When asked to fix a problem, I am a believer in fixing it right the first time. Apparently when you are dealing with hospitals, this doesn't happen - a very dangerous combination!
We came home last Sunday from a week of intense chemo. Monday, Saoirse had labs drawn by the home nurse, and I looked forward to seeing if her blood counts were doing ok. She still wasn't eating or drinking much, and she was sleeping lots (mostly because of the nausea meds and Benadryl). We knew this chemo would hit her harder than others, so my focus was on keeping her nausea at bay as best as possible, and getting whatever food I could into her. Mostly she drank a few ounces of formula, some oatmeal, maybe some crackers or goldfish, and water that we forced into her with a syringe. Not anywhere near the balanced diet or volume of food that she usually consumes. Monday, her counts were fine according to the nurse who called, hemoglobin up to 9 (from 7.8 in hospital on Sunday), and ANC was still 1200. I figured, "Great - we'll just keep trying to get her to eat, and worry about a transfusion for later this week."
By Wednesday, we were concerned that she still was feeling so crappy and sleepy, and that she was still very very nauseous. We called the doctor, and checked in with her that morning, She was concerned that she might be getting a bit dehydrated, so she suggested going out to get some Pedialyte to get her hydrated and keep her electrolytes up. She also thought she could probably use a little IV hydration and most likely some blood, so she set up an appointment for us to come into clinic on Thursday morning and have everything done. That evening, when the home nurse stopped by to do a blood pressure (we called her because we were concerned), she mentioned to us that Saoirse's sodium had been below normal on Monday, and wondered if Jimmy Fund had said anything about watching her for dehydration. The Jimmy Fund nurse had not informed me of her below normal sodium when they called Monday, and had not said anything about making sure to keep her hydrated with something like Pedialyte. I still wasn't super concerned, since no one had said anything, but we did buy some Pedialyte that night, and we were glad we were going in to clinic the next morning.
We arrived Thursday, with a pretty happy baby. She took her nausea meds without gaging, we got her in the car, and she didn't gag once on the whole ride into Boston. She drank and ate when we arrived, slowly but eagerly, and we were excited that she was showing interest in things like toys and curious george on the iPad. The nurse had pulled her labs when we arrived, and taken her vitals. Her blood pressure was low, but we knew that she was somewhat dehydrated, and they wanted to get her hooked up to hydration asap. We went out back, hooked up, Saoirse drank some more of her bottle, and settled in to watch some Curious George. That's when all hell broke loose.
The nurse rushed back to our bed, saying that her sodium was dangerously low, and that she may have something called (ok, I can't remember it now, I'll get back to you on it), which is a side effect of the chemo and is worsened by additional sodium in the system - she went to turn off her fluid. The first thing out of my mouth was, "but she has no adrenal glands and doesn't regulate her own sodium. You know she has no adrenals, right?" She didn't!!!!!!! Strike one!
After she left her hydration alone, a bunch of nurses and the RN rushed back and told us that we were going to be transfered to the ER. WHAT?! I immediately refused. I couldn't understand why they would need to move her just to give her saline boluses. It didn't make any sense what so ever. She was happy, smiling, eating; my kid was doing better than she had in days, and they wanted to send her to the ER and admit her to the ward? We just got out! We came in because we thought she would need blood and a little hydration boost! What on earth were they doing? I told them they could do whatever they needed to there in clinic, and if they needed to transfer her up to 6 later, that was fine. I was also confused at what the big deal with low sodium was. In my mind, she just needed to get some hydration in and bring up her sodium levels that way. They said that she was at risk for a seizure.
Now the next part is a little bit of a blur, but basically it went like this:
The RN said that this was a big issue, and that in order to make sure that her levels were going in the right direction, we had to have labs drawn and analyzed often and quickly. This was the reasoning for the ER. When I asked her why we weren't alerted to the possible implications of her low salt levels on Monday, she said that her levels weren't low enough to be concerned about. I asked if this was shared with her endocrinologist on Monday, to make sure that nothing should be done, and she wasn't sure. She asked Dr. Shusterman (Saoirse's primary doctor) to come talk to us. HER SODIUM LEVEL WAS NEVER TOLD TO ME, NOR BROUGHT TO THE ATTENTION OF HER ENDOCRINOLOGIST!!! The reason given was that it was just below normal, and that it is usually a non issue. This is the point where I snapped.
What started as a controlled, firm reprimand, turned into an all out, emotionally driven, screaming, lecture. I accused her doctors of not working to keep my child safe in my home, and only acting when the situation became so dire that hospitalization was needed. I also brought to their attention that their failure to pass along important lab chemistry information to her endocrinologist put her in severe danger that could have been avoided by a simple email or phone call, and an earlier intervention in the clinic. I also reminded them that we had a similar situation of non communication between departments during her last post-chemotherapy hospitalization, and that they had assured me then that every lab was going to be sent to her endocrin team, no matter what, for review. I then asked them why people taking care of Saoirse and her labs were not aware that she had no adrenal glands. I couldn't understand why it wasn't at the top of her chart, screaming at anyone reading it for either treatment or lab analysis. As far as I'm concerned, her chart should read:
Adrenal Insufficiency - no glands
This should be known by anyone who has anything to do with any aspect of her care, no matter how small. This is worse than a peanut or drug allergy, this is missing organs! As far as I was concerned, the doctors had failed to do their job - they had failed to provide proper care for my child, and now she was left in a dangerous situation that should have never come about. The doctor "apologized" for not sending her labs to endocrin, and for not informing me of the issue, but I could tell from her tone, that she was not convinced that she did anything wrong, and that she knew she had "followed protocol." This infuriated me, and I couldn't handle it anymore. Strike two!
So they took Saoirse (and Mike) by ambulance from Jimmy Fund to the ER at Children's (Yes, they drove her in an ambulance approximately 500 to 1000 feet to the other side of the street). I refused to go with them, and walked over on my own (our social worker Judy came with me). I was there before they were checked into the department. The whole time in the ER was frustrating and, as far as I'm concerned, pointless. We supposedly were sent there because they could get labs done more quickly, but it seemed to take them longer to get anything and everything done. They also were not in contact with her regular teams, only the ones on call, so her medicines and treatment were not being coordinated with any sense of her true history or her current status. It was a complete disaster. We were able to contact and coordinate with her doctors faster than the ER team working with her. Also, her nurse changed like three times in the eight hours we were there (yes eight hours! we were supposed to be out of there in like three). And for some strange reason they wouldn't let her eat! This was the first day in over a week that she had been asking to eat something, and they were refusing to allow her too. They kept saying that it might raise her sodium too quickly. What did they think I was going to give her, a salt lick? I was going to give her hummus, milk and applesauce, not salt and vinegar potato chips. So after six hours of being there, having to check and recheck everything ourselves, having to try and get her to nap with the chaos all around, and after her begging for food for two hours, she spiked a fever, and they started treating her for an "infection." The whole situation had spun into a chaos that was so frustrating and angering that I never want to set foot in that ER again. Strike three!
Saoirse's sodium levels were climbing up, she received a dose of antibiotics as a precaution, and we were admitted to the floor. Once we got up there, there was a lot of things happening to get settled, but all the nurses were working hard to get things organized as quickly as possible. The night went as well as expected and we started to regroup in the morning. I was still quite upset, but my focus was on getting Saoirse back to stable condition, and helping her feel better over all. She was having some diarrhea, and some painful urination, so I was concerned that there was an infection that stemmed from her being dehydrated for a few days. Some cultures were drawn, and Saoirse was put on precautions so that if she had an infection, it wouldn't be transferred to any of the other kids. The frustrating thing about precautions is that it confines her to her room (although by Saturday, the nurses became more lax as she was showing signs that she didn't have a transferable infection, and they allowed her to roam the hallways as long as we kept her out of the play and resource rooms). By Saturday her salt levels were back in the normal range, and we started asking about going home. The policy is that she can not leave until her ANC starts to climb, and the doctors did not think that that would happen anytime soon. We were left to battle about restrictions and circumstances and try and work to make sure that this didn't happen again, ever.
We were allowed to leave for three hours on Sunday morning so that we could go to my Nana's 89th birthday party. Saoirse was so excited. She got to run around with her cousins, and she was glad to be with family and not stuck in the hospital. I think she felt normal for the first time in about a week and a half, and I was so excited to see her happy. She seemed a little distressed when we went back to the hospital after the party. She looked at me with a look that said," but mum, we just left. Why are we back here?" I was sad to have to bring her back to her room by herself, without being able to play with the other kids, or better yet, her own dog at home. She was feeling so good, and I hate having her in the hospital when she is feeling well. By Sunday afternoon I was done being there and done with the doctors treating her numbers and not Saoirse the person. I felt like we were getting lines and lies, and I didn't know who to trust or believe any longer. It is a horrible feeling to feel like you can't trust the doctors who are supposed to be treating your child for a life threatening disease. I think this is the most disappointing part of this whole ordeal.
Saoirse's ANC came up on Monday morning, and we were allowed to go home. It took them hours to get her prescriptions ready, and I had to kind of keep on them, but I know they weren't expecting her to go home so soon, and they were a little unprepared. Saoirse was very excited to be home, and had fun chasing Fallon around the house until bed time. She has been taking her meds like a champ, and we are so proud of her for being so strong, and glad to have our happy baby at home with us again.
This is not the first time that Jimmy Fund has made a catastrophic mistake regarding Saoirse's care. The last time she spiked a fever in the clinic, they forgot to draw her blood cultures before they gave her IV antibiotics. Because of this, she was put on four or five different antibiotics (instead of one or two) because they wouldn't know if she had anything before antibiotics were administered. She was also sent home on IV antibiotics after that stay, and she suffered additional side effects from the ones she had been on in the hospital. We also had trouble with her oncology team not sending Saoirse's lab chemistries to her endocrinologists, and we spoke with them a couple of times on how important it is that all of her teams communicate regularly to coordinate her care at this crucial time in her treatment. I am a trusting person by nature, and I like to think that people will do what they say they will (especially doctor who are caring for a critically ill child). I also think that everyone can make a mistake. But mistakes must be learned from, and if the same mistake is repeated when it makes a difference in my child's health, there is absolutely no excuse.
I have expressed my complaints and concerns with all of her teams, who are now putting more strict rules into place to keep her safe in the future. I have also spoken with the nurse manager for children's and will be speaking with the care coordinator at the Jimmy Fund about what happened and what need to be put in place system wide to make sure that a similar mistake doesn't happen with Saoirse or any other patient.