Surgery and Recovery

7-2 thru 7-25 Preoperative

7/2- Hello there. We have finally gotten a date for Dylan's open heart surgery. It will be July 26th at Children's Regional Hospital. We will keep everyone updated on his progress and promise to post pictures when we can.

7/25- We have confirmed with Children's that Dylan's heart surgery is scheduled for 7:30am although he will be admitted at 6:15 for anesthesia. The surgery itself will take about 4 to 5 hours and will require the use of a bypass machine. After surgery, he will be moved to the IICU and will remain ventilated for at least a day while he recovers. I will give you an update on his condition tomorrow afternoon.

Surgery

7/26

*7:30am - Dylan was admitted for surgery at 7:30 this morning. We will keep you updated on his progress. The surgery will take approximately 4 to 5 hours. We met with surgeon who has informed us that he does have pulmonary hypertension in the lungs which can cause some complications particularly when they are removing Dylan from the bypass machine or after the surgery we might be in ICU for a longer period of time.

*11:30am - Dylan's surgery is still going. We have been informed that he is now off the bypass machine. What this means is that they are checking the holes in the heart to see that they are patched. After they are done with that, then they will begin the process to complete the surgery. There is no word that the hypertension is causing problems.

*12:45pm - Dylan's surgery is completed and we have proof that miracles do happen. According to the surgeon, Dylan is doing fine. His surgery turned out to be quite complicated as the holes were more complex than they had thought. In fact, the surgeon stated that they were almost inoperable and that there could have been many problems. He is stable and moved from recovery to a room in IICU.

*4pm - Dylan will be oxygen dependent for the night and then we will see from there his progress.

Recovery

7/27

*10am - Dylan's night was pretty quiet as he was sedated pretty heavily and they didn't want him to move. Mom and Dad took the opportunity to catch up on sleep and we returned at 9am this morning. They are discussing extubating Dylan (letting him breathe on his own). He is a bit restless but they don't want to give him any further pain meds or they will be forced to keep him ventilated and extend his stay in ICU. We will keep you updated on his progress.

*6pm - Dylan was extubated from the breathing tube but then he was put back on after a couple of hours. He had irritated his air passage by moving around too much and so they re-intubated him and will keep him sedated throughout the night. They are giving steriods to help with the swelling and will try again tomorrow.

7/28

*10am - They have decided to keep Dylan sedated the whole day and on the ventilator. This is to keep him calm and to heal a little longer before they try to take out the breathing tube again. He has a runny nose so they are also keeping an eye on that. A quiet day for Dylan.

*8pm - Dylan was sedated all day and pretty calm. They will try to wean him from the medications starting tonight with the hopes he will wake in the morning. They will then try to let him breathe on his own then.

7/29

*10am - Dylan will remain sedated again today as they are still trying to get his swelling down before they allow him to breathe on his own. They are hoping to remove him from the ventilator tomorrow morning. A quiet day again.

7/30

*10am - Dylan was removed from the ventilating machine but is having some difficulty with his oxygen levels. They are trying another breathing device called a CPAP machine to see if that will help. If not, he will be re-intubated once again.

*8:00pm - Dylan has remained off the ventilating machine but is still receiving assistance with the CPAP (or as Kristy calls it, the nose-hose-torturing-device). He will remain on that for at least 24 hours and then we can see about moving out of the ICU. It seems that after all the precautions we took, Dylan got a cold in the hospital. This seems to be the cause of his respiratory distress.

*10pm - Kristy got to hold a conscious Dylan for a couple of hours. He woke up from his drug-induced sleep in a fit of pure madness and holding him was the only way to calm him without the use of more narcotics. If Kristy hadn't held him, he might have run for the door he was squirming so much. We are very happy to see him moving around again. They will give removing him from the CPAP a try, allowing him to breathe with the assistance of a cannula.

7/31

*8am - Dylan had a setback last night. Although his oxygen levels continue to improve, his right lung has partially collapsed. This was a surprise to everyone as Dylan seemed to be doing really well but the collapse was revealed in his last x-ray (at 4am). Therefore, Dylan will remain in ICU for a few more days on CPAP trying to re-inflate the lung and was sedated again this morning. They are concerned because of his cold. They do not want it to settle into his lungs (it is in his nose and throat). If it does move into the lungs, it has the potential to become pneumonia, particularly with the partial lung collapse.

*12pm - Dylan has been re-intubated...again. Both lungs have collapsed but before you panic, please know the doctors have assured us this is normal and the actions they are taking are just preventative. This is considered a small step back in progress. The intubation will re-inflate the lungs and remove any secretions that have formed. He will be intubated for 2-3 more days during which he will be sedated.

*6pm - Dylan is resting comfortably and will be intubated for the night. They actually have been suctioning out his lungs and found that they are getting alot. This is helpful because Dylan isn't really coughing so they'll continue this tonight and tomorrow. In other words, we are looking at a very quiet night.

8/1

*10am - Dylan is still ventilated and will remain so for the day. They would like him to continue to rest and then will see about extubation tomorrow or perhaps Wednesday. Respiratory therapists will also continue with suctioning out his lungs today in hopes that his chest films will be clearer for tomorrow. Dylan is still sedated so it will pretty quiet for Mom and Dad as well.

*3pm - Dylan's chest x-rays are looking better so they will continue with his intubation and respiratory therapy for tonight.

8/2

*10am - Dylan remained intubated for the night and we are waiting for x-ray results to find out how is lungs look today. If they look good, we might see him off the ventilator as early as this afternoon although doctors are still discussing waiting until tomorrow. We will know for sure later on this afternoon. Dylan has a new roommate. Her name is Amy who is 3 months old. Dylan truly is a ladies man....only been here a week and he is sharing a room with the ladies. Hmm.

*2pm - The x-ray and ultrasound looked promising and so they are lowering his oxygen levels throughout the day and will try to extubate him tomorrow morning if this goes well. Dylan is semi-concious today and is looking at Mom and Dad. He is also trying to pull his tubes out so his hands are covered with socks (big surprise). Our fabulous nurse (Dawn) is letting him stay awake for a little while but will give him sedatives later this afternoon.

8/3

*10am - Dylan will remain intubated for today. He developed a fever last night and so they started antibiotics for today to see if this will help. They think there is a low grade infection somewhere but they are not exactly sure of the location. Hopefully the antibiotics will fix this and then we can hope for extubation tomorrow.

*8pm - Dylan's fever is still around so they will be doing another x-ray at 4am to see what is going on. His last x-ray showed a bit of a spot in his right lung (a fuzzy space) which can indicate the beginning of pnuemonia so they are getting aggressive to stop the development of this. We will wait to see what the x-ray shows and pending the results, we will talk about his ventilation. Otherwise, Dylan remains asleep (I'm getting sick of the word sedated). Mom has been giving Dylan great ideas about what to dream about while Dad is in Bellingham today.

I should mention, that the indication of pneumonia is not a serious issue. Right now, it is just a hint of it but the doctors have assured me it is not something to panic over. All it means is maybe a little longer of a stay in ICU (oh, boy!) while that clears up. If or when they say to panic, I'll certainly let you know.

8/4

*10am - Dylan seems to be doing better and his x-ray showed no significant changes. They have decided to see how he will do off the ventilation and on the CPAP machine. We'll keep you updated on how this goes.

*3pm - Dylan is off the respirator and we get to hold him! So far, he is doing well breathing on his own. They will monitor him for the day but his breathing seems to be much better.

8/5

*10am - Dylan remained off the respirator last night and seems to be doing well. His carbon dioxide levels (for you nurses, the blood gas levels) were creeping up a little bit. This means they will be doing some respiratory therapy (which means they actually lightly tap Dylan to loosen any secretions in the lungs). Hopefully this will keep him off any oxygen assistance. We also got to hold him last night! Dylan is being weaned off the morphine and adavan (spelling?) so he is alert and quickly becoming the favorite of ICU. Our nurse, Dawn, was quick to say she loves holding him and he is very animated. A happy kid. He is still receiving antibiotics to help with the lung cheese.

*2pm - Dylan is doing really well and only needs a little bit of assistance breathing. Mom and Dad have been holding him all day. Mom (Kristy) also cried today because Dylan was VERY animated, cooing, talking, and taking things in his mouth. This is all new. He was also very energetic and as it turns out, quite a dancer. He has been moving around utilizing all his limbs and then talking about it! We will remain in ICU for a couple of more days while his lungs clear up then they will see about moving us to a regular room. In the meantime, we have specialists coming to work with Dylan to help him learn how to eat (Mom cried...again). He will most likely go home with some tube feeds (the nose hose) but this is just while he is adjusting to eating with his mouth. What a day! Mom is going to cry just writing this....again.

*10pm - Dylan settled down during the afternoon. Although there is a chance we may move out of the ICU tomorrow, it is most likely that we will be there through the weekend. They are just erring on being cautious with his breathing as he is still pretty congested. Also, his gag is returning a bit but we are working on that to see if we can prevent it before it becomes too much of a problem with his eating. Otherwise, a very good day.

8/6

*1pm - Dylan did well throughout the night but this morning became unresponsive and experienced difficulty breathing. Dylan is back on the CPAP machine. We are awaiting tests results (CT Scan, kidney function, blood, and liver function) to find out if there are other problems that we are unaware of. An echocardiogram will also be performed shortly to see that all is well with the heart.

*9:30pm - We have had some of the tests come back. Liver and kidney are doing their jobs. The CT Scan and echocardiogram are still processing (the echo hasn't happened yet but we will get the results immediately on that one). Dylan remained on the CPAP all day and slept pretty much the whole day through. When he did wake up, we were relieved. He woke up extremely agitated and screaming for food. The docs say this is a good sign.

8/7

*9pm - I apologize for writing so late....the computers have been busy all day with other parents. Dylan has bounced back! The doctors can't really explain what happened yesterday other than it might have been withdrawls from being on morphine for 11 days. Dylan woke up happy-go-lucky and was a cheery little boy who flirted with his nurse. He was removed from the CPAP machine and has been doing extremely well. All tests came back encouraging including the CT scan, his x-ray, and blood tests. His echocardiogram revealed a small whole in the patch they put in during surgery but the cardiologist has told us that will seal itself with scar tissue. Great day. If Dylan continues with doing so well, they are actually talking about moving us out of ICU! It is like yesterday never happened. Very, very good day.

8/8

*1pm - We are being moved out of ICU to a regular floor. Dylan is doing great off the oxygen and seems to be tolerating things pretty well. There was a problem that did happen last night and again this morning regarding Dylan's attentiveness. As what happened two days ago, Dylan became unresponsive. They are not sure what is causing these episodes but neurology is coming to see Dylan this afternoon to rule anything out.

*3pm - We are officially out of ICU!! Yeah! Everything is looking good and we are just waiting on a couple of days for medication purposes as well as an exam by neurology. We will have those results tomorrow afternoon. The test is called an EEG. But, if thing go well...which I'm hoping I'm not jinxing it...we might be able to go home in a couple of days. Of course, Dylan will be coming here as an outpatient for the next two weeks if that happens but who cares! Our bed calls our name! The plastic mattresses here at the hospital make our bed heavenly.

Dylan will be under strict restrictions if that happens (going home) and we will be going to the doctors offices quite a bit in the next few weeks. He still needs to learn how to eat orally but they feel he can do that as an outpatient at St. Joes. We will also be visiting a Occupational Therapist, a Speech Therapist, our awesome pediatrician, and of course, visiting Children's once a week for follow-up. Phew.

8/9

*5pm - Dylan is eating like a big boy! First try, and bam! He's breastfeeding. Kristy cried. Dylan will be going home with a feeding tube but most of his feeds are now happening orally. His EEG came back normal as well as all of his tests.

We will be staying all day tomorrow but they are talking about discharging us on Thursday morning. They want to keep us another day for medicine purposes (his antibiotics are giving him horrific gas!). We do ask that you give us some space on Thursday and Friday so we can have some family time (and do the laundry). We will be traveling to Children's for some follow-ups the next couple of weeks (also to visit our new friends Amy & Max) as well as trips to the pediatrician, etc.

8/10

*2pm - We are outta here! All we are waiting on is one test result (which should be fine) and some meds. Then we have packed our bags and going home!

Now we are an outpatient...nice ring to it, huh? We have a few appointments next week but I'll take the commute. No more cafeteria food, plastic beds, beeps and buzzers....

We appreciate the prayers, messages, and support. We can't wait for you to meet the newly improved, highly energized (and a bit crabby at the moment) Dylan.

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Again, thank you so very much for your prayers and support.