Friday, September 26, 2008

A glimpse of our week

Look at this sweet picture of my baby boy hammin' it up for his sister! He was sitting in his chair and she just walked by and gave him a quick kiss. I think he LOVES his sister; what do you think? When I was very early pregnant with Matthew, Megan wanted a sister SOOOOO bad. She was a bit disappointed when she found out that it was a boy. She had been praying for a sister so much. I had told her the important thing we needed to pray for was a healthy baby. I never forget the sinking of my heart when shortly after we'd found out Matthew's gender and prognosis, she looked at me and said "You mean it's a boy AND it's not healthy?" I wanted to cry for so many reasons. I had forgotten that statement until recently when Megan said to me~'I'm SO glad God gave me a little brother; he's way cuter than a sister would've been" And it's funny, because even though he smiles for all his siblings very easy, Megan always gets the biggest one's! She's truly in love with this little boy!!!

Imagine my suprise when, as I hustled around the house, I saw something very mysterious in Megan's room. I busted out laughing and quickly grabbed the camera.

This is our Lab (all 75 lbs of her) Brooke, SLEEPING on my daughters bed. I think she may be spoiled!


Here's a glimpse into our school this week. We're learning about ancient Egypt and our project was to build 'step pyramids' out of sugar cubes. Here's the kids creations. I was glad we glued them together as the kids wanted to eat their creations. We limited them to 1 cube. And yes, Micah isn't wearing a shirt. He basically hates all clothing except for shorts, Even in the winter! Good thing he homeschools and I keep the house warm in the winter huh!

I still haven't figured out how to get my video on here; not that I"ve spent much time trying :) I'm looking forward to Friday afternoon when the house is clean and I can relax!!

Sunday, September 21, 2008

Random pictures

It's been way TOOO long since I've updated the blog. I'm going to blame it on the fact partially that I was VERY busy this week with work and school; and partially to the fact that I couldn't find my camera cord thingy to download pictures. Good excuses, huh? Well maybe not so I'll make up for it with some cute pic's

This is Matthew in his new "sweet tomato" sitter. That's what his OT, Jo, calls it anyway. He's not to fond of it for the most part, but it's helping him sit up and strengthen his neck muscles and torso.
Here's the kids reading to Matthew. Look close at what Mason's doing. Matthew has fallen asleep; and Mason is saying "Wake up 'Maffew'; listen to the story" and pulling up his eyelids!
Here is Matthew smiling. Not one of his biggest one's but he's happy!!

I tried to upload a video of Matthew, but to no avail. Maybe I'll try to send it to youtube first. That'll be my blog project for the week! :)

On the calender this week:

Monday: school and Megan's piano lessons; I work in the evening

Tuesday: school, Megan and Matthew have a doctor appointment, visiting a friend from work who had a new baby, and work in the evening

Wednesday: school, Micah has homeschool PE, Matthew has OT (occupational therapy), and Mason has church classes(Eager Beavers) in the evening.

Thursday: Just school so far :)

Friday: the kids have homeschool co-op classes all morning, and probably grocery shopping in the afternoon.

Sometime during the week we probably should do some laundry and clean the house, huh?? I'll try and pencil that in somewhere!! Ha!

Thursday, September 11, 2008

Neurologist yesterday and hospital update

I purposely have been waiting to update- I needed to cool my jets. I'm finally not so bitter about our hospital stay. We had a less than desirable stay this last time with Matthew. I know I said I'd write more and I'll try to re-cap a bit; but I'm going to keep it pretty abbreviated; it does bring up some nasty emotions I'd rather not relive.

-We went to the hospital in Lincoln Sunday night/Monday morning due to the fact that Matthew had to seizures back to back at home, they transferred us to Children's in Omaha.

-Dr Wright saw him on Monday and made a game plan-we love Dr. Wright, his neurologist, she's wonderful and truly loves children.

-Tuesday Matthew had his EEG and was SUPPOSED to be seen by the on-call Neurologist-he never came that day-wasted day at the hospital with NO new orders or meds being given. Matthew had many seizures that evening and through the night-the nurses would tell the residents who didn't think it was appropriate to call the neurologist-we'd visit with him in the morning when he rounded. Now remember, he didn't round that day-who was to say that he would the next?

-Wednesday--I was tired from being up with seizures all night long; and the resident doc that was following Matthew was entirely too rough with Matthew and a 'know it all'. LONG story-- short version-she was taken off Matthew's case and reported to the supervising resident. Momma was ordered to get some sleep if she wanted to keep her sanity. Neurologist came to see Matthew-NO bedside manner- he made a plan to start a new medication should Matthew continue to have seizures that evening. When evening came the resident following his case decided that the plan shouldn't be followed--WHAT!!!-- and we would see the hospitalist (a hospitalist take the role of the attending pediatrician when you're pedi. doesn't live in the same city) in the morning. Many seizures throughout the night and early morning.

-Thursday- I've hit a new level of exhaustion! The hospitalist comes to see us and makes a grand plan that includes NOT waking Matthew in the middle of the night , and grouping his cares together. We have figured out that his seizures mainly come upon awakening and when he is mad from being 'rudely' awakened by physicians and nurses. We start new medicine for seizures that should've been started the evening before. Pedi. neurologist (still the on-call one, as they switch hospital call every week- and remember , he was NO bedside manner-or personality for that matter)comes in the evening. States that it was the WRONG medicine that was started in the morning, puts him on a third medication for seizures and will take the other med away gradually. GRRRR!

-Friday- I'm starting to feel that I've slept more, Matthew is more rested and we're getting ansty from being in the hospital. A good friend of mine calls and surprises me. She's coming to my rescue- she frees me from jail-I mean the hospital- and takes me to the Cheesecake Factory for lunch, yummy! We've started the knew medication on Matthew and he only had 1 seizure throughout the evening. The doc's start talking about going home, but say that the neurologist has the final say and the nurses say he's very conservative about letting babies go home. My thought is that there was not much they were doing at the hospital that I couldn't do at home. Matthew did not have an IV, and they weren't actively doing anything with the seizures he was having-other than charting them in his record. Matthew was eating and peeing adequately. And I'm fairly knowledgeable on giving medication and changing the dosages :) So when the neurologist comes through after supper that evening he tells me that he is not wanting us to go home till Monday at the soonest :(. After much discussion, he agrees that since he's only had a few seizures and since we have an appointment already on Wednesday with our normal neurologist, he'd be willing to discharge us in the afternoon on Sat. if Matthew has a good night.

Sat- We go home, yay!


We're so glad to be home! Matthew is still having a few seizures here and there; but they are definitely not as severe as before. We were able to see our neurologist yesterday and she fiddled with his medications some and was able to give me alot of answers. She was a bit frustrated also with the lack of management on her partners behalf and told me should it happen again-atleast during office hours-she was a phone call away and she would do her best to fix it. We love Dr. Wright!!! She was happy with his progress though and hopes within the next couple weeks that the seizures will go away. She gave us some instruction with his vaccinations also and we will be visiting with the pediatrician on that with his next appointment. We are fairly certain that this was aggravated by a reaction to his vaccines. See his EEG has always shown that he had 'sub-clinical' seizures, meaning brain activity that was like a seizure, but just with no outward results. Since his 2 month shots, however (he only received 2 of them vs. 5) he's been extra 'jittery' and I believe was having seizures the evening after he received them. So it's not like he has seizure DUE TO the vaccines, but more likely his central nervous system just can't handle the extra burden some vaccines put on his body.

On the calender for the rest of the week- Occupational therapy comes today, and I have an all day conference in Omaha tomorrow. I may try to go get pic's taken of Matthew this evening, since he's due (overdue) for his 3 month pics. Then, I work the weekend. Speaking of calenders, I lost my planner :( and I'm feeling very lost myself. I'm desperately searching for it as it has my "life" in it. All my days I work, my meetings, Matthews doctor's appointments, important phone numbers, EVERYTHING!!! So say an extra prayer that I find it.

Well I think that's enough, since when I started this it was going to be a short post-ha! I guess I got a bit long winded!

Sunday, September 7, 2008

We are home, sorry this took so long!

We are home, got here around 3pm. I immediately crawled in bed for a much deserved and needed nap. I slept 4 hours. I have to work 12 hours in the morning, so I'm going to keep this short. I have much to tell you all of our experiences in the hospital, but my sleep is taking priority tonight. I promise I will write more, perhaps tomorrow evening or Monday afternoon.

Matthew is now on Phenobarbitol (they doubled his dose) and Trileptil (another seizure medicine) for his seizures. We have only noticed *slight*seizure activity today with maybe only 3 seizures lasting 45 seconds or less. If you didn't know what you were looking for, you probably wouldn't even notice, you'd think he was just a little jumpy. He was smiling and cooing today as we've never seen him. He is CONSIDERABLY less fussy. It's amazing. We're seeing a cute little personality emerge. Which makes us feel even worse that he's probably been having seizures for many weeks and we just didn't realize it. The docor says that the longer the activity goes on, the longer it takes to reprogram the brain *not* to seize; hence why it's taken so long to get the seizures to stop and why they are still sort of happening. Let me stress though they are a minute fraction of what was happening. We truly have brought a different baby home from the hospital. and we have NO plans of visiting again anytime soon!!!

Friday, September 5, 2008

Hot off the press!---Nope we struck out!

*Update* the neurologist came through around 7:30 pm and said we could go tomorrow after lunch some time if all goes well-but he's had 7 seizures today, though the intensity is less. We're hoping his meds work! I'm ready to get back to normalcy (is that a word?)


I'll post more later, but I'm working VERY hard to try and go home today; details to follow .

Happy Birthday, Honey!!

Steve turned 34 today! I'm trying to put pictures on, but the hospital wireless connection is too slow; so look for pictures later!

Love ya babe!

Thursday, September 4, 2008

Still here~

Well, we're still in Omaha. Not much chance of leaving either, at least for a while. They have been upping Matthew's phenobarbitol and his level seems to be where it needs to be. There has been a LARGE lack of communication between the neurologist and the resident doctors and the hospitalist. At 4 am this morning, Matthewhad had enough. He had decided he was going to write his first blog entry on the "' top 10 reasons to hate the hospital." Mommy even gave him permission to use the computer :) He had been thinking of reasons for some time. But-- the hospitalist came in today is WONDERFUL and talked to Matthew. She took care of all of our frustrations and even had a serious talk with the residents and the neurologist.d hopefully there will be more communication.

Mommy, on the other hand, is exausted. there is little thought for the parent to get real sleep and with full vital signs every 4 hours and with 5 different people in our room ito "assess" Matthew at 5 different times between 6:45 and 8:30 a.m. there is not much sleeping going on. We have been heavily relying on naps throughout the day. We're hoping this changes tonight since one of the many new orders written by the Dr. was to change his vital signs to every 8 hours, yeah!!!

I have some pictures of Matthew on my camera, but my batteries are dead!! I'll have to wait till we get home. I am seeing improvement in some areas and I *think* the seizures are getting less intense. I'm ready for them to be gone, though. I'm hoping we'll get to go home by Sunday, but not sure on that. I'll try to update every day and let everyone know what is going on.

Please pray that these seizures stop, that they find the perfect combination of medicine for Matthew, that the side effects are minimal and that there has been no long-term damage to his precious brain.

Monday, September 1, 2008

In the hospital

Well, we're in Omaha again. Last night as I was feeding Matthew before bedtime, he had a 5 minute long seizure. Really startled me. His lips had even turned blue for 30-45 seconds. As I was trying to decide which hospital to take him to and was visiting with the pediatrician on the phone, he had another one, not lasting quite as long though. So we quickly packed up and were off to St. Elizabeth's hospital. I noticed he a small one while we were on the way and then when I was trying to check him in, he started another one. The triage nurse just grabbed the infant carrier and wisked him off to room 1. Now room 1 will not mean much to many of you, but as a nurse at this hospital, I know that room 1 is reserved for the EMERGENT cases. All most all "code blues" that are called are in room1. That probably scared me more than anything. I think though, in retrospect, they just keep that room open for emergencies and he qualified. They proceded to check him in, weigh him, measure him, take blood and vitals. He had two more seizures during that time. Then the doc saw him and wanted an IV and a CT scan. Even though I was POSITIVE it wasn't his shunt, they have to rule that out. His fontenelle was not raised, he didn't have a fever, nothing!

Matthew is also a hard IV stick. The nurse tried once, even though I told them he's a hard stick. One of my favorite NICU nurses came down and tried with no avail. Finally, they called the anestesiologist and he got it after 2 pokes. Then off to CT. The CT was normal for him. His ventricles are still enlarged, but not bad for him. They then contacted his neurologist and ordered a large dose of phenobarbitol. The neurologist suggested sending him up to Children's but the ER doctor thought I'd be comfortable taking him home after the IV dose since I was a nurse. Well, he guessed wrong. I am SO glad I'm a nurse and have lots of knowledge to help care for him; but sometimes I just want to be a knowledgable MOMMY. The last time he recieved a phenobarbitol bolus, he had a episode where didn't want to breathe and dropped his temperature. I really didn't want to do that at home; only to call 911 and return to the hospital WITHOUT IV access that we had worked SO hard to get. He said that if I wasn't a nurse he wouldn't have thought about NOT sending me. Well, I said, in this case, don't treat me like a nurse, treat me like a mom. He immediately set up a transfer to childrens.

Today he has seen his neurologist, his neurosurgeon, the hospitalist and the resident. They have given him a couple more loading doses of phenobarbitol and he seems to be better seizure-wise. He is very tired though. There has only been one other time we have possibly seen seizure activity. They will be keeping us tonight again. We will have an EEG in the morning and Dr. Wright's(neuorologist) partner Dr. Oliver will see us. We will go from there. I'm hoping to get a bit of sleep as I was up almost 30hours straight yesterday/today without any rest. I was able to sleep some this morning/afternoon after Steve came.

I just want to say a quick, but heartfelt thank you to all who have called us, are praying for us or have emailed or left comments on the blog for us. Know that you are being instuments of the Lord as you are keeping my spirits up. We really are doing okay with this. We want to get this figured out for Matthew, though and get him on the road to developing and recovering.