Today sure didn't start like I thought it would!
This morning Madi woke me up just after 7 with her rhythmic vomiting that indicates a seizure is starting. I ran her out of the room, grabbed her oxygen, woke up David, grabbed her rescue medication, started the first rescue med, and started the oxygen. I thought she was coming out of it, but about 15 minutes later she started vomiting again. Again she got the medication and I kept on her oxygen, and again I thought she was coming out of it but then she started staring off and doing an odd thing with her hand. I gave her the third rescue med and called 911, which is our protocol when we get to 3 of her rescue meds. The fire department came and she was still off, so they called the ambulance to take us in. By the time they got here, though, she was coming through it and was resting. I asked them to take us to Phoenix Children's Hospital, as they are equipped to help Madi and all her "extras". One fireman was fine with that, but one told me no that I needed to go to Mendy's Place, a pediatric ER closer to us, because I had maxed out her medication. I tried to explain that we pretty much always max out her medication, and that PCH was the only place equipped to check her shunt and do what she needed. I explained that she was coming out of it, falling asleep, and that signals the tail end of her seizures, so I felt comfortable going the extra 10 minutes to get there. He refused to take me to PCH, though, so off to Mendy's Place we went (I understand he needs to do what he feels is best, and I know he was just being safe. Though I was frustrated, because I knew they wouldn't have what Madi needed, I do get it). When we got to Mendy's place and saw the doctor, she was shocked that they wouldn't take me to PCH and told me that I need to insist next time because they really couldn't handle a child as "complex" as her. They were sweet to Madi, though, and efficient, and for that I am thankful. They were also able to do the blood draws from her feet so she didn't feel it, which is so huge! Mendy's place ran her blood work and her white blood cell count came out a little high. She has had a cold, but is almost over it. They thought it could be from that or they thought the increase in white blood cell count might be from the seizure. Either way they weren't too worried. Her urine and x-rays came back fine and her lungs looked and sounded good. They were unable to do the big bang MRI, as they are not equipped to do them there, so they skipped the MRI. They called neurology and they said they were fine with skipping the MRI since she didn't have other shunt failure symptoms, and not to transfer us, so they sent us home, yeah!!
Last night I stayed up to watch a show with David and I didn't pick up the house so when they came it was messier than I like. I had also put a bunch of oils in my hair for a scalp treatment because my scalp was itchy and had slept like that to really moisturize it. My hair was so greasy and gross! I left the house without shoes and in PJs as well, since we left in a hurry. I felt like such a mess at the hospital and was very happy Madi was doing better and I could get home and give us both a shower. We also hadn't eaten at all that day and it was already past lunch time, and I hadn't had anything to drink either, so we were hungry and thirsty.
Once we got home I hooked up another oxygen tank since ours ran out right before we left for the hospital and realized the tubing and mask was missing. I wasn't sure if the ambulance workers accidently took it or it had gotten thrown away. I called preferred home care, who provides our oxygen, to see if I could get another one and they said they were unable to deliver one on the weekend. I called the fire department, who got in touch with the ambulance drivers, and they said they had left our mask on Madi when we left the house. Because our tank had run out of oxygen and they said they were switching to theirs, I assumed they would switch the mask too and didn't even notice that it was still our mask. I had left the mask at the hospital when we left, so I called the hospital to see if they had it. They had thrown it out not realizing it was ours, but did very nicely offer to give us one if we drove down, so we did. I'm so glad it all worked out! I pray we won't need it but just in case we do, I felt so much better having it ready. I am sad, though, that it wasn't enough to do the trick this time. Bummer!
The plus side of all of this is we got an unexpected restful afternoon at home. Madi fell asleep once we got home and rested. David and Conner headed to the monster trucks since they had tickets, and the girls and I just relaxed and watched movies, which was nice and something we don't do often enough!
Madi is back to her normal spunky self and I am so thankful! She's such an amazing little girl!
This morning Madi woke me up just after 7 with her rhythmic vomiting that indicates a seizure is starting. I ran her out of the room, grabbed her oxygen, woke up David, grabbed her rescue medication, started the first rescue med, and started the oxygen. I thought she was coming out of it, but about 15 minutes later she started vomiting again. Again she got the medication and I kept on her oxygen, and again I thought she was coming out of it but then she started staring off and doing an odd thing with her hand. I gave her the third rescue med and called 911, which is our protocol when we get to 3 of her rescue meds. The fire department came and she was still off, so they called the ambulance to take us in. By the time they got here, though, she was coming through it and was resting. I asked them to take us to Phoenix Children's Hospital, as they are equipped to help Madi and all her "extras". One fireman was fine with that, but one told me no that I needed to go to Mendy's Place, a pediatric ER closer to us, because I had maxed out her medication. I tried to explain that we pretty much always max out her medication, and that PCH was the only place equipped to check her shunt and do what she needed. I explained that she was coming out of it, falling asleep, and that signals the tail end of her seizures, so I felt comfortable going the extra 10 minutes to get there. He refused to take me to PCH, though, so off to Mendy's Place we went (I understand he needs to do what he feels is best, and I know he was just being safe. Though I was frustrated, because I knew they wouldn't have what Madi needed, I do get it). When we got to Mendy's place and saw the doctor, she was shocked that they wouldn't take me to PCH and told me that I need to insist next time because they really couldn't handle a child as "complex" as her. They were sweet to Madi, though, and efficient, and for that I am thankful. They were also able to do the blood draws from her feet so she didn't feel it, which is so huge! Mendy's place ran her blood work and her white blood cell count came out a little high. She has had a cold, but is almost over it. They thought it could be from that or they thought the increase in white blood cell count might be from the seizure. Either way they weren't too worried. Her urine and x-rays came back fine and her lungs looked and sounded good. They were unable to do the big bang MRI, as they are not equipped to do them there, so they skipped the MRI. They called neurology and they said they were fine with skipping the MRI since she didn't have other shunt failure symptoms, and not to transfer us, so they sent us home, yeah!!
Last night I stayed up to watch a show with David and I didn't pick up the house so when they came it was messier than I like. I had also put a bunch of oils in my hair for a scalp treatment because my scalp was itchy and had slept like that to really moisturize it. My hair was so greasy and gross! I left the house without shoes and in PJs as well, since we left in a hurry. I felt like such a mess at the hospital and was very happy Madi was doing better and I could get home and give us both a shower. We also hadn't eaten at all that day and it was already past lunch time, and I hadn't had anything to drink either, so we were hungry and thirsty.
Once we got home I hooked up another oxygen tank since ours ran out right before we left for the hospital and realized the tubing and mask was missing. I wasn't sure if the ambulance workers accidently took it or it had gotten thrown away. I called preferred home care, who provides our oxygen, to see if I could get another one and they said they were unable to deliver one on the weekend. I called the fire department, who got in touch with the ambulance drivers, and they said they had left our mask on Madi when we left the house. Because our tank had run out of oxygen and they said they were switching to theirs, I assumed they would switch the mask too and didn't even notice that it was still our mask. I had left the mask at the hospital when we left, so I called the hospital to see if they had it. They had thrown it out not realizing it was ours, but did very nicely offer to give us one if we drove down, so we did. I'm so glad it all worked out! I pray we won't need it but just in case we do, I felt so much better having it ready. I am sad, though, that it wasn't enough to do the trick this time. Bummer!
The plus side of all of this is we got an unexpected restful afternoon at home. Madi fell asleep once we got home and rested. David and Conner headed to the monster trucks since they had tickets, and the girls and I just relaxed and watched movies, which was nice and something we don't do often enough!
Madi is back to her normal spunky self and I am so thankful! She's such an amazing little girl!
Resting in my arms at the hospital...
1 comment:
Am glad she is doing ok now. Take care and i hope your scalp is all good too!
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