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!
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Duglas Wakes Up & is Off of Ventilator

Doug has been moving around and started waking up on several occasions today. He has been having problems with secretions in his lungs and we expected that he would be intubated at least until tomorrow. However, Cathy just called me to let me know that they disconnected him from the ventilator and have taken the tube out of his throat. He is breathing on his own and doing great.

(Doug's wicked scar)

Doug had his dressings changed today for the first time.He has a 4" to 5" scar in the middle of his chest and it looks like it is healing really well. This along wit the large half moon scar on his back is sure to make him even more popular with the ladies. They make him look like a tough guy.

Cathy spent last night with Doug at the Cleveland Clinic. I Picked up Bob from Grandpa Drinko's house and took him home to bed. Bob has been having a great time. He stayed at Grandma & Grandpa Roth's house for two nights. He went to the zoo with Kathy Drinko, her kids, and Cooper. He then went to Grandpa Drinko's and got to play all day with Cooper.

Bob and I got up early today and went to church. We met Mom in the cafeteria at the hospital and had an early lunch and then We went to see Doug. Bob was real concerned about Doug and said he should come home. He said Doug looked good, but he wanted him home.

Cathy took Bob to Grandpa Drinko's 75th birthday party and had a blast and then they came back to the hospital and I took Bob home so Cathy could stay with Douglas through the night. Bob told Cathy that she had to stay at home tomorrow because he missed her. I will stay with Doug tomorrow night.

Doug had lots of visitors today Uncle Dave and Kathleen came to see him, Grandpa & Grandma Roth brought Aunt Kathy Smith and Angela to see him also. Many of the PICU nurses stop in to see Doug, they all remark at how big and how good he looks. It makes them feel good to see him doing so well. They all love Doug.

(Uncle Dave & Kathleen stop by to see Doug)

(Kathleen lovin' her some Doug!)

(Kathleen saw Doug before his surgery as well)

Doug is doing very well. I am disappointed that I was there all day and it was only after I went home that they took out his breathing tube, but they will almost certainly take his main line and catheter out tomorrow. It looks like he may actually be home before Friday.

Cathy and I appreciate everybody that has helped with Bob and all the prayers for Douglas. We are truly blessed to have such wonderful friends and family. Everyone has gone above and beyond the call of duty and we can not express how grateful we are to everyone.

I will try to keep the sight updated.

Jim



This is a short video of Doug waking up

Still on Ventilator

Doug has been on the ventilator since his surgery and will probably be on it for at least the next several hours. The new plan is to have him extubated sometime Sunday.

(Doug plays peek-a-boo before surgery)

The problem is that he has been retaining fluids. They are treating him with diuretics but he still has some water in his lungs. He has been waking up slightly every few hours but they quickly re dose him with Morphine in order to keep him from rolling around in the bed.

(Doug and Mommy Before Surgery)

(Doug right before surgery)

(Doug right after surgery)

He has quickly become very popular with the nursing staff and all his nurse 'girlfriends' are trying to get him as their patient. Doug's room is now PICU bed #1. This is the first room on the left in the PICU unit. It is sort of strange since he had the last room on the left #14 for three months when he was first born. He should be in the PICU through Monday and I believe that he will be in Step Down Tuesday or Wednesday and should be home Thursday or Friday.

(Douglas on Saturday in PICU)

The Cleveland Clinic has remodelled the rooms with a fresh coat of paint, new equipment, better sleeping area for the parents and new flat screen televisions that actually work. This is a vast improvement and makes it more comfortable for everyone.

Bob has been having a great time since Doug has been at the Hospital. On Thursday he had Grandpa Drinko, Grandpa and Grandma Roth over for a Pizza party and then went to stay at Grandpa and Grandma Roth's where he and his cousins Mat and Angela had a sleep over.

He then payed real hard all day and was so exhausted that he fell asleep at Minerva's Restaurant at 5PM and never got up even when Grandma and Grandpa brought him home and cleaned him up for bed. He slept straight through till 8AM today. Then he went to the Zoo with Aunt Kathy Drinko and played hard all day with his cousin Cooper.

I just brought him home from Grandpa Drinko's house and he was so tired he went right to bed. He told me that he misses his mommy and his Dougy and wants Doug home. He will be visiting Doug tomorrow after he and Daddy go to church. Then it is back on the party scene for Grandpa Drinko's 75th birthday party.

We will keep updating as to Doug's status as often as possible. In the meantime thank you to everybody that has kept Douglas in their prayers We appreciate it very much.

Heart Repaired

Dr. Stuart just stopped by. They are done with the heart repair and they are closing Doug's chest. Dr Stuart Repaired his ASD, VSD& Mitral Valve. This should complete all repairs on Doug's heart from now on. Given a little luck he will not need any more heart surgeries.

Every thing is great and he is doing fine. We should be able to see him in within an hour or so.

Jim

Doug is Off Bi-Pass

Doug is off the Heart Lung Bi pass machine and his heart is beating on it's own again. They are doing an echo cardiogram and if that looks good they will close his chest up and get him into post-op.

They will update us again by 1pm.

Jim

All Set for Heart Surgery

We are all set for Doug's heart surgery. He will be having his ASD repaired today and we will be leaving the house to go to the Cleveland Clinic in just a few minutes.

We will keep everyone posted as to his progress.

Jim

Previous posts and updates from CarePages

Waiting till June 25
Posted Jun 3, 2010 4:16pm
Douglas and I spent the entire day at The Cleveland Clinic yesterday in order to get the Pre-operation tests done for his open heart surgery. Unfortunately we have had to postpone the surgery for three weeks. The Infectious Disease Protocol at the Cleveland Clinic requires that 21 days pass between exposure to someone with chicken pox ,or several other infectious diseases, before major open heart surgery takes place. This is regardless of the status of the immunization of the patient.
Douglas has been immunized against Chicken Pox, unfortunately he was also exposed to his cousin at my mothers birthday on the 22nd. His cousin can not be immunized against chicken pox because she has an allergy to eggs, among other food born allergies. On the 24th she developed the rash and the rest is history.
The reason that they postpone the surgery is directly related to the drugs given to an open heart patient during and after surgery. they are intended to bring the immune system down in order to prevent the patients immune system from going into overdrive to attack the heart lung machine which can be scene by the body as a foreign entity that needs to be dealt with, like a virus or bacteria. This then could allow for the chicken pox virus to infect Doug and cause serious and potentially deadly results. An infection of chicken pox, though minor in most people, can ravage a person with a weakened defense system. This reason alone made it a requirement to postpone surgery according to the ID Protocol.
We are not the least bit happy about this, but we understand the position of the Infectious Disease Protocol Team. We wanted this surgery to take place tomorrow if for no other reason that the worry and planning needed to facilitate the surgery has to be done all over again in three weeks. However, we know that they are correct in their caution. We want the best circumstances available for Doug.
This new wrinkle just adds to the time for the concern to grow in our minds. We can breath a little easier for the next couple weeks but the entire surgery and recovery is still ahead of us. It also puts Doug’s full recovery from surgery that much farther away. As much as we dreaded the surgery Friday, we had mentally prepared for it. Now we must wait and get prepared for it all over again.

Open Heart Surgry Scheduled
Posted May 12, 2010 12:05am
Dr. Prieto and the Pediatric Cardiology Team at The Cleveland Clinic have decided to close the ASD in Douglas's heart this year. We have scheduled his open heart surgery for June 4. He will have pre-operative tests on June 2.
They will certainly be closing the ASD (the hole between the left & right atriums of the heart). They may also decide to repair the VSD and his Mitral valve. Doug has a deformed mitral valve (the valve between the left atrium and left ventricle in the heart). The surgeons will have to decide if it is worth the risk to repair his valve and his small VSD. The valve, though deformed, is functioning and does not leak when closed. If they can keep his valve intact or repair it he may not need a replacement in the future.
Doug's surgeon for his Coarctation repair, Dr. Mumtaz has taken a position with a Hospital in Virginia so Doug will have a new surgeon Dr. Constantine Mavroudis & his associate Dr. Stewart will be performing the surgery. We are very confident that they will do an excellent job. We have yet to meet them, but the fact is that Dr. Mavroudis is World famous and actually DID write the book on cardiothoracic surgery for infants and children. He is the author of the primary textbook on the subject and Dr. Stewart has trained and worked with him for years. We are confident that he will get the best care as always.
It is expected that Doug will spend 4 to 5 days in the hospital after surgery and a 4 to 6 week recovery at home. He will undergo open heart surgery and they will enter his chest cavity through the breast bone, be placed on a heart lung machine, and his heart will be stopped while the repairs are made. The expected surgery time is around 4 to 6 hours.
This is as routine as open heart surgeries for infants and children get if ANY open heart surgery on a small child is routine. It has a very high survival and success rate and we anticipate Doug to come though it in good order. Regardless, we are certainly nervous. This will mark the 12th surgery and close to thirtieth procedure for Douglas. We are thrilled at how well Doug has done, he is a real trooper and a very strong boy. Never the less we certainly hope that this will be the LAST surgery for several years.
When it rains it pours:
On another note. It is hard to believe, but while Doug and I where out at his urology appointment today, we had a break in at the home. When I came home the office window was wide open. The thieves took several watches, and some jewelry, but missed much of our most expensive pieces and didn't find any cash. They took our camcorder and other items. I am sure we will find other things missing as time goes on but nobody was hurt and whatever was taken can be replaced. The Cleveland Police came to the home very quickly when I reported the incident and the detectives came right after the patrol officer. There has been a rash of home break ins in the neighborhood in the last several months. According to the patrolman his shift commander who lives a few streets away had his home broken into a few weeks ago and needless to say he and his people are determined to find the perpetrators. They assume it is probably kids looking for tings they can sell quickly.
The crazy thing is that somebody is almost always home. One of the few times nobody is home and we get robbed!

Heart Catheterization is complete. Doug doing great.
Posted Apr 20, 2010 9:32pm
Douglas had his heart catheterization today. We went to the Clinic at 6AM and he was taken to the lab at 9AM. He was back in the recovery room by 11:30AM and back at home by 8PM today. This is one of the few times he has been able to come home on the same day as he had an operation, so we are thrilled to be home and not at the hospital.
This is the eleventh time Douglas has been under general anestisia for an operation, thankfully he only had the one procedure today.
Dr. Prieto, Doug's cardiologist, explained that he has a significant ASD and a small insignificant VSD. Both are holes between the chambers of the heart. He has a siginficant increase in preasure in his pulminary artery, the artery that travels from the heart to the lungs to pick up O2. This is the concern that they had and why they chose to do a heart catheterization. She also checked his Co-Arctation repair and said it is perfect and in great shape.
She explained that the increased pulminary arterial presure may push his open heart surgery up, but they will be discussing Douglas's case with the entire Pediatric Cardiology Team on this Friday or posibly next Friday and they will then make a decision as to when to repair the ASD.
They have always intended on repairing his ASD, it is a relatively routine proceedure especialy at a large top tier heart hospital like The Cleveland Clinic. They originally intended on repairing it when he was three or four. They may move that up to sometime this year. In either case he would have open heart surgery and be placed on a heart lung machine while the repair takes place. We have always felt that the longer he can go before the repair the better, being as he would be older, bigger and stronger.
Regardless, Douglas came out of the anesthesia quickly and is doing great.
We will keep everyone posted as to the outcome of the doctors findings from the procedure.
On another note we are absolutely thrilled at the response we have received for the Charge it for CHARGE fundraiser. We are extremely greatful to all those who have donated to the CHARGE Syndrome Foundation and are blown away by the generousity. We are humbled and greatly apreciative to everyone who has given to this great organization.
Thank you!
If we have not had the chance to check out the web page and would like to give a donation, please cut and paste the address into your browser and consider donating to this excellant cause. It is an excellant resource for those of us who have a child with CHARGE Syndrome.
http://cifcsecondannual.kintera.org/faf/donorReg/donorPledge.asp?ievent=324400&lis=0&kntae324400=20592158A54C49778E7536223ECD7B0C&supId=289551876
Jim

Rescheduled Heart Catheterization Rescheduled
Posted Mar 8, 2010 4:58pm
Travis, the assisrtant in the Catheterization Lab at The Cleveland Clinic called to rechedule Dougs' procedure. Dr. Prieto will be out of town on the 13th of April. The new date for the procedure is April 20th.

Procedure Rescheduled
Posted Mar 8, 2010 1:02am
Doulas has had his heart catheterization procedure rescheduled to April 13th. Douglas was unfortunate enough to get a cold from his brother last week. When someone in generaly good health gets a cold it is short lived and has little impact on their overall health. When Doug gets a cold he is often knocked down hard. This cold has been no exception.
He has had no fever, but has had a bad cough and congetion as well as an ear infection. He also has a tendancy to vomit a good deal when he has a cough. With this in mind we contacted Dr. Prieto, his cardiologist, and she determined that he should have his catheterization postponned. They always wait six weeks after a cold to do a heart procedure on a child. This puts us into April for the next available time.
Catherine and I are both relieved that he will not be anesthetized and undergo this procedure Tuesday, however we are somewhat disapointed as we have done a significant amount of our worrying already and hate to invest in all that concern with no pay off. Our feelings being that since this procedure has to be done in oder to determine whether he needs to undergo open heart surgery sooner as opposed to later, it is best to find out as soon as possible.
In all reality the postponement works out better for Cathy as she has been very busy at work. She feels she can better afford the day off in April as opposed to now.
Due to the clearing of the schedule for his expected procedure on Tuesday, Doulas has no appointments this week. This is the first time since he has been home that he has not had a therapy or doctors appointment scheduled for an entire week. It is rare to go a day without a Doug related appointment on the calendar. This is an unexpected benefit.
Jim

Doug is Scheduled for Another Procedure
Posted Feb 24, 2010 2:04pm
Douglas and I spent the entire day at the Cleveland Clinic on Monday. He started out at the Radiology Department for a ninety minute scan to determine if his stomach is emptying correctly when he is fed. This was brought on by the continued trouble with Doug gaining weight. He has been around 19 #’s for the last several months. He has gained less than 1 # in the last four months and it is getting to be a concern for all of his doctors. He remains at less than 4% on the growth charts for both height and weight.
We then had an Echo Cardiogram to check his heart. This procedure takes around an hour. The technician was able to get exceptionally good pictures of his heart. Doug was very good for both of these procedures. He was quiet and calm, he didn’t cry at all during the Echo, and only cried for a couple minutes early on during the Stomach Emptying Study.
After the Echo his Cardiologist Dr. Prieto had her appointment. She explained what was going on with his heart. I will explain that a bit later.
We than went to see his girlfriend Dr. Anne. She is Doug’s ENT specialist and his #1 Girlfriend. She has operated on Doug many times and is involved in his Choanal Stenosis and Hearing problems. She detected a mild ear infection in his right ear. We will be treating him with drops and he will not be able to wear his right hearing aid for an entire week.
After his ENT appointment we completed the day back in the radiology unit for a series of Chest X-rays to aid Dr. Prieto in his heart treatments.
Back to his Heart condition:
Douglas has an Atrial Septal Defect (ASD). This is a hole in the heart. Douglas actually has two holes in his heart. An ASD and a VSD (Ventricular Septal Defect) He has a hole between his right and left Atrium just above his Mitral Valve and between his right and left ventricle just below his Mitral Valve. He also has a Mitral Valve Defect, but it is functioning and does not leak at this point. The problem with an ASD is that it allows for oxygen rich blood from the right Atrium to mix with the low oxygen blood in the Left Atrium. The affects of an ASD often do not show up in childhood they generally begin to appear around the age of thirty. They include Right Heart Failure, Stroke, Arrhythmia, and Pulmonary Arterial Hypertension(PAH). Since most of the negative affects of an ASD happen after adulthood, the doctors have time to close the hole sometime during early childhood.
Douglas also has a VSD in his heart. This latest Echo has given them the best picture they have gotten of this defect and they have noted that it appears to be larger than they first realized. A VSD also can cause PAH, Heart failure, Arrhythmia, and GROWTH FAILURE especially in infancy. Dr.. Prieto says that his ASD and VSD both appear to be getting larger as his heart gets larger and the rate of transfer of blood from one side of the heart to the other may be increasing. The increase in blood transfer causes the body to expend an inordinate amount of energy to oxygenate the body and this causes the rate of growth to be stunted or to be stopped. This may be the cause of Doug’s reduced growth. She is concerned that the defects may be larger than they appear and believes that they must find the actual size of the ASD and VSD in order to recommend when and how the defects will be repaired.
In order to determine the actual size of his defects and the proper course of action she has recommended that Douglas undergo an Exploratory Heart Catheterization. We have scheduled the Heart Catheterization for Tuesday March 9th at 8 AM at the Cleveland Clinic. The procedure has minimal, but real risks for Douglas and of course we are always worried whenever Doug has to be under anesthesia for any period of time. They have said that he may be able to go home Tuesday, but I would expect that he will stay the night at the hospital as this is generally what happens when he has an operation.
This is only an exploratory situation. They are trying to determine how long they can put off the correction to the heart defects. It has always bean the plan that Douglas would have his heart repaired sometime between his third and fifth birthday. This would give him time to grow and become stronger and larger prior to his open heart surgery. This allows for a better outcome. The larger and stronger the child the better they do. The repair of a VSD and ASD are relatively common. However it is open heart surgery. The heart is stopped and the patient is placed on a heart lung machine while the repairs are made. This is routine and has a high success rate, but it is still risky and complicated surgery that requires an extended recovery and is better tolerated the older a patient gets.
The Heart Catheterization will allow the doctors to decide if we can postpone the open heart surgery to allow Doug to get bigger and stronger or weather the heart defects need to be repaired now in order to allow for Doug to resume a normal rate of growth. We would obviously like to postpone any heart surgeries for as long as possible. However, we have great confidence in his team of Doctors and believe that he has and will continue to receive the best treatment necessary.
Please, keep Douglas and all of us in your prayers. We will keep you posted as to his Heart Cateterization and the doctors plan for his treatment.
Jim

Doug Home from Hospital
Posted Oct 22, 2009 1:53pm
Doug had his surgery on Tuesday as scheduled. We reported to the P-20 Surgey Center at 7AM and I walked him into the operating room around 9:15AM.
He was very charming and happy before the surgery. He had many visitors from the nurses and his doctors. Everybody knows Doug. He is like a rock star.
He underwent three seperate proceedures. Dr. Anne, his ENT, changed the tubes in his ears and inspected his nasal passages. His nasal passages are already constricted and his adnoides have been swelling and causing his breathing to be laborred, this has helped to contribute to his sleep apnea to the point that his monitor has gone off on a few occasions over the past few months. Dr. Anne wants to remove his Adnoids, but only after he is two or older. She believes that this will reduce his apnea and help quiet his breathing.
Dr. Bernard, Doug's Plastic Surgeon, did a touch up on his lip, and nostril. This is a cosmetic repair to remove a small lump of scar tissue around his right nostril and even up the connection of his lip. As hard as it is to believe, Douglas is expected to be even better looking after the scar heals.
The Audiologists did a complete hearing test for Doug while he was under anesthetic. They were able to confirm that he has significant bi-lateral hearing loss. They were also able to take molds of his ears for his new hearing aids.
His hearing level is better in his right ear. He can hear sounds at 68 - 70 Decibels on the right ear. He hears at 75 - 80 Decibels on his Left ear.
In order to give you an idea of what that meens, I have included a chart for hearing and what the average sounds of everyday objects are.
Today's Hearing Classification Hearing ThresholdNormal hearing -10 to 15 dBSlight hearing loss 16 to 25 dBMild hearing loss 26 to 40 dBModerate hearing loss 41 to 55 dBModerately severe loss 56 to 70 dBSevere hearing loss 71 to 90 dBProfound hearing loss 91 to 120 dBDeaf below 120 dB
Sound Decibel LevelRefrigerator 45Clothes dryer 60Washing machine 65Vacuum cleaner 70Blowdryer 80–90Electric shaver 85Passing motorcycle 90Table saw 95Circular saw 100Hand drill 100Diesel truck 100Gas engine mower 105Chain saw 110Car horn 120Siren 120
As you can see, without his hearing aids, Douglas can not hear anything quiter than a vacuum cleaner, lawn mower or his father (because he is so darn loud). With his aids he can hear louder conversations loud radio and TV programming, and of course his Father.
Douglas gave everybody a bit of a scare when they tried to wake him up from the anesthesia. He had trouble keeping his Oxygen level up, and was very upset and uncomfortable. We were unable to see him for several hours. We talked to his doctors after they where done with the proceedures and we where told that they would let us see him in 10 - 15 minutes. After a couple hours we became a little worried. It ended up that they decided to keep him over night for observation.
We where finaly able to see him around 3 or 3:30PM. He was mad as a hatter , but recoverred pretty quickly once he had some food and some pain medication.
Cathy spent the night in the Step-Down unit and we where able to meet some of the heart babies, and their parents that Cathy has been keeping in touch with on one of the support groups.
We are very happy to say that Douglas will probably not have any more surgeries for the next several months. He will probably have his adnoids removed next year and then have the surgery on his ASD, hole in the heart, repaired at some point between his 3rd and his 5th birthday.
We want to thank everyone for the prayers and help that you have given to Cathy and I over the past year. We greatly appreciate it.
Jim

Next Surgery on Tuesday
Posted Oct 18, 2009 11:25pm
Douglas is scheduled for his 11th surgery on Tuesday. He will be having the tubes in his ears replaced, his nasal passages inspected, his lip repaired with a slight touch up, a full hearing test and new ear molds for his hearing aides.
This is a minor set of procedures, but it is surgery and he will be under anesthetic for probably several hours. Mostly due to the hearing test.
Please, keep him in your prayers.
We are expecting to be at the hospital at the crack of yesterday, like the last surgery. We hope he is able to go home the same day like the last time.
We are always surprised at how many of the staff at the Cleveland Clinic remember Douglas. They all thought that he looked good.
We will update the sight after his surgery.
I am also posting some new pictures.
Jim

Getting work done on his junk
Posted Oct 8, 2009 5:04am
Hi guys,
We haven't posted in a while because Doug has been doing so good. We are headed to the Clinic this morning (we have to be there at six, what an ungodly hour!) for Doug's surgery. He is getting his testicles descended (sp?). It should be a very minor procedure but we worry none the less. Could you please keep him in your prayers today and hope for a speedy recovery? We are not sure if he has to spend the night or not. We will keep you updated when we have the chance.
Thanks,
Cathy

Doug has his hearing aids
Posted Mar 7, 2009 1:50pm
Hello everyone,
We haven't posted any updates recently because Doug has been doing so well! He has his new hearing aids (he got them on Thursday afternoon) and it such a joy to see him hearing things clearly for the first time. The doctors aren't sure what is in the future for his hearing, there may be a chance for a cochlear implant or it may improve or worsen on its own. They will be doing an MRI to evaluate it, but that has not been scheduled yet and I'm assuming it won't be for a few months. Doug has not began feeding yet, but the occupational therapist is working with him preparing him for it and he will have a speech therapist begin therapy with him next week. She will be beginning the feedings with him very soon.
Doug's lip is doing well. According to the plastic surgeon, this is when it will look its worst. The scar should begin fading around three months after his surgery and should be gone in about a year. We do miss his wide smile, but we have plenty of pictures to remember it.
Doug has appointments with his cardiologist and his GI doctor on Monday. We are hoping that they will go smoothly without complications. We will let you know if there are any interesting updates.
That's it for now.
Cathy

Doug's lip and hearing
Posted Jan 27, 2009 2:28pm
Douglas had a follow up appointment this morning with his plastic surgeon, Dr. Bernard. Dr. Bernard is thrilled with the way that Doug's lip looks. He stated that it will start to look worse and worse over the course of the next 3 months after which it will begin to look better and better. He expects that after a year his scar will be practically invisible.
Doug will have to continue to have his arm restraints (no-no's) for another week, and the glue that is coverring his lip will take a couple more days to peal off. After his glue is off we will be able to see how his lip really looks. regardless he allready looks like a totally different baby, just as cute as before, maybe even cuter.
While Douglas was under the anesthetic last week, a hearing test was administered. The results show that Doug has some serious hearing loss. His hearing loss is mild to moderate in his right ear and moderate to severe in his left ear. He has both nerve damage and structural defects with his ears.Doug can hear, just not that well. He can hear low tones better than higher tones. This means he is able to hear vowels better that consonents, and male voices better than female voices. In other words Doug has the hearing that Cathy has accused me of having for years.
Doug will be fitted for hearing aids within the next couple of months and the entire family will start to have training on how to get Doug's language and communication skills to the best level that they can be.
We will have a full report on his hearing Monday when we talk to Doug's girlfriend Dr. Anne. She will be fitting his hearing aides as well as following the progress of his nasal passages.
Jim

Doug's surgery went great
Posted Jan 20, 2009 8:38am
He looks like a new baby. The surgeon did a terrific job.

He is a little cranky because of the pain and he did have to spend the night last night but he is going to be discharged this morning. Jim will upload some pictures today so you can see the big change, it really is quite amazing how different he looks.
That's it for now, I have to catch up on all the work that I missed yesterday.
Thanks

Cathy

Monday's the Day!
Posted Jan 16, 2009 11:00am
MLK day is also known as Doug's surgery day at our house. We won't find out until Sunday afternoon what time it is, but we are hoping for the morning. I'm going to pack a bag and assume that he's staying over, but we don't know for sure.
In other news, Doug's nose is doing so well that we do not have to see the ENT for three weeks. That is a long time for him since it was not too long ago that he was seeing her twice a week.
Bobby is being a good boy, as always. He helps Jim alot with taking care of Doug (puts blanket on him, kisses his head, holds his hand when he's taking a bath). His vocabulary is getting better and better, or it may be that we are able to understand his garble better, I'm not sure. Bobby's new thing is taking his socks off and throwing them in the corner behind the loveseat. I don't understand why he does, I guess that the only thing I can say is "he's two".
Thats it for now.

An update on Doug
Posted Jan 11, 2009 1:47pm
Hello everyone!
Long time, no update. Sorry about that. Doug has been home for about a month and a half and we love every minute of it! Bobby and Doug both got a cold a couple days after Christmas. It was a hard week here at the Roth household. Both of them were coughing (Bobby's sounded like a seal) and Doug was extremely congested, which is not a good thing for a baby with nose issues. But they are both well again and we are looking forward to Doug's lip surgery on the 19th. It is scheduled as in and out aka outpatient, but there is a chance that he may have to stay overnight. It seems so strange to think of him staying at the hospital even though it wasn't too long ago that he was a semi-permanent resident at the Cleveland Clinic.
Jim is loving staying at home with the boys right now. He keeps them fed, clean and happy and even cleans the house while I am at work. It's funny when he says "this is a full-time job to take care of them". Mothers have been doing it for years, but men don't truly appreciate that until they do it themselves, right?
The good news about the new year is that I finally have vacation and sick days again at work, just in case. But with working at a CPA firm and it being tax season, I will not be taking many prior to May. I had enough time off during the holidays, so I'm not that sad about it.
We got results from the reflux test that Doug took last month. We were worried that his stomach acid was moving up to his esophagus and that he may need to have a procedure called the nissan in which they would create a new flap in his throat. The test came back and he does not have to have the procedure, we are overjoyed!
Well, that's about it for now. We will keep you updated more around his surgery.
Thanks
Cathy

Since Douglas Came Home
Posted Dec 15, 2008 1:37am
We are very happy to have Douglas at home. It is busy and hectic and wonderful. Since he came home we have been back to The Clinic at least five times for doctor appointments. He usually has 2 to 3 appointments on days that we go to the clinic. With Bob at home along with Doug it is a full time job just taking care of them.
Douglas was released from the Rehabilitation Hospital on the Wednesday before Thanksgiving. Doug was in the hospital for 107 days. He underwent eight seperate surgeries and numerous procedures. There were several times we thought he would come home, but every time another problem popped up. His nasal pasages have been especially troubling. His Choanal Atresia was fixed several months ago, yet he has a continuing problem with stenosis (narrowing)of the nasal passages. Much like the underlieing cause, CHARGE Syndrom, is very rare. Dr. Anne, Doug's Girlfriend, has seen him four times since he left the hospital two weeks ago and she sees him again tomorrow. If Doug doesn't get abused by Dr. Anne at least once a week he feels neglected. It's that kind of a relationship.
Doug is very well behaved and has a very good disposition. He does require round the clock attention. Even though he sleeps through the night, we do not. He is tube fed at 12, 3, 6, & 9 twenty-four hours a day. The feedings started at 1 1/2 hours and are presently at 1 hour incriments. Between getting the food ready and cleaning up afterward very little sleep happens for the adults. We have now gotten into the routine that I will feed Doug at 9AM, Noon, & 3PM when Cathy is at work. I will also feed him at 9PM and Midnight. This allows Cathy to go to bed at 10PM and get some sleep before she feeds him at 3AM and again at 6AM when she gets up for work. We are both getting between 4 to 6 hours of sleep a night. Most often closer to four hours than six.
Douglas officially has CHARGE Syndrom. Dr. Moran, Doug's Geneticist, received the full genetic break down last week. This simply confirms the diagnosis, he already had enough symptoms for Dr. Moran to diagnose him regardless of the genetic markers. This does not change anything, it simply gives us more information. What this means for Douglas is that he is more likely to have problems with physical developement and an increased chance of mental retardation. We simply do not know, however he seams very bright and interacts with people now, and this is a good sign.
We couldn't love Douglas more, regardless of any problems he may have. we have lived with not knowing what would happen to Douglas since February. Long before he was born we knew that he had serious problems. He was diagnosed with Hypoplastic Left Heart and a Coarctation of the Aorta at 16 weeks. We truely are fortuante to live in a city that has such incredible health facilities. Cathy and I believe that if we didn't have such top notch tallent available in Cleveland, Douglas would have probably not made it. We are blessed. The problems that Douglas has would not be treatable in many cities or even many states in this country. Since Douglas was born we have met parents from all over the country and from around the World. We live just 12 miles away, less than a twenty minute ride.
We feel very fortunate that Douglas is alive and as healthy as he is. We believe that he will be fine and we certainly hope and pray that he can lead a normal and fulfilling life. Like every body else, we just don't know. What we do know is that all the prayers for Douglas have certainly helped. The fact that Doug is alive, at home and thriving is nothing short of a miracle.
Bob is getting used to being a big brother and is even helpful at times. He went from completely ignoring Douglas to actually wanting to touch him and play with him. Bob has been spending quite a bit of time with Grandma & Grandpa Roth. He even has slept over a few times when Doug had early morning appointments. He even stayed with his cousins for a night.
I will post some new pictures over the next couple of days and remove some of the older ones. I am sure you will be shocked at how good Doug looks. It is hard to believe that he is the same baby.
Jim

Doug is doing well
Posted Dec 8, 2008 12:12pm
Doug is doing well. He is really enjoying being home. We are finally getting into a regular schedule for him and he is adjusting well. We went on our first family outing to the Rocky River nature center on Saturday. They were having an event where kids could go in with an elf (volunteer) and shop for presents for their parents and siblings. Bobby was not interested at all in going into the shop, but he had tons of fun playing with his cousins (Ben,Sammy, Ava and Liza).
Doug had fun, the only crying we had was from Bobby when we tried to take him behind the curtain where the little shop was at. He (Doug) sat in his stroller and enjoyed being fawned over by cousin Ellen, Aunt Marlene and other people who stopped by to see him.
Jim and Doug's week are full of doctor's appointments again. He had a morning appointment with Dr. Anne (his girlfriend) and he will see the cardiologist this afternoon. He has a therapy session with the occupational therapist tomorrow as well as an appointment with the Gastroentolist on Wednesday. He's a busy little boy.
That's about it for now, we will keep in touch.
Cathy

Sorry we haven't posted
Posted Dec 2, 2008 5:06pm
Hello everyone,
Sorry we haven't posted, we've been really busy taking care of our little angel and our little devil (aka Bob). Doug is doing well, he's sleeping alot better than we are. Today was his first day out since he came home. Daddy took him to two doctors appointments. He seemed to weather it fine, but Jim is a little tuckered out.
I'll give more info later, I have to go home and relieve Jim from Bobby and Doug duty for a couple of hours.
Cathy

Doug is at home
Posted Nov 28, 2008 10:06am
Hi everyone,
Doug is at home and he is doing great. Besides the waking up at 3 for a feeding for him, we are getting more sleep then we thought, but don't ask Jim because he will say that we aren't getting any. Bobby is handling Doug being here pretty well. He actually acknowledges that he exists, which is alot more then what he did in the hospital. Doug isn't on too many medications, basically only two for his reflux. They are not hard to give though, so that is a relief. He really is a good baby and he seems to be enjoying being home.
You are welcome to visit if you are not sick (cold, flu, etc.). We really enjoy the company and Jim will appreciate the help if you come when I am at work next week. Sorry about the lack of pictures, we are in the process of getting some software on my computer that we can upload the pictures from our camera.
We will keep you informed.
Thanks
Cathy

ENT said ok!
Posted Nov 26, 2008 11:26am
Hi everyone,
Jim just called and let me know that Doug is allowed to come home today. I am going to leave work in a few minutes and meet him over at the Rehab facility. We will have to go through some training and then we can take him home! Yippee!
Cathy

We are getting prepared...
Posted Nov 25, 2008 4:34pm
Well, depending on what Doug's girlfriend, Dr. Anne says, Doug may be coming home tomorrow. Jim and his mom were trained on the feeding pump that Doug is using today (I am extremely familiar with it, it's the same one that he has at the hospital). We are having all the equipment we need delivered today and tomorrow and getting things ready ASAP.
We will let you know as soon as we can what is the outcome.
Thanks
Cathy

Doug's 8th surgery
Posted Nov 21, 2008 9:55pm
Doug had a few procedures today. All very mild. He had tubes placed in his ears. A baloon angioplasty of his nasal passages, and a look at his vocal cords.
The tubes drained some fluid from his ears and this may help his hearing. When he was originally tested this week his hearing was deemed to be impaired. He has tentatively been diagnosed with mild to moderate hearing loss in his right ear, and moderate to severe hearing loss in his left ear. Hopefully the draining of his ears will improve his hearing. Regardless, the fact that he can hear at all is very good news.
His nasal passages had started to close up again and he had a 20% loss of space in his passages. The angioplasty brought these back to normal. He also was treated with a special drug that will help to keep the passages open. Dr. Anne (Doug's Girlfriend) will re-check his nose on Wednesday.
Doug also had his vocal cords checked and the good news is they are functioning properly, this is the best news we could have received. This clears the way for him to be sent home.
Dr. Anne believes that a major factor in Doug's continued problems is the fact that he has severe acid reflux. If they can control the acid reflux his nose, throat and vocal cords will heal much better. If she is happy with his progress on Wednesday she will discharge him from the re-hab hospital and send him home just in time for Thanksgiving.
Please, say an extra prayer that his check-up on Wednesday goes well and that Douglas can come home.
Thank you
Jim11/21/08

Doug is having a busy week
Posted Nov 19, 2008 6:45pm
Doug started off the week with a hearing test and a visit to is ENT Specialist on Monday.
Doug has some hearing loss. His right ear has mild to moderate hearing loss his left ear has moderate to severe hearing loss. This may be helped after Friday when he gets tubes in his ear to drain any fluid in his ears. Regardless, we are happy that he can hear. Many of the children with CHARGE have profound hearing loss further complicating their developement. Doug can both see and hear and this is a great
According to Dr. Anne his ENT Specialist. Douglas has further narrowing of his nasal passages. This is going to require an operation on Friday. She will use a baloon angioplasty to expand the nasal passages. She will also install tubes in his ears and check out his vocal cords. If his cords move he may be scheduled to be discharged.
On Tuesday Douglas had a swallow test. He swallowed 10-CC's @ the test and this will give Dr. Anne further info on the operation of his vocal cords.
On Wednesday he had an appointment with his Gastro-Enterologist.
Thursday he has an appointment with Dr. Papay & Dr. Bernard @ the Cleft Clinc for an initial visit about his lip. He then has a follow up visit with Dr. Magnuson about his G-Tube (feeding tube). We then get to go to the Social Security office to see if Douglas qualifies for Social Security Disability. We are not holding our breath.
On Friday he has a big day with girlfriend Dr. Anne. She will be examining and operating on him in the afternoon.
We hope he is home soon.
Jim

That darn nose!!
Posted Nov 17, 2008 4:07pm
Well, Doug had two appointments today, a hearing test and his ENT appointment. The hearing test showed some signs of hearing loss in both ears(we expected that), but it is not profound. They think he may have fluid on his ears and that is causing the problems, more on that later.
The big appointment was with the ENT. I had you guys praying for his vocal cords so much that we took some prayers off his nose. She noticed some narrowing and he has to have another surgery on Friday to open it up some more. She will also put tubes in his ears during the procedure as well as take a look at his vocal cords. The tubes should take the fluid out of his ears and then he will be retested.
Jim will probably send out a more detailed email tonight. I just wanted to give you the news because some of you were as anxious to hear as I was.
Thanks
Cathy

A good day for Doug
Posted Nov 14, 2008 8:48am
Doug was in a wonderful mood when I went to see him after work yesterday. There was a bunch of student nurses in the unit and before I came in, they were taking turns holding him and playing with him. They called him their little doll baby.
He has started to smile (not gas) whenever he sees me or when I hold him. His whole face lights up and there is pure joy in his eyes. It is so precious!
We are still counting down the days until Monday's appointment. If you could give a few extra prayers for his vocal cords this weekend, it would be appreciated.
Thanks again for all your support.
Cathy

Monday is a big day for Doug!
Posted Nov 12, 2008 4:08pm
Well, we had our family meeting at the hospital today and they started mentioning a word that I have not heard before. The word is discharge. Isn't that the most beautiful word ever? Trust me, for me it's like the angels are singing in heaven directly to me whenever I hear that word.
His being discharged all depends on his ENT appointment on Monday. If she sees movement in the vocal cord, she will probably give the approval and he could be home next Friday. If she doesn't, it will most likely mean the trache and a longer stay at the rehab facility.
Of course you know what we are hoping to happen!

A Tough Year & Long Update
Posted Nov 11, 2008 7:51pm
Douglas is doing very well. Dr. Anne, his ENT specialist, said his nasal passages have healed very well, however he may have a problem with his vocal cords. His left vocal cord doesn't move and his right cord may or may not move. The vocal cords sit in the throat and spread out as a breath is taken. If they do not move there is a great possibility that a very small amount of fluid can cause an aspiration into the lungs leading to pnemonia. Dr. Anne has scheduled a follow up for next Monday to recheck the cords. If they are paralized then they may have to install a Tracheostomy to ensure that Doug can breath freely. This is not a desirable situation.
There is often nerve damage to the cords from heart surgery. The nerve that controls the cord has to be manipulated out of the way in order to correct the Co-arctation. This is a reversable situation, but we would prefer not to have him have one.
Dr. Preato said that his heart seems to be very good. He has strong pulses in all his extremedies and his C-Arc seems to be working perfectly. He still has the murmer from the holes in his heart, but those will be taken care of in a few years when he is older and stronger.

On a less than lighter note. I was released from my employment on Friday. I was told that "it wasn't working out, and today is my last day". I was fired, shown the door, pink slipped, run out on a rail, canned, sacked, laid off, released on my own recognisense, left to my own devises, discharged, dismissed, let go.

Obviously this type of thing could have occured at a better time, especially since I recently paid off my share of the medical bills. Fortunately Cathy carries the medical insurance and she went back to work a couple weeks ago. Her extended pregnancy leave allowed us to get used to living on one income and I have allways wanted to be a kept man. Now is my chance.
I will now have the chance to spend some time with Robert and we have less of a need to make a rushed decision on what to do with Doug when he comes home. I will be able to take care of him.
With our savings and unemployment benefits we should be able to survive relatively well for the next several months, at least until I come to a decision as to what I want to do in the future.
I realy enjoyed working with Balston and Parker-Hanifin. I, however, was employed by a distribution company and only repped the Parker-Balston product. I had some success with the company. I was 'Rookie of the Year' and won some national quarterly sales contests, including the sales contest for the last quarter that ended on September 30th.
From my end I have been fired from better companies, I have been fired by some of the best corporations in this country! I can go back to selling patio rooms or Medicare supliments, or anything else I desire. Regardless with things the way they are with Doug and Bob, I am more than happy to spend my days taking care of them. I am very fortunate to have this oprotunity, not many men get the chance to spend alot of time with their children.
Please, keep us in your prayers, we realy want Doug to be released from the hospital soon, and an unexpected windfall would also be helpful.
Jim

November 11, 2008

Doug is doing great!
Posted Nov 7, 2008 10:08am
Doug and I spent the night together. He was in his crib and I was in a chair/bed contraption. We both got alot of sleep, except when he decided that 2 am was the party hour and he had go get up and dance (aka poop and cry). His nose is doing great, knock on wood. His little tummy is healing from his surgery and is looking better every day. Jim, Bobby and I are going to visit him tomorrow morning and then do something fun for Bobby. We're thinking about the zoo, but they might catch him and put him in a cage if he's bad. Well, that's what we're going to tell him.
We will keep you updated.

Jim

Doug's surgery went great!
Posted Nov 4, 2008 10:30pm
Doug had a successful surgery today. The ENT checked his nose and said that everything looks good. She said that we are not out of the woods yet, the next two weeks are the time when the passages might close again so we have to be cautious. This may sound weird, but please pray for Doug's nose, he would really appreciate it.
Dr. Magnason (spelling?) inserted his g-tube today. He no longer has a tube sticking out of his mouth. He is feeding with the g-tube already and it is so much easier for him and us to get his food. He is still in some pain from his surgery, but he will heal in the next few days.
The best part about today is that his surgery went so well that they sent them back to the rehab hospital directly from post-op. I did not have to sit around a stepdown unit for hours on end waiting for the nurse to see where the ambulance was wondering if they were ever going to come. Doug is back in his crib looking at his mobile with glee (the tylenol with codeine helps).
After he recovers from his surgery, we will find out exactly when he can come home, hopefully soon. We will let you know as soon as we find out.
Thanks
Cathy

Surgery has been scheduled
Posted Nov 3, 2008 3:33pm
Doug is definitely having surgery tomorrow. He will be transported over at 6am and will have his surgery at 7:30. We will update you after his surgery is done.
thanks
Cathy

Waiting to hear about surgery
Posted Nov 3, 2008 9:24am
Hi, we had a good weekend. Doug went back to the rehab facility on Friday while Bobby and I were trick or treating (at around 7 pm). He is happy to be back in his crib with his mobile and all of his toys. I spent both weekend days with him and he was a little angel. He did have some stuffiness on Saturday, but yesterday he was clean as a whistle. We went for a walk in his stroller and watched a Clean House marathon on tv.
We are waiting to see if his surgery is still on for tomorrow. We have not received any cancellation notices, but because his tubes were removed on Thursday, the ENT may have cancelled. The g-tube is the more important part of the surgery for us right now, so hopefully that is still on. I'll let you know as soon as I find out.
Thanks
Cathy

Doug in PICU
Posted Oct 30, 2008 11:56pm
Cathy just returned from the PICU where Doug is being observed. He had a very tough day. He was having problems with his O2 levels when he was sleeping last night. He was having some trouble breathing. He was transported to the PICU in the early AM. They attempted to suction out the build up of mucus in his nasal passages, but he continued to show signs of congestion and trouble in breathing.
The decision was made to remove the nasal stents a few days early. This allowed for the thorough cleaning of his nasal passages.
He put up quite a fight all day. He is very strong. We would have to hold him down while they suctioned him out. Needless to say he didn't like having saline and vacuum tubes stuck deep into his nose and he let everybody know it.
He was so exhausted by the time they removed his stents and cleaned him out that he fell fast asleep and has been that way for many hours.
The doctors believe that he has a viral infection. They are not sure which. Regardless, he will have to be monitored and will remain at the Main Campus for the time being.
We are not sure if this will interfere with his surgeries on Tuesday. We hope that the surgeries go on as planned. The sooner he gets them, the sooner he can come home.
Douglas has been in the hospital for 11 weeks and 1 day.

Back at the main campus
Posted Oct 30, 2008 1:47pm
Hi everyone. Doug was taken over to the main campus today (PICU). His oxygen levels were dropping last night when he was sleeping. They think that it may be a viral infection and did a culture to see what it was. At this time we do not have the results. He will be transferred to the regular floor for observation and will probably be there for a few days to see if his illness gets worse. Right now he seems perfectly fine, except for the occasional dropping of stats. The good news is that the ENT checked him and said that his nasal passageway looks clear and is healing nicely. We will update you whenever we hear anything else.
He does have his Halloween costumes with him so we will have some pictures for you with his many outfit changes.

Cathy

Our Family Meeting at the Rehab Hospital
Posted Oct 29, 2008 1:55pm
We had our second family meeting with all of the therapists and the doctors today. Jim was there and I was on the phone. Jim can go into more detail, but it sounds like he may be able to come home sooner than I thought (depending on how his nose is doing). They were talking about him going home from Main Campus instead of him coming back to rehab while we were trained on how to feed him, etc. Everyone cross your fingers and pray that his nasal passage stays clear and wide!
Jim will go into more detail later tonight.
Thanks
Cathy

Doug's ENT appointment
Posted Oct 27, 2008 9:49am
Doug had an appointment with his ENT this morning to check out his nasal tubes. She said that the healing looked good and she will see him again on Friday (I think she has a crush on him). The bad news is that he will not be getting his lip fixed at the surgery next week. The ENT may have to go in again after the surgery and did not want to worry about ruining the plastic surgeon's work.
The lip surgery being delayed is not that upsetting though because it is not what is keeping him from coming home. This surgery will probably be done outpatient with him coming home that day or the day after. The other two issues (nose and feeding) are the most important to get resolved and those will be done soon.
We will keep you updated with any more news, keep the prayers coming.
Thanks
Cathy

Doug's surgery has been officially scheduled
Posted Oct 25, 2008 7:50am
Doug will be having his nasal tubes removed and a g-tube put in on November 4th. Election day, yeah! We do not have a time yet which frustrates Jim, he does not want to miss an opportunity to vote.
Doug had a good day yesterday, even without Mommy being with him all day. He slipped out of his restraints twice when I was there last night, he is a sneaky little monkey.
Jim and I are taking Bobby to a pumpkin patch this morning, I'm expecting it to be fun, if fun means Bobby running away from us and screaming that he wants candy, hee hee.
Going back to work was fun, it was nice seeing everyone and it seemed like I never was gone.
We will keep you updated with any changes.
Thanks
Cathy

Doug's Back at Rehab FINALLY
Posted Oct 23, 2008 9:19pm
Well, Doug and I spent the day together in stepdown at the main campus. It was frustrating to say the least. He is finally back at rehab (arrived there at around 8 pm) and we thrilled. The poor thing has full-length arm restraints to keep him from grabbing his nose, but they are definitely needed. He has become Houdini baby because he is able to occasionally get out of them. It is going to be a fun filled couple of weeks keeping an eye on him so he doesn't pull out the tubes again!
Today was the last day of my maternity leave, I will be back at work tomorrow. Please add me back to your jokes/funny emails list, I will definitely need the laughs.
We will keep you informed of any more updates and Jim will get some pictures of Houdini Doug in his restraints posted as soon as he can.
Thanks
Cathy

Doug's Sureal Day
Posted Oct 23, 2008 3:07am
Doug pulled his nasal stents out of his nose this morning. This required a trip back to the Crile building at the Main Campus so that Dr. Anne could re-insert them. She was unsuccesful at getting them in while he was concious and in her office so he was taken to surgery in order to have them re-inserted.
Surgery took about an hour and a half. He as then sent to post-op where he waited to be stablized and transported back to the Rehab Horspital. The transport team arived around 9PM. He had developed a fever after surgery, which is not abnormal, but he could not be released to the rehab hospital until it subsided. The transport team left to take care of other patients.
The fever subsided within an hour and the transport team was once again requested. This time they found that they did not have a car seat for him. He is way to small to be transported on a gurney. They were unable to take him.
Donald Martin's Ambulance service was then called in to take him.They arrived around 12 Midnight. at this time the re-hab hospital said they would not be able to take him in to the system after midnight, we would have to wait until the morning.
By 2am they finally had a bed for him in the Step-down unit. he will be there for a few hours until he can be transported in the morning.
All in all, it has been a very strange and frustrating day.
Jim

Super duper strength Doug - wonder baby!
Posted Oct 22, 2008 8:20pm
Doug really missed the main campus. He was at the rehab clinic less than 24 hours and managed to pull out his nasal stints/tubes. That meant another trip to the ENT. She tried unsuccessfully to reinsert the tubes in her office so we had to take him over to the operating room so she could put him under to reinsert them. He is in the OR right now, Daddy is hanging out at the hospital with him and I'm at home with Bobby. I will update you on how the procedure went.
Cathy
p.s. Poor Doug will have to wear baby restraints for the next two weeks, I bet he wouldn't have done it if he would have known.

Back to Rehab, see ya main campus!
Posted Oct 20, 2008 7:47pm
Doug is going back to the rehabilitation hospital on Tuesday. They told us he would be at main campus for a week and we expected him to be at the main campus for two weeks (we've learned to double all predicted times), so this is great news. They said he was too healthy to be there.
He will have the stints in his nose until for another week and a half or so (depending on when surgery is scheduled). They will also be putting in his g-tube during the same surgery. This is ahead of schedule as well.
He will finally be able to come home after the tube is inserted (and healed) and we are trained on how to use it. There may be other things that put snags in the plan, so we aren't planning the homecoming party just yet.
Healthwise, Doug is doing fantastic compared to how he was on Friday/Saturday. He was flirting with nurses and female doctors today and keeps pulling out his feeding tube (he's feisty).
Bob is doing great. He is repeating words alot, so if you see him, try not to curse. He is really good at animal sounds and has increased his song library. Right now he knows Twinkle Twinkle (of course), Old McDonald, Itsy Bitsy Spider and Ba Ba Black Sheep. I'm trying to teach him to say I love you, but he isn't feeling it yet. Maybe I should put it in a song.
Today is our anniversary, seven years of wedded bliss. We will eventually celebrate it, possibly in January (hee hee).
That's it for now.
Cathy

Doug has had unscheduled surgery today Posted Oct 17, 2008 11:54pm
Doug went to his appointment with Dr. Anne his ENT surgeon. His Choanal Atresia repair is excellent, however in the lower part of the nasal cavity he has had a swelling in both nasal passages that restricted his breathing. This is a common occurrence for CHARGE kids. Cathy had noticed that he would struggle to breath particularly early in the morning and at times when he was more active. At first it was believed that he had a cold. However after his Cardiologist Dr. Priato saw him this week she thought that Dr. Anne should move her appointment up, and look at Doug ASAP.
Doug underwent emergency surgery today in order to open his nasal passages.
Specifically, he had a Nasal Endoscopy & Nasal Pharyngeal Dilitation. Dr. Anne surgically opened his nasal cavities by working through his mouth up into the nostrils. She used a variety of techniques included angioplasties to widen the openings and installed stints (breathing tubes) through his nose and into his throat. The surgery took about two hours.
Dr. Anne is very pleased with the outcome and will check up on him tomorrow. He will have the stints in for two full weeks and then he will have follow-up surgery to remove them.
Doug was re-admitted to the PICU and is expected to remain in the Clinic until after his follow up surgery.
This is obviously a big disappointment and a serious set back for his progress and our goal to get him home. We now know that he will certainly be in the hospital through October and quite possibly through Thanksgiving. We may have to set our hopes on having him home for Christmas. I personally believe that he will be in the hospital for several more weeks. At the very least a month and quite possibly six weeks or more.
Dr. Anne will try to coordinate her follow-up surgery with the installation of his feeding port and quite possibly the repair of his cleft lip. This would be preferable and would cut back substantially on the amount of times Douglas would have to be sedated and go trough recovery. We shall see if this can be done.
Cathy and I continue to be grateful for everyone's support. We appreciate the prayers, gifts, kind words and deeds from everyone and especially hope that the prayers continue. Douglas continues to improve in many different ways, this is just a temporary if unexpected set back for him.
I am posting new pictures including a picture showing Doug’s newly redecorated nose. He looks like he was in a fight.
Jim

Bob loves the playground at the Re-Hab Hospital

Doug's week - it has been a rollercoaster
Posted Oct 16, 2008 4:53pm
Hi everyone, long time no post. Well, Doug has had a very eventful week. Monday was his cardiology appointment, Tuesday he had his vaccines and yesterday he had some problems with his feeding. I wasn't there but they told me that he vomited his feeding up and was a little stressed out. They are keeping an eye on him, but his lungs and heart are doing well, which is what we really need to worry about.
He has some congestion, so we are going to see the ENT tomorrow morning to make sure that his nasal passages are not blocked. The congestion is most likely what caused the vomiting. Keep him in your prayers to make sure that he has a good appointment.
Today he went to the Clinic to get an upper GI. They inserted some Barium into his tube to see his GI tract. It is completely normal. They are doing this because he will be getting a G-tube for his feedings. The oral feedings are not improving as quickly as we would like, so in order to get him home, we will be helping his feedings through a tube in his stomach. Once he is able to completely eat his food orally, it will be removed. Hopefully sooner than later.
Well, that's it for now. I'll keep you updated.
Cathy

Doug's cardioloy appointment
Posted Oct 14, 2008 7:22am
Doug's appointment went great. The doctor said that his heart was doing great. He did not enjoy all of the tests (x-ray, ekg, echo), but he calmed down afterward and took a very long nap. They decided to do his vaccines today instead of yesterday so he got a little bit of downtime from poking and prodding for a few hours.
Cathy

Monday, October 13th
Posted Oct 13, 2008 8:52am
Doug has his first cardiologist appointment today (post-surgery). We are hoping it will go well. It will be his first trip back to the main campus, I will be riding with him in the hospital van, what an adventure!
Doug is two months old today, which means shots, lots of them! After he gets poked and prodded by the cardiologist, he will be getting his vaccines. What a wonderful day for him!
I'll keep you informed about how he made it through the day later, I'm expecting giggles and smiles all day long (not even close).
Cathy

Our family meeting
Posted Oct 8, 2008 11:25pm
Well, we had our meeting with all of the therapists, a doctor, the social worker and the case worker today. They all went over what they have been doing (therapy sessions, methodone wean, etc.) The good news is that Doug is doing great in the medical aspect. His heart and breathing are doing great and his physical therapy is going well.
The $64,000 question we gave them was when do they think that he will be coming home. It looks like it will not be anytime within the two weeks. The feedings are improving, but they will not send him home until he is completely feeding from a bottle or we get a more permanent tube in his stomach (an option we are trying to avoid).
Being around the hospital environment for so long, when we hear two weeks, it's more like a month. We're frustrated that we can't bring him home yet, but we know that it is the best place he can be right now to improve his feeding and his quality of life.
Once again, thanks for all of your support. Say a little prayer to the angels to help Doug eat better, we know he talks to them when he is sleeping because he smiles and giggles when he is asleep.
Cathy

Doug at Rehab - the weekend
Posted Oct 6, 2008 6:59am
We had a relatively quiet weekend at the rehabilitation facility this weekend, well, except when Bobby and Jim visited on Saturday morning. Bobby had so much fun playing with all of the toys and had a blast outside. The facility has a playground that is in a courtyard that is completely enclosed by the building. There is swings, balls, cars and a giant jungle jim. He had a blast and got extremely dirty. I went to get my haircut when they came. When I was at the receptionist desk getting my badge after returning, I looked over her head and the first vision I saw was my over forty husband at the top of the jungle jim. Two seconds later he went down the slide, I wish I had a video camera. It would have gotten alot of hits on UTube.
This is the first week of more intensive therapy. Last week they did alot of evaluating and fit him in for sessions when they were available. We should have a better idea of how long he will have to be here after on Family meeting on Wednesday.
He does weigh about 8 pounds 3 ounces, which is almost a pound heavier than he was when he was born. Yeah!
That's it for now, we will keep you updated.
Thanks
Cathy

Doug at Rehab - the Saga continues
Posted Oct 1, 2008 7:18pm
Doug loves his new room at rehab. He has lots of new toys to play with including an awesome mobile over his bed. He stares at it as it spins around and around, I am definitely going to have to get one of these when he comes home, ours is boring compared to it.
The physical, speech and occupational therapists came and did evaluations of Doug today. They are going to write up a care plan that will give us an idea of when he will be able to come home (hopfully sooner rather than later). Jim thinks its hysterical that Doug has an occupational therapist even though he doesn't have a job. Since he's been born he's only cost us money, hee hee.
Everyone at the new hospital is very nice. The kids are all adorable and I want to stick them all in my pocket and take them home. They say the same thing about Doug yet they don't offer to change his poopy diaper. They must not like them that much! I'm finding my way around the place and can't wait to bring Bobby to play in the courtyard on the swings and playset. He will have a blast!
If you are interested in visiting, the hours are 8 to 8, just like the main campus. The hospital is located on MLK between Shaker and Buckeye, right by Benedictine. I'm there all day until five and Jim is there at night. If you want to come between 5 and 8, please let us know and we will make sure someone is there. My room phone number is 216-448-6336. I'm not allowed to use my cell phone in the hospital, so try us there first. Children are welcome if they are not sick and haven't been for the last three days.
Thanks again for all your support, it's been greatly appreciated.
Cathy

Doug Still at the Main Campus
Posted Sep 29, 2008 10:40pm
Doug was scheduled to be transferred to the Pediatric Rehabilitation Hospital Today. He was all ready to go, but a paperwork error, (no bodies fault) prevented the move. Cathy and I are quite disapointed. I was smart enough to have gone to work for most of the day, but poor Cathy waited there all day.Doug will be moved at 9am Tuesday.
Bob is now 2 years old. He had a party at Grandma Roth's house and got lots of presents. He has been acting like a two year old for several months so it is nice that the calendar caught up with him.

A new place for Doug
Posted Sep 28, 2008 5:22pm
Doug is expected to be transferred to the Children's rehab hospital on Monday the 29th. We toured the facility on Saturday and everyone seems really nice. The other kids there are adorable! Everyone at the Clinic main campus has been amazing, but I will be overjoyed to not have to drive there daily. The rehab facility is right by Benedictine (Jim's alma mater) on MLK. It was so cute driving there because Jim would show me the rapid stop he used to get off everyday and all the landmarks he used to pass going to school.
The main goal at the rehab will be to work on his feeding. He is making progress with his bottle feeds, but right now he takes most of his meals through his feeding tube. As Jim says, it's hard to believe that a child of ours would have trouble eating (since we are so svelte)!
We don't know how long he will be there, but we know this will help him and will work with the doctors and therapists to make his transition a quick and successful one.
Thanks again for all your support and prayers, God has been listening to you and Doug is making great progress.
Cathy
p.s. Bobby's 2nd birthday is tomorrow. He is such an angel! His new thing is to sing twinkle twinkle little star with me (using his own language). He will be really excited about the rehab facility, it has a giant courtyard with a swingset and tons of things to do.

Doug Continues to Improve
Posted Sep 26, 2008 1:19am
I just got back from the hospital and Douglas looks very good. He is being fed every three hours through his feading tube. While he is being fed Cathy or I hold him and give him a pacifier so he associates sucking with being fed and getting a full belly.
He has been having bottle feading sessions daily and is increasing his intake through the bottle.
The doctors have been discussing transferring Doug to the rehabilitation Hospital. We have yet to get confirmation on a day or time that this would occure. Once he is at the rehab hospital he will recieve intensive training on bottle feading and can then be discharged alltogether and sent home. Cathy and I hope this is soon.
Cathy has been spending the days at the hospital and comming home after five PM. I take Bob to the his sitter, go to work and then pick him up. We then have dinner and put Bob to bed. I then go the hospital and spend a few hours with Doug. After I come home, Cathy usually goes back and spends the night with Douglas. We think it is important that Bobby is kept to his ordinary routine and Douglas has one of us with him at night. Doug is in a lower level of care, so he doesn't get the attention he did in the PICU.
Hopefully we will be able to have Douglas home soon. Bob's routine will be ruined, and Doug will be subjected full time to Bob.
Douglas welcomed two very special guests the other day. He was visited by his cousins John Paul, and Angela. They were very excited to see Doug and are officially the youngest people to hold Doug and see him in person. John, and Angela have both been praying for Douglas with their classes at school. Their pictures are up in the gallery.
Jim

Plan for Doug
Posted Sep 23, 2008 12:45am
Cathy & I spoke with one of Doug's doctors today about his recovery plan. He estimates that Doug will be in the Children's Hospital for another week. If he continues to do well he will then be sent to a Re-habilitation Hospital.
He is presently being weened off the Methadone. He has been on pain medication, primarily Morphine for his entire life, He has become dependent on these drugs and must be slowly removed from these drugs to prevent him from having withdrawal symptoms.
Cathy has been staying at the hospital for the last couple nights so that Doug will not be alone. He has less attention being in a lower level of care, so until he settles in, she wants to be on hand if he has any prolems.
Doug looks very good, he is attentive and smiles, he will have his hearing test some time this week.
Jim

Douglas is out of the PICU
Posted Sep 20, 2008 7:06pm
We are thrilled to announce that Douglas has been moved out of the PICU and into a standard pediatric ward. He has exceeded the expectations of his doctors and may be coming home very soon.
He was transfered to Room 40-05 of The Children's Hospital at around 1pm today. The new room has a pod of 5 bedrooms, but he is alone for now. He is only hooked up to three IV units. He is still being fed through a tube, but will be receiving therapy to learn how to use a bottle.
If Douglas continues to make progress, he may be home as early as this week.
Jim