On Friday (12/23) we had labs drawn and sent to Houston to the Burzynski clinic as usual. We received a phone call from the doctor on call there and she was very concerned about the low level of sodium. Kathryn’s level was 120 at the time. She said we needed to go into the hospital and get a transfusion for this. I called the Mary Bridge clinic and they had us come in. They repeated the labs thinking it may be an error since her sodium level was 145 on Wednesday, which is a perfect normal level. The repeat labs came out the same. Kathryn had been drinking a great deal of fluids on Thursday and she was on a low sodium diet. They thought maybe her sodium would adjust itself if we just with held fluids and didn’t restrict her sodium. We tested her sodium again in the morning of 12/24. It was now 119 so we were told to head to the emergency room. We arrived around 11am. Now the doctor there didn’t believe the 119 level because he said people at this level are usually incoherent and have had or having a seizer. He ran the test again and it came out 113 so she was admitted. They also did the MRI since we had it on the schedule for the 28th. This way they would also have a current MRI to see the big picture. All day Saturday she was doing fine. She did have this nagging cough and it was not getting better. The sodium level was coming up but then they slowed it down because it came up too fast. She was hoping to go home on Saturday night so she would be home for Christmas but that was not going to happen. She had a couple of tears but realized that it was for the best. On Sunday (Christmas Day) she was still doing very well with exception of the cough. Her sodium was not coming up well at all so they ordered sodium tablets and .9% saline to go with the very slow drip of 3% saline.. She was still doing well. I snuggled on the bed with her. She shared her dinner with me in fear that I had not eaten. Then around 7:30 when all seemed well she started having a seizer. Scott had just headed out for Home. I told Richard she was having a seizer and to get help. I yelled out Molly the nurse’s name as she had just left the room. They were there fast and went in to action. Richard grabbed Scott who hadn’t even made it onto the elevator. Her first seizer lasted at most one minute. As she was calming down she started to go into another seizer. This time they were really ready with drugs to stop the seizer. This one only lasted a few seconds (15). But she could not protect her airway and they had to sedate her and put a breathing tube down her throat. She has been sedated from that point one. Things calmed around 9:30. They did a chest xray to make sure the tube was in correctly and also a CT scan to see if anything changed from the time of the MRI. No changes so that is good.
Let me tell you it was terrifying watching my child have a seizer. She was sitting up and clinching teeth and two little fist and hard as she could. She was shacking violently and all I could do was try my best to comfort her. It was difficult to watch. Then they stuffed the bite tool into her mouth so she wouldn’t bite her tongue. They had to hold her head tight so they could get the oxygen mask on her to keep her breathing. She had so much stuff in her lungs and throat that she could not clear it out. They calmed her quickly with sedation drugs. It took three tries to get the tube down her throat but they had her in a state of mind by then that she really didn’t feel it . They got her comfortable and she has been doing well since.
Now it is exactly 24 hours since her seizer and she is doing well. She is resting well and taking some breaths on her own. The machine knows when to not breath and when to breath for her. She is responsive when asked to respond so this is all good. Her chest xray earlier today was a dramatic improvement as the doctor said.
Today they also gave her red blood cells in the morning and platelets a little later which had dropped to 20,000 and are now 89,000. All of her electrolytes are in order now too. They had to adjust her sodium, calcium, and potassium. Everything is adjusted and she is looking good. They have been drawing blood every four hors every since she was admitted. Of course we had a scare of an infection during the day but her temp that only went to 100 has come down to normal. They gave antibiotics to be sure.
So tonight she will have a breathing test somewhere between 3 and 5 am. If she passes they will remove the tube tomorrow. If she doesn’t they will do another test a later in the day. It sounds like they are expecting her to pass and have the tube removed. We will stay optimistic. Home some time in a few days.
It’s been emotional and very tough. Everyone has been so supportive and this helps so much.