Thursday, December 04, 2008
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!
Monday, October 20, 2008
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!
Thursday, August 21, 2008
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.
Wednesday, August 13, 2008
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...
Tuesday, August 12, 2008
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...
Monday, August 11, 2008
Friday, July 25, 2008
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.
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!
Thursday, July 24, 2008
Just before I came to update he was very insistent that he have some chocolate! Very cute, so I gave him a little bit - hope the docs don't mind.
We have seen so many kids come in, recover, and go home...but, this is his usual MO. After an echo in the morning we should be good to go!
I am going to get back to my little man...love to all...
dr. justino will take a few preliminary pics to determine if the ASD is in a good location for the device, if not then it maybe a quick visit today. but no worries since miles stats are not anything critical right now... but keep the prayers coming for our precious boy
Tuesday, July 22, 2008
I will probably update again later as he will see the Neurologist this afternoon.
Thursday, July 17, 2008
The next thing is to keep Miles healthy until next Thursday...He has Neurology on Tuesday (at the same time that I will be getting a root canal!) and OT on Wednesday...busy week.
Oh, My Dad will be having a bronchoscopy/biopsy on Tuesday so think good thoughts for him!
Love to all,
Tuesday, July 01, 2008
We were talking about getting haircuts for the boys and he said "Oh, I love haircuts!"
We went out for ice cream instead. On the way home he was upset that we wouldn't be watching a movie. He said "I like movies cause if somebody has to go potty we can just pause it. Or if I have to go potty, or anybody has to go potty, we could pause it. And I love to pause it."
He is so cute :)
We had the evaluation for PPCD and he definitely qualifies because of health stuff but they said he is probably too smart. I don't think they will hold that against him - at least I hope not.
The heart cath will be Friday, July 18th. I am nervous, but I think that is normal (right? please say yes :) He is doing really well health wise. He has a bit of a cough so we have been doing breathing treatments to keep him healthy. For the next three weeks we gotta keep him healthy. I will just die if he gets sick and can't have the cath after all this waiting and build up.
Riley is doing very well. He is really enjoying his summer at the YMCA - except the swimming part. He has not enjoyed that at all. He is a bit scared of the water (takes after his mommy - yes, I am 32 and I cannot swim). Sean has been taking both boys swimming and they have been enjoying it - at least I think so - I have not been swimming all summer.
I hope everyone is having a great summer!
Tuesday, June 03, 2008
"Rebecca L. Conway-Suggs and Sean Suggs agree to indemnify and hold harmless First Christian Church/First Christian School and their officers, employees, agents or instrumentalities (the "Indemnified Parties"), from any and all claims, liabilities, demands, suits, causes of actions or proceedings of any kind or nature, losses or damages including attorneys' fees and costs of defense, which the indemnified parties may incur arising out of the negligence, error, omission, intentional acts, or other cause arising out of or resulting from the administration of any medication or medical procedure by the Indemnified Parties for or for the benefit of Miles Suggs. The obligation to indemnify and hold harmless specifically includes claims, liabilities, demands, suits, causes of actions or proceedings arising from the negligent acts or omissions of the Indemnified Parties."
I have not signed it and just cannot agree to ANY medication or medical procedure! I am thinking of editing it and saying "...the administration of Diastat as prescribed for a grand mal seizure lasting five minutes or more..." What do you think? If they were to accidentally give him some other child's meds they wouldn't be liable according to that agreement! Should I add something about the school being trained on how to administer it?
Also, I think that the teacher treats Miles differently than the other kids. At his birthday party the kids were very 'careful' with Miles and concerned about him while they were playing. There was lots of hugging and "Oh, Miles!" from some of the kids. I think his teacher may have given the impression to the class that Miles is fragile. I SO don't want that for him!
So here is where I am wondering if I am justified or not in being upset...
Is his health really that fragile? Do I underestimate the situation? I know that he has had several seizures of all different types and we don't really know what triggers them. I know his heart is a big deal. But am I expecting too much from the daycare? From my point of view - they are a daycare - they know that not all children have picture perfect health - they expect to have to give medication sometimes. There are lots of kids with health issues - is Miles' health more of a big deal than a normal kid? (btw, he is such a normal kid!) Is this just part of the gig and I have to get over it and realize that his health will freak people out - and they will be nervous so I will forever have to make concessions?
I know when we first were looking for a daycare people were so freaked out by him and his health. We had one place that looked at me like they were terrified and said "So, he could ACTUALLY turn BLUE?" (I thanked them for their time and left) Have you other heart moms experienced anything like this? Am I totally downplaying his health? Is it expecting too much to expect the daycare to treat him as any other kid?
Saturday, May 24, 2008
The latest from the docs is that Miles' spleen is enlarged again - about 50% larger than it should be. We are looking at his blood to see what might be going on. He looks and acts JUST fine! He did puke at the movies yesterday - right out in front of the box office! Oh well, such is life. I am so used to puke and people staring at me and the big puddle of puke at my feet. Who cares :)
No big plans this holiday weekend. I am actually at the office making up some time from yesterday - Riley left school sick with a painful tummy. Seemed to be just fine when we got home. He said he wanted to go outside and play. I told him that if that is the case I will take him back to school so that he can participate in field day. He changed his mind and plopped down on the sofa.
I forgot! Miles cath will be July 14th to close the fenestration. (The schedule hasn't been confirmed yet)
I hope you all have a good holiday weekend...
Tuesday, May 06, 2008
So, to conclude...Miles was observed for a bit, took a chest x-ray to make sure he didn't aspirate, and checked his trileptal levels. All was good - they said it was just a 'break through' seizure. So we are upping his meds again! He is at 4mls now and will go to 4.5 this week and up to 6mls next week. His pulse ox hovered around 90% without oxygen which is low for him but okay. His heart rate never came below 130 which is a bit high, he is usually about 117 or so. He is resting sweetly in my bed and we will follow up with our doc in 2 or 3 days.
I guess he won't be sleeping alone anymore! I would rather he puke on my head than drown in his own vomit!
Thursday, March 27, 2008
Neurology definitley says epilepsy and they have upped Miles' dose of trileptal once again - from 1ml to 4ml since Christmas. He is doing well on it although he has had a few epidodes of puking from a deep sleep and then going right back to sleep and twitching. We are keeping an eye on this to make sure we don't need to increase it once again.
Cardiology said the seizures are not caused by his heart (yea!). However, the regurgitation in his pulmonary valve has gone from severe to worse and his fenestration isn't doing its job anymore so we are headed to the cath lab to close the hole. His surgery will be in July so we still have a while. His base pulse ox now is about 93% where it used to be 97% or higher. We are looking forward to having the hole closed. Strange right? looking forward to surgery? But it is pretty minor compared to some of the other options and what he has been through already. His conduit is slightly narrowed but not so much that they will need to do anything to it during the cath. Dr. Justino thinks the conduit will last another year - then we can stent it - then we won't need an open heart for a while! He thinks maybe 8yrs since his first one! That would be another 4 years! Sweet!
What else...Oh! Riley is a friggin GENIUS! He took the Stanford test and scored in the 99.9th percentile of ALL kindergarteners in the country...well all that take the Stanford. His average grade score is about 3rd grade! He won a reading comprehension deal at his school and will be going to the city competition in May. He also has passed all of his Accelerated Reader testing and will have his picture on the wall at school. This is a big deal because it is unheard of for a kindergartener to do this. Even first grade is a big deal. Guys - Riley is just so smart it is wild! The other day he was making this whine noise and I told him to stop. He said - but I like to make that noise. I again told him not to make it. He said - But it's my mouth. Oh man am I in for it with that additude :) (I welcome it freely! Bring it on mister!) I need to teach him not to be flippant to his mommy!
Tax Season is kicking my butt so I am off...
Saturday, January 12, 2008
How about the highlights...
Me and the boys went to Kentucky for Christmas - which was awesome until Miles had a really bad seizure that lasted a little over an hour. He had to be in the hospital for 4 days. They had to intubate him after his airway collapsed from all the drugs they gave him to get the seizure to stop. Then they paralyzed him because he was still seizing and fighting the vent. Then we were flown by helicopter to the children's hospital in Louisville. We will see the neurologist in Houston on Jan 29th and Cardiology wants to see him on Feb 5th. During the seizure he was a deep blue color but breathing just fine - well, until the meds collapsed his airway - but until then he was breathing well. his hr went up over 200, pulse ox was barely 80% on 3liters of oxygen and his bp was super low (very scary!) The current super scary thought is that maybe his heart triggered the seizure. yikes!
I will have to post cool pics of the snow we saw!
We ended up flying home and leaving our car there and my mom is graciously driving it down here this weekend.
Also, me and my husband have decided to divorce. We have to file still but it is certainly going to happen. We are working together very amicably to do what is best for our kiddos. I think we actually will keep the house we rent and then rent an apartment. The kids will stay in the house and mom and dad will switch out when it is our week. Does that make sense? Pretty strange I know but it feels like a good way to keep it stable for the kids and to 'ease' into the divorce. It has been hard coming to this decision but it is what is best for everybody.
Other than that, we are great! (can you hear the sarcasm?) Really, we are okay. We are both looking forward to moving on and starting over. It is pretty strange how okay we both are with it but it is good.
Later everybody...I will try to not stay away so long next time!