Our time in the PICU was a series of up and downs. If Paisley was showing good signs we were hopeful and happy. If anything went wrong or was not getting better, I was dejected, emotional, and frustrated. I noticed the more informed I was about Paisley's condition, every treatment, and her illness, the less worried I would be, but confusion and impatience made me frustrated and sometimes even a little angry. I learned to always ask questions and seek reassurance when worries were plaguing me.
Based on her symptoms, the doctors were concerned that she might have Thrombotic Thrombocytopenic Purpura (TTP). Comparing that to the possibility of her having HUS, TTP would be the more serious condition because the outcomes are generally worse and the condition is usually genetic, so it would cause chronic problems. Although the doctors still didn't know for sure the cause of her illness, they decided to treat her as if she had TTP because that is the more serious diagnosis, and the treatments for patients with TTP are similar and still helpful to those with HUS. They recommended Plasma Pharesis (Plasma Exchange), dialysis, diuretics (medicine to help her pee), and supportive care, meaning they give her medical assistance in performing all her essential body functions. This includes IV or tube feeds, breathing tube, catheter, and various medications for blood pressure, heart rate, etc. She also had an MRI, and an ongoing EEG scan to monitor brain activity and look for more seizures. All this while she is still sedated.
The doctors informed us that she could have some brain damage caused by a lack of oxygen and blood flow in the smallest vessels in the brain. We worried, but all we could do was "wait and see". Anyone who has ever had a seriously ill or injured family knows that the "wait and see" game is one of the hardest things about the experience. They told us her kidneys should fully recover, and they were already showing improvement. We were glad for that! They told us she would probably remain unconscious for at least a few days, depending on how she responded to plasma exchange and dialysis.
We received an outpouring of love and support from friends and family via social media and phone calls. So many prayers and good thoughts were being sent our way. We could feel those prayers and thoughts buoying us up in times of despair.
It was very difficult for me to see her so swollen with all the sensors, IVs, etc attached to her because it was visible evidence of the serious battle occurring in her body. Every glance was a harsh reminder of her fragile state. I tried to be a strong Mom and be the loving, reassuring presence she needed, but I was falling apart emotionally. I felt so much love for her, but that magnified my worries. Thank goodness Myles was able to stay calm and see reason. He was able to reassure me when I began to lose it.
On her second night, Myles stayed with her through the night while I rested in a "sleep room" reserved for family staying the night. While I was sleeping, she had more seizures. These were the kind of seizures that are not visible to the eyes, but show up on the brain scans as abnormal brain activity. The doctors response was to put her on an anti-seizure medication since recurrent seizures can have negative effects on the brain. Waking up to this news, I felt worried and guilty for sleeping through it. I rushed to her room.
When I arrived everything was fine. By that time Paisley began showing some response to things going on around her, batting the nurse away during her sponge bath, and squeezing Myles hand. Soon she was beginning to sit up, and bat at her tubes and wires. This was a huge relief for us! It was like getting a tiny glimpse of our normal little girl. Unfortunately, the doctors had to sedate her more heavily after that so she wouldn't pull out the tubes and wires. But later that day she was able to nod to simple questions and squeeze our hands on request, despite the extra sedation. This put us in a good mood because it reassured us that her brain was working well. However we were uneasy about the increased swelling as they continued to pump in more and more IV fluids. Regardless, we went to bed feeling good about her progress.
Much of our time in the PICU was spent wondering and discussing when she would be able to get off interventions such as the breathing tube and the EEG. There were so many factors to be considered in making these decisions, it seemed like the removal of these things was always delayed by some test or setback with her health. Meanwhile, we would wait and worry, wait and worry...
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| Her hair was pretty wild from all the goop they used to attach the EEG sensors to her head. |
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| We washed her hair and gave her pig tails. |
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| I painted her fingers and toes. Green is her favorite color. |
Soon we began to receive meals from friends, family, and ward members who wanted to help. They were delicious and a huge comfort. My Mom and Myles Mom also came to help with Laurel and provide moral support. That was another huge blessing. Our limited time with Laurel brought us joy when she came to visit.
The doctors were finally able to confirm that HUS was the illness Paisley was battling, which was good news because it meant that not only were the doctors much more experienced and able to treat this disease, but she also had very good chances of a complete recovery within a few weeks. However, it soon became clear that this case was a pretty severe case of this illness.
More to come...
