Avrianna and Dan came to visit us today....it was WONDERFUL to have them here. I miss them SO MUCH! Avrianna had a surprise waiting for her from child life here on the floor......her puppy who of course is trached, LOL. It was so cute every time we would have to suction Danny she would get her supplies out and suction her puppy, Mia. One of Avrianna's favorite pass times, laying in bed with her brother watching TV.Danny has been up since 4 this morning back to his spastic and tremoring ways....UGH. That continued till about 11 and then he got a PCA pump. I couldn't stand see him like that any longer! So now his is getting a continuous drip of Dilaudid to hopefully aid in keeping him more comfortable all the time then these highs n lows over n over. It seemed to have taken the edge off today, so I can only hope that this works until we can get/find the cause of his discomfort. The other option is these episodes are related to a dysautonomia condition. That has been set off due to all the medical issues and procedures Danny has gone through in the last month. Which after reading up on it more.....alot of it make sense as to the gut and spasticity issues going on all of sudden. NEVER EVER a dull moment, right? LOL

Dan was able to do his training today when he was here with the trache cares on Danny. He cleaned the stoma area, did trache tie changes, did most of the suctioning, and watched as I pulled out my first trache doing the trache change. WHEW ~ First one under my belt, now I just have to put one in. Dan and I both had to be trained on the new home equipment Danny will need once he's able to go home and then we had an updated CPR training for a child with a trache. We are getting closer and closer to being able to go home, now we just have to whip Danny into shape, LOL.

Here are some pictures of the new house...as you can see it is coming along very nicely. Talk about another stresser on our list of NEVER ENDING DULL moments in our life, but seeing the pictures ......WOW and it's not even completed yet! ** Remember the house in the VBHA Parade of Homes with Custom Family Homes by Mike VanHoof ~ starting August 15th so stop on by to see the all finishing details & the handicap accessibility of our home.
Here are some bits n pieces of the place ~

Danny's room....with some of the lifting systems
Custom made shower lounge for lil man

Mstr Bath cabinets

Avrianna's bathKitchen

The Great RoomFront garage view

The Front

The Back

Snowed

Doesn't this face just pull on the heart strings or what?! Unfortunately this is pretty much the only face we've been able to see while Danny was awake today. So he's been snowed just about ALL day and we'll continue to keep him comfortable over the evening. UGH! Tomorrow he goes in to have his kidney stone blasted around 2, so we'll see if that is what is causing some of this pain.

Today Danny didn't tolerate his feedings and morning meds. He woke up around 3am wretching and then again wretched some of his mornings meds...so we didn't even attempt to give him any more. The docs stopped his feeds once again so Danny is back on TPN/lipids and they put all of his meds back on as IV. So we are now back to ground zero, no farther ahead from when we started this venture 1 month ago on Danny's Gi issues, UGH!

Danny did get his first trache change today by the ENT doc. I watched very closely and I don't think it's really going to be a big deal. It's just the concept of where it's going that kind of give me the chilly willy's at times. I'm sure after a couple changes it will be a breeze. I will change the trache myself tomorrow and we'll just see how it goes. I am so glad we were able to get the first one out today ....it was time. The neck ties were getting nasty and smelly, YUCK.

Danny is getting (as I type) a Foley cath as he hasn't had an impressive output of urine today. I'm sure it's do the the increase in the baclofen pump and/or the increase of heavy pain killers that have sedated him for most of the day. Well hopefully the cath will at least open his "area" to help aid in the passing of the stone particles once blasted tomorrow. I'm sure after the surgery he is going to be in some added discomfort at first as he passes these things so I'm sure he will be sedated even more in the next few days. At least the stone will be taken care of as we know it's an issue and then we can cross that off of Danny's pain factors list.....for now.

SoSo Couple of Days

Danny continues to breathe SO WELL! I'm still in amazement on how wonderful he is doing. As you can see Froggie and Danny are BOTH breathing MUCH better. Thanks KATIE!He is smiling and sucking on his tongue while sleeping, which are things he never has done before. LOVE IT!He is having ALOT of pain issues.....NOT related to the trache surgery. We are thinking either the kidney stone has moved or his gut really took a hit with all the antibiotics/illness this time. We are running more tests today to see if we can pin point the problem. Good thing is he is on some pretty impressive pain killers righ now causing him to be "snowed" and he still is breathing on his own with no machines, no desating.....IT'S GREAT!
It's so nice to have made a good friend while here...amazing how you meet someone and you just click. Lil 6month Kolton's mom, Kerri.....we are way too much alike and we could cause some serious terrible if we put our head together for too long, lol. We've both been a great support system for eachother. I don't know what I'm going to do when they leave....she's so wonderful. Kolton is Danny's new friend and he's touched my heart right from the start, he's another miracle boy, and I've enjoyed getting my baby fixes with him. Kolton was born with cancer and he is a ROCK STAR, after 8 rounds of chemo he is mass free, WOOHOO. He is not out of the woods yet as he still has 2 weeks of radiation in his future, but he's a lil fighter. GOOD LUCK lil Kolton you will always be in my thoughts n prayers.

Talking

Ok ~ if not being on ANY machines and breathing on his own isn't enough.........I already got to hear Danny's voice. I was told it would take some time for him to "learn" how to push air around his trache to use his vocal cords and find his voice once again. BUT, I was chit chatting, ok bragging, with some of the nurses in our room. WHEN...................wait for it,

His voice came out as plan as day! OMG ~ I'm just speechless, I know right? Me speechless?

I hope this is the start of good things to come for my lil man, he so deserves it. Whew ~ it's all over ~ Now let the recovery begin.

He hasn't woken up since surgery, but that's ok, he needs his rest to recover. He did get a dressing change already....HE did great! It's not an easy task right now, but once we are able to remove the ties it should go alot smoother. I'm so excited! I'm so relieved! I'm on a high! The nurses are so wow'd on how awesome and quiet his chest/lungs sound or shall I say lack of sounds.

Danny you are my HERO! I love you buddy......Your biggest FAN ~ MOM

Toothless Trache

Another tooth bits the dust....but the tooth fairy came in OR and she let me keep this one!! I just about cried....thanks OR you made my day.Well here is my rock star! He is breathing on his own, no bipap, no vent! He is sleeping and NOT desating at all....OMG! He looks awesome, usually he looks so pale and it takes him forever to come off anesthesia, but NOT today. We took him down 2 hours ago, had the procedure, recovery and he's back in his room......he's back and better then before he went down, WOW! He went down to the OR on room air and no bipap and we could see him obstruct here and there, awake. He's sleeping, on nothing, and breathing better then ever!!!!! Can you tell I'm one excited MOMMA! They did go in and put new tubes in his ears too....the left (which was out) looked great, but the right (which was in) was clogged and gross. Now we don't have to worry about that. The clear/white tubing is just direct humid air going into the trach to keep it moist...other then that he is doing ALL BY HIMSELF!!!!! HUGE SMILE ~

Blahhhhhhh Day!

I like these days! Not too much to report and not too much going on.....so far. I've decided to have a lazy day....I'm still in my jammies and really have no amibition to get out of them, LOL.. Danny decided to take a long nap so it's a lazy day for hime too. Danny was alil upset and irritated last night/early morning causing him to run alil temp and then start to desat for awhile so the doctors upped his O's and Ibuprofen.
He still continues to have nasty diapers so they are going to give his gut a break still and not feed him yet. Danny will still be getting his nutrients through tpn/lipids via IV, until his diapers start to look better. No sense on rushing Danny as that'll just set him back to the beginning if he's not really ready, which will just make our stay longer.
We were able to see a whole bunch of Firework shows last night from our view, but it just wasn't the same so about 5 minutes into it I decided to run down and get an ice cream sundae instead. That was much better then the fireworks show :)
The doctors are looking to get a Care Conference together tomorrow or Tuesday so they all sit down round table and discuss the Trache procedure. I believe it will be done next week some time also. I so hope this will make Danny's breathing better, keep him off the machines, and give a quality life to my lil man that he is entitled too.
Everyone (including me) has to get over the word Trache in their own time. It's a scary word and the misconception is that it's a end of life thing, but on the contrary this should give Danny a better longer quality of life so he can enjoy life instead of struggling to breathe to live. I went through this struggle when we put Danny on Palliative Care in his earlier years and that too is a great program to help give him a longer quality of life NOT END OF LIFE. I already bi pass his floppy and poorly structured airway with his feeding tube to feed him and this is really no different. His lung function is working properly it's just the upper airway causing him grief. We knew this could be in our future for Danny so it's not like it's a surprise, we've done EVERYTHING we could to delay the inevitable and now is Danny's time. I needed to have a mind set of why would I NOT do it and who am I really NOT doing it for. I could only say it was because of ME and that would be selfish in my part and so far in our journey all I've done is be selfless so why change now. We've had a very long road, alot longer then most have thought, to dodge the Trache. I would be a hypocrite if I didn't give every opportunity to let Danny shine, with all the we've done so far in his lil life. If you look at the BIG picture his is already on "life support" we feed him with a feeding pump and he has a bipap (that since this illness he hasn't been able to get off of for more then a couple hours a day, that's not way to live). Hopefully we'll be able to (once the trache is in) have him off the bipap once again and the suctioning cares will be get ALOT easier. Of course it does come with it's list of cons, but the pro list is so much better right now.
I will keep you all posted on our time line. All I know is once the trache is done, it will be week before I can start learning the cares myself. I was told that after the trach is in it can be anywhere from 2 weeks to months before we are able to go home. It all depends on the home nursing care......luckily we've started the process to get a nurse in the home, but that could take a month for it to go through. Then the biggie finding a nurse to help us care for him. The will NOT let us go home until we have one, sooooooo.............Know any good nurses that are trache/vent certified? Send them my contact info!!!!! It looks as if the summer once again is repeated as last....Hospital bound :(