Doug's First Check Up

Doug gave his parents a serious scare over the past couple of days. On Sunday night his monitor went off several times indicating that his heart rate was elevated, we would reset his machine and within a couple minutes it would alarm with the same code.

Doug's monitor is simply an apnea monitor. It doesn't tell us how fast his heart is or how long he rests between breaths, it simply alarms if he takes 30 or more seconds between breaths (Apnea) or his heart rate goes below 50 BPM or above 200BPM.

We thought that the machine may have been incorrect due to the fact that it was showing a memory full light and more than one alarm at a time. We simply put him in bed with us and decided to watch him closely on Monday.

On Monday he was acting normal. He rolled over, played and did everything he normally does. Sometime around 8:30PM Cathy noticed his chest was moving rapidly. We tried to get a pulse and had difficulty keeping up with it. We called my brother Dave who is a paramedic and He came right over. He found that his heart was racing at well over 200 BPM. It would then quickly slow to a normal rate of 100-110 BPM. This type of Heart beat is called a Supraventricular tachycardia (SVT). During an episode of SVT, the heart’s electrical system doesn't work right, causing the heart to beat very fast. SVT may start and end quickly, and you may not have symptoms. SVT becomes a problem when it happens often, lasts a long time, or causes symptoms. Doug had no symptoms that we could see. He didn't seem distressed or in pain and he continued to play and act normally throughout the episode.

We contacted the on call cardiologist at the Cleveland Clinic and he felt it was safe to have Doug stay at home for the time being. We where scheduled for a chest ex-ray and nurse visit to remove his stitches on Tuesday anyway. Needless to say I got no sleep on Monday night. We where both very worried about Doug. The Cardiologist simply said to have them give him an electrocardiogram (EKG, ECG).

Doug and I then spent the entire day Tuesday at the hospital. We had a chest ex-ray, an EKG, stitches removed and since the EKG was normal and heart problems are most often intermittent and hard to capture on an EKG which is only a snapshot of the hearts electrical system at the time f the EKG, we where sent to get a new monitor that could record an incident if we see it happen.

The nurse practitioner told me that Doug had experienced an episode of SVT while he was being operated on for his Co-Arctation of the Aorta repair almost two years ago. Dr. Mumtaz had noted it in his file and he has had no further episodes during the entire time he was monitored throughout his many hospital stays. Hopefully this has been an isolated incident and will not repeat itself. If it is a defect that he continues to have we hope to be able to get it recorded so it can be treated.

Other than the racing heart, Doug is looking great and is recovering from the surgery very well. He has his therapy sessions starting again and should be enrolled in two days a week daycare through the Cuyahoga County Board of Developmental Disabilities this fall. He automatically qualifies due to his diagnosis of CHARGE Syndrome. He has already gone to some of the play groups at the center in Westlake and we hope he is able to get into a class this fall. This is more of a group Physical Therapy session than a true daycare. They work with the children on gross motor skills and fine motor skills as well as play games.

Doug has several other follow up appointments over the next few weeks and his schedule will keep us very busy for at least the next month.

Cathy and I will keep everyone posted on his progress and I will post more pictures in the next couple of days.

Jim

Happy 4th of July

Doug enjoyed his 4th of July holiday with his first real bath in over a week. We had been giving him sponge baths since his surgery, but as of Sunday he was able to take a bath in the tub and we where able to keep his scar exposed to help it heal.

(Doug kicking in the tubby)

Douglas now has a large 5" long half moon shaped scar on his left shoulder blade from his Co-arctation repair a a large 5" scar on the center of his chest. Add the scar from his cut down on his leg and the one on his left arm and he has some real war wounds to be proud of.

He is getting better and better everyday and his personality is coming back more and more. He is certainly in some pain, but he is already back to rolling around and scooting around the house. He is amazing at how quickly he is recovering.

(His new Scars)

Bob and I went to the annual 4th of July parade. He was a bit stand offish at first, but he got much more into the parade when he found out how much candy they threw to the kids. He made out like a bandit.

(Bob and his bag of candy @ the parade)

Bob continues his partying ways as he spent all of the 4th at either the parade or at parties and is visiting his cousins Ben & Sam today.

As for now Doug says he will stay inside and enjoy the cool air. It is brutal hot out and he wants nothing to do with it.

Douglas is home!

(His personality is coming back to normal)

Douglas was released from the hospital on Thursday afternoon. His Cardiologist Dr. Prieto said that his Echo Cardiogram showed that all his repairs looked good. She sent us home wit a bunch of new instructions, some more drugs, and a list of several doctor appointments over the next several weeks. (Happy to be going home)

(He had to sleep it took so long to get discharged)

Once we got home, he reverted to the old Doug we know and love. He has already started rolling around and trying to crawl. He seems to have very little residual effect from the surgery. He is a little more prone to cry, and certainly has a little more pain, but he is happy and already started making his old noises.

Over the next six weeks we have to be especially careful when we pick up Doug and hold him. His breast bone will take the better part of two months to fully heal and picking him up incorrectly will not only cause pain but could injure him. We will not be able to giver him a bath until Sunday and even after that we can not use lotions on his scar until the scabs are completely gone.

(Home Again!)

Doug will take almost constant attention for the next few weeks, but anybody that would like to visit him can do so as long as you do not have a cold or other contagious disease. We will be keeping Douglas at home at lest until his first follow up appointment with his cardiologist in two weeks.

Thanks to everyone that has kept Doug in their prayers. He went throughout the surgery and post operation in an almost textbook fashion. We can not express the gratitude that we have for everyone that have been so kind and accommodating to us through Doug's surgery. Everybody that helped with Bob treated him great and allowed for Cathy or I to stay with Doug at all times. He had such a good time he didn't want to come home.

Thank you!

Jim

Doug Should be Home Soon

Douglas had a great day today. Cathy stayed with him overnight and I relieved her and spent the day with him. When I got to the hospital he was sitting in a seat to keep him upright. This is part of his therapy. He was not impressed.

(Unhappy with the therapy)

It is looking more and more likely that Doug will be discharged tomorrow. We are all very happy with Doug's progress so far. It bodes well for the future.

Doug is Now in M-40 bed 5 Step Down

Douglas was finally sent to the Step Down Unit Tuesday Evening.

I spent Monday night with Douglas so that Cathy could get some sleep at home and be with Bob. Bob really misses his mommy and his brother. Even so he has been having a great time with his cousins and grandparents.

Any time that Doug is in the hospital, Cathy and I try to do special things with Bob. Whether it is going to McDonald's or the kiddie park, or spending time with his cousins. This time has been no exception.

We are very fortunate to live so close to so many family members. We are also incredibly fortunate that they love Bob & Doug so much that they are willing to take care of Bob so that at least one of us can be with Doug around the clock.

We are very grateful for all their help.

Today Bob was fortunate enough to go with Grandma & Grandpa Roth to pick up my Brother Richard's son Paul. Paul loves to visit his relatives in Cleveland and Bob loves to have Paul around.

Bob, Paul and I where very lucky that my cousin Connie and her husband Jeff invited us to a picnic at their beach club at Clifton Park.

(Bob at the beach)

We always love to go and swim at the beach and enjoyed the evening with them and my other cousin Joe, his wife Theressa and their Daughter Emerson. Bob had a great time and so did Paul and I. Many thanks to Jeff and Connie!



(A beautiful sunset at Clifton Park Beach)



(Bob and Paul at the beach at sundown)


After we went to the Beach, I left Bob and Paul at my mother and fathers and went to see Doug. He is definitely in M-40 bed 5 Step Down.
He was also fast asleep. They removed his chest tubes, installed his Mini Button and started to feed him. He is still on a small Morphine drip and seams to be in little or no pain.


(Doug in Step Down Unit)


Doug is so comfortable that while I was in the Step Down with him he rolled over onto his stomach and basically started sleeping on his head.

(Boy is he comfortable)

He looks so good Cathy predicts that he will be home Thursday or maybe even tomorrow. I remain cautiously optimistic and hope he is home by Thursday. Regardless, he is getting better and better every day and having him home by the weekend is all but a certainty.

Jim

Douglas is doing great! He should be transferred to Step Down Unit today!

Douglas had a good day Monday as far as getting closer to coming home. As far as he was concerned I am sure he felt it was a terrible day.


(Miserable Douglas)

Monday was the first day that he was truly conscious since the surgery on Friday. He was in pain and was to put it simply pathetic. His cry was pathetic, his pain was bad, and his attitude was miserable. He was up the entire day mostly moaning, whimpering & trying to get comfortable. It took most of the day for the staff to get his medication to the point that he was comfortable but still conscious.


(Can't get comfortable)

The doctors removed his cut down A-line and several of his drugs and monitoring lines. He will have his chest tubes removed today and will be getting some blood. He has been a little anemic.

Doug had an unexpected visit from Grandpa Drinko. He came to see Doug and so did Aunt Jeanie and Aunt Patti. They where all thrilled to see how well Doug was doing.


(Aunt Jeanie, Aunt Patti & Grandpa Drinko)

As miserable as Doug had been all day Monday, he showed how much he is truly a fighter. He worked consistently all day to remove his O2 line

(Itchy Nose)

even after we restrained both his arms. He would arch his back and turn sideways until he could use his right hand to pull his line off.

(working off O2 line)
After an entire day of misery Doug became comfortable and fell into a deep sleep. This morning he was very content to watch cartoons.

(content if not comfortable)

Cathy's updatae from CarePages 6-28-10

Doug update
Posted 14 hours ago
Hi, it's Cathy. I haven't learned how to update the blog yet so I'm posting an update on here. Doug is doing well. He was extubated last night and is on low flow oxygen now, which he hates and is trying to remove. That's a great sign, especially since he is keeping his numbers up. He had a number of tubes removed today and will have more removed tonight/tomorrow. He is being really feisty and trying to roll around in the bed, but we have to keep him somewhat restrained because he has some tubes like his IV that they need to keep in until he is discharged and we don't want to remove them quite yet. All of your prayers have really worked, he is doing so well. Right now we are concentrating on pain management and getting him back on a complete road to recovery. We love you all. I especially want to thank all our little helpers that have helped keep Bobby entertained while we've been at the hospital. I am home with him tonight, we watched TV and had some of Grandpa Drinko's birthday cake (yum). Jim gets to enjoy sleeping at the hospital tonight, keep him him your prayers, it's not the most comfortable place to sleep at (definitely not the four seasons). I will be back at the hospital tomorrow and Jim and Bobby are going to the beach!
Hugs to you all!
jQuery(document).ready(function(){

})