24 hours...

I hate when doctors say you can't leave until you have been off oxygen for 24 hours. I understand why but I just hate the comment, I've heard it too much in the past 21 months.

Saturday afternoon was totally normal and we all seemed to be on the mend but around 4:30pm we noticed some retraction while Seth as breathing. By 5:30 we decided that I should take him to the urgent care and make sure he's still not struggling with pneumonia. So I headed out to phoenix children's urgent care and before I left the house I called to see how long the wait was and they said only 15 min. And sure enough I only waited 10-15 minutes until I got called back. We first went into the room and after they checked his breathing we had to go to the respiratory room. He was put on the o2 stats monitor and sure enough he was not keeping his o2 saturation high enough. He was keeping it at 88 and they would like it 94 or higher. So they did a breathing treatment then an X-ray and then another treatment and by this time his stats were at 85 so they told us that they were going to have to admit him either to Banner Cardons or PCH. We waited for the ambulance and his X-rays to come back and around 9:30 the ambulance arrived and they picked up Seth and I followed behind because I needed to get my car to the hospital. It was so hard to not ride with Seth. I hate leaving him by himself.
I got to Cardons and went straight to register him and then waited for us to get a triage room. Once we got in triage our nurse came in ( she is a tough one and rude in some ways but you can't help but like her) anyways she hooked him up and I decided to ask if there was anyway we were going home and she laughed and asked is he always on oxygen?" I said no and she replied with a "nope absolutely not." she decided before turning on the o2 to see if he could handle himself and he dropped right away to 87 but she left it for a good few minutes to see if he would bring it back up but he didn't so he was put on the o2. We waited in the triage room till 3:12am until the told us we finally had a room.

After we got the room and I got Seth to sleep I had to head home and get all his meds because one of them they are not allowed to give because of all the FDA rules so I had to make sure I had that to give to him in the morning. I got back to the room around 4:30am and he just woke up so I made him a bottle with some of his meds and then he went back to sleep around 5am and I was able to sleep till about 7am and then the day started. Mike came down around one so that Sydney and I could go and have lunch with my grandma and Archie, my parents, and Steven-Caitie-Averie. My grandma and Archie go back to South Dakota every summer and so we wanted to see them before they go back. After that I went back to the hospital and Mike and I got to spend some time with Seth before he went back and got the girls from my parents. Mike left at about 6:30 and got the girls all ready for bed and I just stayed at the hospital with Seth. He was having a few short seizures before Mike left to go home but around 8:30 I was making his meds and I heard his o2 machine beeping and I walked over to him and saw his whole body just convulsing and then looked at the o2 monitor and say he was at 74 then he went to 48 and thats when I opened the door and called to the nurse that he was seizing and came back in the room and he was at 22. It was so scary he was not breathing and going blue around the lips. At that point there were 5 nurses in the room one ran to get his emergency med and the other putting the o2 mask on him and another one suctioning out his mouth so he does not choke on anything. I have never seen him like that before and I really would never want to see that again if I do not have to. I had no idea what to expect and if things were going to be ok. I have no idea how long the actual seizure was because he was having it before I even looked at him but from the time I noticed it until it stopped was about 4 min. and after he came out of it his o2 levels came back up pretty quickly and I think it helped that he was already on o2.

Monday was pretty uneventful. Mike stayed at the hospital with Seth and I stayed home with the girls and got the house in some order. Tuesday the girls went over to Lisa's and she watched them all day for us! THANKS SO MUCH!!! They had taken him off o2 Tuesday morning and during his nap he kept going down too low like 86 and thats when the doctor came in and put him back on o2 and said that he needs to stay another night. Mike stayed again with Seth another night and finally on Wednesday we were able to bring our boy home as long as we got him into the doc Thursday or Friday. We have to give him breathing treatments every 4 hours even through the night for the next 30 days and then we got a steroid (Pulmicort) and he gets that twice a day for 16 days and then once a day for the next three months. We went into our pediatrician Thursday and got a referral for a pulmonologist for Seth and we see him April 11, he has just been having too many lung issues to not see one. We also have another appointment with our gastro doc on April 20th and sometime in April we have to get another swallow study done.

Monday April 4th we take him to get fitted for his wheelchair so he should be getting one soon and we got in with Foundation for the Blind and have a meeting with them in the next few weeks. I am just waiting for them to schedule a home visit. I have heard great things about the guy that is coming to the house to see him.

If you think of it pray that we can stay out of the hospital with Seth he is still retracting a little and we are still right on track with his treatments so we would just really like to stay out of the hospital if we can.

Here are some pictures from the hospital stay but they are not the best quality because they were taken with my phone and not my actual camera but it was have to work :)

Sunday Morning having some down time.

Hanging with Daddy



Playing in a chair with his favorite piano

He decided he no longer needed his o2 on and took matters into his own hands.