Yesterday Miles had a psychological evaluation at Texas Children's. It went well although it was a bit draining for everyone. They had three main recommendations.

1. Have a neuropsychological evaluation - Neuropsychological evaluation (NPE) is a testing method through which a neuropsychologist can acquire data about a subject’s cognitive, motor, behavioral, language, and executive functioning. In the hands of a trained neuropsychologist, these data can provide information leading to the diagnosis of a cognitive deficit or to the confirmation of a diagnosis, as well as to the localization of organic abnormalities in the central nervous system (CNS); the data can also guide effective treatment methods for the rehabilitation of impaired patients. NPE can include testing of intelligence, attention, memory, and personality, as well as of problem solving, language, perceptual, motor, academic, and learning abilities. Apparently this will be very involved and extensive...which is good.

2. Have a NEW OT evaluation at TCH. The evaluator yesterday said they would do what they could to push it through to get it sooner than later. You can see a big difference between Miles' work at school and the work from the other kindergarteners who are a year younger. He can write his name every time but sometimes it’s backwards (Aunt Chris says this isn't abnormal) and most of the time really tough to decipher the letters. That is the only thing he can write consistently but if we help move his hand he can write most anything else.

3. They would like Miles to go to a clinic at TCH for children with chronic illnesses that have issues with anxiety. He gets anxious about many things and has a tough time with change. They said that since he was in the NICU at TCH he has a good chance of getting in to this clinic unless they aren’t currently accepting new patients.

I am hoping that I will hear from them soon about getting all of this scheduled. In the meantime I am trying my best to help him do well at school. I have been telling him to ‘think green!’ and the other day he wore green silly bands to help remind him to be green and he DID get a green WITH a smiley face! He was so proud! We know he can do it but it takes constant reminding and focus from everyone. My memory is for s most of the time so this has been tough for me too! His teacher has been great and very encouraging to Miles as well! She has quickly fallen in love with him but most people do :)

Riley had a similar eval at the recommendation of his teacher last year – she thought he may have ADD or something. He was getting distracted easily and sometimes not finishing his tests/assignments. Heard back from that eval yesterday - the dr says – he is a normal/typical 8yr old kiddo – doing great! No follow up recommendations needed :) So far this year he is doing great in school so we aren’t concerned right now.

Thank you all so much for your prayers and msgs :)

Go Texans!

Pulmonary Update

We saw Dr. Moore on Tuesday and liked him very much. He was great with Miles! We found out this week that another good friend of ours sees him too!

He says Miles has asthma for sure and switched up his meds a bit. Changed us from pulmicort nebs to a Flovent puffer and also gave us some oral steroids to keep on hand in case he needs them. He also gave us an "asthma care plan" which is like a step by step of what to do if he starts to have trouble which is pretty cool. All stuff ya already know but good to have on hand for the babysitter and stuff.

The check up schedule is as follows...Feb 5 - Cardiology (getting nervous!!)...Feb 8th - Renal...Feb 18th - Neurology...and finally Feb 24th - We follow up with pulmonology.

Cardiology is the only one I am getting nervous about. The most likely senario is that Miles will need a stent in his conduit - which just means a heart cath. It would be his 3rd if that is what he needs. I only say this because that is what the pc said last year when we saw him. He is doing SO well, if he needs any other intervention I would be very surprised. And he could need nothing at all which would totally rock! Because his pulse ox is still lower than they expect with his repaired heart I suspect that he still has some shunting from his now-closed fenestration.

He has shown quite a bit of curiousity lately about his heart and what surgeries and such he will need down the road. He asks the best questions and sometimes they are difficult to answer, for example, mommy how will the doctors open my chest to get to my heart? My response - they will use doctor tools. He seemed to be okay with that. I don't think I need to use terms like surgical saw and heart lung bypass machine just yet. His Dad and I are always honest with him but try very hard to explain things on his level and for the most part I think we do okay.

Please keep those fingers crossed that all of our February check ups are full of good reports!!!!

Things have been good for the most part, which has been nice. I hope everyone had a good holiday season!

January and February are full of check-ups for Miles. Next week we see pulmonology for the first time. Miles was in the hospital in November and diagnosed with asthma. The pediatrician says they may want to do a lung function study. His asthma is strange in that he doesn't wheeze or have an 'asthma attack' - he coughs. Dry, unproductive coughs - and he can't stop - has a hard time talking, eating, taking meds but never really appears to be in distress besides the constant coughing until the 'attack' passes (with lots of help from xopenex and pulmicort). He was admitted another time in November for a seizure but has been doing amazingly well since.
His pulse ox has been lower than usual too but that could be the asthma. He sees cardiology in early February, then neurology and then renal. He has been off of the BP meds for a while now and has done really well.

He has had lots of questions lately about when he will have surgery next and what kinds of things the doctors will do to his heart, how they will get to his heart, stuff like that. Those are trying to answer without scaring him. I tell him we don't need to worry about when he will have surgery again - we trust our doctors and let them worry about that for us. When it is time they will tell us :) Last word from the doc was that a stent will be done before the next open heart anyway - which should add a few years to the conduit so I feel pretty safe that the conduit replacement is still a good way off.

Thanks for checking on my little man! :)

Been a while...

Let's see...

Cardio...Miles is doing well cardiac wise. His next check up is in February. He gets tired alot but I am not sure if that is behavioral or heart stuff. His fingertips are red all the time but who knows...that could be marker!

Neuro...He has not had a seizure since June which rocks! We missed our appt with neuro this last time and weren't able to reschedule til the spring. We are holding steady with 10mls BID which seems to work very well for him. One thing he does do is fake staring off which bugs the heck out of me!

eye stuff...It still does it but I don't notice it as much. The eye doc says it IS 4th cranial nerve palsy eventhough it does not show on the MRI. We just watch it and make sure that his head tilt doesn't get worse and follow up with the doc.

Renal...We are officially OFF of the BP meds!!! His BP was holding pretty steady on the meds so we did a trial off of them and we have not gone back on them. I have spot checked his BP from time to time and it has been a little crazy so we are keeping an eye on it, taking it once a day. The doc was a little concerned with the 112/95 but mostly we get 116/66 or somewhere around there.

We are all swine flu and reg flu vaccinated and staying healthy - mostly thanks to his breathing treatments and inhaler. As long as we stay on a rigid schedule he does very well!

Riley is doing great in 2nd grade! He got all A's and is playing the recorder. His birthday is next week on the 20th...I can't believe he will be 8yrs old! wow!

My dad's birthday is this saturday...our first one without him. I miss him so much!

I think we are all ok on all other fronts except Miles' behavior! Geez he has been a handful! We are working on that though.

still no answers...

So the pediatrician today says she doesn't think it is neuro or cardiac but possibly renal...hypertension or hypotension. I will call renal next week and talk to Beth (the renal nurse), she is great and I will get Dr. Feig to look over the tests and maybe call the ped to get her take on it. We did some blood pressure stuff today - one laying, one standing and one sitting. laying was about 103/62 ish hr was 108...standing was about 106/65 ish hr was 103...sitting was 92/29 with a hr of 39. She came back and got his hr again and she got 89 sitting. hmmm...redid the bp and got 96/59 or something like that. bettter but still very different...

today he did well. He finished the holter and that will get turned in tomorrow. I am so tired! I am off to dream land...

love and hugs to all!!!

No Answers so far...

Miles was released from the hospital yesterday with no answers. The summer camp/daycare he attends called and said that he was very flushed, glassy eyed, unsteady on his feet and slurring his words. Their dad and I rushed up there to get him/make sure he was okay. The teacher then told me that while we were on our way up there he said that his heart hurt and he needed someone to listen to it. He looked okay to me when I got there - quiet, calm, reading a book and singing sweetly - he was also not sweaty. We called the pediatrician who said to bring him to the hospital to check him out. Her concern was some sort of ingestion of something OR a partial seizure.

I love it when the doc calls ahead cause we got right into a room - not wait in the lobby. :) We figured they would listen to him, check his electrolytes, maybe check trileptal levels and send us home. They admitted him. Cardiology consulted and said they didn't think it was cardiac - we did an EKG just to be sure. The ER docs theory was Ischemia of the brain - not enough overall oxygen to the brain which caused it to seizure up a bit causing stroke like symptoms. Like a stroke without the blood clot. Neurology admitted him and wanted to see him in the morning. He had an uneventful night, they monitored his pulse ox which stayed steady at 95% or so.

Neurology said it did not sound like a seizure - the theory from him was a combination of things. He said if he has low cardiac out-put already (which I don't think he has) he may not profuse his body as well as others. Couple that with slight possible dehydration and you get strange neuro symptoms. (if he didn't profuse well - would his pulse ox stay that high?) We checked his electrolytes and they were normal - theory out the window. Neuro says it is cardiac.

Cardiology comes and looks at him and says he looks great (which he did). They put a holter on him and sent him home. We will follow up in clinic for an echo. We didn't do the echo while we were there because Miles was sick of being in the hospital and was not listening to anyone - at all. An echo would have been torturous!

So...sent home with no answers. One time yesterday while we were there Miles said his heart hurt again. I hope the holter will show something or that we can figure this out another way.

We got some pictures taken...they are great!!!! Enjoy...

Two posts in one...

HAPPY BIRTHDAY MILES!!!!!

Today is Miles' 5th birthday!!!! I can't believe he is so big! He had a great birthday party over the weekend at Chuck E Cheese and loved playing with all of his new toys/games.
The last 5 yrs have gone by so quickly and so slowly at the same time. When I think of all he has done in his 5 yrs versus what I have done in my 33 yrs it is astounding. I am so proud of him for so many reasons.

He has his 5yr check up tomorrow and will need to follow up with his neuro from the seizure (if he will return our calls...grrrr!). He has been quite tired all the time since the seizure last week. No obvious reason for being so tired and doesn't seem to be sick at all unless it is coming on very slowly. He just doesn't have the stamina he did just a week ago.

Today we will celebrate again but I am not sure what we will do yet. Thank you all for being on this journey with us and praying for my amazing 5 yr old maniac :)

April 30th

I was going to post about how we got the results of Miles' trileptal levels and they are great - 23! We want it between 15 and 35 so this is perfect! But then the little stinker had a seizure last night. This time he had a petit mal seizure instead of a grand mal. It lasted about 15 minutes - which is amazing for him! Sean called me when I was at work at the bar and I rushed over to his place. The EMTs were there and the seizure had just stopped. We decided to go ahead and take him in to the ER because he has never done that before - just stopped after 15 minutes. He usually seizes much longer (like 2hrs) and we didn't know if he was going to start again or what. Texas Children's had the 1st death from swine flu yesterday (an 18 month old I believe - so sad!) so they were backed up for 4hrs. The ambulance was redirected to Memorial Hermann Children's. It was a nice hospital and everyone was very nice. However...there is so much to be said about continuity of care. Miles having never been there before with all of his issues was not a good idea. They were great, don't get me wrong, but none of his doctors are there. They couldn't get a hold of his neuro, ped, the neuro's NP...nothing. They took a chest x-ray but I am still not sure why, monitored him for a bit and sent us home. Fast ER trip overall. He follows up today with his pediatricians office - at the same time that I have a root canal so I won't be at the appointment.

Overall, despite the seizure yesterday, Miles is doing FANTASTIC! He has been healthy, not needed any breathing treatments, been doing well at school (although he did hit another little boy yesterday)...just doing great! Riley has been doing very well too! Two weeks in a row of behaving well in class (he is super silly and it gets him in trouble sometimes). Also, scored amazingly well on the Stanford again this year.

Miles had an appointment with his neurologist Dr. Fernandez yesterday. His trileptal levels are low again. In January when he had the seizure they were at 5.5 and in February when we followed up they were 3.4 (or 4.3, I can't remember). He is supposed to maintain a steady level between 15 and 35. Dr. Fernandez said that he processes the trileptal through his liver too quickly. He wants to raise the dose again (AGAIN!). So he upped it to 10mls BID - which is 1200mg/day! (Aunt Christy, don't you take 1500mg/day at 32yrs old?) He said there won't be anything to worry about with that quantity of meds in his system (really?) except him being tired. Miles has never really gotten sleepy when he has had his trileptal - well the very first day he took it he got sleepy - in Oct 2007 - and we have raised the dose 10 times since then. With this low level of meds in his system he could really have a seizure at any time. He said it takes 10 days to really get in the system and get a good level. We will check it in 2 weeks and see where we are. I put a call in to the pediatrician to get her take on this. Do we just continue to raise his dose or should we find something else that works for him? The normal dose of trileptal is 25mg/kg and now Miles is at 70.5mg/kg! Almost 3 times the normal dose. CRAZY!

After the appointment we did the labs from Dr. Feig - the renal specialist - he checks a complete metabolic panel every time we go. We saw him earlier this month and couldn't get any blood on the first try. Let me tell you - Alma cream is the bomb! This was the first time we used it and it was great! There were still lots of tears but mostly because of fear of past experience but he did great and they got him on the first stick! Oh yeah, Renal went well. His BP looks great but because of his severe regurgitation we will keep his meds as is because coming off the meds could speed up the timeline to the next surgery and we don't want that.

Went to see Dr. Lai the opthamologist. Still no clue what is going on with his eye. Not nerve palsy, not a tumor, not muscular and does NOT think it is myasthenia gravis :) That is great! What the heck is it? check out the pic. Overall it doesn't seem to bother him except the slight head tilt.

I think that is it...oh, since the undecended testicle surgery in January Miles has grown 2cm! and gained 2kgs!!!!!! very cool!

love to all!

Update

Sorry I am SO slow at updating the blog! The MRI showed little change from his last MRI which means no brain tumor! (yeah!!!!) He does have hippocampus sclerosis but so do 65% of epilepsy patients, some damage to the nerves in his white matter, inflamation in his paranasal sinus and mastoids and NO 4th cranial nerve palsy.

We saw Cardiology in February - everything looks great! A little more narrowing to his conduit and valve and the valve no longer works but he is tolerating all of that very well and won't need surgery this year! We will see Dr. Justino again next year :)

We followed up with the eye doctor to get his take on the MRI. With no nerve palsy - what the heck is causing his eyes to do that thing? Well, Dr. Lai didn't have any answers for us except that he thinks Myasthenia Gravis is a long shot (thank God!) becasue the symptoms are severe from what he says. He has been the first to say that but he said that Miles' respiratory system would tire out during the night and he would wake up gasping for breath and that he would have extreme fatigue, and his eyes would droop. We don't have any of that so I feel a little better about the possibility of MG. The neurologist is next on the 19th - he was the one that said MG in the first place so lets see where he is on it. Miles had his thymus gland removed during his open heart surgery - which is one of the treatments of MG. I asked that if he has already had it removed could it be possible that he is already being 'treated' for it and that is why we don't have severe symptoms? (Sounded logical to me) He looked at me like I was speaking in another language so maybe I didn't come across. I will ask the neuro the same thing. Anyway, concensus from the eye doc is that we don't know why his eye does this. It isn't muscular, it isn't nerve palsy, it isn't a tumor, he doesn't think it is MG. His head tilt is only about 5 degrees so far and he doesn't complain of seeing double very often. So we live with it for now I guess. We go back in 6 months and if it worsens to the point that his head tilt is about 10 degrees then we can do surgery. My question there is - surgery on WHAT? His eye I know but if it isn't muscular would that do any good to cut and reattach the muscle? (no!) Who knows...I sure don't.

Riley is doing great! Just finishing up his TAKS testing this week (for those of you from KY - that is like the KEST testing we used to do...a baloo is a bear, wuzzle means to mix, a yonker is a young man - you know you remember that!) He is so smart, and so fun and silly (sometimes too silly!) and he and Miles love each other a ton! He is the best big brother and has gone through so much with Miles - often times not getting the attention he deserves. God picks very special children to be the siblings of chronically ill children! He has such a loving heart - we are very blessed!

I will try not to say away for too long...

We were due...

It has been 5 months since his last but, Miles had a seizure on Sunday and was admitted to TCH for observation. Thankfully he only had Valium this time! He was crazy and belligerent when he woke up initially but went back to sleep for a LONG time. When he woke up again he was such a doll! He was so sweet to everyone and smiled a huge grin when anyone came in the room! He also opened his mouth right up when the doc asked to see his badly bitten tongue (from the seizure) - this tells me he was still drunk! He doesn't open his mouth for the docs normally - not at all!

We were released yesterday around 2:45 or so...well we were released a teeny bit earlier than that but we were in the middle of eating lunch...then we ALL fell asleep! Anyway, this seizure lasted only about 45 minutes with only about half of that with solid convulsions. He starts with this gaze and is still responsive - even while going in and out of convulsing he is responsive to a point. It always scares the crap out of me cause you think he might be completely aware of what is going on and that always makes me incredibly sad. His dad said that the EMTs this time were great which is awesome!

Next week - the 27th - is the MRI...send good thoughts for good results! I am not sure what good results would be yet...MG is progressive...brain tumors suck...Maybe good results would be that everything is clear and the eye stuff is completely unexplainable and won't ever be a problem for him...oh, and one day just clear right up, never to be seen again...is that possible? I hope so!

Myasthenia Gravis or Brain Tumor??

Miles had surgery on the 6th for his undecended testicle. It went really well! We did get the anesthesiologist we requested so that was great - it makes a huge difference for Miles when he is familiar with the doctors, at least it seems that way. He and Dr. Campos went skipping down the hallway to surgery together (not kidding, like really skipping - it was so cool!).

Next on the horizon for my little man is to get this MRI done! We are #1 on the cancelation list which is good. Now I just have to keep him healthy enough to have it done! Lots of breathing treatments should help with that.

I talked to his pediatrician about the eye stuff and this is what was said...Myasthenia Gravis is a possibility. This is an autoimmune disease that attacks the voluntary muscles. It causes extreme fatigue but gets better with rest. It can be debilitating for some but most people live a pretty normal life :) The treatments for it include an immunosuppressant, IVIG (I think that is right) or possibly removing the Thymus Gland. There are others that I can't think of right now. This disease can be exclusively ocular - which might be the case with Miles. We have to test him for it...however...it is apparently extremely rare for children his age to have this disease and we aren't entirely sure which tests can be performed on him just yet. The doc is getting with the rheumatologist to discuss Miles and will get back to me soon. The MRI is to rule out a brain tumor. Frankly, I don't like either of the options and I am praying that it is just a crazy fluke and he just has a funky eye :)

Holy Crap is it December Already!

So things have been hoppin' around our house for quite a while. Miles is fine, Riley is fine. I am good and Sean is good. Just "stuff" ya know?

Miles has had kidney stones, now has a hernia and was diagnosed with 4th cranial nerve palsy over the last several weeks. We go tomorrow to meet with the surgeon to see about the hernia. We are talking to neurology in reference to the palsy - they think it is caused by his epilepsy. We (the pediatrician and us) feel that it may be time for a new MRI because the 'eye thing' started out of the blue - well not completely out of the blue. His eye has been turning too far in since his first seizure when we were in KY last Christmas. Now it is just doing it alot - almost all the time and getting stuck from time to time. Also - with no seizure activity since August we think there might be something else going on. (crap! I don't want something else!)

Overall - he is doing so well! (ya know minus the above) He is kickin' butt in pre-k! (I guess that isn't too hard when he is the only kid in the class that doesn't have developmental delays) He is growing...well I think so...his 2T pants are FINALLY too short (he will be 5 in May).

It turns out that I was diagnosed with the same blood disorder as Riley. (von Willebrand disease) I think back over my playing softball and cheerleading and whatever else I wanted to do and I SOOOO think he can play sports! I told him that if he wanted to sign up for Karate that he could. He said, Mommy the doctor said that I can't so I don't want to. He is such a rule follower :) love him!

My Dad is home from the hospital and cancer free! Thanks for all the prayers and good vibes!

Hopefully it won't be too long before I update again. BUT not having much medical stuff to update isn't really a bad thing - especially this year!

sorry it has been so long...

So lets see...the liver panel was normal, no cause for alarm. We went to see neuro at TCH and they said that he is indeed allergic to the diastat and the ativan and to NOT give it to him. We are to call 911 when he has a seizure and refuse ativan when the EMTs show up, refuse it again at the ER and demand fosfenytoin right away. He raised his trileptal once again - he is now up to 960mg/day! wow! however! Since he has started to take the higher dose he has done sooo well! He has started in public pre-k, which is neat. He is pretty darn smart so the public preschool for children with disabilities was a little scary for me - I was concerned about putting him with kids below his intellectual level. However, this is an inclusion program so he spends a good part of his day with the kindergarten class and with the regular pre-k class which is great!

My dad had his surgery for the cancer. I could write all night on how things went but the short version is this:
The cancer was too close to his broncial tubes so they took all of his right lung. The left lung has emphysema and COPD, he got pnuemonia too. His lung collapsed, he had to be put on the vent. He had multiorgan disfunction and sepsis. The nurses were preparing us to have to pull the plug - they just didn't think he would be able to come off the vent with just the one very sick lung. He had to get a trach after he failed the attempt to come off the vent (his bpm went up to 59!). After the trach surgery he coded and had to be given CPR. They have slowly woken him up (after 3 weeks of being out!) and he is now in Kindred hospital (inside Jewish Hospital in Louisville) sitting up and using a speaking valve to talk - after coding just a little shy of 2 wks ago! he will be in the hospital for a while still doing rehab - physical and pulmonary. I was there for 3 weeks and it was stressful to say the least - however, I really did enjoy the time I spent with my family. My sisters are the best! My mom has really been holding up great! 39 yrs of marriage and to come that close to loosing him, wow!

I miss Kentucky! I miss my home!

Riley is doing really well in first grade - has lost two teeth and is getting taller. He is pretty stinkin' smart and does really well in school. He read a 15 chapter book the other day (in one day), blows me away!

Thanks for all the prayers!

recap of this week...

So lets see...My Dad was diagnosed with lung cancer on Monday. This is the second time he has had lung cancer and it is in the same lung as before. Fourth time to have cancer all together (skin, lung, bladder and lung again). They took out part of his lung last time so this time they are going to take out just a wedge of it. He had a stress test today and did well. Next is a scan of his brain. I talked to him today and he sounded good. I feel bad being this far away...

I don't think I have written about it yet but my oldest son was diagnosed with a blood disorder, von willebrand disease. Today we spent from 8am to 4:30pm at the cancer/hematology center at Texas Children's Hospital so that he could do the DDAVP challenge. This is a medication and today was to see if it works for him. He got his first ever IV. They took his blood, gave him the meds and then took his blood again 1, 3 and 5 hours after the meds were administered. We weren't just at the cancer center but in the infusion area. There were lots of different kinds of kids there. Some for chemo, some for sickle cell stuff (blood transfusions) and some for other stuff. The kids all seemed okay. There were lots of games, movies, crafts and even a dance group came for entertainment. The parents (myself included I am sure) all looked so tired and worn out. You could see sadness in their eyes. Alot of the parents were either just sitting staring off into space or like myself reading and dozing off from time to time. Riley's blood disorder is not severe and I probably have it as well as it is genetic. I know my kids have their health issues...both of them now...but I am grateful today. Grateful that things are the way they are and are not worse, ya know? It has been stressful lately with the heart cath and then the seizure 2 wks later, the VWD diagnosis for Riley and now with my dad having cancer again...and yes, stressful is an understatement...but I am grateful for what I do have.

Another piece today that has kept things in perspective...please pray for the Dereksen family...Tommy lost his fight with CHD last night (and boy did he fight!). He was such an amazing boy and he will be missed.

Today was better!

We went to the pediatrician today. His trileptal levels were at 9. They were at 3 for his last seizure in May and after they increased his meds his levels were at 16.9. So then I am led to ask - is this a metabolic issue? Seems like he metabolizes the trileptal okay for a little while then too quickly? And doesn't metabolize the ativan at all. His liver is enlarged a bit which is concerning. We are going to do a liver panel, CBC and trileptal level in a few weeks. She said she will check the liver panel that the TCH ER did. We talked about the neuro consult that came to the ER and sent us home - neither one of us are fans of hers. She said that if they had called her (which they should have, she was on call all weekend) she would have surely not let them send us home. She is going to talk to our neuro and see if there are other options besides the diastat or ativan in an emergency.

The EMTs said that the max they can give an adult of the diastat is 10mg - 5mg each dose. Miles' one dose is 7.5mg and we were told that if that doesn't work in 3 minutes then to dose him again - that is 15mg! She agrees with me that he is possibly allergic to it - he had a rash all over his face in seconds and then his breathing became labored and sounded like he was snoring/gurgleing. His bpm went WAY down.

Oh and get this - when we got to the ER yesterday his bp was 169/96 - not kidding! His blood sugar was 111 - is that okay? I know seizing can raise your blood sugar and cause you to spill keytones over into your urine so that number may be only because of the seizure.

We do have an appointment with the TCH Neurology only because of continuity of care...I don't know if I should stay with Memorial Hermann or go to TCH for this...

I have no idea where the TCH ER put my child! He has not been himself - not even close! He won't pee, eat or drink. He has been inconsolable all day, screaming, talking in a very high pitched voice all day long, unsteady on his feet, drunk, babbling, talking about things that don't make sense or aren't possible. Right now he is taking off his clothes and turning over the footstool saying he doesn't want the top on it. He says he is thirsty but wont drink...I am going back to the ER to find my boy! (that was last night...)

So...we came in and he put on a real show for the docs! We were admitted for observation. He did pee at the ER which was good but he hasn't gone since. Their concerns were that his kidney's were not working because even though he hadn't gone potty, his bladder was not full, they are questioning whether or not he can metabolize ativan (supposed to be a pretty short lived med) and they looked at possible continuing seizure activity. He hasn't even really begun his normal postictal behavior. I did get him to eat a bit just a few minutes ago. This morning he poured his syrup for his breakfast all over his tray, put his french toast into his cereal, poured his water all over his tray and put his butter in the syrup container...but ate nothing. It has been pretty clear that there is something wrong with the boy. Hopefully we can get sprung today.

AND - some terrible person broke into my car and stole the DVD player. (pardon my language) grrr! AND then I still had to pay for parking!

...vacation all I ever wanted, vacation have to get away...

yet another seizure...

Just got back from the hospital with Miles. He had a seizure last night and that bought us another ambulance trip. Gave him the diastat and that didn't work so we called 911. He had 2 doses of ativan and one of cerebrex (phenobarbital) before it stopped. They were going to admit him but he woke up so they sent us home. I have not slept and am exhausted! He is a funny drunk! He keeps saying - I love you guys! He is slurring his words and he keeps saying he wants to do the weirdest stuff. Off to sleep for me...

the allergic reaction...

Miles' cath

This is a little video I took of Miles when he was having his allergic reaction. It came in handy when the docs came by after he started to get back to normal. He was SO asleep here! Like a rag doll!

The video didn't work so here is a link to all the pics i took while we were in the hospital, the video is in there.

home!

Sorry it took so long to update...We are home! Miles was released at about 3pm. The echo today showed some residual leakage from right to left so he is re-oxygenating some blood - which doesn't explain the pulse ox being low. His pulse ox leveled out at 94% and since we got the echo today we don't have to go back to the cardiologist for 6 months! cool! If we weren't going to be able to have the echo we would have had to go back in a month. I think the lower pulse ox is from the little collapse of his lung which will be fixed with him just getting up and around. Anyway, he is doing just great! He didn't want the IVs out (he wanted to leave them in forever) and we came home with the leads stickers still on - he wants those on forever too. I did get to bring home some of the adhesive remover so it won't hurt to take them off but he doesn't believe me. His face is a bit puffy again but not bad.

Anyway, I am exhausted! I can't wait to go to sleep! Thanks for all the prayers!

OH - and Thank you, thank you, thank you Sandra and Deanna for watching Riley and letting him stay and play with your Connor's :) He had so much fun and I cannot begin to tell you how very much it is appreciated!!!!!! You guys are AWESOME!