It worked

To my amazement the pheno change seems to be helping. I really didn't think it would since the dosing is the same but I guess I was wrong. I don't mind being wrong on things like this. He has had some slight twitching only lasting a minute or so.

The only drawback with having an a.m. dose is he is sleepy. I hope he can adjust better to the medicine and not be to sleepy when school starts, (august, 22) If it is a problem I can always bring it up to the epilepsy doctors.

Jordan is otherwise well. His daddy left for his last day at the builders, and starts his new job tomorrow. He is awake in bed getting his morning medicines, and lets hope & pray for no seizures.

Daily seizures

Jordan's doc called back & the earliest they can get Jordan in to the epilepsy clinic is September 5th. Too long in my opinion. He needed Diastat again yesterday. What appears to be happening is Jordan is now having seizures almost every day. The ones which require Diastat are more intense and last longer. After giving Jordan the Diastat, he sleeps for a while then wakes up sleepy but more alert. For one to two days following Diastat, Jordan still has the same seizures. They are just less intense & start to ease after 3-5 minutes. By day 2 after Diastat, the seizures gradually increase in intensity & frequency until day 3, then he will just have seizures & sleep if I don't give him the Diastat.

I mentioned to the doctors office that I think September is too long to wait. Doc said to split his phenobarbital dose so he has 30mg in the morning and 60mg in the evening. Although this may help a bit, it is still the same dose & the phenobarbital is obviously not working. I was told to give the pheno change 2 weeks, and check back with the office. Not acceptable to me.

I called every children's hospital with an epilepsy clinic in chicago & they all have even longer wait times. Today should be a good day for Jordan since he still has some Diastat in his system to keep the seizures down. I will try and get him out & about.

I have thought of taking him to the ER with the next bout of seizures come Monday, but they will most likely treat him with medicine (like I am doing with Diastat) and when the seizure stops, send him home with instructions to call his neurologist. I will be calling the office again Monday to try to get in earlier. I was advised to call the office everyday but I have already been told to give the medicine change 2 weeks.

He has not had an EEG in a while. I want him to have a 24 hour EEG, there are other meds and treatments for this. It is not fair that Jordan should have to suffer.

Epilepsy

I spoke to Jordan's Neurologist's office & he wants to increase his evening dose of Topamax by 25mg. He also is referring him to an epileptologist. I should be hearing back this week or I was told to call back by Wednesday. Doctor is writing a referral letter with history & explanation of what has been going on with Jordan.

For reference; epilepsy-these links help to describe things better than I can.

Jordan did have another episode this morning & I am concerned for him. I hope the office calls soon to have Jordan see the new specialists. I did express a tone of urgency, I usually do not overreact, but I mentioned these episodes are worrisome.

God did answer our prayer in that Jordan's doctor is wise enough to send Jordan to a doctor who specializes in his condition. I was worried he was going to want to try more meds, or different meds (many past docs do that), That can take a long time & take a toll on Jordan. We don't want him sedated, there has to be a way to treat these seizures so Jordan can still be alert & active & able to enjoy the life around him.

Well, I have to sort through my thoughts & notes & put together information for the new doctors. They typically have tons of questions and it is best to be prepared. I outline a brief history, explain the episodes, note dates and severity of episodes & just try to give them a easy to follow chart with any signs of patterns or not. I'm confused just thinking about it. I'll sort it all out though, I always do. And now I have the help of Jordan's nurses to help me sort through all the notes, dates & everything. They are awesome.

I will update with any big news, feel free to drop an e-mail even if you just want to check in. Jordan has been good this afternoon. Not as active as we like but awake & aware of whats going on. He is coherent & comfortable. I may take him to Justices soccer camp tomorrow. He was giving me a sad face today & making big sighs. I went through a list of "what's wrong, is it....???" And when I got to , "did you want to go to soccer camp?" He stretched his legs, banged his arms & made a funny face, that was a yes.

Still have seizure problems

He had a few more today. One was mild, 2 were pretty bad but at 5 minutes they started to ease and taper off. He has been quite sleepy. He does wake up & is alert but not to active. Any other ones I noticed were quite mild and only lasted a minute or two.

For Jordan, a mild seizure is when just his head is slightly twitching & the corner of one side of his mouth, it only lasts a minute or so and is not a very strong twitch. Any stronger or bigger type of seizure would be as strong as the twitching would be, and has also included his one arm twitching or a tremor. When his body becomes stiff with this twitching taking place, I consider it a more severe seizure. His eyes also dart and move to one side and his may smack his mouth. By neurological standards it may not be a major seizure as it is not convulsive, but it is bad for Jordan's standards.

I did put in a call to the doc & should hear back tomorrow. I have not had to give Diastat yet today, but if he has any more I will have to. He has been in good spirits, giving me such a sweet smile. But I know these are tough on him.

Jordan does have a nurse scheduled tonight so someone will be here & awake to watch over him. Say some prayers for our little peanut, that he can overcome these episodes & his doctor takes care of him and gives Jordan what he needs, so he can go back to enjoying life without worry of having fun causing a seizure. So he can be awake & alert to see all that is around him and still have the strength to participate & play. Scroll down & look at that big giggly laugh in the zoo day post, there is a picture, on the way home he had the giggles, thats what I want to see.

Much better today

Good morning. Jordan had another restless night but, he did sleep all day & with such a big seizure he may have been uncomfortable. His night nurse gave him some Tylenol which she said seemed to help. He woke up good this morning, asked for his teeth to be cleaned (by smacking his mouth) and has been alert, active & very happy. Look at those numbers on his pulse/02 monitor. Can't get any better than 100% He is watching wonder pets & very content. He did have the dose of Diastat yesterday & typically when these seizure episodes come in waves, the diastat will last into the next day.

Tonight, we do not have a p.m. nurse scheduled so I will have Jordan in bed with me. He's snuggly. I will be gone this afternoon getting my hair cut & a long overdue visit with my sister in law.

update for Jordan

Jordan is a bit better now. He finally woke up & has his eyes open & looking at me. He is much more alert and sitting up in his recliner. Not as active as I like but he has not been all that active for months. His brain/seizure activity seems to have returned to his normal although, there is still Diastat in his system. We will keep watch over the weekend & keep updates as they occur. For now he is doing well.

Staying home today

Jordan had a rough night. He was uncomfortable, grimacing and restless a good part of the night. He had more bowl movements & they were large and not him norm. He woke late this morning and seemed to be gasping & scared. His stoma by his trach has a red spot. We changed his trach to be sure he was ok, and gave him some cuddles. He began to have a different type of twitching & tremors. He did have another seizure. The last couple days he has not been quite himself but not enough to say what or if anything was wrong. He did have some increased twitching yesterday but they would go away on their own, he was also unhappy.

Sometimes it is really hard to tell what is actually going on. I don't think he is sick at this time. But something with his brain & seizure activity is happening. I called his neurologist & he won't be in until Monday. I would rather wait it out until Monday since this doctor knows Jordan & his history. I would not want someone else adjusting his medicines, which is what it is looking like what might be needed. We gave him Diastat this morning & he is resting comfortably now.

We all hope & pray for no more episodes this weekend. This morning was different than his usual episodes. I am not sure what could be going on with him but I will defiantly be consulting his doc on Monday. I have the weekend to get my thoughts together, go through old notes & hopefully by Monday after talking to doc have a plan to help Jordan.

I started this blog this morning. Justice has been a computer hog. It is now 3:30 p.m. and Jordan is still sleeping. He was up all night & did have a seizure & diastat which is enough to make anyone sleep all day. I will be keeping a close eye on him & hope he wakes up later, or gets back to normal by morning. If not he is going to have to go to the hospital. I don't think he needs to yet, but as I said these episodes were a bit different.

Right by my side & sounds

Since I have been spending a bit more time on this computer, I thought I would share my beautiful view I have as I am typing here. I just have to turn my head a bit to the right & this is what I see. A big smiley boy, trying to get my attention, and usually successful at it.
He is in the recliner part of the couch & when it is reclined down, he is right there, by my side. The computer is just behind the couch.

Jordan has been doing very good this week. We have had no issues or seizures.

He has been wearing his PMV.
And has been more vocal. I love hearing his voice. I have missed it so much this past year. He mostly makes cooing and ahh sounds. I can see him trying to form words with it also. He is practicing very hard. He wore it for 2 hours the other day. Unfortunately it dried up his secretions. (He typically uses his HME which helps keep his airway moist and filtered.) His voice is like music, he gets a charge out of himself. He also can make sounds without the PMV. Many of his nurses say most kids with trachs figure that out.

Tomorrow we have a outing planned. We are going to be meeting up with some other parents and kids with some similar situations as ours. It is a bit far but will be a nice outing. It is at a forest preserve & we will be having a picnic. I will post when we are back & of course bring my camera.

Seizures

I did not get a chance to post yesterday. Jordan had another seizure & required Diastat. I have not posted on this blog his seizure history so here is a brief background.

In march Jordan began having several seizures, almost every day or so. He never really had seizure issues in the past other than fever or trauma related. Calls to the neurologist and increasing & adding seizure medications seemed to help them. He would still have mild seizures daily, but they would go away on their own.

After consulting with his neuro doc, it was discussed that if we medicate more to make the seizures go away completely, he would be too drugged & listless. Therefore, it was decided to keep him at his current dose, allow some mild seizures, so that Jordan may have a more active quality of life. However every other week he has had the larger seizures, they don't go away on their own, & diastat needs to be administered to make them stop.

Yesterday was one of those days. The seizure & the Diastst make him very sleepy.
He slept up until mid afternoon, then woke & was in good spirits. I will be calling his neuro. doc. tomorrow, just to see his take on things. Chances are he will say the same thing as before & I agree. Jordan has not been this active, alert & happy for a long time.

He enjoys life & takes everything in. I can not deprive him of that. I will just have to space out time frames between known stimulating environments.

As evening came, my friends came by. Adrienne & I stayed in the house to watch over Jordan, the boys set up the tents & made smores. See Justices page for his updates. After a while, the boys came in & watched movies & we adults played cards. It was a very nice evening.

Jordan went to bed around 8:00p.m. and had a good uneventful night. Today we will be going for a walk & play in the yard, something calm for the peanut.

Zoo day

What a perfect day. The weather was perfect & everyone had a great time. Jordan loved it. He liked the dolphins the best. We sat in the front row.
He doesn't look to excited in the picture, but once I put him back in his chair, he could relax & watch. Every time a dolphin would jump up out of the water, he would turn his head & watch it. When they were up on the island in the middle, he would watch them then. I have never seen such good tracking from him.

Some of the far away exhibits were difficult for him to see & find the animals. We did see some where he could find them, usually the bigger animals. The giraffes, he could see & would watch them. At the petting zoo he could see the goats because they swarmed him.
(goats like wheel chairs)

He touched a leopard fur, when the zoo person was near & all the kids were touching the patch of fur, Jordan held his hand out, then he wanted to touch it again.

We went into the butterfly tent, (which no one was excited about but me) and a butterfly landed on Jordan's toe.
There was a family play center, and a kids chat about snakes. Jordan touched a snake. That got his attention. He was awake the whole time except for a few 5 minute naps, we would be walking along & all of a sudden I would see flaying arms & kicking legs. I would stop to check on him to see what was wrong & he would be laughing. He was so excited & happy. I have not seen him like that in a long time. He had the giggles the whole way home.

It was wonderful to see him that happy.
It really made my day.

I will post Justices zoo experience on his page, there is a link to it over to the your left of this page, it says justice michael, just above the archives.

I can not wait to plan our next adventure. To see my kids that happy is all I could ever want.

Zoo trip planned

Jordan just left for his last day of summer pre-school. He was all smiles & happy. Tomorrow we have a big day planned. Daddy is taking some much needed time of work. We are all going to the zoo. The whole family! I am so excited. We have not done anything like this, all together in a very long time. Look for lots of pictures & a recap of our day. The weather forecast is calling for a wonderful day. With the whole family together it is bound to be wonderful anyway.

Post Tracheostomy

It was less than a week post tracheostomy & Jordan began healing & doing much better.
Jordan came home August 30th. Life as we knew it had changed. What followed was a long winter of more illness & hospital stays. Mostly respiratory & tracheal infections. Jordan also started having more seizures without having fevers. Medication, and some time seemed to help those issues. Late October began nursing help which was a disaster until I switched agencies in February. I am currently still with that new agency & it's working out.

Over time Jordan became more stable. His seizure med's & breathing treatments have been changed. It seems we have finally found the right mix. I was now able to focus on his development again. I had since requested a lowering of his Baclofen medication, which will increase his tone but allow him more strength & less sedation. He seems much more happy & alert.

Jordan still has a GJ tube & receives all nutrition & medications through the J-port. Only his stomach med's go into his stomach. It has been decided to just let Jordan be healthy for a while & address the stomach issues later. All tests and scopes come back normal. There is no answer to this day, as to why he can not feed through his stomach, but he is getting enough nutrition and he is happy & healthy.

My how perspective has changed. Jordan started out with a diagnosis of Cerebral palsy, reflux & a g-tube. After the fundo, everything was great, for 2 years. Then, it was a long agonizing year of unexplained vomiting and respiratory illness & surgeries. I just wanted Jordan back to the way he was. I had finally come to terms & accepted his challenges, and how life would be for him. Then it has all changed. I looked at it as he was getting worse. Until I saw how he gained weight. In fact he became overweight & we had to cut back on feeding. I saw how once the winter season ended, Jordan became more stable. It was easier for him to breath. He didn't have to work so hard. He needed time for the trach to do it's job. He needed time for his body to adjust to his environment, everything was different. He needed time to heal from so much time of being sick.
Jordan has finally become healthy.

Tracheostomy

Tracheostomy. That was the end result of a summer long hospital stay. I could go into the details of all the tests & procedures leading up to it. How the doctors tried every other option to avoid it, but many of those details are also a bit of a blur. Even to me, who knew nothing of what a tracheostomy was, I knew it would help Jordan. He was not getting better.

July 26th he had a T&A. Because Jordan was so sick & unstable, he did not fair well coming out of anesthesia. Another memory I have of that summer, is seeing my peanut not take a breath on his own. He was intubated, and used a ventilator to breath. He has several bronchoscopy's, these showed his airway was not healing from the previous surgeries, the tube in his throat was continuing to irritate the site. When they would reduce Jordan's sedation, he would become agitated & move about making the healing process more difficult. When he was sedated, he wouldn't breath. The only way to move on with the healing process was to place a trach. This happened the 2nd. week in August 06.

Spring 2006

All was good for two years. No vomiting. My only concerns for Jordan in that time were leveling his medications, getting him to therapies, and trying to get him to feed orally. Then, in April of 2006 he suffered his first pneumonia. For the next two months he would be a sick little boy. He had his first fever seizure.

Some of the times between April & August of 2006 are a blur, but some things are etched in my brain forever. The day he had that seizure was one of those. I took him to the ER, an hour away because the local hospital could not take care of his complex issues. I was alone with no help and had to bring Justice with me. Justice is the reason I can't forget it. He was so scared for his little brother, he didn't even want to look at him. He turned down a Popsicle, and just wanted to "run away" I had to give doctors information, medications & history while Justice was in a near panic. Because I had to keep him from running away, I could not be there for Jordan. He was being treated at that time. I remember standing in the doorway of Jordan's ER room, Justice clung to me all arms & legs, with about 5 people trying to get information from me.
After they finally got Jordan stable, I told Justice "Jordan was ok now" & then he went in his room. He still didn't want to look at him but he glanced to be sure he was still there.

During the spring of 2006, Jordan was in & out of the hospital. On June 16, he began vomiting again. Which led to more hospital visits. More pneumonias, more fevers, and changing doctors. We were given oxygen and a pulse/02 monitor. His vomiting never stopped. I had thought he needed the fundo repaired. While trying to get answers to Jordan's GI issues, his respritory issues began to take precedence. Because he would not keep any nutrition down, they gave him a
picc line and he received his nutrition TPN.


Eventually he had a GJ tube placed. He was sent to Chicago to have it placed. Jordan was home for about a week and the catheter recoiled.
The food was being fed to his stomach again, so naturally he began vomiting. After being in the hospital for so long, and continued vomiting, when the catheter in his GJ tube recoiled again, I had him transferred to Chicago.

This began a two month stay in Chicago. A team of specialists looked at all of Jordan's conditions but again, respiratory issues took precedence.

After the fundo

Jordan recovered well. He was in the hospital 2 days. Tylenol was all that was needed for pain and he handled his feedings great. Of course we had to continue slow feeds, with such a fresh procedure but in time, a gradual increase would bring him to a calorie intake that was close to where he needed to be. His stomach would only handle a certain volume at a certain rate (can't remember the particulars) As time went on the rate and volume would increase.
Jordan began gaining weight. Jordan stopped screaming. It was a miracle.

After several g.i. doctors, and several more neurologists, we had a new treatment plan for Jordan.

Jordan received early intervention services consisting of speech, physical, occupational, developmental & vision therapies. Each of these were once a week. The newest G.I. doctor was added to Jordan's care team just recently in June 07. His present neurologist has been a part of Jordan's care team for quite a while. I was not only seeking specialists who were talented to care for Jordan, but also who gave it to me straight. So many doctors sugar coated the reality of Jordan's injury and the time had come I needed to realistically plan for and manage Jordan's care.

Through Jordan's neurologist, we were referred to a physiatrist. This doctor manages Jordan's Baclofen. She also helps piece together Jordan's many issues. Because Jordan has so many specialists, therapists & complex conditions she picks up what falls through the cracks.
The physiatrist is the doctor who diagnosed Jordan with cerebral palsy.

Once Jordan's reflux issues were resolved, we were able to focus on the rest of Jordan's challenges. As hard as it was to hear, finally having a diagnosis actually helped me to understand what we were dealing with and how to go about managing Jordan's health care.

The Fundo

After several weeks of vomiting, Jordan was not gaining weight. Doctors use a growth chart to track weight, height & head circumference. Jordan's doctor explained, where my child is on the growth chart is not as important, as long as there is steady growth and that his growth progress follows a curve. Jordan was dropping off the chart. We were told he was showing failure to thrive.
A surgery to stop the reflux was recommended & we went for the first consultation.

What this surgeon described was not what I had thought it would be. He spoke of an incision & wrapping his stomach around his esophagus. To be honest, I did not hear much after incision.
The procedure is called a Nissen Fundoplication. Because of the harshness of the description, I set out seeking a second opinion, a better way.

I was unable to find any other procedure to resolve the reflux, but I did find a surgeon who performs this procedure laparoscopic. Much less recovery time involved as well as less pain for Jordan. The surgery was performed July 20th, 2004. Jordan was 5 months old.

Reflux

As time went on, while trying to teach Jordan to bottle feed, and compensating with g-tube feeds for the lack of nutrition he could orally take in, he would vomit, more and more each time. Hours of oral feeding would come up in seconds. We did not have a pump at that time for tube feedings. We were feeding with gravity, and we did not have any extensive training with tube feeding. We had to figure it out on our own. Jordan had to be slowly fed, a little at a time with breaks in between, just to ensure his stomach could handle the volume & keep the food down. We were feeding 30cc (1oz) every 15-20 minutes.

Finally, after a few months of this (about 2 or 3) he was diagnosed with reflux. It all made sense now. Well, some of it made sense. After trying several different reflux medications, he was finally prescribed Prevacid and my little screaming infant had finally found some relief.

To think, all this time he was in pain. Absolutely heart wrenching. Who would know that this was only the first of many heart wrenching realizations we would come to.

The prevacid helped ease the pain but, did not stop the vomiting.

2/16/2004

The happiest and most sad day of my life. My beautiful baby boy came into the world.
Due to a ruptured placenta, his oxygen was cut off and he needed to be born emergency c-section, 2 weeks early. It was the first time I heard the words ....
Hypoxic Ischemic Encephalopathy I was told he may have some brain damage. I am still learning how severe it is. He was immediately sent to another hospital 2 1/2 hours away. I had to remain behind in the local hospital.

After 2 weeks of testing & treatments he was released with a g-tube & brief, basic instructions how to feed him. When Jordan wasn't sleeping he was screaming. This went on for weeks. He would scream so hard he would fall into a deep sleep from exhaustion. It was very scary & we did not know what was causing it. After consulting with a neurologist, he was diagnosed with seizures & put on phenobarbital. The medicine did not help the screaming. Also noticed at this time, Jordan would become unnaturally stiff, and arch his back. Still, we were unsure of the cause for the screaming. He had a brain injury, perhaps his head hurt. two "regular" parents had no clue of any other reasons for his unusual behavior. We knew Jordan had some problems but had no idea to the extent of the damage.

We were told very vague prognosis, not knowing how much or if the brain would heal. All we knew at that time was he lost his suckling reflex & was having seizures during these screaming attacks. We were not told what was reality.