Douglas Continues to Get Better Everyday!
Posted Sep 19, 2008 1:17am
Cathy said that all of Doug's doctors commented on how well he looked. They stress that he has exceeded their expectations and is looking real good.
I just got back from the hospital myself a few minutes ago. Doug is awake and attentive. He has been smiling, and he looks better than I have seen him. He is an ounce heavier than he was at birth, and will soon be eating on his own.
They have decided to keep him in the PICU through the weekend. If he continues to do well and improve they will put him in a step down unit. Doug will then be able to be discharged after a few days in the pediatric ward. As you can immagine, Cathy and I are thrilled to hear that Doug may soon be able to come home. He may be home as eary as Wednesday or Thursday of next week.
We can not express how greatful we are to everyone who has been keeping Douglas in their thoughts and prayers. We know that it is a fact that prayer works. The outlook for Douglas was very bad. We prayed for him and asked others to pray for him as well. We know that these prayers helped tremendously. We want to thank everyone for their prayers and hope that you will all continue to pray for Douglas. Douglas isn't out of the woods yet, but he has made great strides. We know that even when he gets home he will have some special needs. We believe that with God's help we will be able to be the kind of parents that a child like Douglas needs.
Jim
Goofy Picture of Bob
Posted Sep 17, 2008 7:07am
We got results on his nutrition levels yesterday and they are great. The week spent fattening him up was extremely successful. This will help with his breathing because he has more strength. When he gets upset (crying, etc.), his stats don't drop as they did before. We are cautiously optimistic and are taking it day by day. Once again, thanks for all of your prayers and support. I don't know how we would have done this without you.
Thanks
Cathy
p.s. Our mechanics son is in the ICU after being assulted (my spelling sucks) at a bar on Saturday. His skull was cracked and they are monitoring the swelling on his brain. If you can say a little prayer for him as well, it would be appreciated.
Posted Sep 14, 2008 9:45pm
Doug was removed from his ventilator late last night or early this morning. He is now on a C-Pap machine. This is the type of unit used by people who have sleep apnea.
He looks real good and we hope that he is able to remain off the machine for good.
Posted Sep 9, 2008 9:13am
Hello everyone,
I wanted to thank you for all of the wonderful and supportive messages that you post on the website. It really boosts our spirits to see that you are thinking about us and praying for us.
Doug is doing well, he is stable and his stats are great. He will be on the ventilator for a few days while they fatten him up with high calorie formula so he can build up his strength. The reason that he had this current setback was due to his lack of nutrition/strength, so we are happy that they are bulking him up so he can get stronger.
Once again, thanks for your thoughts and prayers.
Cathy
Posted Sep 8, 2008 12:48am
Doug had a good day today. Cathy was there during the day and she said he slept most of the time. I just got back from the hospital and he was awake the entire time I was there.
He looks good. The doctor said that they would probably be keeping him intubated for a few days. They want to get him a little larger and stronger before they take him off the ventilator.
Douglas has lost about a pound since he was born. He was born 25 days ago and around seven of those days he was not fed at all. He was required to be off feading the day before and the day after all three of his surgeries. This is about 30% of the time he has been alive. The doctors and I feeal it would be advantages for him to be a little larger before he is removed from the ventilator again.
Jim
Posted Sep 7, 2008 1:30am
Douglas had been breathing on his own for a couple days, and then sometime Thursday evening, his left lung collapsed. This was an unexpected occurance. The doctors decided to treat this with positive presure O2. They attempted this for about 1 1/2 days. Then late this afternoon Doug had serious difficulty breathing and the Doctors were forced to re-insert his breathing tube.
They plan to keep him intubated until some time Monday and then atempt to remove him from the machine and put him on a C-Pap. This will force possitive presure into his lungs. This possitive presure will help to keep his left lung open.
If they are unable to keep his lung from collapseing they may decide that a tracheostomy is nescessary. This is very undesireable. I would be hard pressed to allow them to do this proceedure to Douglas unless it is truely nescessary. This would require the surgical insertion of a breathing tube through his neck and into his windpipe. This could lead to several problems and set back his progress.
I would ask that if you could, please say an extra prayer for Douglas, We need him to be able to breath without the ventilator.
Jim
Doug update 9-4-08
Posted Sep 4, 2008 8:31am
Doug had a good day yesterday. He did not have to be retubed, which is fantastic. We are hoping he passes his swallowing study this morning. If he passes, this will put us a step closer to bringing him home. This will mean no feeding tube and we will be able to start feeding him with a bottle. He is still in the PICU and the darling of all the nurses. They love to come in and dress him up in the hats and booties and shirts that we brought in a few days ago.
Thank you for all your thoughts and prayers.
Cathy
Posted Sep 3, 2008 2:07am
Douglas had follow-up surgery on his nasal passages today. He then had his breathing tube removed. He has been breathing unassisted all day.
Cathy and I were able to hold him for the first time today. We are both thrilled and much relieved. Cathy didn't want to let him go, and has decided to spend the night with him in his room.
This is one more step towards getting Doug home. We still have to find out how well he can swallow. Many of the children with his type of problems also have swallowing dificulties.
I have a hard time believing that Doug is only three weeks old on Wednesday. He has been through so many surgeries and proceedures, in such a short period of time.
I have posted some new photos of Doug being held for the very first time.
Jim
Posted Sep 1, 2008 7:55pm
Douglas had his arterial line removed yesterday, This is another step closer to getting him home. He will be having his third surgery Tuesday at 7:30 AM. This is a follow up surgery for his nasal passages.
After his surgery he may be extubated, but we are not sure.
Cathy and I wanted to do something special for Bobby since we have not been able to spend much time with him lately. We took him to the Memphis Kiddie Park for a morning of fun riding the rides. He especially liked the roller coaster.
I posted a couple pictures of Bob at the park.
Jim
Update on Doug
Posted Aug 31, 2008 6:40am
Doug is having a good weekend. His nasal passages are clear and he completely off the oxygen (ventilator is pumping air that is the same as air in normal atmosphere). They are keeping the tubes in until Tuesday because he will be going back into surgery/procedure for the ENT to see how his nasal passages are repairing themselves (scarring, etc.). He would have to be retubed for that, so it it easier on him to keep the vent on until after the procedure.
Bobby and Jim went to the McDonalds Playland for dinner yesterday and had a wonderful time. Today we are going to my Nephew David's birthday party and I'm sure he will have fun playing with his cousins.
Keep us in your prayers.
Cathy
Re-Intubated last night
Posted Aug 29, 2008 10:58am
Douglas had an episode last night. He was having difficulty breathing shortly after midnight. The doctors called us early this morning to let us know that they had to re-insert his breathing tube.
This is a set back that we were hoping to avoid. It is certainly disapointing,however, we are still quite positive about his progress. The doctors warned us that the first year would be like a rollercoaster of emotions. He will have victories and defeats, but they are very optomistic and happy with his progress.
We are still hoping to get him off the intubation, medications and get him home.
Jim
Doug is breathing on his own
Posted Aug 29, 2008 12:19am
Dr. Annen, Doug's ear, nose, & throat surgeon, is very pleased with his progress. She and her team all came to see Douglas today after he was extubated. They all agreed he was even cuter without the face mask. She said she would remove his nose trumpets tomorrow to see how well he can do without them. She will then take him back for another
surgery on Tuesday to remove any scar tissue that has reformed over his passages.
Douglas was extubated late this afternoon. His breathing is very good. He has been doing a lot of crying, but still makes allmost no noise due to having his vocal coards irritated by the breathing tube.
He is looking really good despite the slight pig snout effect of the nose trumpets. We are still unnable to hold him due the fact that he still has a femeral line. He will slowly be weaned off his multiple medications.
I have posted some new pictures of Douglas without the respirator.
Jim
Tomorrow is a big day for Doug!
Posted Aug 27, 2008 10:46pm
First of all, my husband gets his musical instruments mixed up, Doug has nasal trumpets, not flutes. Either way he is as cute as a bug even though his daddy says he has kind of a pig nose.
Doug is going to be removed from the ventilator tomorrow. We are very excited because we will finally be able to hold him. I told the nurses that I probably won't put him down for hours so they need to be prepared. Jim will fight me for him, but I know his soft spots and can take him down pretty easily.
All the nurses keep saying how good Doug looks. He's beginning to fill out more now that he is on breast milk (we call it mommy medicine) so he will be fighting weight when he comes home and has to cohabitate with Bobby. It will be an adjustment for all of us.
We'll keep you updated (with pictures) tomorrow.
Cathy
Douglas had another surgery today
Posted Aug 26, 2008 11:03pm
Douglas had his 2nd surgery today. He had his choanal atresia repaired today. This is a boney growth that blocks off the nasal cavities. He had a bilateral choanal atresia. Both nasal passages were completely blocked. His surrgeon said that the growths were very thick bones. She spent more than two hours in surgery. She installed two nasal flutes in his nose to keep his nasal passages open while it heals. She will remove them on Friday and do another surgery next Tuesday.
Douglas has been attempting to remove his breathing tube today, he slept much of the day and of course has been sleeping since he had jhis surgery.
We are very excited about having him extubated as soon as tommarow. We will then be able to hold him.
Doug's new girlfriend Kathleen came to visit Douglas on her lunch hour. She and Dave stopped by yesturday, but Douglas was out and about with his personnal onterage at the MRI lab.
Dr. Mumtaz, Doug's Heart Surgeon stopped in while Doug was still in Surgery. He is a great guy and wanted to see how he was doing. He said that he got word from Dr. Moran, his geneticist, that his genetic profile had no duplications and no deletions. This is excellant news. He also said he heard that his MRI showed that his brain looked normal. Also good news. He is now concerned that Doug is able to swallow. Swallowing is a problem for some of these children.
Check out the new pictures of his new nasal flutes. They give him a bit of a pig nose, but they are a step to his getting better and getting home.
Jim
Doug's Busy Weekend
Posted Aug 24, 2008 11:51pm
Douglas spent many hours up over the weekend. He has been trying to pull out his tubes and lines. The nurses have been strategically placing his Teddy bears in order to keep his hands away from them.
Doug will have another surgery on Tuesday around 11:00AM. We are nervous but not nearly as nervous as we were for the heart surgery. He is, after all, more than twice as old as he was for his first surgery.
Douglas on Friday
Posted Aug 23, 2008 12:29am
Douglas had another good day. He gets better and better all the time. He was awake for several hours today. He was trying to pull out his breathing tube and moving all over the place.
Douglas will have an MRI on Monday. Dr. Mumtaz, Cathy and I decided that he should have this test prior to his nasal repair. This way he will not have to be intubated and re-admitted to the hospital 2 or 3 months from now in order to have an MRI. The Doctors on his neurological team want to look at his brain developenment, and they must do this before he has shunts intalled in his nasal passages. The MRI may or may not give them answers into his situation.
Doug will undergo another surgery on Tuesday at about 11:00AM to fix the obstruction in his nasal passages. Cathy and I met his ENT surgeon today and are excitted at the prospect of having his breathing tube removed. Of course this will allow him to express his fealings audibly by crying. at this point he has been the best behaved and quitest baby in the ward.
Cathy and I continue to spend a majority of our time at the hospital with Douglas. We expect him to be there for several more weeks. Douglas continues to be a patiet in the Pediatric Intensive Care Unit, and will be in this ward through his next surgical recovery. We hope to be able to bring him home soon.
Jim
Doug is doing great
Posted Aug 21, 2008 11:08pm
Hi everyone,
Doug had a great day today. He was moving his arms and legs around and was awake and alert and visiting with us (mommy and daddy) today.
We found out today that he will be having his nose surgery on Tuesday. The ENT will be opening up his nasal passages so he will be able to be removed from the ventilator and breath on his own. This is the best news for us because then we will be able to hold him, squeeze him and never put him down. He will definitely be the most spoiled baby in Cleveland.
They may repair his cleft lip as well during the surgery (the ENT mentioned it), but we aren't sure about that. We haven't met with the plastic surgeon yet so we don't know when that may be done. We also found out that he is probably going to have an MRI either tomorrow or Monday, it depends when it can get scheduled.
His big brother came to visit again with Grandma and Grandpa Roth and his Aunt Kathy Smith. We think Bobby will have a HUGE adjustment when Doug finally comes home. Right now he is enjoying spending time with his relatives while mommy and daddy are at the hospital.
That's about it for now, no pictures again. Jim had to run to Lowes and the drugstore for me so he doesn't have time to upload.
Cathy
Doug is looking better each day!
Posted Aug 20, 2008 9:01pm
Hello everyone,
Jim is putting Bobby in bed, so I am doing the update of Doug's condition today.
He had his chest tube removed from his heart surgery on Monday as well as his catheter. Every line that is removed is one step closer to him getting better.
He also had a cat-scan today to take pictures of his nose as well as his brain. We have not heard any results from that, but we expect to hear from the doctors tomorrow.
It looks like he will be having his next surgery some time next week to open his nasal passages. This will allow him to finally be removed from the ventilator and breath on his own (babies only breath through their nose).
Aunt Patti came to visit today and brought some fancy hats for Doug to wear as well as a Thomas the Train bath toy for Bobby. She is rating big favorite aunt points from him. Jim will upload her picture tomorrow.
That's about it for now, we will update you as soon as we have any other news.
Thanks
Cathy
Doug's Surgery
Posted Aug 18, 2008 8:02pm
Douglas had surgery to correct his coarctation of his aorta. Dr. Mumtaz said that the surgery went well, He said we now have to see if the aorta and left ventrical grow with the rest of his body, but he said he is very pleased and relieved that the surgery went well.
Cathy and I were able to see him after 2PM. We are exhausted both emotionally and physically. As you can immagine we haven't had much sleep and now feal for the first time in a number of days that we can sleep without worrying about Doug's immediate future.
He looks very good and we are cautiously optomistic about his prospects. He is still facing a couple weeks of recovery followed by another surgery to correct his nasal blockage,cleft and possibly a couple small holes in his heart. But these would all be in the future.
Once again we want to thank everyone for all they have done for us, and all the prayers. We greatly appreciate it.
Doug's Surgery
Posted Aug 18, 2008 7:49am
Doug will be in surgery today starting around 8AM . They expect that it will last 4-5 hours. Doug will have his coarctation of the aorta repaired.
Doug remains stable
Posted Aug 16, 2008 11:35pm
Douglas is doing fine, he is in stable condition and even woke up for a while this afternoon. He has a new line in his thigh and in his arm and is ready for surgery on Monday.
His big brother Bobby is back home with his dad and will be going to the hospital to pick up his mom and bring her home. YEAH!!!
While at the hospital he is planning on meeting his new brother, I am not sure, but I think he is excited.
Cathy is doing great and recoverring well from the C-Section. She is looking forward to sleeping in her own bed.
We spoke with Dr. Mumtaz's assistant and she explained that his operation would take between 4-5 Hours. They are going to repair the coarctation of his aorta. They plan on starting surgery at 8AM and will keep us updated on the progress after 2 hours and then every hour there after.
Any prayers for the success of the proceedure would be greatly appreciated.
Douglas's status
Posted Aug 15, 2008 11:58pm
Dr. Lorber, Dr. Priato, Dr. Mumtaz and the other members of Douglas's Heart team have determined that the best course of action at this time is NOT a single ventrical solution. HE WILL NOT NEED A NORWOOD PROCEDURE NOW AND, HOPEFULLY, NEVER NEED ONE. This is excellant news! This reduces the amount of heart surgeries he must undergo and increases his chance of survival significantly.
Although Douglas has a smallish left ventrical and some problems with the valves in the left ventrical, it looks salvageable.
Douglas is now scheduled for surgery on Monday morning. Dr. Mumtaz will be fixing the coarctation of the aorta. Although not nearly as risky as the single ventrical solution, this is still very delicate surgery on what amounts to an infant of only five days of age.
It has also been established that Douglas has an obstruction in his nasal cavity that prevents him from breathing through his nose. Since infants allmost exclusively breath through the nose, he will remain intubated and on a ventalator until this airway can be oppened by surgery after he has sufficiantly recoverred from his heart operation. He more than likely also has significant difficulty or the inability to swallow. This would be an explaination for the excessive amniotic fluid that Cathy had during pregnancy.
The Geneticist that is working on Douglas is starting to believe that he may have a specific genetic disorder. She has orderred testing and the results may confirm her suspicians, this testing will take up to two weeks to be completed.
Cathy and I want to thank everyone who has taken an interest and concern in Douglas, we have received numerous visits, E-mails and calls expressing concern and an outporing of love and prayers. We feel very blessed to have such terrific family, friends, co-workers and aquantances that have gone out of their way to express their concern and have taken the time to include Douglas and us in their prayers. We wish to thank each and everyone of you for all the help and good tidings you have shown us.
Jim11:50PM 8-15-08
Douglas Birth info
Posted Aug 14, 2008 2:33am
Douglas Charles Roth born 10:10 AM Wednesday August 13th 2008via scheduled ceserean section at the Cleveland Clinic.
7lbs. 4ozs. 19" long
He has a cleft lip but intact pallet. And is devilishlyhandsome.
He also has a heart defect. The doctors are assessing thissituation and will be comming up with a plan of action in the nexrcouple days. Surgery to help correct or at least minnimalize theeffects of the defect may be nescessary within the week.
Douglas Charles Roth Born Today
Posted Aug 14, 2008 1:55am
Douglas Charles Roth
Born 8/13/08 10:10 AM
7#'s 4oz.
19" long
Doug has a cleft lip but thankfully has no cleft pallet.
He also has a heart defect and will more than likely requiresurgery within the next week.
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