There wasn't much to say today, so I want to talk about tomorrow. I plan to post some pictures of Andrew tomorrow, and I wanted to give everyone a heads-up....the pictures are from after his breathing tube was removed. He was still very much alive at that point, but I know it may be too soon for some of you to even think about the end, and these pictures may stir up those thoughts. Personally, I think he looks beautiful and peaceful, and I know from being there that he was completely comfortable. He was on my lap the entire time. His face was a little red from the tape and his cheeks looked even bigger than normal; there was no tape to keep them under control. His upper lip is completely visible, and looks just like mine.
Anyway, the point is, don't tune in tomorrow if you don't want to see these pictures. Wait a couple of days and I'm sure there will be something more innocuous on the blog's front page.
Nov 26, 2007
Weekend
D and I had a nice weekend, and it helped get me ready to go back to work tomorrow morning. On Saturday, D and her family upgraded the backyard with a new set of sprinklers and a beautiful new path. There's some remaining brickwork and planting yet to be done, but the completed portion is quite an improvement. I'll post some pictures in a few days. Today D and I took Willow to dog beach, where we've been only once in the last six months. Willow got to run around in the sand and get some exercise; she also met fifteen or twenty dogs along the way. Some pizza and a recorded Chargers game ended the weekend nicely.
Nov 25, 2007
Medical Professionals
I know I've talked about Andrew's nurses before, but I really can't overstate their importance. Having the right nurse sometimes meant the difference between a good night's sleep and a night filled with anxiety; fortunately, he had lots of good nurses. First and foremost were his "primaries," nurses that had Andrew whenever they were working. Having primaries enabled Andrew (and us) to get consistent care and support from someone that knew him well. Through his five months, they spent as much (or more) time with him than we did, and came to understand his likes, dislikes, and idiosyncrasies. They made cute little signs listing all of Andrew's favorite things, and posted them in his room for any nurses that didn't know him as well. They were just as protective of him as we were, and we really came to think of them as family. When the time came for us to let Andrew go, they were both there to make sure everything went exactly right. Now, a week later, we miss them as well.
I have kept this blog name-free, except for Andrew's, and I won't change that now to list every nurse that touched our lives in the last five months. Fortunately, I don't need to....every day there are new NICU babies that get to experience their care firsthand. I would, however, like to mention just a few of his non-primaries by deed, if not by name:
We got to know each of the neonatologists and really learned about their different styles of care. Their quirks were endearing, their dedication was apparent, and their actions kept Andrew going no matter what obstacles appeared in his path. They endured our endless questions, they always collaborated to come up with the absolute best course of action, and they kept us well-informed throughout the process. They also gave us their honest opinions about Andrew's progress and prognosis; these were sometimes hard to hear, but we appreciate their candor.
The respiratory therapists gave Andrew breathing treatments, kept his tube clear of condensed water, and generally made sure he continued to breathe. They used whatever technology they had to in order to make it work, including several different ventilators, custom tubing, nitric oxide rigs, helium tanks, and hand-breath bags. Since many of his problems were lung related, he got extra attention, which we really appreciated.
Aside from the nurses, doctors, and RTs, our social worker was particularly wonderful, and really helped us navigate the NICU experience. She set up family conferences, helped us with visitation issues, and was generally available to talk or provide comfort at any time. She helped us find our way around in the early days, supported us through a long five months, and made everything as easy as possible on the way out.
As you can tell, it takes a lot to keep a NICU going, but it's a well-oiled machine. In the end, I am not exaggerating when I say that the doctors, nurses, and other staff at San Diego Childrens Hospital are heroes. They saved Andrew's life many, many times, and allowed us to get to know him and experience our son's beauty and personality. They also save other babies every day, and provide that same wonderful opportunity to families all over southern California. It was plain that they loved Andrew and that he touched their lives just as they touched ours. We will forever be grateful.
I have kept this blog name-free, except for Andrew's, and I won't change that now to list every nurse that touched our lives in the last five months. Fortunately, I don't need to....every day there are new NICU babies that get to experience their care firsthand. I would, however, like to mention just a few of his non-primaries by deed, if not by name:
- J was at our hospital when Andrew was born, and stabilized him until he could be transported to Childrens. She was always there to listen to our concerns and provide a comforting hug.
- J is a 30-year veteran that had Andrew at every stage of his progress...on ECMO, on hi-fi, on conventional ventilation, and extubated. Her kindness and experience really helped us through some hard times, and she was particularly attentive to whether D had been able to hold him recently.
- K was a night nurse that gave Andrew a bath during almost every shift she worked. That simple act of cleaning him up, making him smell like a baby (with a touch of lavender), and sharing any and all Andrew-related information over the phone really made us comfortable with his care and appreciative of her extra effort.
- R constantly told me how beautiful Andrew was (though they were all jealous of his eyelashes). Even at his puffiest, while sedated and recovering from surgery, she saw the cuteness shining through, and I loved when she pointed it out.
- S is a night nurse was there several times when we went in after hours; he quickly figured out just what Andrew liked, and was always willing to get him in the right position, with the right oxygen levels, so that he was comfortable and happy.
- E often works with preemies and said that her favorite part of the job was holding the babies before they get to go home. The nurses never got to hold Andrew for a long period of time, but her sweetness and kind heart came through nonetheless.
- One veteran nurse, N, bought Andrew a pair of socks with little duckies on them and called him her boyfriend.
- One respiratory therapist, E, would sing to Andrew as she worked. On Monday when all the nurses were coming by to say goodbye to him, she came and sang to him one last time. She has a beautiful voice, and it felt like a wonderful tribute to him and to us that she would share her song with us.
- C is a respiratory therapist that was always trying to look ahead to making Andrew's next extubation successful. She came by to check on him often, and was very supportive of him (and us).
- L asked me (and my mom) about my grandma whenever she saw us; when Yia-Yia passed away, she was very kind.
- M got her hands on several CDs of soothing piano music, and offered to put it on his mp3 player to help him relax.
- J managed to remain cheerful even on the most frustrating of days. Though we were too disappointed with Andrew's progress to fully appreciate it at the time, her optimism brought out the good in the situation, however tiny.
We got to know each of the neonatologists and really learned about their different styles of care. Their quirks were endearing, their dedication was apparent, and their actions kept Andrew going no matter what obstacles appeared in his path. They endured our endless questions, they always collaborated to come up with the absolute best course of action, and they kept us well-informed throughout the process. They also gave us their honest opinions about Andrew's progress and prognosis; these were sometimes hard to hear, but we appreciate their candor.
The respiratory therapists gave Andrew breathing treatments, kept his tube clear of condensed water, and generally made sure he continued to breathe. They used whatever technology they had to in order to make it work, including several different ventilators, custom tubing, nitric oxide rigs, helium tanks, and hand-breath bags. Since many of his problems were lung related, he got extra attention, which we really appreciated.
Aside from the nurses, doctors, and RTs, our social worker was particularly wonderful, and really helped us navigate the NICU experience. She set up family conferences, helped us with visitation issues, and was generally available to talk or provide comfort at any time. She helped us find our way around in the early days, supported us through a long five months, and made everything as easy as possible on the way out.
As you can tell, it takes a lot to keep a NICU going, but it's a well-oiled machine. In the end, I am not exaggerating when I say that the doctors, nurses, and other staff at San Diego Childrens Hospital are heroes. They saved Andrew's life many, many times, and allowed us to get to know him and experience our son's beauty and personality. They also save other babies every day, and provide that same wonderful opportunity to families all over southern California. It was plain that they loved Andrew and that he touched their lives just as they touched ours. We will forever be grateful.
Nov 24, 2007
Awkward Moments
I stopped by the grocery store to get some lunch stuff today. As I was checking out, the register printed a coupon. Generally the cashier would put it together with my receipt and hand it to me on the way out (or throw it in a bag); instead, she handed it to me and said, "Can you use this?" I took it and looked at it.....infant formula. I have no idea why the Ralphs computer associated this with the lettuce, tomato, and bread that I was purchasing, but it was a bit of a shock.
I shook my head and said, "No." She followed up with salt in the wound. "No more babies?" Stunned again, I gave her another shake of the head. I realize the question was completely innocuous, and that she probably assumed my kid(s) had grown past the infant stage and wouldn't require formula; it was still surprising.
I'm sure these things will have less emotional impact after some more time has passed.
I shook my head and said, "No." She followed up with salt in the wound. "No more babies?" Stunned again, I gave her another shake of the head. I realize the question was completely innocuous, and that she probably assumed my kid(s) had grown past the infant stage and wouldn't require formula; it was still surprising.
I'm sure these things will have less emotional impact after some more time has passed.
Time Flies
During Andrew's stay in the NICU, every day seemed like the longest day of our lives. Between a full day of work, constant calls to the nurses, an afternoon visit, driving to/from the hospital, pumping for milk, and continual anxiety about his status, time seemed to stretch. It definitely felt like a long five months.
Now that it's over, however, the experience seems to be compressed in my memory. While people were here for Thanksgiving, I found myself telling stories or referring to events that took place "a month or two ago." When I went back and thought harder about those particular events, I realized that they all took place before Andrew was born, without exception. It's as if the entire five months has condensed into a month in my mind. I suppose this phenomenon came about because our normal lives were on pause while dealing with this ordeal; it's as if someone just hit the "Play" button again.
I don't know how this will feel as we move forward. One one hand, I feel like we've lost time and need to catch up with our lives. On the other, I wouldn't give up the memory of a single day spent with Andrew. I worry about what would have happened if he had made it and we had gone through the entire process of getting out of the hospital and dealing with longer-term issues; I fear that we would've lost years of our lives, and lost some of ourselves in the process. As it is, I feel like we got to spend some wonderful time with Andrew, but didn't lose our personalities in the process. Our lives have been enriched, rather than devastated.
Nov 23, 2007
Helping Out
I hope everyone had a wonderful Thanksgiving. Ours was a very nice 7-person dinner at home....great food and great company. I'm guessing there won't be much blog reading on turkey day, or even the day after, so I'll keep this short.
I had a call from the organ donation group earlier this week, during which I answered a long series of questions about Andrew's history in order to determine his candidacy for donation. The set of questions is mandated by law and they can't assume anything; they have to ask each and every question and get a verbal response, which is then recorded for legal reasons. The call included questions that obviously applied (any recent surgeries, recent transfusions, etc.), but also included some off-the-wall questions for a five-month old that's been confined to a hospital (sex, recreational drugs, visits to Africa, mad cow disease, etc). It may have been sad if the questions weren't so outlandish...fortunately I was able to find the humor in the situation. I haven't found out whether he was considered a valid donor, and I don't know if we'll ever know what tissues went where. Our hope is that his heart valves especially are used to help babies with major heart defects. In our five months in the NICU, we saw many babies with their chests open after cardiac surgery. If one of those babies could benefit from a valve transplant, I feel like Andrew will have made a difference in yet another life.
I'm also looking into options for milk donation. We still have a freezer full of bottles, and we'd love to be able to help someone rather than just discarding them all. There seem to be several options, ranging from global aid programs to casual email arrangements. One option is the International Breast Milk Project, which sends 25% of all the milk collected to Africa for children whose mothers have HIV/AIDS. The rest of the milk stays in the US and is processed into milk fortifier, which is then used in NICUs across the country. This program requires a blood test, a DNA test, and boxing/shipping all the milk to the program via FedEx. Another option is donation to a Milk Bank. This also requires a blood test and milk transport, and the nearest location is in San Jose. The milk all goes to help parents of children with lactose issues, in NICUs and across the country, but the testing/packing/shipping process seems a bit more strenuous; I'm trying to find an option with minimal difficulty for D, as she's been through enough. I've also found people offering to set up milk donors with those who need it via email. Though there would certainly be less oversight and bureaucratic red tape, the concept is a little creepy and I don't think I want something quite that unofficial.
That's it for now....Happy Thanksgiving.
Nov 22, 2007
Mommy and Me
Today was another pretty relaxing day, focused mainly on preparing for Thanksgiving and getting Andrew's arrangements squared away with the mortuary. I thought I was okay while signing the paperwork, until I found myself showing the mortician pictures of Andrew on my iPod Touch. I managed to get through it.
We're thinking about taking a vacation to get away and decompress; we'll see if I can take more time off work, as I've already relied too heavily on the rest of my team during the last five months.
Nov 20, 2007
Keeping His Memory Alive
With an abrupt ending to such a long ordeal, I know that it will be difficult for everyone to obtain their own form of closure, whatever that may entail. We certainly miss him already, and wouldn't want anyone to have to quit Andrew cold-turkey. To that end, I'll keep posting as long as people keep reading. For a while, it will be 100% Andrew....I still have thousands of pictures, hundreds of videos, and plenty of stories that haven't made it to the blog. That will blend into updates about D and me. After that, who knows?
Today we tried to relax and unwind as much as possible. We ran a couple of errands, cleaned the house a bit, and worked on some keepsakes (like scanning the prints above). We talked a lot about Andrew, about the future, and about our feelings. While there were intermittent bouts of tears (I'm sure the other customers at Islands thought we were crazy), we are also relieved. We no longer have to worry about him...about bad blood gases, CT scans, and upset "episodes." It's strange not to call and check on his progress every few hours, and unfathomable to go without a hospital visit. I have been at Children's Hospital every day for the last 157 days....the freedom to stay home is sad and refreshing at the same time.
Today we tried to relax and unwind as much as possible. We ran a couple of errands, cleaned the house a bit, and worked on some keepsakes (like scanning the prints above). We talked a lot about Andrew, about the future, and about our feelings. While there were intermittent bouts of tears (I'm sure the other customers at Islands thought we were crazy), we are also relieved. We no longer have to worry about him...about bad blood gases, CT scans, and upset "episodes." It's strange not to call and check on his progress every few hours, and unfathomable to go without a hospital visit. I have been at Children's Hospital every day for the last 157 days....the freedom to stay home is sad and refreshing at the same time.
Nov 19, 2007
Closure
We went in to the NICU this morning, spent some quality time with Andrew, and spoke with the doctors one last time. We discussed his CT results and his general prognosis, and we made sure everyone was on the same page....we and all of the doctors were in complete agreement that he had a minute chance of long-term survival, especially in a manner free from severe developmental deficits. We discussed how the day would progress, then spent some more time with Andrew. D held him, we took some more pictures, and we got another set of footprints on a keepsake ceramic tile. All of Andrew's favorite nurses happened to be working, so they stopped by his room and said their goodbyes throughout the day; they will really miss him, and it was a wonderful reminder of how much Andrew has touched the lives of everyone around him.
After Andrew fell asleep, they started a morphine drip to keep him comfortable; he's such a bruiser that they had to turn it up a few times before he even felt it. We sat next to his bed and held his hands until he was sleeping so soundly that he wasn't taking extra breaths above the ones the ventilator was giving him. We then moved him to my lap, added another sedative to guarantee complete comfort, and removed his ventilator tube. It was the first we've seen his beautiful upper lip in a long time (it looks just like mine), and we were able to say goodbye and kiss his little mouth. He was completely peaceful snuggled in my arms, and he slowly drifted away. At 7:03pm, the doctor confirmed that he was gone.
Of course this ordeal was not what anyone was expecting during our pregnancy. We've been heartbroken throughout the last five months, and we were devastated when we realized he wasn't going to recover as we had hoped. However, given the eventual outcome, we're confident that today went as well as it possibly could. We had a wonderful time with him the last few days, and were able to bid him farewell and obtain some measure of closure. He fought long and hard, and he was a brave little boy; today we simply allowed him to stop fighting.
After Andrew fell asleep, they started a morphine drip to keep him comfortable; he's such a bruiser that they had to turn it up a few times before he even felt it. We sat next to his bed and held his hands until he was sleeping so soundly that he wasn't taking extra breaths above the ones the ventilator was giving him. We then moved him to my lap, added another sedative to guarantee complete comfort, and removed his ventilator tube. It was the first we've seen his beautiful upper lip in a long time (it looks just like mine), and we were able to say goodbye and kiss his little mouth. He was completely peaceful snuggled in my arms, and he slowly drifted away. At 7:03pm, the doctor confirmed that he was gone.
Of course this ordeal was not what anyone was expecting during our pregnancy. We've been heartbroken throughout the last five months, and we were devastated when we realized he wasn't going to recover as we had hoped. However, given the eventual outcome, we're confident that today went as well as it possibly could. We had a wonderful time with him the last few days, and were able to bid him farewell and obtain some measure of closure. He fought long and hard, and he was a brave little boy; today we simply allowed him to stop fighting.
Andrew Christopher Ryan
June 15, 2007 - November 19, 2007
June 15, 2007 - November 19, 2007
Confirmation
Today we got back the results from Saturday's CT scan. Though we had already mostly made our decision based upon Andrew's long-term prospects, the images of his brain provided the confirmation that we needed to be sure. He has severe enlargement of the ventricles, which are open spaces filled with fluid in the center of the brain. Worse, he has extensive damage to his frontal lobe, which controls higher-order brain functions. The frontal lobe is generally considered the portion of the brain that makes us human, and plays a part in impulse control, judgment, language production, working memory, motor function, socialization, and spontaneity. Andrew's deficits are sizable; though the human brain can sometimes compensate for damage, those missing portions will never physically recover. These results essentially guarantee that he would never be able to progress to a normal adult mental capacity.
I realize that some of this seems sudden and overwhelming. Though this is his first brain CT, he has had previous brain ultrasounds that did not indicate this level of damage. Andrew's been very sick during the past couple of weeks, including infection, fever, digestive issues, and the necessity for higher levels of ventilation support. The longer infants remain on a ventilator, the more likely that long-term brain damage will result; these scans represent a not-unexpected complication that we have known was a serious possibility. They also correlate with recent signs of behavioral deficits that Andrew has shown.
What this all means, in the end, is that we have decided to remove Andrew from life support. This is obviously a difficult decision, one that no one should ever have to make for their child. However, after seeing the CT scan, I believe the progression of his disease has essentially made the decision for us. In anticipation of this outcome, we spent the weekend saying goodbye, and we are as close to at peace with it as one can be in this situation.
Tomorrow (Monday) we will go in to the hospital, meet one last time with the doctors, and say our final goodbyes to Andrew. After we spend some quality time with him, they will remove the ventilator tube and keep him comfortable with medication until he passes away. They will provide him with whatever he needs so that he won't suffer at all; at that level of sedation it will be completely peaceful. We'll also be able to hold him without any of the wires or tubes.
Today we took lots of pictures, got hand- and foot-prints as keepsakes, and cut some of his hair to take home with us. We each got to hold him again, during which he was alert, interactive, and very comfortable. Knowing what we do about his progression and seeing firsthand some of the neurological signs that he's been having recently, it was especially rewarding to spend that time with him.
His primary nurses are on today and tomorrow, and some of his other favorites have also had him recently. All of the doctors and nurses are heavily invested in Andrew as well, and have been wonderfully supportive and compassionate through this difficult time; we know they'll miss him very much.
I don't know that I'll be in the mood for extensive writing tomorrow, but I will post something quick when it's over. We thank you again for your support through the last five months. I know it's been difficult for everyone, and that this abrupt ending may come as a shock and be very emotional for you all. One of my biggest regrets about the situation is that Andrew never got to meet the hundreds of people that have been pulling for him this entire time. It's not fair to any of you that his only method of interaction was through my comments on this blog...you all deserved to see him up close and personal the way that we did.
We hope that our loss can provide hope, and even salvation, for other parents like us in the future. We asked the organ donation program at the hospital to evaluate Andrew as a potential candidate. Due to the course of his disease and legal issues around the method of passing, he can't donate full organs; he can, however, provide tissues like heart valves and corneas, which can be lifesaving and/or life changing, for the recipients.
We will likely spend the next few days (at least) at home by ourselves. Though the arrangements haven't yet been made, Andrew will be cremated and we will not be having a formal funeral service. Though his short life was obviously tragic, his presence also provided us with great joy, and we don't think that a somber ceremony is an appropriate way to pay tribute. We may have an open house, either here or in Orange County, at some point in the next few weeks.
I realize that some of this seems sudden and overwhelming. Though this is his first brain CT, he has had previous brain ultrasounds that did not indicate this level of damage. Andrew's been very sick during the past couple of weeks, including infection, fever, digestive issues, and the necessity for higher levels of ventilation support. The longer infants remain on a ventilator, the more likely that long-term brain damage will result; these scans represent a not-unexpected complication that we have known was a serious possibility. They also correlate with recent signs of behavioral deficits that Andrew has shown.
What this all means, in the end, is that we have decided to remove Andrew from life support. This is obviously a difficult decision, one that no one should ever have to make for their child. However, after seeing the CT scan, I believe the progression of his disease has essentially made the decision for us. In anticipation of this outcome, we spent the weekend saying goodbye, and we are as close to at peace with it as one can be in this situation.
Tomorrow (Monday) we will go in to the hospital, meet one last time with the doctors, and say our final goodbyes to Andrew. After we spend some quality time with him, they will remove the ventilator tube and keep him comfortable with medication until he passes away. They will provide him with whatever he needs so that he won't suffer at all; at that level of sedation it will be completely peaceful. We'll also be able to hold him without any of the wires or tubes.
Today we took lots of pictures, got hand- and foot-prints as keepsakes, and cut some of his hair to take home with us. We each got to hold him again, during which he was alert, interactive, and very comfortable. Knowing what we do about his progression and seeing firsthand some of the neurological signs that he's been having recently, it was especially rewarding to spend that time with him.
His primary nurses are on today and tomorrow, and some of his other favorites have also had him recently. All of the doctors and nurses are heavily invested in Andrew as well, and have been wonderfully supportive and compassionate through this difficult time; we know they'll miss him very much.
I don't know that I'll be in the mood for extensive writing tomorrow, but I will post something quick when it's over. We thank you again for your support through the last five months. I know it's been difficult for everyone, and that this abrupt ending may come as a shock and be very emotional for you all. One of my biggest regrets about the situation is that Andrew never got to meet the hundreds of people that have been pulling for him this entire time. It's not fair to any of you that his only method of interaction was through my comments on this blog...you all deserved to see him up close and personal the way that we did.
We hope that our loss can provide hope, and even salvation, for other parents like us in the future. We asked the organ donation program at the hospital to evaluate Andrew as a potential candidate. Due to the course of his disease and legal issues around the method of passing, he can't donate full organs; he can, however, provide tissues like heart valves and corneas, which can be lifesaving and/or life changing, for the recipients.
We will likely spend the next few days (at least) at home by ourselves. Though the arrangements haven't yet been made, Andrew will be cremated and we will not be having a formal funeral service. Though his short life was obviously tragic, his presence also provided us with great joy, and we don't think that a somber ceremony is an appropriate way to pay tribute. We may have an open house, either here or in Orange County, at some point in the next few weeks.
Nov 18, 2007
Nice Day
We had a nice day with Andrew today. It was emotionally difficult, but we got to spend some quality time with him, and then we each got to hold him. After that, he took another field trip to radiology for a CT scan. They scanned his head and belly, looking for confirmation of neurological deficit in his brain and getting another close look at his digestive system. They hope to learn from Andrew by correlating his behavior with his brain status; they've already seen some abnormal behaviors, and they expect to see corresponding defects in his brain physiology. Hopefully this will help with prediction of outcomes and courses of treatment for future infants.
He behaved himself during the trip to radiology and back, and has been doing fine since. They haven't made any modifications to his ventilator settings, but he's comfortable and stable. We haven't heard from the radiologist about the test results, but I'm sure those will be discussed when we talk to the doctors again on Monday.
In the "piling it on" department, we took Willow to the vet tonight. She's been yelping a bit when we pick her up recently, and she's shown some delicacy in her running and jumping. After a series of x-rays of her back and pelvis, they discovered what looks like a compressed and calcified disk in her spine. It didn't seem as pronounced as it could be, and she is acting normally aside from this transient pain, so they didn't deem it necessary to keep her there or perform surgery. We got a prescription for painkillers and steroids to help her recover at home; now it's just a matter of keeping her from re-injuring herself.
He behaved himself during the trip to radiology and back, and has been doing fine since. They haven't made any modifications to his ventilator settings, but he's comfortable and stable. We haven't heard from the radiologist about the test results, but I'm sure those will be discussed when we talk to the doctors again on Monday.
In the "piling it on" department, we took Willow to the vet tonight. She's been yelping a bit when we pick her up recently, and she's shown some delicacy in her running and jumping. After a series of x-rays of her back and pelvis, they discovered what looks like a compressed and calcified disk in her spine. It didn't seem as pronounced as it could be, and she is acting normally aside from this transient pain, so they didn't deem it necessary to keep her there or perform surgery. We got a prescription for painkillers and steroids to help her recover at home; now it's just a matter of keeping her from re-injuring herself.
Nov 16, 2007
At a Loss
As I mentioned, we had a meeting with the doctors today...more on that in a moment.
In the last five months of posting to this blog, I've gotten a lot of praise for my writing abilities, my knowledge of medical jargon, etc. Now I find that I'm at a loss for words. I was standing at Andrew's bedside today, looking into his beautiful eyes, holding his hand, and stroking his face. He looked back at me, his eyes brimming with personality and life, he grasped my finger, and he calmed at my touch. I thought about how to express that moment here, and I found I couldn't do it justice. Nothing I can write, nothing anyone can write, can begin to describe the depth of love that I feel for my son. He's sick, but he's perfect. He's balding, puffy, and covered in wires and tubes, but it all disappears so quickly when he looks into my eyes. I treasure every moment like this. I would do anything for him, and I can and will make every decision with only his best interest in mind.
We talked with the doctors today, and if you hadn't guessed already, it wasn't a happy conversation. While Andrew makes continued improvement on a day-to-day basis, at least this week, his long-term prognosis is not as positive. The doctors have very little confidence in his ability to sustain himself long-term after extubation. If he failed the next extubation they would likely suggest a tracheostomy, which would insert a tube into his airway through a hole in his neck. This is generally considered a more long-term ventilation solution, and would likely require an additional hospital stay of one to two years. After that, he might be able to come home on a ventilator, but there would be no guarantee of him ever speaking or breathing on his own.
Unfortunately, the doctors estimate only a 5% chance of successful extubation. Though that number sounds surprisingly low, his medical history suggests that it's probably pretty accurate. He has to overcome a compressed bronchus, chronic lung disease, weak accessory muscles, and a tendency to clamp down and stop breathing when he gets upset. It's very difficult to stabilize him without a guaranteed airway; in the weeks that it would take him to wean to less support, he's bound to need some stabilization.
Even a successful extubation would be a long, hard road. It would start with continued weaning on his ventilator, then a significant amount of sprinting, and then an attempted tube removal. Just to get to that point would require at least a month. He would then start on something called BiPap, then wean to CPAP (which he was on last time), then move to high-flow nasal cannulae. Eventually, after a period of months, he may get to low-flow nasal cannulae, which would allow him to come home with a tank of oxygen. Even this best-case scenario would include its own difficulties and drawbacks. For instance, having never had any positive experiences involving his mouth, he wouldn't be able to eat by mouth and would require tube feeding for years. Even years later, he may not have the lung reserves to ever eat by mouth...simply the stress of chewing and swallowing while trying to breathe could kill him.
The more pressing long-term issue is the risk of developmental challenges. The doctors suggest a 95% chance of developmental issues; however, no one can predict the severity (or full range) of shortcomings. The four things they worry about are vision, hearing, cerebral palsy (muscular), and mental defecits. Even things that appear to be working now (his sight, for example), could deteriorate over time. At the serious end of the spectrum, he could be severely mentally handicapped, he could need hearing aids or be completely deaf, and/or he could require a wheelchair/crutches/braces/etc for life.
I don't want to keep piling on all of the awful possibilities. Suffice it to say that between the small chance of successful extubation and large change of awful developmental issues, we have about a 1% chance of having a normal five year old. This leaves us with some very difficult decisions. We will talk to the doctors again on Monday, at which point we will likely decide whether to continue forward toward another extubation. As we've all seen, complications have become the rule rather than the exception, and putting him through at least another month of trials with very little chance of success may be more than we want to impose on him.
I know it's insensitive to put all this on a blog post...it's like breaking up with someone via email. I'm sorry. I know this will ruin some weekends/weeks/months. I'm sorry. I know some people won't get this until Monday, and will feel left out. I'm sorry. I know some people will disagree with whatever decision we make. I'm sorry. I would call everyone we know to discuss this personally if I could, but it's not logistically feasible, nor am I emotionally capable of verbalizing this at the moment. If you're still reading this blog after five months, it's because you truly care about Andrew and about us, and hopefully will understand. All I can do is lay it all out there.
Rest assured that we will do what we think is best for Andrew; this is not a decision we take lightly. We also have the utmost respect for every doctor and nurse at Children's Hospital, and owe them all the quality time that we have had with him. Without them, I would never have seen my son's personality shine through, and I appreciate that they have given me that opportunity. Obviously this weekend will be an emotional one for us, and I don't know how much I'll be posting. No final decisions have been made, and nothing irreversible will be done before Monday. We won't make our final decision until we talk to the doctors again and discuss the situation further, but please be prepared for any outcome.
D and I are giving each other the strength and comfort we need at this time. We thank you in advance for your understanding and support....we welcome emails, but aren't ready to talk about this yet. Please refrain from sending flowers/gifts; we very much appreciate the sentiment, but they can be an overwhelming reminder of an emotional situation.
In the last five months of posting to this blog, I've gotten a lot of praise for my writing abilities, my knowledge of medical jargon, etc. Now I find that I'm at a loss for words. I was standing at Andrew's bedside today, looking into his beautiful eyes, holding his hand, and stroking his face. He looked back at me, his eyes brimming with personality and life, he grasped my finger, and he calmed at my touch. I thought about how to express that moment here, and I found I couldn't do it justice. Nothing I can write, nothing anyone can write, can begin to describe the depth of love that I feel for my son. He's sick, but he's perfect. He's balding, puffy, and covered in wires and tubes, but it all disappears so quickly when he looks into my eyes. I treasure every moment like this. I would do anything for him, and I can and will make every decision with only his best interest in mind.
We talked with the doctors today, and if you hadn't guessed already, it wasn't a happy conversation. While Andrew makes continued improvement on a day-to-day basis, at least this week, his long-term prognosis is not as positive. The doctors have very little confidence in his ability to sustain himself long-term after extubation. If he failed the next extubation they would likely suggest a tracheostomy, which would insert a tube into his airway through a hole in his neck. This is generally considered a more long-term ventilation solution, and would likely require an additional hospital stay of one to two years. After that, he might be able to come home on a ventilator, but there would be no guarantee of him ever speaking or breathing on his own.
Unfortunately, the doctors estimate only a 5% chance of successful extubation. Though that number sounds surprisingly low, his medical history suggests that it's probably pretty accurate. He has to overcome a compressed bronchus, chronic lung disease, weak accessory muscles, and a tendency to clamp down and stop breathing when he gets upset. It's very difficult to stabilize him without a guaranteed airway; in the weeks that it would take him to wean to less support, he's bound to need some stabilization.
Even a successful extubation would be a long, hard road. It would start with continued weaning on his ventilator, then a significant amount of sprinting, and then an attempted tube removal. Just to get to that point would require at least a month. He would then start on something called BiPap, then wean to CPAP (which he was on last time), then move to high-flow nasal cannulae. Eventually, after a period of months, he may get to low-flow nasal cannulae, which would allow him to come home with a tank of oxygen. Even this best-case scenario would include its own difficulties and drawbacks. For instance, having never had any positive experiences involving his mouth, he wouldn't be able to eat by mouth and would require tube feeding for years. Even years later, he may not have the lung reserves to ever eat by mouth...simply the stress of chewing and swallowing while trying to breathe could kill him.
The more pressing long-term issue is the risk of developmental challenges. The doctors suggest a 95% chance of developmental issues; however, no one can predict the severity (or full range) of shortcomings. The four things they worry about are vision, hearing, cerebral palsy (muscular), and mental defecits. Even things that appear to be working now (his sight, for example), could deteriorate over time. At the serious end of the spectrum, he could be severely mentally handicapped, he could need hearing aids or be completely deaf, and/or he could require a wheelchair/crutches/braces/etc for life.
I don't want to keep piling on all of the awful possibilities. Suffice it to say that between the small chance of successful extubation and large change of awful developmental issues, we have about a 1% chance of having a normal five year old. This leaves us with some very difficult decisions. We will talk to the doctors again on Monday, at which point we will likely decide whether to continue forward toward another extubation. As we've all seen, complications have become the rule rather than the exception, and putting him through at least another month of trials with very little chance of success may be more than we want to impose on him.
I know it's insensitive to put all this on a blog post...it's like breaking up with someone via email. I'm sorry. I know this will ruin some weekends/weeks/months. I'm sorry. I know some people won't get this until Monday, and will feel left out. I'm sorry. I know some people will disagree with whatever decision we make. I'm sorry. I would call everyone we know to discuss this personally if I could, but it's not logistically feasible, nor am I emotionally capable of verbalizing this at the moment. If you're still reading this blog after five months, it's because you truly care about Andrew and about us, and hopefully will understand. All I can do is lay it all out there.
Rest assured that we will do what we think is best for Andrew; this is not a decision we take lightly. We also have the utmost respect for every doctor and nurse at Children's Hospital, and owe them all the quality time that we have had with him. Without them, I would never have seen my son's personality shine through, and I appreciate that they have given me that opportunity. Obviously this weekend will be an emotional one for us, and I don't know how much I'll be posting. No final decisions have been made, and nothing irreversible will be done before Monday. We won't make our final decision until we talk to the doctors again and discuss the situation further, but please be prepared for any outcome.
D and I are giving each other the strength and comfort we need at this time. We thank you in advance for your understanding and support....we welcome emails, but aren't ready to talk about this yet. Please refrain from sending flowers/gifts; we very much appreciate the sentiment, but they can be an overwhelming reminder of an emotional situation.
Eyes Open
When we arrived at the hospital today, they had just turned off Andrew's paralytic drip. Within a half hour, he was wide awake, looking at us, and moving all his extremities. Though he was groggy for the first few minutes with his eyes open, he didn't get upset enough to cause himself any problems. He was very cute and well-behaved the entire time we were there, and that has continued since we left. D bought him a new NICU-approved mobile (all plastic, no fabric), and he seems to be enjoying it so far.
His blood gases have all been good so far, and they've been able to wean further on his ventilator settings. They're going to take it slow, alternately turning down his rate (breaths per minute) and pressures after each gas (six hours apart).
We have a meeting with the doctor tomorrow. I don't expect much new information, but we'll at least get the plan straight.
His blood gases have all been good so far, and they've been able to wean further on his ventilator settings. They're going to take it slow, alternately turning down his rate (breaths per minute) and pressures after each gas (six hours apart).
We have a meeting with the doctor tomorrow. I don't expect much new information, but we'll at least get the plan straight.
Nov 15, 2007
Drew's Blog by the Numbers
A few fun facts about Andrew, this blog, and you:
- Andrew turns five months old today, at 4:58pm. The counter with his age seems to be an hour off, but it's actually correct....he was born during Daylight Saving Time.
- This is the 300th blog entry, which averages out to almost two entries per day.
- As of this post, there have been more than 25,000 hits. Many of them are obsessive family members with a hair 'refresh' finger, but there have still been thousands of unique visits.
- Those visits have come from at least five different countries...US, Spain, Italy, Costa Rica, and the UAE.
Thank you again for everything....Andrew has built quite a community of fans, and he appreciates the support.
Here's a map of the last couple hundred hits from the US:
And a weighted map of all his US hits. Obviously Andrew has quite a bit of family in California, but even the lighter shades of green can represent hundreds of hits.
So Far, So Good
Andrew's still on the conventional ventilator and has been doing well today. Good blood gases have weaned him down from 26 to 20 breaths per minute, even with the paralytic drip in place. When a doctor comes around this afternoon, we'll see whether they are going to remove the paralytic and let him wake up again.
Putting His Foot Down
Andrew decided today that he really didn't like the high frequency ventilator. In the morning, he had a high heart rate and blood pressure, so they gave him extra doses of Ativan, along with some morphine. It didn't seem to have any effect on him, and they went up on his sedative drip. They also had to turn up the ventilator pressure.
I was in Sacramento all day, but met up with D at the hospital in the afternoon. We noticed that he was moving quite a bit; with the paralytic, 'quite a bit' means that he was moving his foot slightly, pointing his finger on one hand, slightly moving his other arm, opening his eye and occasionally breathing on his own. Since breathing above the hi-fi can cause problems, this is generally where they would turn up they paralytic.
After talking to the doctor, they decided that perhaps Andrew should stay on the same dosage, but be transfered to the conventional ventilator. He still wasn't down to minimal settings on the hi-fi, so this was a bit unexpected, but we were certainly in favor of the switch. So, as of 6pm this evening, Andrew has been on the normal vent. His blood gas tests have been better than they were before the change, and they've even started to wean his settings. Let's hope he can keep it up.
There weren't many other changes today. They'll likely start to turn down the dosage on the paralytic, as he won't be able to fully breathe on his own until it's gone. Since the major development occurred so late in the day, we haven't talked to the doctor about a timeline for his next steps.
I was in Sacramento all day, but met up with D at the hospital in the afternoon. We noticed that he was moving quite a bit; with the paralytic, 'quite a bit' means that he was moving his foot slightly, pointing his finger on one hand, slightly moving his other arm, opening his eye and occasionally breathing on his own. Since breathing above the hi-fi can cause problems, this is generally where they would turn up they paralytic.
After talking to the doctor, they decided that perhaps Andrew should stay on the same dosage, but be transfered to the conventional ventilator. He still wasn't down to minimal settings on the hi-fi, so this was a bit unexpected, but we were certainly in favor of the switch. So, as of 6pm this evening, Andrew has been on the normal vent. His blood gas tests have been better than they were before the change, and they've even started to wean his settings. Let's hope he can keep it up.
There weren't many other changes today. They'll likely start to turn down the dosage on the paralytic, as he won't be able to fully breathe on his own until it's gone. Since the major development occurred so late in the day, we haven't talked to the doctor about a timeline for his next steps.
Balding Baby
Though these aren't very good pictures, Andrew hasn't been very photogenic recently.
This is Andrew's version of Donald Trump's combover. D had just brushed everything into place...normally it's completely out of control.
This is Andrew's version of Donald Trump's combover. D had just brushed everything into place...normally it's completely out of control.
His face is starting to swell again, due to being sedated/paralyzed for a few days. However, this is the first shot with his bandages off, and his scar looks pretty good.
Nov 14, 2007
Two Tidbits
There wasn't much change at all in Andrew's status today, so I thought I'd focus on two things I forgot to mention yesterday.
I've got a busy week with work, but I'll try to get some new pictures up in between trips.
- The bandages on Andrew's stomach are gone. The surgeon came by and took them off yesterday, and his scar looks great. If possible, it looks even better than it did last time, and this includes two incisions in the same spot.
- Andrew is off contact isolation. I don't remember if I ever mentioned the reason that we have to wear gloves and gowns in his room; essentially, he had a positive test for a bacteria called 'steno,' which is a pretty contagious airborne bug that can affect those with compromised immune systems. Even though it didn't seem to be affecting Andrew himself, the fact that he was colonized (tested positive every time) meant that it was living on the plastic of the ventilator tube and could still be dangerous for other babies in the unit. In order to protect them, any time we were in contact with Andrew or his stuff, we had to wear gowns and gloves. Well, as of a negative test yesterday, we no longer have to wear a bunch of plastic....at least until the next time they take a sample and do another test. :)
I've got a busy week with work, but I'll try to get some new pictures up in between trips.
Nov 13, 2007
Another Field Trip
Andrew took a field trip to Radiology for a CT scan today. They unhooked him from the ventilator, gave him breaths by 'bagging him' during transport, and then hooked him up to a conventional ventilator in the radiology room. He behaved well throughout, and there were no respiratory issues. The interventional radiologist was also able to attend, so they were prepared to drain any abscess that was found.
On his previous x-ray and ultrasound, it appeared that there was air and perhaps some fluid in his lower chest cavity, just below his left lung. When they were able to visualize the same area with the CT scan, they realized it was below the Gore-Tex patch, in his abdomen, rather than above. They inserted a needle and drew out the liquid. Instead of finding pus (which would be in an abscess), they found old blood. This was quite possibly left over from the surgery and probably harmless; they took cultures of the blood to make sure.
The rest of the CT was uneventful. They continued the scan, but won't review the details for a couple of days. There weren't any obvious issues, so it finished and they wheeled him back to his room. Not finding anything serious was a good outcome, so the scan is certainly a success for now.
However, Andrew had another post-scan issue. A few hours later, he had some more blood in his diaper. Since then, he's had a couple more. Though this would normally be very worrying and point to a perforated bowel, they can pretty much rule that out from the scan. That again points to colitis, a simple internal inflammation of his colon. Unfortunately, there's not much that can be done for it, aside from what they're already doing. He's still on antibiotics, they've taken cultures of everything to look for anything unusual, and so far he's doing well on the ventilator.
So, the day was essentially a wash. The situation they were worried about appears to be nothing, but there's still an unexplained problem to keep an eye on. His test results recently have been better, pointing to a lessening of infection. His gases have also been good enough to wean the vent settings a few times. Since there are no obvious action items, they'll continue with the current plan.....they'll wean the hi-fi, switch him to a conventional vent, wean those settings, and then try to extubate. He's obviously a long way from that point, but it's still a good long-term goal.
I'll post again if we get additional CT results....if not, the next few days should be pretty boring. As long as his dosages are correct, he just lays there sleeping all day. It'll probably be a few days (at least) before they allow him to wake up again; they want to make sure his other issues are under control first.
On his previous x-ray and ultrasound, it appeared that there was air and perhaps some fluid in his lower chest cavity, just below his left lung. When they were able to visualize the same area with the CT scan, they realized it was below the Gore-Tex patch, in his abdomen, rather than above. They inserted a needle and drew out the liquid. Instead of finding pus (which would be in an abscess), they found old blood. This was quite possibly left over from the surgery and probably harmless; they took cultures of the blood to make sure.
The rest of the CT was uneventful. They continued the scan, but won't review the details for a couple of days. There weren't any obvious issues, so it finished and they wheeled him back to his room. Not finding anything serious was a good outcome, so the scan is certainly a success for now.
However, Andrew had another post-scan issue. A few hours later, he had some more blood in his diaper. Since then, he's had a couple more. Though this would normally be very worrying and point to a perforated bowel, they can pretty much rule that out from the scan. That again points to colitis, a simple internal inflammation of his colon. Unfortunately, there's not much that can be done for it, aside from what they're already doing. He's still on antibiotics, they've taken cultures of everything to look for anything unusual, and so far he's doing well on the ventilator.
So, the day was essentially a wash. The situation they were worried about appears to be nothing, but there's still an unexplained problem to keep an eye on. His test results recently have been better, pointing to a lessening of infection. His gases have also been good enough to wean the vent settings a few times. Since there are no obvious action items, they'll continue with the current plan.....they'll wean the hi-fi, switch him to a conventional vent, wean those settings, and then try to extubate. He's obviously a long way from that point, but it's still a good long-term goal.
I'll post again if we get additional CT results....if not, the next few days should be pretty boring. As long as his dosages are correct, he just lays there sleeping all day. It'll probably be a few days (at least) before they allow him to wake up again; they want to make sure his other issues are under control first.
Nov 12, 2007
Quiet Sunday
Not much new to report today. Andrew had a pretty good day, in that each blood gas seemed to be better than the last. This evening has produced a couple of less-good results, but they haven't had to go back up on the ventilator settings.
The plan is to take him to Radiology tomorrow in the late morning or early afternoon. He'll get a CT scan that covers from his neck to his groin, so they'll focus on the possible abscess but also get a look at his belly and (hopefully) his constricted bronchus. If one of the interventional radiologists is available, he may be able to perform any necessary procedures while still in the scanner; for instance, he could drain an abscess.
The range of possible findings is wide, so we won't know much more until it's over; last time, we didn't get the results for two days, so it might be a while.
The plan is to take him to Radiology tomorrow in the late morning or early afternoon. He'll get a CT scan that covers from his neck to his groin, so they'll focus on the possible abscess but also get a look at his belly and (hopefully) his constricted bronchus. If one of the interventional radiologists is available, he may be able to perform any necessary procedures while still in the scanner; for instance, he could drain an abscess.
The range of possible findings is wide, so we won't know much more until it's over; last time, we didn't get the results for two days, so it might be a while.
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