Rocky Start

We've been on this new seizure med now for about a week. It has definitely shown improvement in Danny's seizure, NOW. In the beginning I wasn't too sure it was the right fix for him. Then on Tuesday morning he had a very long intense seizure and I was ready to throw in the towel, but after talking with Dr. Kasper we realized it wasn't the new med it was the titration off the old med that Danny was reacting to. His system has been on this older med FOREVER and is obviously dependent on it more then the neurologist's eagerness to get him off of it. So Danny's seizure on Tuesday was induced by withdrawal.....poor bug :( Dr Kasper set out a new titration plan and Danny has been doing well ever since. The quantity and severity of his seizures have lessened. Woohooo!! The significant side effect of Onfi is the increase of secretions. SO the suction machine is getting a work out. Then again I'm not totally sure I can blame all of the added secretions on Onfi as we've been having unseasonal like warm temps and the allergy levels are HIGH here. We all know how well Danny does with Allergies....NOT GOOD. Every year the allergies have admitted him in the hospital with some respiratory CRAP. Danny has always had heightened respiratory junk for allergies then he does during cold n flu season. With allergies knocking on our door AND Onfi.....hold on tight Danny here we go. While we were into see Dr. Kasper on Tuesday he took a look into Danny's left ear. It started bleeding last Saturday and it bleed for just about 2 days straight, pretty alarming to say the least. Well Dr K pulled out a clot that just tickled my tummy. I swear it looked like a leech......GROSS! I'm sure Danny can hear better with that thing out of there, but now the inside looks just painful and traumatized. So this afternoon we are heading down to CHOW for the ENT to take a look at it and give us some insight as to what to do to get his ear to recover. After years and years of issues with Danny's right ear now the left ear is wanting to play ~ poor bug that HAS to be very painful. It's going to take us twice a long to drive one way to get there then the time we are going to spend in the office with the ENT. At least the weather is nice out AND we enjoy talking with the ENT. Dr Martin to the rescue ~ lol.

Like I said the weather around here has been just BEAUTIFUL. It's great! The temps during the day have been in the 60's and 70's and the sun is out. Things are starting to turn green and I can see the sprouts of my flowers n plants popping out of the ground. YAY!!! The heater is off and the windows are open in the house, BREATHE!! We've decided to cancel out trip to Florida over spring break. With the weather here I see no need to drive 27 hours straight to go down south. There is more for us to do here then down there and there's not tiring drive to go along with it. We are planning on taking Avrianna (and possibly her cousin from Tomahawk might stay with us for the week) to a water park and maybe down to Chicago to the aquarium. Avrianna would be content to just stay home as we are going to be opening the pool early this year, due to the warm temps AND we put up her trampoline that she got for Christmas up in the yard. We don't see much of her at all......she LOVES that thing. It helps that for dive they also practice on the trampoline so this for her is a dream come true. I now have more leverage to get things done from her......or NO Trampoline/Dive. Avrianna just LOVES this sport~ she still talks about it alot to anyone that will listen and shows alot of enthusiasm.

I can't keep this girl on the grounded on her two feet she'd rather be flipping around

Have a safe and Happy St Patrick's Day from us to YOU! Take Care and thanks for stopping by.

Do I know my Lil Man?

Danny is great with all his procedures yesterday :). Surprisingly he came up to the room awake, I hadn't planned on seeing those baby blues till some time today. He came up to the room about 6:30pm, on a vent, with out his PCA (pain Pump). So things were a lil crazy trying to get him settled and comfy. Thankfully he has nurses that are already "seasoned" by Danny -LOL. They were/are wonderful with him. Once again it helps ease the admission when you have friendly/familiar faces that know most of Danny's Lil curve balls. Unfortunately we weren't as lucky with the RT and NP at admission/during the nite - so the nite wasn't as smooth sailing as I had hoped but all is WONDERFUL this morning. Once I saw Danny's #1 RT walk in the door I knew things were going to go better for Danny's recovery path. Jackie is AWESOME!! We LOVE her as she knows what needs to get done, she follows through, she is patient, and kind and on and on. With Danny she is His ROCK - RT is so important in Danny's world :).
The med port was placed in Danny's chest for the second procedure. The surgeon said that it was a lil trying to thread the catheter under Danny's clavicle but he was successful in getting it in the optimum spot. Go figure Danny presenting a challenge to the "new" doc. As this is the first time Danny had to be seen by a general surgeon. I know I can't believe it myself, but all the other surgeries or procedures have been done by a specialist. They haven't accessed the med port yet as they left the PICC line still in....it's an access he already had so why pull it until we know for sure the port is going to be a good thing for Danny (ie infection or allergy reaction).... just in case we have access as they tried to get an IV in during surgery and they were not able to.
Then the ENT took a look at his ears once again. They still did not look the best especially the right side. There is still granulmona and scar tissue in the right ear. So Danny got his ears deep cleaned and new hypo allergic tubes in both ears. Once the tube was put in the right side a lot of blood started draining out of it, YUCK!
The day nurse and. Ite nurse was herd in the room when he came up from OR so Danny was tag teamed. It was a good thing as he was a Lil high maintenance once on the floor. From bleeding out of the trache, out of the ears, the wound dressing was filling up with blood, getting the PCA on the floor to get him more comfortable they had their hands full. Danny just loves getting all the attention.
The ear drainage has slowed down a lot and he is no longer bleeding out of his trache :). His incision site is still touchy and along with his blood work being a lil off this morning he might need some blood product to boost him up.
The best news is, he is OFF the VENT. Last nite was awful with Danny being on the vent as he fought it all nite causing more grief then good for him. Danny breathes so slow and shallow when sleeping the machines don't recognize it so it will steal Danny's breath away when he really is breathing...then causing the machines to alarm and on and on. We went through weeks n months of this when they wanted Danny to be on the C/Bi-pap. Once Jackie came in and saw he was on a vent she did her thing got him off the vent, in a matter of minutes and he is resting and breathing comfortably :). It's looking better for sleep tonite-wooohooo. I've been up since 2am so it's a Jammie/nap day today...visitors beware -LOL.
I feel a headache coming on.....can't imagine why? So looks like my nap time is near!