Hospitalization - Again!

Caleb's second hospitalization lasted from Wednesday evening until Monday, when we went and picked him up. We found out that they decreased one of his meds and didn't titrate up his new seizure medication per the schedule his neurologist had given us.

Caleb came home on Monday and Monday night we had some issues over dinner. We knew things weren't going to be all rosey and we'd continue to have difficulty, but I think we were hoping that we'd have a good period for at least a short time. We made it through the issues and Caleb eventually ate.

Tuesday morning Caleb woke up and I took him to school. I received an e-mail from his teacher that he had fallen asleep at school in the morning, but had a good day overall. Shortly after getting home from school, though, we had to leave for a therapy appointment for Cassidy. I brought paper and crayons for Caleb, as I know that is something that he likes to do.

While we were in the waiting room, he dumped the crayons out and refused to pick them up. We were able to tell him to pick them up or lose them and he did it. When we got into the therapists office, things changed.

This is an e-mail about what happened as I updated people involved in Caleb's treatment:

Tonight (Tuesday) Caleb had an issue with non-compliance while we were at our daughter's therapy appointment. We attempted to take away his crayons that he had dumped on the floor and things went spiraling out of control. Things were so bad where he was hitting and kicking, throwing furniture, et cetera. The therapist ended up calling 911 and we had them transport him to the ER. While we were there he was completely non-compliant, but was not acting out. All of a sudden, he stood up on the bed, started screaming at the top of his lungs and lunged at his dad. I screamed and he started to lunge at me. The security guards were outside his door and came running in. His foot got caught on the bed and he fell, but fortunately landed on his butt on the bed. The security guards and one other man came in and held him down. They probably held him down for at least 30 minutes. The doctor came in and we talked to him quickly. The doctor ended up ordering a shot to calm him down.

I don't really know how it happened, but one of the guys holding him down somehow got scratched or bit and his hand was bleeding. We were at St. Joes ER Assessmnet Center until 10 tonight. They screened him for a state hospitalization, but Kaw Valley had no beds available. They couldn't find a bed anywhere else as well. The place that he was at wouldn't readmit him without talking to the treating doctor while he was there first.

I took Caleb home and got home about 11 and gave him another sedative to help us get through the night. We had an 8:30 appointment with his neurologist the next morning so we got up and headed to the doctor.

This is what happened at the appointment on Wednesday:

We arrived at Caleb's doctor's appointment this morning and things went downhill very quickly! He refused to get weighed and then things just got worse. Caleb started raging and kicking and hitting. We restrained him, doctor came in and tried to help. He even started banging his head on the doctor's table. Doctor tired to make some phone calls to see where we could get Caleb admitted.

The decision was finally made to admit Caleb to St. Francis in the PICU, which is where we are at right now. He has had to receive two shots to bring him out of two different rages where it was very difficult for us to hold him down. At one time we had four of us trying to hold him down. He has had an EEG today. Tomorrow he will be receiving an MRI. We hope that these will provide us some answers!

If these episodes are not neurological related, the doctors are going to try and get him readmitted to the psychiatric hospital.

This is Sunday night and we're still at the hospital and still waiting. The original plan was to get him somewhat stable and transfer him to a psychiatric hospital on Monday. However, his doctor pulled him off of the one seizure medication and wants to have another EEG to make sure the current med he is on is preventing his seizures.

We're all getting very stir crazy and ready for whatever the next step is.

The MRI was negative and nothing more was revealed that we could wrap our hands around and say without a doubt that was causing the problems.

I think that's about all for right now! We're still waiting for answers and a bed somewhere that will help Caleb!

Caleb's Second Hospitalization

Well, for the second time in Caleb's seven years, we had to hospitalize him at the psychiatric hospital. It was not any easier the second time around. This time, though, the most difficult part was we had to take him two and a half hours away. While it was at the same hospital Cassidy was at, it was still hard to take him and leave him.

Things have been progressively getting worse with Caleb since the end of July when his psychiatrist tried to take him off of one of his medications. We were going up on his new seizure med still. He had been doing really well and his doctor tries to keep the meds as low as possible. Well, that didn't work. We worked since that time to put him back on the med and, eventually, even increased it slightly and when that didn't work, we increased it again.

Everything came to a head Wednesday night when Caleb didn't like what I was cooking for dinner. He tried to flip over our recliner, break the glass on our three-way fireplace and then proceeded to attack me, not once, but TWICE. I knew then that we had to make that ultimate decision for the safety of everyone.

After a while we were able to get Caleb calm enough to put him in the van, make sure he wasn't going to take off his seatbelt, so that we could go to our local Crisis center. Once we got there he refused to get out of the van initally, but finally complied. I told them that we felt he needed to be hospitalized. She told me we'd have to go to Kansas City. I asked her about Stor-Mont Vail and she said she'd try them first.

They had a bed. So I ran home, grabbed some clothes and was going to hit the road with Caleb and N (our 2 year old foster son). I told them we'd be there about 9:30 p.m. Tony decided to go with me so that we could come home right after we completed the admission paperwork so that I wouldn't have to get a hotel room. I'm very grateful Tony decided to go with me because in spots it was raining so hard we could hardly see, especially if we were passing a semi!)

We have such great friends. One of them called and said she'd keep Cassidy and N for us so we wouldn't have to worry about them during the admissions process. We knew we had other friends and my parents praying for us during our drive. I gave Caleb his medicine before we left the house so he slept pretty much the whole way there.

Once we got the initial paperwork done, we went back to the unit, put Caleb to bed and completed the rest of the intake process. In all, the process took one and a half hours - much quicker than when we admitted Cassidy last November. We were back on the road by 11 and home by 1:30.

Thursday I was an emotional wreck. Every time I talked about what was going on I broke into tears. I called to check on Caleb. They told me that I could talk to him, but I didn't want to upset him. I was better that evening and tried to talk to him, but every time I called he was either in the shower or asleep. So I ended up going one whole day without talking to my baby! That was very hard on me.

When I talked to the doctor she said the only thing that Caleb could tell her was the he had a fight with Mom and Mom brought him there. That broke my heart to hear. I hope he knows that I did it to keep him safe!

The plan right as we know it right now is for Caleb to come home on Monday. They have decided to give him an ADHD medicine to see if they can't eliminate some of the impulsive behaviors he's been exhibiting there. They wanted to see how he reacted to it in the hospital. So far, they have not had any problems with him reacting poorly to the med. So hopefully that continues tonight and he can come home tomorrow! I want my baby home where he belongs!!!!

Well, I think that's pretty much it for right now. I'll try and post more later.

Life as a Foster Parent

Last July we received our foster care license from the State. On July 23rd, we received a call asking us to take two little kids, A (girl), age 2 and N (boy), age 18 months. We were told that the kids were in the process of being reintegrated with Mom and there were concerns about their current placement. The kids had been with
A's paternal grandma, who absolutely loves both children.

We had no idea where this would bring us when we started. We had always talked about adopting more children and knew, before Cassidy's adoption, that any other children that we would adopt, they would come from the state foster care system.
The children were moved into our home while Tony was on a business trip. They were very sweet and unsure about the move. Caleb and Cassidy took to them like white on rice. A was just enamored with Caleb.

Then we began the visits with Mom. I can't remember how many days after the kids moved in with us that I had to take the kids over to their mom's for a visit. It was very awkward at first going to meet someone to drop off her children. As this progressed, the kids started having overnights and weekend visits with Mom, who was due with her third child in November.

In November, Mom had a baby girl, B, and she is a beautiful little girl. The State allowed B to stay with Mom since there was a date set for the A & N to return home on December 8th. We were ready for the kids to move home and had prepared ourselves for it. At that time we'd been having a lot of difficulty with Cassidy and she had actually spent five days over Thanksgiving in the psychiatric hospital so we were ready to take a small respite from having any foster children for a month or two while we recovered from what had transpired with Cassidy.

Then on December 5th I received a call that a new allegation had been made against Mom and the kids would not be moving back on the 8th and their visits would be put on hold until things were investigated. At this time we were told that there was a chance they could bring the baby into custody and we were asked to take her. We said that we would.

Well, they didn't bring the baby into custody at that point, but Mom's visits with A & N went back to three hours a day, which made it difficult on us as I was never home because of the visitation schedule. We have learned a lot with this first set of kiddos and will not be volunteering to do the transportation when a parent has unsupervised visits with their child!

From December to March things were a constant change of visitation days and times and schedules. It was exhausting. The kids didn't know what was going on, A got more and more defiant and mouthy – Gee, I wonder who she learned that from, Cassidy?!

Then at the end of March, after Caleb had completed his second 24-hour sleep-deprived EEG that took place in the doctor's office, I had what was called a case plan, where everyone is supposed to get together and talk about the status of the case and what needs to be done pursuant to orders of the court. Caleb didn't go to school the day of the case plan because he was still too tired from the sleep-deprivation and I didn't want to push him. So I had to take all four kids with me to the meeting. I had to be there at 1:00, so as soon as Cassidy got off the bus we left. I got the kids some lunch, had the laptop and a couple of movies and we camped in the agency office for three hours for the case plan. The first plan was with A's father and grandma. They were able to see how all the kids interacted together for the first time. I knew that if the State moved forward to termination on A's parents that she would go to Grandma. I was able to talk to Grandma about the possibility of staying involved in As life if it came to the point she was moved there at the conclusion of the case. She told me she would most definitely allow us to stay a part of her life.

We completed Dad's case plan and then it was time for Mom's. While we were waiting I received a phone call from the family support worker. She asked me what I was doing. I told her that I was at the office waiting for Mom's case plan. I was told not to say anything, but that they were going to bringing the baby into custody. They wanted to know if we would take her. I told her that we would. I got off the phone and continued to wait for Mom to come. She never showed up. We completed the case plan and left with no phone call or no show from Mom.

I was told that they would call me when I needed to get the baby, but they needed to find Mom. I was told that all visits with A & N were on hold until further notice. I hadn't heard anything until I actually received a phone call that evening from Mom asking me if she had a visit the next day. I told her that the only thing I knew was that she was not going to have a visit because she didn't come to the case plan. She told me that she didn't come to the case plan because they were trying to bring B into custody and so she was at an attorney's office trying to see what she could do to stop it. She asked me if we had room to take the baby if she was brought into custody. I told her that we did. She told me that she was to be meeting the agency at the Children's Home in an hour with B.

I immediately called the family support worker and told her about the conversation. I was told to just sit tight and they would let me know what to do. At 10:00 p.m. that night I received the phone call that I needed to go pick up the baby. She has been with us since.

I had my first experience with testifying in a hearing in April, when they had the hearing to determine whether the baby was truly a child in need of care and she would stay in state custody. It was very difficult going in there and testifying against Mom, but I told what I had witnessed with A and N and B over the last couple of months, like how she's not changed diapers on N and ran out of formula for B. I spent all day at the courthouse and didn't testify until 4 in the afternoon. Talk about a long day!

There was a chance that Mom would relinquish her rights to A & N and work a reintegration plan for B, so they started increasing Mom's visits with B. I was told that Mom would need to do the transportation, which was good because I wasn't going to do it!

We have come to the point where Mom still is not doing what she needs to be doing according to the reintegration plan so we found out at pre-trial last month that the state is moving forward with terminating Mom's rights to all children. Termination trial is set for July 22nd. I received my first Subpoena in the mail last week and will be expected to testify against Mom again. I need to work on a summary of all my concerns and get them to the D.A. about a week before trial. Fortunately, we have a great babysitter that will help watch the kids that day. I just pray that we get a conclusion that day.

A was moved to Grandma on July 10th. It had become increasingly difficult to parent her and we are just spent emotionally. A's time with Grandma had been increasing and on the days that she couldn't see Grandma she would have hour long (plus sometimes) meltdowns.

I know I am posting this on the 22nd, which is after our termination hearing. I'll post an update later on this (hopefully, very soon! I'm going to go try and get the baby to take a nap so I can lay down for a little while before the other kids wake up!

Caleb Video EEG results & Med Change

Well, once again, it's been over a month since I've had time to sit down and write anything on this blog. Things have been very busy. The last time I had time to just sit and think and write was when Caleb was in the hospital having his Video EEG performed. Then I was so tired because there was no time for naps (they didn't want him to take naps and wanted him to stay up late so that he was good and tired most of the time so we could get accurate results.) When he got out of the hospital, it has been non-stop until now, July 22nd. (I had actually typed this up on July 4th while we were driving to Branson on vacation. But, as always, something comes up and delays me!)

When we arrived at the hospital for Caleb's Video EEG we were supposed to go straight to PICU to have Caleb sedated. We ended up not sedating him for a couple of reasons. The doctor that was going to do it really didn't want to do it, which was evident during our first initial meeting. While I was glad that she was being thorough, the way that she was going about it was very irritating. I had to explain Caleb's medical history to her over and over again. I had given the sedation nurse the information about Caleb's medical history when they had called a few days prior to admission, including all the information regarding the concerns the cardiologist had about the size of his heart and that he was cleared last year with no restrictions and only to return if he started having problems. Well, she needed the reports. I also told her that we had talked about putting him on Clonidine at one point and the cardiologist told us not to because of it being a cardiac medication. Evidently, the medication that she uses for sedation is not good if there is a cardiac problem. It took a while to get the results since the tests were not done at the hospital, but at the medical clinic that we go to.

By the time 11:00 rolled around they still hadn't done Caleb's I.V. and blood work that was needed to be done prior to the sedation. Finally, they came into do that and the EEG techs came in and explained how they would put the leads on Caleb's head. They related very well with Caleb and we all decided that we would let them try to get the leads on without sedation. I was so proud of Caleb. He listened to them and was easily distracted when they would use the air gun to dry the glue they put on the lead to his head. It took a little over an hour, but they got it done WITHOUT sedation!

Here is a picture of Caleb wearing his special hat!

By the time that they moved Caleb up to the Video EEG unit, I was tired and hungry. They brought Caleb some chicken fingers and I ran downstairs got some lunch. We then hunkered down for four days of constant monitoring. That first evening Caleb's neurologist came in and reviewed what was going on with his brain and also the lab work. We had not given Caleb his mood stabilizer, Depakote, since Sunday evening. Depakote is also an anti-seizure medication and the doctor didn't want us giving it to him while we were there so it wouldn't interfere with the test. It turns out that Caleb's ammonia level was more than double what it should have been, so the doctor discontinued the Depakote immediately.

After spending four days and four nights having 24-hour monitoring of Caleb's brain activity, we were able to go home on Friday morning. It was a long week for me, but especially for Caleb. He wasn't allowed to leave the room. He watched more TV that week than I think he has watched in his entire life. Caleb's doctor came in Friday morning and gave us the official diagnosis – Complex Partial Seizures. It seems that Caleb's seizures are all in the right temporal lobe. Although he does not have the outward signs of seizures – jerking – he has been having multiple seizures multiple times a day. We left with prescriptions for three different medications, one on a daily basis and two on an as needed basis, in case Caleb starts having Grand Mal seizures that last for more than 30 seconds or two minutes.

Caleb was placed on Lamictal, which can also be used as a mood stabilizer as well. The only downside to Lamictal is that you have to titrate up on it very, very, VERY slowly. Based on the discharge summary that we received when we left the hospital, the final increase would not occur until August 18, 2009, the day after Caleb starts school and we started him on the medication on May 29^th.

Since Caleb started the Lamictal we have seen a different child. There was about a week or so when Caleb would have difficulty processing things like what he would want to eat. He couldn't decide what he would want. We'd offer things that we know that he likes, but he didn't want any of them. One day we had an hour long meltdown because he couldn't decide want he wanted to eat. That has seemed to subside currently, but we have also seen a lot more compliance, especially when it comes to taking his medicine. He is offering to do chores, all by himself. If we ask him to do something, he replies that, “Sure, I can do that.” Watching how he is now compared to what we have been through with him since he was 15 months old, I just want to cry. We're seeing, what my wonderful friends in the CABF parents of young bipolar children have termed, “Sunshine,” which we have not seen in a long time!

When we went to Caleb's follow-up appointment, the doctor even commented that Caleb was calm.

Moving Right Along

Well, it's now 4:30 and Caleb and I are at the hospital just waiting. We've been here since 7:30 this morning. They were supposed to start his sedation at 9:30, but the doctor really didn't want to do it and said she wouldn't do it again if he wouldn't leave the leads on. That started the tone for the morning with her.

I had provided all the health history to the person who called on Thursday to do the pre-sedation stuff. But at 8:10 this morning they decided they needed to get the pediatric cardiologist's report from Caleb's last echocardiogram and then wanted to get the records regarding his reaction coming out of the anesthesia during his surgeries. Then after once again discussing his health history she made an off-hand remark to the nurse that it was getting more difficult as it went along. Well, I'm sorry my son has had asthma, has had a doctor concerned with the size of his heart, the fact that he's had difficulty with waking up from anesthetic in the past. Normally you wouldn't be able to get near him with an air gun, but today, for whatever reason, he surprised me by allowing them to do it. The techs were absolutely wonderful with him!!!

So here we sit with the leads attached to his head and him coloring waiting for something to show, hoping it shows sooner rather than later, hoping we get some answers.

At the Hospital

Well, Caleb and I are at the hospital. We've been here since 7:30 and it is now 9:20. They're supposed to start the sedation for Caleb's Video EEG at 9:30; however, because of his past medical history they're waiting for some paperwork from the Clinic so who knows when we'll actually get started.

I've already had attitude from the doctor doing the sedation and I'm ready to do some screaming if that's what it takes! We'll be here from one to three days. Hoping for some answers! Will update more later!

EEG - Again!!

Well, it seems like I never have time to come here and post anything, seeing as how the last post was in November and that's when Cassidy was in the hospital. She's been doing a lot better since she's been home from the hospital; however, we still have our ups and downs!!!!

Now, to the point of this post. Tonight, for the second time in his short 7 years, we will be attempting to keep Caleb awake for 24 hours for a sleep deprived EEG! He's been having situations where he is spaced out for a short period of time and he will wet himself. I brought it up to the doctor at his last appointment and she wanted to get another EEG. She said it concerns her that he doesn't seem to realize that he's wetting himself. She also said that it sounds like petit mal seizures. What concerns me about that is one of the medications that he is on, Depakote (and takes 1125 mg a day!) is an anti-seizure medication. The procedure three and a half years ago showed no seizure activity; however, I've read that sometimes it can take two or three normal EEGs prior to seizure activity showing up.

I'm trying really hard not to worry. I'm praying that we can get answers to what's been going on with our little guy. He's had so much in his short little life and would like him to be able to catch a break!

I will do my best to update on here when we know something. I also need to get on here and post some pictures from the last few months. The kids are really growing up!