Neurologist

I am happy to report went very well! He had his EEG redone- which he hated every minute of and then we met with the neurologist. His EEG was normal again- yeah! The Dr. explained it to us like this- 1 out of 50 kids have a seizure- 50% have no real reason why they had a seizure. This is Ryan. His brain is perfect! No problems with development, function, or abnormalities. He just has seizures when he is sick. The neurologist feels Ryan will outgrow them by at 2. Ryan will stay on his anti-seizure med to prevent him from having a seizure when he gets sick- cold/flu season is right around the corner. He has an appt. 1/29/08 and if he is seizure free from now till then he will be taken off his med. Ryan has been such a good little boy these last few days! He is my life and I wouldn't know what to do without him! He did learn "Mine" today- which I thought you are soooo a toddler! Thank you for all your support, thoughts, prayers, well wishes!!!!!!!!!!! I appreciate them very much!

Follow up appt.

Ryan had his follow up appt. today with our Pedi. He weighed 22 lbs. when we left the hospital (had gone in at 24lbs. 10oz). Today my little piglet weighed 25lbs. 10oz. He gained 3lbs 10 oz in 6 days!!!! I knew he was eating well, but goodness. He is still a little crabby, but the Dr. explained that he is pretty much going through something similiar to post traumatic stress disorder. Tomorrow he has is appt. with the neurologist and a repeat EEG, so the Pedi. said it will probably be pretty stressful on Ryan and he will be crabby for a while yet. We don't think it is related to his seizure med at this time. He can be very happy and playful, just when he wants something he has no patience and has a huge meltdown- not like Ryan. The Dr. said he probably regressed some too.

Update

Ryan has been very whinny. Now, I know he is still recovering, but I am trying figure out what it is from. His anti-seizure med has a side effect of crabbiness which they told me to watch for. I can't decide if this is just a phase or if it could be from the med. He is sooo sensitive- even if I look at him wrong he whines. He is happy for the most part and has always been a happy kid. I am guessing it is because he is still recovering.

Home from the hospital

He is HOME!!!!Ryan was discharge today at about 12:30. He is doing great! He is sleeping on the couch and he is oh so cute. So nice to see him there! I hope to get some pictures on here real soon! Oh- get this the meds Ryan has to have if he is having a seizure cost $279.00!!!! I almost fell over when they told me. This a one time dose that I give him if he should have another seizure. He is on anti-seizure meds so hopefully we won't ever have to use it. I was going to get 3 of them (one for our house, one for grandma's and one for daycare). But the cost of one is high enough. I have work off until Sept. 4th. RJ has the rest of the week off. Ryan has his dr. appt with his regular dr. on the 28th and then the big appt. with the ped. neurologist on the 29th- he will determine if Ryan has a seizure disorder or not.

Awake at 1 am

Ryan is awake and eating- now normally I wouldn't be so happy about eating at 1 am, but anything to go home right now is fine by me. He woke up when they were doing his midnight vital signs and cried and cried. I couldn't figure out why he was so sad- well, 4 crackers and 1/2 carton of milk later and I have a much happier child.

A beter day

Ryan continues to not want to eat or drink, but he is doing much better in other areas. He was feeding me his muffin this morning and getting his eggs on a spoon by himself. He stood up by himself and he is crawling. He has taken some steps, but with lots of help. His IV came out at 6 am and the dr. is going to let us leave it out until this evening in hopes he will start drinking. He isn't shakey anymore- huge relief! He hasn't talked yet, but is making noises. He doesn't like his room, his ID band or the nurses. I am feeling so much better than yesterday! So, now I ask that you guys help me cheer Ryan on- "lets drink, let's eat, so we can go home!"

A hard day (for mommy)

I am having a hard day today. I was hoping when Ryan woke up this morning he would be less shakey- no such luck. I just want my baby back! I know it has only been 48 hours since he has been off the meds and had his breathing tube out, but this is going much too slow for me! Ryan isn't talking- makes a few noises here and there. He can't roll over, stand, sit up very long, and he has a very difficult time controlling his tongue. I keep feeling like I am going to take a completely different child home. They tell me he will get better and will be back to where he was developementaly before all of this- but it is very hard to believe. I try to stay strong for Ryan- because I know he needs that. I go home everyday to take a shower, feed the cats, and check on the house. Just to get out of the hospital for awhile. Maybe once PT/OT comes I will feel better.

Out of PICU

Well, Ryan is 18 months old today. He was moved from the PICU to a regular peds. bed. He would not have been moved today, but he was doing well enough and a sicker kid needed his room. Ryan continues to go through withdrawls- spacey and shakey. He is getting better- it is just a slow process. He started drinking better today- makes us very happy to see. He is very weak and will start PT and OT tomorrow. He can hold his head up on his own, but needs lots of support to sit up. He tries to grab onto things, but isn't able to pick them up. Still not sure how long he will need to be in the hospital. He also has a very hard time falling alseep- part of the withdrawls. So, I layed him down and hopefully when I get back to his room from writing this he will be sleeping. RJ and I are starting to get a little testy with each other, but realize we are doing it and try to take it easy on each other. RJ is taking a nap with Ryan, so hopefully he won't be so crabby. That's all I know for now. I hope everyone else is doing well.

Extubated

Ryan was extubated (breathing tube out) at 9:30 this morning!!! He is going through drug withdrawl and is pretty jumpy at any little stimuli. This will pass in a day or so. He will get to eat something later today. He is doing really well off of the vent. He is breathing really well. I am so happy to hold him my arms again! He will stay in the PICU until tomorrow and then will get moved to the reg. peds. floor. He will probably be there a day or two. I just took a quick break to update and eat. So, back to my little boy. Thanks for all the prayers- they really do help!

Update

He has had a very good day- he has been able to rest and continues to get better. The dr. is thinking that he could possibly have his breathing tube out tomorrow evening or Sat. morning. Then he has to be okay for 24 hours with the tube out and he will get moved to a regular peds bed. Then he has to be strong enough to start eating again and back to himself. So, we will be here until next week, but we are making progress. I am just so glad that he rested today- yesterday it was 3-4 people holding him to the bed.

Code Blue

We had a scary morning today- they ended up calling a code blue. Ryan's steriods are starting to work and because of this he has lots of room around the breathing tube. So instead of the air going to his lungs it was leaking out into his mouth/stomach. His oxygen sats dropped (60's) and then his heart rate dropped (80's). He should be 94 and above for his oxygen and 130's for his heart rate. The called a code blue and then took out his breathing tube since it wasn't doing any good and started bagging him. Because he is sedated he takes some breathes, but not enough. Thankfully we are right next to the NICU and the NP came and put a new breathing tube back in very quickly. He is back to his normal/good vital signs and sedated. They all did a very good job and I was very happy to have the night nurse we had- she is excellent!

Update

First, THANK YOU all of you for all the well wishes and prayers! Ryan is about the same. He is starting to need more sedation and wakes up easily. He is very strong and takes 3-4 people to hold him still until they can give him more sedation. He pulled both IV's out- he had one in each hand and now has one in each foot. The neurologist came and we have started him on a low dose of anti-seizure med. He will be on this until we go home and then go to the Twin Cities to see a ped. neurologist who will repeat his EEG and decide if he needs to stay on the med. I am very tired- I have helped hold him down a lot.

Caringbridge site

Dear Friends and Family, I created a CaringBridge site to keep you up to date on Ryan Beehler. CaringBridge is a nonprofit organization that helps friends and families stay connected.You can visit Ryan's CaringBridge site at http://javascript%3cb%3e%3c/b%3E:ol(.If your e-mail program does not allow you to click on the above link, just copy and paste the address into your web browser's address (or URL) location.Please visit our CaringBridge site anytime. You can use the site to check in on Ryan, read the journal entries and send us messages by signing our guestbook. When you register with CaringBridge and sign our guestbook, you will automatically receive e-mail notifications each time our journal is updated. Or, you can subscribe to receive these notifications even before you sign the guestbook. (Of course, you can unsubscribe from these e-mail updates at any time.) Please print and save this e-mail for future reference.CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery. http://javascript%3cb%3e%3c/b%3E:ol(

3rd seizure

I don't know how to even start this- so here goes.
2:30 am Tuesday August 14, 2007 Ryan has a fever and a bad cough
6:30 am Tuesday Ryan continues with his fever and cough- made Dr. appt
10 am Dr. appt. Ryan has the beginnings of Croup (where your upper airway swells- barky cough) She sends us home with a steriod to help open his airway
2:30 pm Ryan cries everytime he coughs and is having a harder time breathing- I am having a very hard time getting meds and fluids in him
4:30 pm I decide it is time to take him to the ER- I wait 5-10 minutes for my dad to get home from work to come with me
4:42 pm- Ryan start to seize and I call 911
Ryan had a seizure for 20 minutes- they gave him medicine to stop the seizure, but because of his croup he is having a very hard time breathing. In the ER they decide it is best to put in a breathing tube, sedate him, and help him breathe. So, we are in the ICU and Ryan continues to be sedated and on a ventilator. He had a good night and now we need the swelling in his upper airway to heal. The neurologist will come see him today and decide what needs to be done about his seizures. I am sick to my stomach trying to keep it together. Please keep us in your thoughts and prayers.

My perfect little boy!

Ryan's EGG and MRI are NORMAL!!!! So, his seizure were just febrile seizures and nothing else. I am so relieved! Thank you to everyone who kept us in their thoughts and prayers!

EEG

Ryan had his EEG today. We got up at 4 am and had to stay awake unitl 7:15 for the appt. He did really well. I won't find out the results until the end of this week. I haven't heard when the MRI is and I will be calling them today to find out what is going on with insurance.

Met with the peds dr.

We went to see a Pedi. at 11 and I am still a little numb about what we decided to do. Ryan will have an EEG and a MRI done. I am glad something is being done, but kinda scared at why it is being done. His Dr. is concerned about the type of seizures he has had and think we need to check things out some more. When Ryan has a seizure his eyes have gone up and to the left- this doesn't normally happen with a febrile seizure. She is also concerned with the onset of his seizures- usually with a febrile seizure the child is sick first- Ryan has not be sick until after his seizure. I am sad that Ryan will have to be sedated to have his MRI, but as a nurse who use to do the sedation, I know it is a routine easy thing to do. The clinic has to call me when the EEG is scheduled and the MRI has to be approved by insurance first, so I don't know when all of it will be done yet. If Ryan is to have another seizure lasting more than 2 minutes we are to call 911. I really hope we don't have to think about that. I felt very comfortable with this dr.- she sat and talked with me for almost an hour! Ryan is back to his usual self- going after the cats and messing up the house!

Update

I will know more tomorrow hopefully when I take him to the pedi at 11am. He is finally acting like himself again- takes him 2-3 days to recover. I got out my ped nursing book and a couple other books I have and I am not as freaked out. But, I still have one big question and that is why is he having a seizure at such low temp.? Everything I read said that they don't usually have a seizure unless they are 102 or higher. Ryan was 99.2 and 100.4. Doesn't make sense. He had a rash on his tummy and neck last night, but that has gone away.

2nd seizure

I went to work Friday at 2:30 and by 4pm my daycare lady was calling me with news I didn't want to hear. Ryan had his second seizure- febrile. I left work and brought him to the ER. Where we waited for 2 1/2 hours to before a doctor saw him! His temp. was 100.4 by ear at daycare. I gave him some tylenol before we left daycare. At the ER he was 99.2, but 2 hours later he was 100 again. Which isn't very high, but Ryan apparently has a very low tolerance. He still isn't 100% back to himself. The Dr. said he probably has something viral and if he has a seizure again I can just watch him at home- that I didn't have to bring him in. I don't know how I feel about all this. I know this is a common childhood thing, but I feel like it shouldn't be just brushed off like it is no big deal. I am worried about my little boy! I have been just taking him to family practice dr. , but tomorrow I am getting him a peds dr. I need to know that this is just a febrile seizure nothing else. They did no tests at the ER.

Update-15 months old

We are back from his appt. and everything went well. He is still my peanut. 22 lbs. 6oz and 31 inches. His development score showed him doing things at 18 month level! He got two shots- did pretty well. His right ear that has been red (not infected) for months now finally cleared up- very happy about not needing tubes!

Update

Ryan's appt. went well. We are to continue his antibiotics for pneumonia and just keep an eye on him. He hasn't had a fever since Sun. He does act like he doesn't feel the greatest. He has a runny nose and gets tired easily. I wish we would get some warm weather, so he can get over all this yuck! We are suppose to get 6 more inches of snow by tomorrow- grrr

1st seizure

Sat. started out a normal day and ended in the ER. We went to RJ's family for Easter lunch. Ryan ran around, played with the cousins, and ate an okay lunch. Then we went to my parents' house for Easter supper. Ryan was getting crabby and I thought it was because he was getting hungry. I put him in his highchair. RJ was sitting next to Ryan and feeding him supper. He acted like he was done eating and getting fussy. I gave him a spoon to keep him happy until we were done eating. 10 seconds later my sister said what is he doing? I looked over and he was having a grand mal seizure in his highchair! I took him out and started doing back thruts, not sure if he was choking or not. I laid him on the floor and he continue to seize. His eyes were rolled back and to the right, he was arching his back and his arms and legs were straight out and shaking. RJ called 911 and they came very quickly and took him to the hospital. Ryan has been healthy. They took blood, started an IV, put a bag on him to get urine and took an x-ray. He has pneumonia. He had a febrile seizure- he temp was only 99.3 under the arm at home after his seizure and 101.2 rectal at the hospital. He came home that night and is on antiboitics. RJ said it took 15 years off his life- he was pretty scared. I thankfully have seen seizures before, eventhough it was MY son having one, I kept it together until we got to the hospital- then I was in the bathroom- sick to my stomach. I took work off today and we have been sleeping together on the living room floor. He gets around the clock Tylenol and Motrin for 48 hours. He started coughing today and is stuffed up. He goes in for a Dr. appt. tomorrow. I am a paranoid mom now- watching him and feeling him to see if he is even a little warm. He even knows what to do with the thermometer- puts it under his arm- so very cute!