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