Our family would like to thank everyone at St. Louis Children's hospital and John's Hopkins Children's Surgical and Medical Center for everything they do every day. And thank you to everyone who has been so supportive with your thoughts and prayers.

Samantha Young Smith

March 20, 2000 - September 20, 2007.

peaceful and painless



We will still try to use this site for information about any arrangements. Someone else will be writing the posts from now on.

Samantha now has two chest tubes on her right side, as they are trying to let pressure out of her chest which is caused by bleeding. It allows her to breathe easier and she is very stable. But it took a lot to get there, and they still have no real idea about what is causing the bleeding that is putting pressure on her right side. The complication to all this is that she is on ECMO, which means that she has to have a lot of blood thinner in her blood so that it doesn't clot as it goes through the machinery.

The plan is to just let her rest and see what she can do to heal.

Please keep praying for her.

A setback

Samantha had a good night and had another bath. She did some more coughing and they got some stuff out of her breathing tube. The best news was that they were able to turn down the support that she was receiving from the ECMO. It was also nice to see her sleeping, but also responding when she was being messed with.

Unfortunately, at the end of the day today, they heard very reduced sounds on her right side, and an x-ray shows that her entire right lung is completely "whited out" again. This means that it is either full of fluid, could have collapsed or could be hemoragging -- they just don't know. We are waiting for them to do an ultrasound tonight to see if they can determine what happened. Everyone seems to be as surprised and confused as we are, but we are hoping to figure it out soon.
We knew there would be setbacks, so we're praying that this is all this is.

Another Day

Monday’s x-ray is much improved. She had another bath and the doctor changed the dressing on her ECMO cannulas. They have added some new sedation, as her tolerance continues to go up. She slept well, especially after we sheltered her eyes from the bright lights. Today, she was allowed to wake up more and cough when she was suctioned. That way, they were able to get more mucus out of her lungs for her. She looks very good, and we hope to have a very uneventful overnight.

One of the crazy things about hospitals is that the doctors change every week, so the entire team that is taking care of her in the PICU is different than it was yesterday. We have just had one day with them so far, so we'll have to see if they have different goals for her. Thank goodness that the respiratory therapists who run the ECMO machine and the nurses don't change so dramatically - although they all have very different ways of doing things. It's hard to know what is best and if it really matters when they do things differently. We are just hoping for continued movement in the right direction overall, and we hope that all these things are working.

On the home front, my parents are still there taking care of Emma, and Andrew is going to try to spend some time at work tomorrow. Unfortunately, Emma has come down with a bit of a cold/flu, so I haven't seen her since Saturday. But, she seems to be feeling better and told me that she was going to school tomorrow.

Just one last thing -- the ECMO machine uses a lot of blood products, so we are asking everyone who can to give blood back into the system. You don't have to do it here, just go anywhere and give a little back into the blood bank if you can. Thank you!

The Weekend of Baby Steps

September 15th:
On Saturday morning, she finally had an x-ray that looked better than the previous one, but we know that it is only part of the bigger picture. By Saturday, most of our family had come to see Samantha and help us get through this time. Everyone has been wonderfully supportive and there for us when we needed something. Seeing everyone helped Samantha as well, as she stabilized well on Saturday and had both a good day with Andrew and a good night with me. Emma has been a big help as well, and she is doing well.

September 16th:
Sunday was a good day. Samantha and Andrew watched some football, and I got to sleep for a little longer than usual. Samantha had a very quiet day, which is always good. Her morning x-ray was not as good as the previous one, but that is going to happen. She is also looking much better, so that is just as important. We were even able to give her a bath and get her skin cleaned up and her IV dressings changed. Additionally, she has been able to tolerate some changes to the ECMO that the doctors wanted. They also seem to have her blood pressure where they want it and they have allowed her temperature to come back up to normal. She is starting to look more pink now.

The long version, part two: 9/6 - 9/14

Here is part two of Samantha's current journey. Again, this has a lot of detail, most of which is medical in nature. It stops a couple of days ago, when she was being stabilized in the PICU.

September 6th:
Thursday morning, we started to get back into a regular routine. Andrew went to work, Emma went to school, and Samantha stopped in to see her new classmates. She spent a few minutes with them, learning their names and answering their questions about where she had been and what had happened. In all, it was a good day and the hospital had also determined her correct dose of vancomycin, so we restarted that antibiotic along with continuing her ceftazidime.

September 7th:
Friday was another good day. Emma and Samantha both went to school, and I sat in Samantha’s classroom just to make sure that she didn’t have any trouble with her IV. At lunchtime, she and I went to Red Lobster and then we picked up Emma after school. That evening, we went over to Holy Cross for them to run tests for her kidney function and to see what the vancomycin level was in her body. Later that night, we got the results, her kidneys had started to get worse, and the vancomycin level was almost two times what it should have been. We called every doctor, and they all agreed that we should stop that drug and replace it with one called Bactrim. She then started that drug on Saturday.

September 8th:
On Saturday, we just relaxed and tried to get our home back in order. But, that evening, while we were picking up some dinner, and after another blood draw at Holy Cross, Samantha started to have a little fever, about 100. We called the doctor, gave her some Tylenol, and it seemed to go away. She slept well that night, and we continued all her antibiotics.

September 9th:
At some point on Sunday, Samantha’s fever started to come back again and she was very tired. By the afternoon, her fever was about 100 again, and she was sleeping a lot. As the day went on, her fever climbed slowly, so that by bedtime, it was 101. We kept checking on her, and soon she seemed to have more and more labored breathing. By 10:00 pm, her fever hit 102, and she was having obvious difficulty catching her breath. We called the doctor and they suggested that we head to the hospital. We decided to come back to Johns Hopkins, so that she could get a high level of care if it ended up being necessary. We called Jeff and he came over to stay with Emma while Andrew and I took Samantha to the hospital.

September 10th:
Very early on Monday morning, about 1:30 am, we arrived at Johns Hopkins and were admitted once again. Samantha even began to need oxygen and was placed on a nasal cannula. We finally got into a room around 6:30 am, and Samantha was able to get some sleep. She was sleeping relatively comfortably throughout the day, as we were waiting for them to be able to do another bronchoscopy. This time, they were going to biopsy some of the tissue to look for signs of rejection, as well as do another BAL to see if any new germs were growing. (None had ever shown up in the previous culture.) That afternoon, we had a new team of doctors come to see Samantha because, as in most hospitals, it was a new group that worked that week.

And, unfortunately, the difficulties that we had with the administrators during her last admission found us again. The new team of pulmonologists came and asked how she was and if there had been any change since the night. I told them what I had seen – mostly that she was just so very tired.

At that point, the attending doctor chose to speak very harshly to me about what he said was my refusal to allow treatments for my child and my intrusion into her care. Having never met this person before, I was taken aback and was very angry at some of his accusations. He was unable to tell me who had given him this information, and I told him that he needed to understand that I was not going to be pushed out of her care by anyone, least of all a doctor who had never met us before and made false accusations based on “secret” information. This was obviously not a good way to begin our stay. Even more unfortunate is that all of our interactions with this doctor were colored by this beginning, and he became defensive and insulting whenever we asked questions or wanted to discuss his recommendations.

Samantha went in for her bronchoscopy that afternoon, and they said that they had been able to get a good biopsy but that they had found a great deal of mucus in her lungs – so much so that it was difficult to keep a bronchoscope down without it getting quickly covered and stuck. Dr. Mogayzel felt like what he saw looked more like infection than rejection, so we were relieved. He also recommended that we do more aggressive chest physical therapy and breathing treatments in order to help her move the mucus out of her lungs. Samantha did well recovering and we went back up to her room. By this time, my parents had arrived and had brought Emma to the hospital with Andrew so she could see her sister.

We spent the rest of the day and night trying to help Samantha to cough up the mucus in her lungs. She was able to bring a lot of the stuff up, but her need for oxygen did not decrease. Meanwhile, the doctors from Infectious Disease came to talk to us about a new course of treatment. They recommended that we restart the vancomycin, with regular monitoring, continue her ceftazadime and bactrim, restart azithromycin, add linezolid, and add an antifungal drug. They were working to make sure that the drugs were covering every possible type of infection, with the exception of viral. Unlike a bacterial infection, to treat a viral infection, you have to be able to identify the virus before it can be fought with drugs. But all indications were that this was bacterial, so they wanted to through everything at it, including the kitchen sink. All her new medicines were started that night.

September 11th:
On Tuesday, Samantha was again very tired, and she slept a lot. The respiratory therapists came in often to administer breathing treatments and help her move the mucus up out of her lungs using physical therapy on her chest. Andrew brought Emma up to visit for a little bit along with my parents. Samantha was getting very good at coughing up mucus, but by the evening, she was having some trouble with gagging and throwing up. Her medicines were also making her stomach hurt, because she hadn’t eaten much since Saturday. That night, she slept fitfully, often waking up to cough and spit up mucus.

September 12th:
By Wednesday morning, Samantha was having a lot of trouble catching her breath. She was also coughing up pink phlegm and having dry heaves. Soon, she needed more help than her nasal cannula, so they got her ready for BiPAP – a system that covered her nose and pushed in air at a constant pressure to help her keep her lungs open. We needed to come up to the PICU in order to use that system, so they brought us upstairs. Fortunately, Andrew came up early, so we were all able to go up to the PICU together.

Once we arrived, Samantha was taken into a room to be placed with a BiPAP system. She was so scared and kept screaming for me, so they finally came and let me help to calm her down. They placed the mask on and took an x-ray. The mask did not fit well, and they decided to put a full nose and mouth mask on instead. Samantha was very uncomfortable, and she was still having difficulty getting enough oxygen in her body. The doctors came in shortly and told us that having looked at her x-ray, they felt she needed to be on a respirator in order to continue. We told them to go ahead. I stood at the corner of the room, and Andrew went downstairs to call both grandparents and update them.

As they started to put the tube down her throat, a great deal of fluid came up and suddenly her heart arrested. I watched as they began chest compressions, gave her a lot of drugs to restart her heart, and even shocked her with paddles 2 or 3 times. I also asked someone to find Andrew and get him back up there. They finally reached him on the phone and he ran back to the room. We watched together as they did chest compressions for over 30 minutes, and the doctors let us know that she needed to go on a form of heart and lung bypass called ECMO. We told them to do what they needed to do. They finally got her on the machine, and were also able to start her on a ventilator. They moved her into the ECMO room, where there was another child on ECMO. They keep them together because of the need for so much support and vigilance on the system. We decided that we would not leave her side, even though there was no room for us to sit or lay down next to her bed. The PICU staff helped us to identify a place where I could sleep and shower during the day while Andrew stayed with Samantha. I would be staying up with her all night.

September 13th, 14th:
On Thursday and Friday, the doctors continued to work to stabilize Samantha on ECMO. She is taking more antibiotics, so that she has double coverage on all of the possible germs. She gets medicine to help control her blood pressure, to replace electrolytes, to add fat and calories to her body, to help her gastric functions, to adjust her glucose levels, to continue to suppress her immune system even while she tries to heal, and to sedate her and make her comfortable. She is also on dialysis through the ECMO machine so that her kidneys are not being too overtaxed. Another part of her treatment is to decrease her body temperature to about 92 in order to protect her brain post cardiac arrest. So, she’s cold, but that is good for now.

There are a lot of goals that the doctors are trying to balance. She needs to be on low ventilator settings so that her lungs aren’t damaged by the help, and the bypass needs to do the right amount of work to let her rest while she heals. We have learned and are learning that this is a very long process and there are a lot of risks. We are trying hard to not focus on one number or one x-ray or even one range of settings. The important thing is to look at how she is doing over time, and hopefully, the trend is that she is getting better overall. Individual setbacks may occur, but as long as the overall picture continues to improve, then we have a reason for hope.

The long version, part one: 8/26 - 9/5

As promised, here is a very detailed history of Samantha's first hospital experience. This only goes through when we came home the first time.

August 26th:
On Sunday, we were at a potluck for Evergreen students, and Samantha began to complain about feeling dizzy. She also wasn’t hungry – very unusual for her. When we got home that afternoon, she had a very low fever, and by that evening, she was feeling bad enough that she slept with me rather than in her own bed.

August 27th:
On Monday, very early in the morning, Samantha was not feeling well, and when I felt her head, she seemed extremely warm. When we took her temperature, it was about 103.5 – pretty high for her. I took her into the pediatrician on Monday morning, and they looked her over, listened to her lungs, and checked her for strep and all that stuff. They didn’t see anything, so we went home and kept trying to get her fever down with Tylenol.

August 28th:
Tuesday morning, Samantha seemed worse, so when her fever hit 104, we went back to the doctor. By now, they still couldn’t hear too much in her lungs, but she sounded congested. She was also complaining about pain across her back, which suggested a possible pneumonia. So they sent us for an x-ray which showed pneumonia on her right side. We immediately went to Holy Cross Hospital where they started her on an IV antibiotic - ceftazidime.

August 29th:
Wednesday was a long day. Samantha did not feel great, and her fever was continuing to climb. Eventually, she hit 105.5, and we were putting icepacks on her head and neck. Sometime late in the night, she started to get better, and by Thursday morning, her fever seemed to be gone.

August 30th:
On Thursday, she was feeling pretty good, and they sent us down for an x-ray in the afternoon to compare with her earlier one. By the time we got back, Samantha’s fever had started to come back, and she was complaining about her stomach hurting. Then, the x-ray came back looking worse, and the folks in St. Louis decided that she needed a bronchoscopy with a broncho alveolar lavage (BAL) to determine what was going on inside her lungs. We had two choices: take her down to National Children’s Medical Center in Washington, DC or up to Johns Hopkins Children’s Medical Surgical Center in Baltimore. Based on our past experience with National Children’s and the recent rating of Johns Hopkins Children’s as #1 for pediatrics in the country, we decided to make the trip up to Baltimore. The transport team showed up about 10pm and they put us in an ambulance and drove us to JHCMSC where we were admitted. They did a CT scan which showed that her upper right lobe had collapsed and had a mucus plug blocking her airway. We were finally in a room by 3:30 am, and they had added two antibiotics – azithromycin and vancomycin.

August 31st:
Friday morning was the bronch. The doctors went in and lavaged (pushed water down) her right lung and were able to remove the mucus plug. When she got back to her room, her fever was gone, and she was feeling much better. She continued on the antibiotics, and she was starting to look much better, too. She started breathing treatments as a way to help her remove the mucus from her lungs. Her x-ray also showed a lot of improvement, especially that her collapse had resolved.

September 1st:
Saturday was another good day. We all walked around the hospital, pulling Emma and Samantha in a wagon. Sam’s x-ray showed more improvement, and we started thinking and talking about when we could take her home. Unfortunately, since Friday was the beginning of a holiday weekend, we knew that it would be Tuesday before arrangements could be made to finish her antibiotics at home. She also had a rough night and needed a breathing treatment in the middle of the night.

September 2nd:
On Sunday, Samantha was doing so well that we were able to take her outside on the play deck – a rooftop playground. She and Emma played together, and we all played ball. It was a beautiful day, and we all enjoyed getting some fresh air. After eating a good dinner, Samantha slept very soundly all night and was doing very well.

September 3rd:
Monday started out to be a nice day. The hospital had a little picnic for some of the kids on the play deck, and they allowed Samantha to go out without her fluid pump, which meant that she could go down the slide. That morning, we again discussed with her doctors the possibility of leaving with a peripheral IV and getting her home asap. They wanted to check her vacomycin levels that afternoon, so they did that after lunch. At the time, we had learned a little about vancomycin and had asked them to check Samantha’s kidney function as well, as it it very hard on the kidneys. I was told that the doctors did not feel it was necessary.

Unfortunately, that evening, they announced that they wanted to do more blood draws at midnight and 2am because her vancomycin levels were so high that they were approaching toxic levels. The biggest concern with this was the potential damage that would be done to her kidneys at this level, especially because her immunosuppression medicines were already making her kidneys work hard on a regular basis. After some rather hard conversations with one of her doctors and some quick Google searches, we discovered that her vancomycin levels should have been checked at least 2-3 days earlier, meaning that they had been running very high doses of a very strong antibiotic that can damage her kidneys for at least 4 days without checking if it was the correct dose. Since it obviously was much too large of a dose for her, Samantha’s kidney function was impaired and now we had a new issue to deal with in helping her recover.

Additionally, they were asking to stick her with needles in the middle of the night because of their mistake. We came to a compromise and they drew her blood that night, but the second time, they were not able to place a new IV because they needed to replace the current one which was very irritated. So, they had to stop her vancomycin doses and her ceftazidime dose ended up being delayed as well until they were able to put in an IV in the early morning on Tuesday.

September 4th:
Tuesday, was a rough day all around. I expressed my displeasure at the mistake that had been made and that was going to do 2 detrimental things to Samantha: 1) cause damage to her kidneys which were already at risk of weakness due to her immunosuppression routine; and 2) continue to expose her to hospital germs because we cannot go home until the safe and appropriate vancomycin dosage is determined and until her kidney function returns into the normal range.

So, Tuesday morning, they were able to place an IV, and her kidney function test came back showing that some stress had been put on her kidneys, causing her levels of creatnine to more than double from when she was admitted. Her fluids were increased in an attempt to help her kidneys flush the extra vancomycin, they changed her dose of ceftazadime, and the doctors were unwilling to let us go home until her kidney function started to get better.

For some reason, in the midst of this relatively tense situation, and after 4 days of being at this hospital and continuing her regular transplant medications, an administrator decided that it would be a good time to challenge my ability to appropriately provide her transplant drugs. To be fair, I was told on Friday, once we were admitted, that the hospital had a policy that did not allow parents to administer home medications. At the time, we pushed back and said that we were not going to give up control of her regimen, and we never heard another word about it. In addition, every hospital we have ever been to has told us of the same policy, and we have been able to work with them to continue our regimen while meeting their actual needs – usually that the nurses need to document the medications as she receives them.

But suddenly, here we are in the midst of the vancomycin situation, and then a nurse manager, who seemed to have just returned from her long holiday weekend, decided to get very strict about their policy. At first, I was told that the pharmacy needed to see and check our medications. I agreed to let them take her medicines down for the pharmacy to see what we were using. When I called to get her drugs back, I was told that the pharmacy was unable to confirm what was in the bottles and that they were going to use their own formulations for her medication. This set off another more hostile confrontation as I was told that this was about trust, and that they “couldn’t trust that what I said was in the bottles was really what was in there.” I’m sure anyone in the same situation would have had the same reaction to that – I explained that they shouldn’t be talking to me about trust after their own doctors had made a mistake that caused damage to Samantha’s kidneys.

The final resolution only came about because of the doctors’ intervention, specifically one doctor who created a compromise position that the pharmacy would show me all the medications, draw them up in front of me, and work with me to ensure that everything she needed was provided exactly as it needed to be. So, we agreed, worked with the pharmacy and then felt like the situation was resolved. Little did we know that it would rear its ugly head again later.

September 5th:
On Wednesday, Samantha’s kidney function seemed to be getting better, and they were finally willing to let us go home. We spent the day getting information about how to administer her IV antibiotics, gathering all of our stuff, and working out the follow up plan. Finally, that night, after dinner, they drew blood for the last tests, and we went home. All of us were thrilled to be back together and in our own beds.

The short story

So, what’s been happening?

I am writing this because I know that there are a lot of people who are interested and care about Samantha and what has been going on with her lately. Many people have emailed or called to ask how she is and what is happening. Rather than continue to tell the story over and over and to try to tell everyone everything, it seemed like a good idea to write it all down.

You can also add comments to any of these postings, so that when Samantha gets better, she will be able to read any messages that you want to leave for her. That being said, please know that we will delete any comments that we think are inappropriate.

So, this first post will catch everyone up on what’s been happening. I will do the short story here, and then I will try to post an update every day or so, depending on what is happening. For anyone who wants more details, I will create a couple of posts that will spell out all the specific details of each day since she got sick.

The long and the short of it is that Samantha started to get sick on Sunday, August 26. She had a fever of 103 by Monday morning. By Tuesday afternoon, her fever was worse and her xray showed pneumonia so we were admitted to Holy Cross. She was feeling better on Thursday morning, but had a relapse that afternoon, and we were transported to Johns Hopkins that night for a bronchoscopy and bronchial alveolar lavage (BAL) on Friday. Again, she got better, and even though we had some problems with her medications which caused some damage to her kidneys, we went home on Wednesday night with instructions on how to give her IV antibiotics.

She had a couple of good days, and even went to school for three hours on Friday. Her fever returned for real on Sunday, and by midnight, she was breathing hard and her fever was 102. We came back to Johns Hopkins and were readmitted. On Monday, they did another bronch, BAL and biopsy to see if we were dealing with rejection. She was needing oxygen to breath as well, and on Tuesday she was very tired. Tuesday night, she continued to struggle with breathing although her fever seemed lower. Wednesday morning, they determined that she needed more support and we were sent up to the Pediatric ICU (PICU) where they tried to get her more breathing help. Soon, she needed to be put on a respirator, but when they tried, her heart arrested and she needed to be placed on a heart lung bypass called ECMO.

Over the last couple of days, she has stabilized and they are working to let her rest so her heart and lungs can recover. As you can imagine, this is a long process, and we are just at the beginning. We are hoping that she stays comfortable, gets stronger, continues to clear her lungs and that her heart continues to get stronger.

As for us, one of us is with her at all times now, except for 7-8am and 7-8pm when they kick us out for shift change. We are actively participating in her care, and the whole medical team - doctors, nurses, respiratory therapists - have been very helpful and accepting of our involvement.

Thank you to everyone - your prayers, good thoughts and other help mean a lot to us. I will try to post another update tomorrow.