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.

Night Owl

Danny really enjoyed having his sister visit him....just like at home! Both together chilln out watchn TV. Boy I wish we were at home~ The 3 hour visit just wasn't enough Avrianna time, but after almost 3 weeks of not seeing her it wonderful to have her around. How sweet ~ AWE

Danny's talking to his sister.....MISSED YOU AVRIANNA but what are you doing in my bed?!

Our front door for the last few weeks!

Danny is still having some issues....this weekend he's pretty much been UP around the clock. He goes to bed around 9:30 but on Friday night up around 1am for the rest of the day, Saturday night up around 2:30 then manage to nap after having sedation for 4hours, and last night up at 12:30 for the rest of today. This is all getting very old, I'm getting very cranky, and tired. It's not just the not sleeping part....when he's awake it's like I have my old Danny back ~ Very stiff, spastic, tremors, plus touch and sound will set him off too, it's exhausting to just watch him do this for most of the day. Today I had my fill of everything and unloaded....it didn't help the nurse on this morning cranked me right up. She wins the floors gold star for "The Most Laziest", just my luck. No worries we'll no longer have to deal with that again, LOL. Dr. John (Palliative Care Dr) got ontop of some of the pressing issues that Danny has been enduring all weekend and talked with the specialists that would be involved. We increased Danny's baclofen pump plus found a Dr here at CHOW that will manage Danny's pump on a regular basis, YAY! The Urologist, Dr. D, visited Danny and we've agreed that Danny will have surgery on Wednesday to get the 10mm (1cm) stone out of his left kidney plus take a look at what going on with the "pocket" in his right kidney. That's just one more thing we can mark off the pain factor list once it's taken care. I was able to find out that the right hip (the one that was just repaired) is sublexed alil, but the doctor feels it's not anything that would warrant his pain/spastic activity lately. I'm VERY disappointed that he his hip is already having issues and it's only been 6months, ugh. We did start his feeds up again and start his meds back to oral instead of IV, which is going soso. Tomorrow is the BIG day....Danny is having his first trache change by Dr Beste (ENT), then it's up to me to start to learn how to replace the trache myself. I'm running on fumes right now....Danny is sleeping so I am going to crash and catch some zzzzzz's too.

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UGH!!

Today is becoming just a repeat of yesterday.......and yesterday wasn't so HOT, well Danny was. Lil man woke up yesterday at 1am and was agitated and shaking in bed. By 8am he spiked a fever, heart rate jumped and was breathing REALLY fast. So they ran blood cultures, urine cultures, pick line cultures, and spit cultures. He is miserable! He didn't nap at all yesterday but we finally got him to sleep around 9:30pm.....then he woke up this morning at 2:30am, so here we go again. Obviously he is in some pain.....but where? So far the blood tests from yesterday have come back alil off but nothing that sticks out as of yet. I'm sure they will do more tests today to see how things are going. Of course we have a new batch of docs so they always go to the seizure disorder first. I knew it wasn't seizures, they didn't look like seizure, and he isn't acting like he is in a seizure.....but what do I know. They ended up calling in an EEG tech (she was at home) to come in and do a 30minute EEG, guess what.............NO SEIZURES. Now that was surprising! Don't check out the kidney stone we KNOW he has, that was suppose to be taken out on Monday, but the trache trumped the stone. Don't look into the VRE that we KNOW he has, as if this bacteria ends up an infection then he is in a world of hurt. Which I've found is all over the floor here so I'm almost positive is was a bug that was GIVEN to him not something HE got. Don't call the ortho to look at the xrays that shows a possible right hip dislocation (don't even get me started about this one!). One doc says it may be out and the other says no it's Danny normal......UM, He just had a HUGE surgery to put this hip back in so it BETTER NOT be out. Security may have to be called if they tell me it truly is! So needless to say I'm tired and crabby. Doesn't help I have a nurse today that I've already had issues with, so..........................? Good news:
1. Danny is still going AWESOME with the trache.....I'm so glad we got him comfortable with that, now if we only could get him better so he can enjoy it.
2. Today is Dan is bringing Avrianna down to visit. I'm so excited!! I haven't seen her in about 3 weeks......I'm going to do some serious loving up on her today! Danny got her a few I MISS YOU gifts, so we'll give her those today too :) I will post again later when I know if/what/when things are going to on, but it's a weekend so Don't hold you breath!

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.

What an afternoon - 3rd post

I know I posted this picture in my last post....I haven't lost my mind totally.....YET! But this is the face I have had to look at ALL afternoon. No matter what I did to make it better it didn't work. He cried so long and hard today his voice is very hoarse. My heart is breaking!!! I pulled out all the tricks; repositioned, stroked the hair, turned his vibrating bed on, sang to him (I know that probably made it worse, LOL), and I even gave him a sponge bath thinking maybe he just felt miserable. No relief for Danny...I wish he could talk so I knew where it hurts, sigh. So I played the big card....I called Dr Kasper (not only after hours, but he is on his holiday vacation in another state). He was a big help!! Danny is resting peacefully now, but too peacefully. I knew that was going to happen as we increased his Clonezepam (don't really like this med) which is for his spasms and seizures. It's a muscle relaxer so to relax his spasms it also relaxes his airway, YIKES! He is already destating and on the bipap. As long as he doesn't drop too far down with his breathing I'm ok with this.....it will let him rest and recover. Danny's pain is like a snowball rolling down hill...if you don't nip it in the bud right away he becomes (like his sisters attitude drama queen) a drama king. Not to any fault of his own but his lil body and brain just can't comprehend what is going on and he goes into a HUGE sensory overload. Actually I had thought this was going to happen alot sooner so he was doing well. But with today, his pain I couldn't fix it in time, which in turn started crying, then spasms, then came the seizures. I felt totally helpless as I did all that I could......so that's when Dr K came in. I hope this works out for him and I get to see a smile or two on his birthday.....no more pain & crying ...... cross you fingers. Thanks again for all of your support it's afternoons like this when I think I'm going to lose my mind, then I come on here and you all make me feel like I can do this. You guys ROCK!! I hope to post pictures of my smiling lil birthday boy tomorrow. My mother, niece, and nephew are stopping in the late morning to say HI and see the birthday boy.....then if weather permits I got an email from the kids Make A Wish grantor's and they wanted to stop out tomorrow night. YAY! We are trying to stay warm with a fire in the fireplace as the weather is still extremely cold and it looks like we are suppose to get another 2-4" of snow everyday for the next week, AGH!! I can't believe the amount of snow already on the ground this year. They said we have already gotten over 3x the amount of snow from last year this time. Florida here we come.....I wish!! Thanks again for following our journeys.