Monday, March 9, 2015

story about the seizures and our hospital stay

Ok, so this may be a very long post. The story is quite long, so just stick with me and we will get through this together.

Thursday Morning: Everything was just fine. Tayt was taking care of her as I was going to Bend to do some training for Beachbody. BTW, Bend is an hour away for future reference of this post. When I was leaving Kassidy was going down for her nap.

Thursday Afternoon: I was at my friends house in Bend doing my training and I my phone rang and it was Tayt. I instantly had a feeling that something was wrong. When I answered the phone Tayts voice trembling and he said "Get home now, she is having a seizure. I already called the ambulance, just get here now!" I immediately got up and said "OMG Kassidy is having a seizure i have to go now." I got in my car and started driving. i called my mom and told her and she left her work to go to the hospital to be with Tayt and Kassidy until I could get there. I called my sister and aunts and cousin too. I already knew I wanted Kassidy to go to OHSU Doernbecker Childrens Hospital because Madras has an absolutely horrible hospital, and well they didn't prove me wrong. When the ambulance arrived with Kassidy and Tayt she was still seizing! They had given her adivan and it did not stop it. So Madras didnt have the other meds on hand. they had to mix them and that took forever! So I had mentioned earlier that I had an hour drive there. Well to drive that far in your own head and only wondering what is happening is horrible. I kept calling my mom and telling her to tell the Doctors there that her Neurologist was Dr. Bell and to call him for protocal and that she only has a vein in her head for an IV. My mom just kept telling me that she is still seizing and to get there now. I was going as fast as I could and I got there within an hour. When I got there she was just stopping seizing. They had finally just mixed the meds, seriously a fucking hour later you mix meds! Come on Madras get your shit together. Well 20min had past and she started to have another seizure. That one lasted 20min. during that time I called Dr. Bell and told him I wanted to be transferred to OHSU and to be life flighted. I got my way, but they decided to transport us by ambulance instead. OHSU is a 3 hour trip btw! The hospital gave some stupid excuse as to why but we all know it was because of insurance, I mean come on this is a baby! So here is a bit of back story before I get any further. Tayt had heard Kassidy in the monitor like she was waking up from her nap. when he went into her room he found her seizing in her crib. When he went to pick her up and take her down stairs he noticed Kassidy was burning hot. So back to us leaving for OHSU. We took her temp and it was at 99* when we left. oh yes Kassidy had not woken up yet, she was out due to the meds and seizures. she was limp and we were told she may have to be intubated if she has more seizures so they wouldnt lose her airway. Kassidy so far was doing great at protecting her own airway. So the Ambulance comes and Tayt lifted Kassidy onto the stretcher. She just flopped everywhere and it was one of the saddest things ever. My mom and cousin Amanda were helping me think of things to pack because Amanda was going to our place to pack the bags so that Tayt could just leave when he got to the house to pack everything in the car including our dogs. I was riding with Kassidy in the ambulance to OHSU. i just hoped for a smooth ride and that there was no traffic.

this is how i saw kassidy for the first time in madras

Well we had a smooth ride for the first part. Then when we were checking Kassidys vitals through out the trip her temp started to rise again. when we left if was 99* then half way over it was 101.7*, well about 10 minuets later we checked it again and it was 102*. We were in Sandy which is about an hour away and we told the driver to go full code and get us there now. So lights were on and sirens were blaring. about a minuet later Kassidy started to have a seizure. I threw my seat belt off and was on my knees next to the gurney trying to comfort and talk to Kassidy. They started the last medication that they could give her and we told the driver to get us there NOW!!! I called Tayt and told him what was happening. He was not far behind us and was going to meet us there at the hospital. I called my sister who lives near OHSU and was going to be meeting us there and told her to hurry too. Kassidy seizure only lasted 5 min that time, thank god. As soon as the meds kicked in it stopped. I had previously asked my Aunt who lives in portland how the traffic was so we would know and she said that there is a Blazer game and at the time that we would be on the freeway that we would hit traffic, well we did. I must say being on the floor and weaving in out of traffic was tough to hold on but I was not going to leave her side. When we started to go up the hill to OHSU I personally got nauseous, and then it hit me oh yeah im 7 weeks pregnant and oh wow those turns were killer on my tummy.

in the ambulance to OHSU

We got through traffic very quickly and when we arrived, oh wow I was not ready for that sight. There were 20 and i mean 20 (i counted them) doctors and residents there waiting for us. They wheeled Kassidy into the ER room and I pushed my way in there. I was not being pushed out of the way, I refused to let that happen. They immediately took her temperature and it was 103.5*. We were on the brink of another seizure, they had to act fast. They told me that if she has one more seizure there is only one more medication to try and that they would have to intubate her to protect her airway...... insert me freaking out on the inside but trying to remain calm. Here are a couple things that I forgot to mention earlier too. Her heart rate when the first seizure happened was 220 it then lowered to to about 170 when I arrived at the Madras hospital. Then it lowered to 150 and then her second seizure started and it went up to 170 again. Then lowered and when she was having her third seizure it went back up again. A heart rate of 220 is deadly for a 17 month old btw. Ok back to the story. They finally gave Kassidy Tylenol for the temp of 103.5. we were just praying that that might work. In the mean time my sister had arrived and I was trying to keep her calm and tell her everything will be ok after they had just told me they dont know what they are gonna do if she doesnt wake up. They did a chest x-ray to rule out pneumonia and a CT scan to see her brain.

Kassidy having her CT scan

 I kept telling them that the seizures were connected to her fever! They were listening but they were trying to find the source of what they thought was an infection. Since she was acting completely fine earlier we had no idea if she had an infection or not. Ok so more random info. Kassidy has only one vein, its in her forehead. that is how she has  always been. I told them a 100 times that they will not find another vein. they needed to draw blood and do a blood culture. They brought in the specialist and they couldnt find one, they used the ultrasound and couldnt find one. they tried next to her scalp and still no other vein.

They were using the ultrasound to try and find a vein

She did have what was called an I.O. in her leg but they couldnt draw blood from it. An I.O. is a large bor needle that was in her bone so that the ambulance in madras could give her meds fast. so they eventually got a tiny bit of blood out of a vein but that is all they could get. It was just enough. They then wanted to do a Lumbar Puncture to rule out meningitis.  Now Tayt did show up sometime when they were looking for veins. I told him that they were gonna do a lumbar puncter and how close we were to losing her. They checked her temp again and IT WAS GOING DOWN!!!! Thank god! we were out of the area of having another. now we just needed answers as to why. They had the specialist come in for the Lumbar Puncture. He said he never misses, well when he tried he missed three times and then another lady came in and she tried 2 times and she did get it. It was clear, no meningitis. They did a urinalysis and still nothing even though her white blood cell count was slightly elevated. So more random info. Kassidy had no pain meds during all this. She had a Lumbar Puncture with no sedation or pain meds. Kassidy did flinch slightly to pain but that was the only movement we had out of her. After all of these tests we were just waiting for an answer, besides the one we already knw. we knew it happened because of the fever and some kind of infection. They started her on a ton of antibiotics and we were just sitting next to her praying and holding her hands.

My sister took this pic as we were just holding her hands and praying that she would wake up. 

After this we were moved upstairs to the PICU pediatric intensive care unit. It was about 11:30pm when we got to her room. We were all so tired and we had to meet her new doctors and nurses for the night. Kassidy was blessed with her own nurse for the night. She was her only patient and that made me feel so much better. I was staying there with Kassidy and Tayt had the dogs and was going to the hotel for the night.  Well as Tayt was saying good night to Kassidy she started to WAKE UP!!! 10 hours later she opened her eyes! oh my lord i was so happy! I got my second wind at that point. My sister had to leave soon after and then Tayt left too. I stayed up with her until 1:30. She was groggy and in and out of sleep. Her temp was down to normal and they checked it every hour. The nurse and I had a deal that she would stay in the room with Kassidy as i tried to get some sleep. when she needed to take her lunch she would wake me and I would be up with her. What an amazing nurse to make me feel comfortable enough to try and sleep. Well the bed was horrible and i slept 2 hours then woke up. after that i slept here and there but all in all i got about 3-4 hours of sleep. At 6am went to her bedside and she woke up and looked at me and smiled! I knew she would be ok at that time. I called Tayt and he got ready and came to the hospital. I sent him this picture to wake up to.

Kassidy has a slight smile on her face and her eyes are open!

While Tayt was on his way down I was busy entertaining Kassidy. She wanted every wire off of her and was hungry. We were waiting for the doctors to come by before we tried to feed her. So i got her toys out of my bag and gave her my phone. She always loves my phone and she started to play peek a boo with it. She was back to her normal feisty self! We couldnt believe it! I got the ok to feed her and I got to hold her for the first time. I was in heaven and tears of joy flowed. When she was sucking her bottle i noticed that her sucking was a little off and not as good as it used to be. she was also a little more wabbly and her hand coordination was off a little. These are all things that can be helped with time and therapy. Her motor skills were there and she was reaching for me to pick her up and that was all i needed at that moment. 

She was still groggy but i was able to dress her and love on her while feeding her

this is supposed to be a video but if it doesn't post i will put it on her facebook page

When Tayt arrived she was able to play with him  for a bit and take another bottle. once she got 6oz down she didnt have to have the saline drip anymore and she didnt have to have her chest cords. only her I.V. on lock and her oxygen monitor, which was now on her foot cause she kept biting it off lol. Tayt was able to finally hold her and get her to sleep also. she was so uncomfprtable that she wouldnt sleep until like 1pm. But once she slept, oh boy was she out again. they decided to do her EEG during that time and she slept through it all.

such a sweet moment for them

this is her during her EEG with 30 wires attached to her head

My mom and sister came during her EEG. we got to visit and they got to see her. We had so many doctors in and out of the room all day. Some were saying that we were going to be discharged that day. some were saying we were being sent up to the Neurology floor for observation because they never see anyone bounce back so well from an hour long seizure. Well by 4pm we were told that we were going home by the chief of neurology. Dr. Ray was awesome! he listened and he said that he has never had a parent be wrong when they say that there baby is back to normal and that they want to go home. He also said that he would like Kassidy to be on seizure meds the rest of her life and we have a back up medication just incase of break through seizure. we also still have her on antibiotics for anther 5 days. All and all we had amazing nurses and doctors there that saved her life. I cannot be more grateful to them. Our nurse Michelle even went and got Kassidy stuff from the donation box because she knew that we didnt have even a blanket for her because we all left in such a hurry when it all happened. Kassidy at this time has made a full recovery. she is feisty as ever, loves food, and wants love 24-7. i cant believe this happened to us and i would never want that to happen to any parent. that was the scariest thing i have ever been through. 

Thursday, January 15, 2015

So much going on

Well we have so much going on in our lives these days that it is just hard to keep up with it all. Kassidy is doing amazing and growing like a weed. We have at least one to two appointments a week with physical therapy and occupational therapy. We have decided to do PT through Early Intervention and private insurance. This has made a huge difference in Kassidy's progress. She now has leg braces to help get her to stand and put pressure on her feet. She has what's is called AFO braces. They go up to just below her knee (no forest gump style). The day she got the braces we had PT with Michelle (who is amazing btw, if anyone needs a recommendation) and Kassidy actually stood up straight that day by herself for the first time. Who knew just putting on the braces would do so much in just one day. Other things that have been going on are she finally tonight actually liked a drink other then milk. I have been struggling to get her to like anything to drink. She hates water and juice but loves her formula and lactose free milk. So tonight I tried to give her some of my low calorie grape Gatorade, it's not as sweet as regular Gatorade. Kassidy does not like sweet stuff at all or cold stuff. So the Gatorade was room temp and I gave it to her through a straw and she actually liked it! I went to give her more and she actually opened her mouth up and got excited. She ended up drinking about 4oz of it. I am so excited that I finally found her something else to drink! This is what you would call an Inchstone btw.

I will try and post some pictures and videos when I get them edited of her drinking Gatorade and standing with her AFO's

More information to come as its all coming in to me also.

Karly 😃