It started Tuesday afternoon. Jake came home from school and seemed like he was in a good mood. He went into the playroom and was content watching a Wiggles Video. Emmett was actually happily playing as well and Mamie and I were feeding Millie and Ruby. At one point it seemed a little quiet to me, but Mamie said she had peeked in the playroom at Jake and he was watching the video. About 15 minutes after that I had to go into the playroom to change Ruby's diaper. I looked at Jake and he was lying on the floor with his face close to the DVD player. He does that a lot - sticks his face up close but on second glance I noticed that his head was deviated, his right arm, hand, and mouth were twitching. I flipped him over and he looked very pale and his lips were blue. He was breathing in gaspy breaths. Not knowing how long he had been having a seizure, I waited a few minutes to observe then gave him diastat (rectal valium). I have only ever had to give Jake one injection, but after 6 minutes things had not improved. Mamie (thinking more clearly than I was) thought to hook Jake up to the pulse ox machine that we have for Ruby. I took it off Ruby's foot and put it on Jake's thumb. He was satting in the 50's and 60's (90 to 100 is normal). I called 911. It was a harrowing 10 minutes waiting for the ambulance. I debated giving Jake some rescue breaths but the 911 operator said not to if he was breathing (in retrospect I should have given him rescue breaths). The paramedics had to help Jake breathe the entire way to the Children's Hospital, but right about the time we got there he started breathing normally on his own again. He was pretty out of it since I had given him 2 doses of Valium, but he did react to pain and tried to push them away when they were trying to get an IV in. At that point we had to wait for Jake to wake up before we could go home which took another 8 hours or so. We got discharged at midnight. They did start Jake on Depakote. It's an old seizure medicine and not used as much now because liver function has to be monitored, but a good short term med until we can see the neurosurgeon. Jake has done well over the past week since his seizure. He seems to be tolerating the Depakote pretty well, so I'm praying we will not have another episode like last week and that we can discuss more options when we see the surgeon in April.
When we were sent home from the hospital with Ruby's pulse ox, the Oxygen company gave us two probes to attach to the monitor to use for the month. The first probe didn't seem to work well after a few days, so we had already moved onto the second probe. That is the probe that went to the hospital with Jake, and I guess they took it off because we didn't come home with it. We had someone staying with us to help with the girls that night and she told me the next morning that the old probe had stopped working during the night. I didn't think too much of it, because Ruby has been doing so well. I did call the Oxygen company but they said that insurance only pays for 2 probes/month. I said I would try the old probe again, but I couldn't find where our sitter had put it. That night Ruby was very fussy and did not eat well all night. Thursday morning she did take most of her bottle, then at 10 she vomited after only taking an ounce of formula. We stopped feeding her and she didn't look good to me. She looked pale and just "not right." I called the MD and they said to come on in. I started thinking that she really didn't look good and that I should check her sats. Mamie found the old probe and we hooked her up. It said she was satting in the 60 and 70's. It seemed accurate to me based on how she looked, so I called 911. I couldn't risk putting her in the car and I knew she needed oxygen right away. There was a disaster with the fire truck and ambulance getting to our house. Apparently there was a tree trimming truck taking up over half the street. The fire truck had to run over the truck's cones to get by and when the ambulance tried to do the same it got stuck half off the street. They had to get out and walk down the street to our house. The firemen were able to start giving Ruby oxygen until the paramedics could get there. They called a second ambulance to take us in and the first one had to be towed. Ruby seemed fine in the ambulance on just a little oxygen, but when we got to Vandy and they tried taking her off the O2, then she started dropping her sats again. We were admitted and had some tests run, but the only thing they could find was reflux on her swallow study and some abnormal labs indicating a viral infection. She was discharged Friday night and seems to be doing well at home. We are monitoring her all the time for now. The O2 company brought us two new probes at 10:00 Friday night.
I have so many thoughts about this past week, but I am not sure I can even talk about my feelings around it yet. It was enough to get the details out. Maybe I can write about it later. Thanks to all my neighbors that reported the tree company to the police. Not sure they really listened because they were back blocking the street again today, but after several of us called the police they moved.
On a happier note.....Pictures!
Ruby in the hospital.
Back home with O2 sats at 100%!
First time outside with Jake!
