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.