bouts with croup and our monthly trips to the ER, and our ever so wonderful visits to Childrens Hospital in DC. Eli will need to have the same procedure done again in 4-6 months to make sure the cysts did not grow back, but if everything looks good after that procedure, Eli's surgery days are over (at least I hope so). Eli had a slight reaction to the anesthesia while he was waking up from it. He was not really awake, but he went into some sort of delirium and was shaking, screaming, kicking his legs everywhere and would not wake up. After the nurse waited for a half an hour to see if he would come out of it, they ended up giving him some medicine to calm him down. While all of this was happening, his heart rate was getting somewhat high. Nothing like what we experienced when he was an infant, but it was enough for all the heart alarms to go off. I was a bit...well, ok...a lot nervous for him and at one point I looked at his hand and it was blue. At that point, I was freaking out and calmly....well ok...not so calmly told the nurse he was turning blue. It was at that exact moment in time that the nurse calmly pointed out to me that the machine was taking his blood pressure and that was why his arm and hand were a bit blue. She tried to make me feel a little better by telling me what a great job I did pointing that out, but I still felt a little silly.
Eli was having a little breathing trouble so they told us we were going to need to spend the night. We were not excited about that prospect, but we knew we would do what the doctors told us was necessary. After a few hours, Eli calmed down and the breathing improved. We were monitored for a few more hours, and then sent home with one tired little boy.
We thank everyone for all their prayers, phone calls, and visits. We have such a wonderful circle of family and friends!
I will post some pictures soon....our computer was broken for a while and Joe needs to fix it before I can upload pictures.
Friday, June 26, 2009
Thursday, June 11, 2009
Eli's ENT visit
Yesterday we headed back to Childrens Hospital in Washington DC to see a pediatric ENT for Eli's recurring croup and breathing problems. Unfortunately the news was not great. He will need to have an endoscopy procedure done on June 25th. At first I was not too worried about it, but as we got further into discussion with the doctor, I started to feel sick to my stomach. Since Eli has a heart condition, he has to be cleared to go under anesthesia by his cardiologist. He also has to be cleared by his pediatrician. The procedure itself is a minor one, but there is also a very slight chance that once the doctor looks at his trachea, he will need to have further extensive surgery. I know the doctor has to tell me worse case scenario, but it brought me back to the Eli that was 5 weeks old and in SVT. The doctor told us at that time that all he would need is a dose of medicine at the hospital and he would be fine. Eli seems to have a way of making the smallest things become ENORMOUS! It was a fluke that Eli ended up going into heart failure, needing to be intubated and sedated, and spent 2 weeks in the Cardiac ICU. He just has a way of falling into the worse case scenario category. Either way, I know Eli is a very strong boy and will be just fine and I also know there is no better place for Eli to be than at Childrens Hospital.
Please just keep him in your thoughts and prayers.
Please just keep him in your thoughts and prayers.
Monday, June 8, 2009
Benisms
This is just a taste of what my day is like with my Ben! He is hands down the funniest child I have ever heard. These were Benisms just from today...
"Mommy, some people think you can't dance. You need to show them your moves"
"Mommy, if you make me eat more lunch you will have to go to jail"
"I am so excited to go hiking today! Mommy, what is hiking?"
There were more, but I just can't remember them. I definitely need to start writing them down more often. He is one great kid!
"Mommy, some people think you can't dance. You need to show them your moves"
"Mommy, if you make me eat more lunch you will have to go to jail"
"I am so excited to go hiking today! Mommy, what is hiking?"
There were more, but I just can't remember them. I definitely need to start writing them down more often. He is one great kid!
Summer is here...
We know summer has arrived when Ben's soccer season is over and we bring out the slip and slide!
Ben finished his third season of soccer with Coach Joe (aka Daddy) and many of his friends. It was a great season and everyone on the team played very well together for being 3 and 4 year old children. The final game consisted of a quick game, huge moon bounces, and trophy presentations. Ben was quick to say that this was his third trophy!
A few days ago on one of the nice hot days we pulled out the slip and slide. I always had one of these when I was younger and I loved playing on it! The boys absolutely loved it! Ben is still a little hesitant of sliding on his stomach, but he does a mean slide on his knees that is so much fun to watch. Eli loved it as well, but he mostly just played in the water. He did try to slide a few times and that mostly resulted in him falling backwards and crying. It was still so much fun and the boys love playing on it.
We are headed off to Patapsco State Park today with the boys for a picnic dinner and some hiking. Ben is so excited to go hiking and Eli is excited to eat a picnic dinner! :) I will post pictures soon if I can remember to bring my camera.
Saturday, June 6, 2009
Supraventriculat Tachycardia, Benign Nocturnal Paroxsysmal Hemeturia, Tracheal Stenosis......
No, I have not gone back to school to be a doctor....this is the medical terminology that is used in relation to my Eli. He is one strong child!!
I have a feeling Eli will grow up to be a doctor. I say this because of all the time he continues to spend in hospitals and his pediatricians office. Last week Eli woke up with his 7th bout with Croup since late November. I quickly took him to his doctors office and he was placed on steroids to open up his airway. A few days later he was feeling great and back to normal. We had a great weekend and then on Monday he developed another small cough. By 4:00am on Tuesday morning he woke up with another croup sounding cough. This round of croup quickly turned into serious breathing problems and Eli's pediatrician sent us to the ER to get chest X-rays and further treatment for his breathing. At the ER he was given a stronger steroid and we were told we would be sent home with breathing treatments to do twice a day. It was finally decided that Eli was not getting croup, but rather having breathing issues related to his intubations he had when he was 5 weeks old and in the hospital on breathing tubes. Apparently the breathing tubes had caused scar tissue and any slight cold would turn into serious breathing problems for Eli. We were then told Eli needed to have an endoscopy procedure done to look at his trachea and would need to be under anesthesia to have the procedure. The ER pediatrician spent about an house on the phone trying to find an ENT at Childrens Hospital that could fit him in, but she could not. So, we were sent home with breathing treatments and one worried Mommy!
Side note: while in the ER we had the pediatrician that was on Eli's case when he was 5 weeks old and in SVT. The doctor was so excited to see Eli and was amazed at how big he was. She definitely spent some extra quality time with us and was giving us hugs. It was pretty neat to see how much it meant for her to see Eli.
We did the breathing treatments and laid Eli down for the night. He pretty much woke up every 10-15 minutes coughing and having respitory issues. It was a long night and in the morning he was still the same as he was in the ER. I went back to his pediatricians office and she said to see how the rest of the day goes and if there is any change in his condition for the worse, then I would need to go to the ER at Childrens Hospital in DC so he could be seen by the pediatric ENT. We went home and later that night when Eli was trying to sleep he woke up every 5 minutes coughing and had labored breathing, but this time he had a very high fever. I was in panic mode and called my sister to come watch Ben and Joe and I headed off to Childrens Hospital ER. We were there and they gave him another dose of the strong steroids and we stayed the night there with Eli. In the morning the ENT came and told us he had scheduled an appointment for a consultation for the scope procedure for this Wednesday. So, now we will go on Wednesday back to Childrens and they will schedule his procedure. If they do find anything when they do the scope they will likely laser it off and then we will have this whole mess behind us.
My little Eli likes to keep us on our toes! Please keep him in your prayers that the procedure will be easy on him and will heal him. While I am extremely nervous that he will have to be put under, I am extremely confident in the doctors at Childrens Hospital. They are the ones who saved his life and I know they will take great care of him.
I have a feeling Eli will grow up to be a doctor. I say this because of all the time he continues to spend in hospitals and his pediatricians office. Last week Eli woke up with his 7th bout with Croup since late November. I quickly took him to his doctors office and he was placed on steroids to open up his airway. A few days later he was feeling great and back to normal. We had a great weekend and then on Monday he developed another small cough. By 4:00am on Tuesday morning he woke up with another croup sounding cough. This round of croup quickly turned into serious breathing problems and Eli's pediatrician sent us to the ER to get chest X-rays and further treatment for his breathing. At the ER he was given a stronger steroid and we were told we would be sent home with breathing treatments to do twice a day. It was finally decided that Eli was not getting croup, but rather having breathing issues related to his intubations he had when he was 5 weeks old and in the hospital on breathing tubes. Apparently the breathing tubes had caused scar tissue and any slight cold would turn into serious breathing problems for Eli. We were then told Eli needed to have an endoscopy procedure done to look at his trachea and would need to be under anesthesia to have the procedure. The ER pediatrician spent about an house on the phone trying to find an ENT at Childrens Hospital that could fit him in, but she could not. So, we were sent home with breathing treatments and one worried Mommy!
Side note: while in the ER we had the pediatrician that was on Eli's case when he was 5 weeks old and in SVT. The doctor was so excited to see Eli and was amazed at how big he was. She definitely spent some extra quality time with us and was giving us hugs. It was pretty neat to see how much it meant for her to see Eli.
We did the breathing treatments and laid Eli down for the night. He pretty much woke up every 10-15 minutes coughing and having respitory issues. It was a long night and in the morning he was still the same as he was in the ER. I went back to his pediatricians office and she said to see how the rest of the day goes and if there is any change in his condition for the worse, then I would need to go to the ER at Childrens Hospital in DC so he could be seen by the pediatric ENT. We went home and later that night when Eli was trying to sleep he woke up every 5 minutes coughing and had labored breathing, but this time he had a very high fever. I was in panic mode and called my sister to come watch Ben and Joe and I headed off to Childrens Hospital ER. We were there and they gave him another dose of the strong steroids and we stayed the night there with Eli. In the morning the ENT came and told us he had scheduled an appointment for a consultation for the scope procedure for this Wednesday. So, now we will go on Wednesday back to Childrens and they will schedule his procedure. If they do find anything when they do the scope they will likely laser it off and then we will have this whole mess behind us.
My little Eli likes to keep us on our toes! Please keep him in your prayers that the procedure will be easy on him and will heal him. While I am extremely nervous that he will have to be put under, I am extremely confident in the doctors at Childrens Hospital. They are the ones who saved his life and I know they will take great care of him.
Tuesday, June 2, 2009
They grow up way too fast!
We were at the park not too long ago and Ben decided to climb on the monkey bars. He is getting so big, so fast! I get sad because he is not my little boy anymore, but on the other hand, it is so much fun to watch him try new things and to learn from them. At least Eli still likes to cuddle with me! :)
Not the best blogger...
Ok, so I am not the greatest at keeping up with this blog. I blame it on being a busy mom of 2 very acitve, yet wonderful boys! I guess I have a lot to catch up on, so I will give try to do a few posts in the next few days.
To begin, we had a fantastic time in North Carolina visiting Nonny, Grandad, Aaron, & Melissa. There is just something wonderful about the Carolinas and I tell Joe every time we visit that I could move there in a heartbeat! Everyone is friendly...they say hello, how are you?, nice to meet you, have a great day, and have great southern accents to boot!
Our trip consisted of many fun activities, but the ones that really stood out were the strawberry picking...which I forgot my camera for :( and taking the berries home to make homemade strawberry jam. Ben had the greatest time mashing all the berries and he earned the nickname, "THE CRUSHER" while doing his job. We made 6 batches of jam (which is 36 jars of the most delicious homemade jam you have ever tasted) and we split the jars between a few different groups. I never knew it could be so much fun to make jam, but we had a blast!
We also played some golf. That was not a typo! I actually played golf for the first time in about 3 years! Joe and I went out together and played the practice course, so I didn't have to pay any money to be terrible! It was still a great way to spend time with my husband, so I had a blast! Ben got really into hitting golf balls again on this visit. He can actually make pretty good contact when he pays attention to what he is doing.
We took many walks, fed turtles and fish in the ponds, and we went fishing too! We all caught fish...it was pretty fun! Eli even had his hands on a fishing pole after Joe snagged a fish. All in all, it was a great mini vacation!
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