Getting There

WOW does the time slip away from me the last few days. I've gotten alot accomplished at the house...well at least with what is here. The other house is still full of stuff that needs to be brought over. I've gotten to the point that I can keep up with the loads that are being brought over. Once they get here I put the stuff away right away, doesn't mean the stuff will stay where I put it, but it's in the close vicinity and out of boxes at least. The OCD has kicked in full gear and the boxes were stressing me out, BIG TIME. I NEED order and organization ~ Hello my name is Lori and I have a problem, LOL!!
I started my MS treatment on Saturday. The nurse was nice enough to come out to the house and show me what and how to do it. WOW ~ not the painless way of doing it, but it has the lesser of side effects from the other options. I have to give myself daily injections which doesn't hurt at all, but afterwards for about 10-15 minutes it stinks like crazy. All most like a bee sting! I hope the treatments sets this MS at bay for awhile. With all the hustle and bustle around here my symptoms have gone into over drive. I've gotten very weak, my left leg seems to drag more which causes me trip over it often, and my sight is not the best. I see double and very fuzzy at times. The nurse wants me to call the doctor some time today to see if I should go on a 3 day dose of steroids to get the swelling down in the brain (active or enhanced lesions) down.
Avrianna is so happy to be going to school tomorrow. Which makes this decision alil easier to deal with. I know she will have a blast and do great, but it's not with me and and the bond that we share I'm afraid will dwindle. I just loved watching her learn new things and me being apart of it. WE will do great, I'm sure.
Danny is doing WONDERFUL! The last two days have been great! He has been in his chair most of the day, helping me organize. The TPN is going well and the feedings Dr. K and I have already started to increase, woohoo. We are starting the wean him off some of the sedating meds and pain killers, so I'm very happy about that. Nursing has gone without a hitch. It still is going to take some time for me to get use to, but I'm a work in progress :)
I am hoping now that tomorrow Avrianna starts school and with the nursing around I will have more time to blog. I miss you bloggies! I am going through blog withdrawal, LOL. I have some awesome pictures of the house and some of the kids so I'm hoping to get them up on here this week. Thanks for being there for me, we are getting there....slowly but surly we are getting back to "normal"

Anticipation

So sorry for the lack of updates....and the shortness of this one. WE ARE HOME!! Woohoo!! I just got internet yesterday hooked up to the house so I wasn't able to post, plus today is the first night I actually sat down for more then just a few to relax. It's been very exhausting and overwhelming for me. Not only to get Danny in line, but to be in the new house, trying to move, and my MS acting up. I am praying for a good night tonight....as since we've been home things have been touch in go. The fist night home I thought for sure I was going to have to load him up and head back. His heart rate was high, he spiked a fever, and he was breathing terrible. This all started about 2am and this started up again this morning too. We found the humidifier wasn't working properly, instead of giving heated humidity it was just blowing hot air out drying him out. I've had to replace 2 traches in the last 3 days so Danny was primarily on his HME to keep him humidified till we foudn the issues. Today Danny's nurse found the problem and now ALL is GOOD! Lets hope for some sleep!!!

I have had so many people come in the house in the last 3 days, I feel as if I'm being pulled in each and every direction. I so can't wait till we are moved totally in, the lil quirk's about the house have been dealt with and I have Danny's nursing down.

Today I went in and enrolled Avrianna into 2nd grade at Lakeview Schools....I have a very heavy heart. Afterwards I took her to the store and got all her school supplies and on outfit, thinking that would make me feel better, but no go. I came home and pretty much just pouted. I'm in a tail spin right now and not sure which way it up.....this is not helping the MS at ALL. So I've stepped down and instead of living in denial I've hung up my teachers hat, sigh. I don't want Avrianna to fall behind and I'm afraid I won't have enough to time or energy right now for her schooling. I'm really upset about it, but hoping for the best. Avrianna seems to be very excited about it :)

I will try and post more tomorrow. Danny just fell asleep so I'm going to crash. I don't think I will remember my head hitting the pillow. Sweet Dreams!

DISCHARGE!!

Danny is being wheeled back up to the room from getting his new PICC line. Then we are still planning on being discharged at noon. YIPPEE ~ HORRAY! I will try and do another post yet today, but we'll see how smoothly everything goes once home. We are moving right into the new house so that in itself will be an adjustment, but a good one at that. I will be having alot of visitors coming today to bring me supplies and go over the instructions to the new machines so it will be all VERY OVERWHELMING at first, but I'll take it over staying here. Thanks again EVERYONE for all of your support while we were in the hospital. I wish I could say he was better, but we are not there yet. Please continue to keep my lil man in your thoughts and that he will be back to his self again real soon. Signing out as Mom and will sign in back later as Nurse, lol

Ortho follow up

So about 8:30pm tonight Danny's Ortho doc came in to talk about Danny's xrays that we took last week. Um.......Go Home Dr Tassone! He ROCKS ~ A WONDERFUL WONDERFUL doctor! With that being said he didn't have any good things to report. Just as we thought Danny's right hip (the one that we JUST had surgery on to repair in December) is "grossly" sublexed. It's pretty much back to where it was when we went in to repair it, UGH! My heart is heavy and I feel sick, that was a HUGE surgery for all of us and for it to be a wash already, ok that just SUCKS! Could it be the cause of Danny's discomfort lately, sure but we are not totally positive it's just the hip as the ITB pump has caused Danny problems also. Dr Tassone gave me a few ideas of manipulating Danny's hip, when we he is in a better mood cuz when Dr T was in the room tonight Danny was already crying for whatever reasons we don't know. If Danny shows signs of discomfort doing the maneuvers then we could bring him in and inject his hip with a numbing agent and see if the pain is better. NOT A HAPPY MOMMA!
Here are some xrays I had of Jan '09 showing the hip in with all his hardware.....along with the ITB pumpHere's another xray of Jan '09 showing the curve in his spine......which now is different then this too.Then on to his back......like Dr Tassone said about a year ago when his back was "stable" that when it goes it is going to go....well it went. His curvature was approx 48 degrees of a bend to the side in Feb. and now it's 65 degrees. The comment was the Scoliosis and Kypho are also "grossly" different. I forgot to even ask what degree the kypho (the bend towards the front) was. But by this time in the conversation I am just sick to my stomach. I wonder if that has any correlation to the ITB pump catheter continuing to slide out of his spine at such a rapid rate(don't even get me started on that)? A good question that I will have to ask Dr. John tomorrow. Dr Tassone would like me to bring Danny back down, "once the dust settles" to have him recasted for a brace.
After thinking about I don't think bracing would be an option I'm really going to do with Danny. It might change but right now, I just can't see having him in this uncomfortable brace day in & day out to do what? It won't fix the problem...it's in "HOPES" to hold the bend where it is and not cause it to go further. UM......NO, Don't think so.
I'm at a loss here. So I guess I'll look to all of you bloggies out there that have been in my shoes and get some feed back on what worked or didn't work for you guys. Do you brace? Do you do surgery? He can sit in his chair with a bend, but when or does it hurt? I'm just sick of all of this......why does this keep happening to my lil man? Can't he be cut a break once, seriously? Where is the fairness and justice in all of this? Put him through surgery after surgery. To just be knocked down time and time again. My heart is broken :( I just cry out for my Lil Man! I'm so proud of him and just wish I could take his place and give him a "normal" life, give me all the pain and disabilities. Is it too much to ask for Danny to be cut some slack.....THIS is NOT fair!

Cool PIC Line

This morning Danny's PIC line had nasty green goo and crusties around it. So we did a dressing change and cleaned it up. Once we lifted the white port up it was all blistered underneath and seeping. UGH! Danny didn't like it when they cleaned the area with alcohol, but I can't say I blame him for that. During the dressing change I noticed that the nurse pulled out the catheter alil out of his arm so she pushed it back in.....I'm not thrilled about that, as now if the wound was infected she just pushed the infection into his system. That Sucks! The decision is to pull this line out tomorrow morning BEFORE any serious problems occur. So Danny will be mildly sedated and brought down to IR to have this line now pulled and a new line put in his right arm. I am REALLY hoping this will not set us back and that we will still be able to go home tomorrow. Here is what his site looks like ... we had to put another Bio patch underneath the port so it wouldn't be sitting on his skin and we changed the dressing to this kind cuz his sensitive skin was pulling off with the other kind. I hope this one works better for him.Here's Dawn...she's the bomb! Thanks for making me laugh when some days I just felt like crying. I'll Miss You!I got to take Danny on another walk for alil while this afternoon after his bath. He wasn't too impressed with being in his chair today, as he cried most of the walk, but I did get him not crying in this picture. Here he is right in front of the doors into PICU. I took him down the elevator to check out the fish tank. Not too happy in this pictureAnd the fish tank wasn't top priority for him today. NOT a happy camper here either.
We went for a walk for not even an hour to come back to find his temp n heart rate drop out of the sky once again. I guess a hat and electric blanket is required even in the summer. We are not sure why all of a sudden he is dropping his numbers and in such a short amount of time. He has been on a warmer for about 2 hours now and we are not even close to what his temp was before we went on the walk. Amazing how fast he drops but it takes so long to recover. Boy I hope this doesn't set Danny back and keep us here longer.

Milwaukee Zoo

Danny is dressed and out of the room for the first time in 2 months....HIP HIP HOORAY! Unfortunately we needed to return back to the room today, but we made the best of of our time away.Avrianna was all excited that Danny and I are riding in the van with her. We waited patiently in line in the van to get to the entrance of the zoo. There was a very long line to get in....the zoo is about 5-10 minutes from the hospital and we took about an hour from door to door. The back up was because the zoo had an Ala cart (bunch of local restaurants with tents there) going on so everyone and their brother went there.

Don't they both look so good! Danny was a Rock star he didn't have any blow outs and I only suctioned him two times and that was just cuz I thought it had been awhile since, but both time much to my surprise he really didn't need it. Avrianna and I were attached at the hip .... skipping and hopping around hand in hand. I really Miss Her! The flamingo's were beautiful!Here they are checking out the penguins....."Look Mom there's the one from Happy Feet". LOLDanny sporting his new Milwaukee Zoo hat and Avrianna showing off her new dog.The weather was good....for zooing it. It was cooler out which I prefer when Danny is out cuz then he doesn't bake n over heat in the sun. We had a wonderful time getting out of the hospital and being together as a family. I LOVED IT! My heart was heavy when we headed back....I REALLY wanted to just drive home and say "ooops, I forgot" LOL. But we came back *sigh*. Danny decided to protest when we got back and started to be very uncomfortable, whimper in his sleep, heart rate hung in the 50's, and his temps dropped down 93.8. When we left he had a great heart rate and his temp was 98.4, WTF? Guess this is his way of saying get me the HELL out of here., Can't say I blame him. Guess he just got too chilly with being out, I had not only a shirt on him but a sweatshirt jacket, and then I wrapped him up in his fleece tie blanket. You would have thought that would have kept him warm. Guess NOT! We have him on a warming blanket right now in hope that once his temps goes up so will his heart rate.

Tomorrow is pretty much just a "holding day" for us just because they don't like to be discharged on Friday-Sunday. So Monday we should be busting out of here late morning early afternoon and we're going to move right into the New house. Can you say excited! I will have a very busy few days trying to get a new routine going with Danny, training some nurses, and getting the houses organized. Phew I will have ALOT on my plate for awhile that's for sure.

I haven't heard how the Parade of Homes as done this week yet, but I can guess from the buzz around that it has had some heavy traffic. I hope that our home and hard work with the design gives other sight and ideas that could potentially help others with there needs. Once I get all setting in I will post pictures of the inside.

Well my couch/bed is calling me....all this fresh air today and I'm wiped. Guess I am getting OLD. I am in much need of a massage and a make over! 2.5 months of sleeping on a couch isn't my cup of tea and being over a month over due on a hair cut, well let's just say there is a good reason why there are no picture of me from the zoo on here....can you say Shaggy Dog. It's to the point where I am contemplating if I should just start to grow it out again.

Night n Day

Well today started so terribly wrong, but with some AWESOME care, Thanks Mike, Danny is doing FABULOUS! It's night n day how my lil man is doing from this morning till now. Mike had his hand full this morning, but took charge, and got things done....even with Danny not feeling well he managed to smile at Mike a few times today and believe me those are not easy to come by. Danny got a new trache and his breathing started to get alil better. Then we pulled out the GJ tube and inserted his old style G tube. Our long term goal is to get him to feed back on the G tube again so I though now was a good opportunity to give it a try. If it doesn't work we can have the GJ put back in on Sunday. Which by the way he is doing wonderfully with the feeds n meds in his tummy right now. I hope this trends stays! Throughout the day his heart rate, Blood Pressure, temps and breathing rate came down. This morning I was looking at the monitors and not one number was up there that made me feel good, now tonight they are ALL perfect. I think Danny was so upset as everything was snowballing on him that it took awhile for his system to relax and come back to "normal". Thanks again Mike for sticking with my lil man, giving him great care, and most of all dealing with ME.
I was really working on Mike to see if he'll come up and do some Home nursing for us :)
Danny has his primary nurses all weekend so I have no doubt things will get handled and that I can breathe easy. It's always a good feeling when we get our primaries....less stress, GREAT cares, and always a good time. It makes the stay here ALOT easier when his primaries are on. Thanks Lisa, Paul, Stacey, Erin,Monica, Mike, Vikki, Mary and Tammy .... you guys have taken such good care of my lil man, I don't know how I would have made it through this LONG stay without your support, kindness, caring, and attitudes. Thanks for putting up with ME! You guys will forever hold a special place in my heart.
Tomorrow looks like we are ALL going to the ZOO, Horray! I will post pictures tomorrow night after we get back. I'm so excited to be spending some quality time with Dan and Avrianna as a family....ALL together.
Sweet Dreams n Good night! Thanks for following our journey's. Please post or comment to let us know you stopped by, we love hearing from you too. Take care!

Work in Progess

Last night I could tell Danny wasn't himself. His sats were in the 80's and his heart rate was increasing. I was hoping it was just a thing and it would pass., but his morning he wasn't much better and then WHAM he went south and fast. We ended up doing a trache change to see if his breathing would improve as he was breathing so fast. It did help some but I think his system has been working so hard and he was so upset that it is going to take awhile to get him back to base line. His sats are in the lower 90's which is ok but not were Danny tends to be, he continues to breath faster then normal, his heart rate is better, and the fever started dropping. Because of Danny's fever and respiratory status this morning they took an xray which I am getting different answers too. One report says fluid in the lungs and then the Doctor says it's nothing to be worried about. They also did another trache aspirate to see if anything is growing in there so we'll see what that says. A Work in Progress! Danny's G port on his GJ tube clogged once again this morning...and after multiple attempts it didn't clear the clog. The decision was made (by me) to NOT put in another GJ tube at this time....we put back the G-tube and we are going to see how well he tolerates it. Keep your fingers and toes crossed this works. I hate that there is no easy answer as what to do, but attempting the G tube just seemed to be a good idea. They were going to put Danny on the schedule to have a GJ tube back in on Sunday so if this doesn't work we are no further behind if it doesn't but we'll be ahead if it does.
I am hoping to speak with the ortho doc before we go home about Danny's back films that we took a couple days ago, but I haven't see him yet.
Tomorrow we were are ALL (Danny has a 4 hour sanity pass) suppose to go to the Milwaukee Zoo, but I'm not sure what is going to happen now. I am hoping for the best. Along with discharge as that is still suppose to happen on Monday still but I'm staying cautiously optimistic.

So Proud

The Finished Product! I will post pictures of the inside after the parade ends this weekend.I say this statement all the time.....Thanks Dawn for painting this in Danny's new room. I just had to share this!The plan is to be discharged (as long as Danny doesn't hear or know the plan, lol) on Monday and we will be going straight into the new house. I'm so excited not only to be FINALLY getting out of the hospital but to be moving right into the new house. To be able to show Danny his home, WOW....a reality that it almost didn't happen still bring chills. We are going to do a mini break out on Saturday. Danny got a 4 hour sanity pass so the 4 of us are going to go to the Milwaukee Zoo. I'm VERY excited!!!! I will post pictures of our Zoo experience.Well as you can figure I was able to get out of the hospital yesterday and go home to spend some time with Dan and Avrianna....not enought time, but some time. I can't get enough of this girl, she is my rock. I'm so proud of her! When did she grow up? Our conversations lately have been so "grown up", it's hard to believe I'm talking to a 6year old at times. To leave is always a time full of mixed emotions. As I'm so excited to get out of these four walls and see the rest of my family, but hate to leave my lil man, and then leaving to come back to the hospital is terrible. I'm an emotional mess. Avrianna has been such a trooper with all of this being away from her Mom and Brother for over 2 months, I'm so Proud of her! But enough is enough. It's heart wretching!! I miss her so VERY MUCH....and to have to leave her in the driveway waving good bye while she is crying after she was clinging to me to not leave is so difficult. I HATE this!!!
I have to admit I was not feeling very secure yesterday morning with leaving lil man as his night didn't go very well, GO FIGURE. Danny must have known I was attempting to leave. I woke up to him having a high heart rate, breathing funny, feverish, and a clogged G-tube. But things started to settle down once and we found the source of his "issues" so once we got him back on track with GOOD nursing I felt ALOT better leaving him. THANKS LISA ~ I don't know what I would do with out you. They did alot of changes while I was gone with his feeds. The did a Metabolic cart which involves him breathing into a "bag" and they can tell how he is doing nutrition wise. Really? That is so awesome and amazing. The test results came back that he is getting too much nutrition, hum.....the excessive weight gain in the last few weeks didn't give that away, LOL. So they took away the Lipids all together and decreased the TPN in put. We are tweeking the rates of the TPN and trophic feeds so that he can be off all machines for 4 hours each day. YIPPEEEEE ~ WOOHOOOOOO. We'll see how that goes and how Danny's system adjusts to that. He did have 5 BM's yesterday (oops sorry Lisa and Nanny....not really, lol) and one HUGE one already today so I'm not sure, but going to stay cautiously optimistic. They don't want him to "flush" out too much protein with the increase in BM's. They are going to do labs tonight so we'll see how he is doing by tomorrow morning.
Nanny (my mom) drove down and sat with Danny while I busted out. If you saw a pearl white car with the sun roof open, window's down, radio blasted, and a women driver singing her heart out dancing in her seat yesterday.....Yeah that was ME! *SMILE * It was an amazing feeling. Not only to just drive a car (sporty even) as I drive a full size van (my mustang, LOL) but to have the windows open and the radio cranked up as that would just wig Danny out! When I got home no one was around....so I sat on the deck enjoying the sun shine on my face throwing the ball for my first Baby, Bailey (our dog). She was so excited to see me, as I was to see her :) Once Dan and Avrianna got home we took off to go get some Hu Hot, YUM ~ I love that place! We even splurged and got a Cheesecake for dessert. OOOOOOO yeah! From there we needed to burn off some of our meal so we went Miniature Golfing. What a wonderful time! I so miss hanging out and having FUN with them.

Then we went out the the new house so I could see what they did to the place. WOW! Breath taking....I was so excited to see the furniture in the house. What a difference ~ It's now a HOME! We ended up staying there longer then I anticipated so I didn't get to take Avrianna to get our nails done, which I'm so in the dog house for, but I told her next week when we are home I am going to take her out for the day and just hang out with her. I NEED that I think more then she does. So nails, lunch, shopping, and whatever else we can think of....just me and her. I can't wait!! Her comment as I was leaving to come back to the hospital was she didn't get to talk to me much cuz Daddy took up all of her time, sigh. That just broke my heart.....when did she get so grown up? I LOVE you GIRL! Thanks for being such a good girl, I'm SO PROUD of you!

Not too much in store for today....just going through motions till "D" day. I'm still working on getting nursing for lil man once at home. That is not easy as the supply isn't there for the demand up in the Fox Valley and now that Danny requires a RN it's even more difficult. Another work in progress. So if you know any good RN's looking into being a Home Nurse provider please send them my way :) We are going to get Danny's xrays of his Kypho /scoliosis/ and pelvis some time today so that Dr Tassone can take a look at them and we can see where we stand with that for Danny. Danny is showing signs of discomfort in his right hip once again so we need to pin point is it the hip solely or is it the pump too. Alot of issues still are apparent for lil man but we just need a break of this place before we start on another path. Known issues at this time are still: Catheter for Pump is almost out of the spine, the pump is floating so still causing pain, the right hip sublexed, new diverticulum in the left kidney, liver functions up, and Stomach n gut still not working properly. We will see today or tomorrow how bad his back has gotten to see if that needs to be put on the acute issues list or not. *Sigh* Lil man NEEDS a be cut a break SOON! Please keep our newest friend Jadee in your thoughts....she has had a rough time and they need all the help/support right now. She has had multiple surgeries do to a staph infection. Last night she went into emergency surgery as the last attempt to get her wound to heal had failed. They are amazing people and I'm truly blessed to have them as friends. Please click HERE to see her story.

Vacation

I'm excited that tomorrow morning I will be leaving the hospital for a few hours to hang out the Avrianna and Dan. I plan on going out the new house and checking it out, I can't wait to see how the decorated it up. Then we are going to go out for some "REAL" food, YUM, I so can't wait for that. If the weather is nice I would love to take Avrianna out Mini Golfing, she's really good at it and I really need some time with her. From there.....who knows maybe even a pedicure and some shopping. My mom is going to sit here with my Lil Man tomorrow so I'm sure he will be getting somewhat spoiled with attention. Our summer is gone and I haven't been able to do anything with Dan and Avrianna. I hope that once we are home Danny is going to do awesome so we can make up for some our lost time together.
Today was very low key and boring. BORING is good, I Like boring! I crawled up into Danny's bed and we watched TV together most of the day. Other then the GGT level (Liver function) I wrote about before there is nothing new to report. I know AMAZING right? So when you don't see posts tomorrow .... it's cuz I flew the coop for awhile. I will post tomorrow evening or Wednesday with all of our festivities.
A TOMAHAWK POLL ~ there is this running "joke" bewteen Dan and I.....I had NEVER heard about Tomahawk, WI (Dan grew up there) before in my life till I met Dan and since then it seems like everyone and there brother+ knows, has been, or lived there. It's so amazing I just have to laugh when people say that they know Tomahawk, it's so small but SO MANY people know about it. So I ask that you post or comment about your experiences with Tomahawk, WI. I think it would be fun to see what, why, or if you know about this beautiful lil town.
Well turning in for the night...tomorrow is going to be long but refreshing and invigorating to hang out with my family for awhile. SMILE!!!!

Yesterday was up n down with lil man. His secretions were out of control but his feeding and other GI issues were stable. They changed the regimen of his breathing treatments in hopes to get a better handle on his secretions. They were terrible yesterday! He was breathing very fast and got feverish because of how wet n junky he was. They did do an xray and trache aspirate culture just to be sure he wasn't brewing something. So far nothing significant to report. All is better today, but it's still a work in progress.
Dan came down to visit yesterday which was a nice twist to a lonely day. Unfortunately Danny wasn't stable enough for me to feel comfortable to leave him, but we did get down and get a bite to eat at the cafeteria together. Avrianna didn't come with as she is hanging out at my sisters playing with my nephew and having a BLAST.
Danny's Liver function (GGT level) came back out of wack..... normal levels are 15-85 but his is 1021, WOW! So now there is concern about his LIVER. Ok ~really? The doctors have decided to stop the flucanizol (yeast treatment) as that could be a drive to some of the increase and the last cultures have shown that the yeast is gone anyways. The big drive is the TPN n Lipids.....this sucks! So we'll see what Thursday's labs come back as to see if dropping the treatment made a significant difference. If not GI will have to get more involved as then we need to start looking towards the TPN. Keep your fingers crossed!
The Parade of Homes is off to a great start. There was a wonderful turn out this weekend. Many were very impressed with the accessibility of our home. Woohoo, I hope that our home can give some insight to helping out others with trying to access their homes. If you get a chance to stop in to see our new home in the parade let me know your thoughts. The Parade will be done on the 23rd and then we can move in, I can't wait and can ONLY HOPE we'll be home soon.

Empty Promises n False Hope

As you ALL know I keep it real here on my blog and in my life so if you offend easily then maybe you shouldn't read further. I'm keeping it real today and reality sucks!
As I sit in Danny's room watching him fight to stay awake on this beautiful sunny weekend, I wait for him to fall asleep so I can go down and get something for lunch. Not wanting to leave him alone when he is awake as how lonely is that. Don't get me wrong Danny is having an ok day and he has great nursing today, but to whom do we have to share this with? After sitting in this room for 7+ weeks your mind goes to places I tend to not like going to. I sit here by myself with lil man day in and day out watching him either suffer or recover, depending on how you look at it. My husband is running around like a chicken with his head cut off trying to maintain normalcy with our business, our daughter, and he's taking on most of the responsibility in the building and moving of our home while I sit here and wait for lil man to get better. I feel terrible I'm not there for him to help out. We didn't plan for any of this to happen, we weren't prepared for a hospital stay let alone a 2 month stay, but we are doing the best that we can. This is not convenient for us! Dan and I are winging it with keeping up on everything that is going on. I just wish I was home so we could help each other out, as we are all the we got....DADL lives strong(Danny, Avrianna, Dan, and Lori). I really believe that DADL is in this together.... at the end of the day we are the only ones there for each other we have the same values, dreams, and goals but right now we are doing it solo. How frustrating, emotional, and stressful. There has been some help in all this so for the ones that have stepped up I am truly indebted to you.
After something like this occurs you definitely see the real person behind the words as..... Actions speak louder then words. 7+ weeks of being stuck in this bubble, multiple procedures, and I can't even fill two hands worth of visitors (I'm not counting Dan's visits) to see my lil man. All the "I'm there for you", the "if you need anything" crap are just words. Too busy to help us move, but yet how many are calling us for help when it's their turn. ....it's too inconvenient to cuz life is too busy, I understand. My favorite is call me up and tell me where you are going or where you just came from, but you don't have enough time to visit my sick lil boy. Or the "Do you want me to come visit"....I'm a firm believer if you have to ask then don't bother. Cuz you see we are so busy here in this room I don't know if WE'LL the have time.
If it wasn't for the wonderful Internet friends that I chat with everyday and my husband (yes, even when we on each others nerves) I would be in 72 hour lock down, if you haven't noticed this already. This roller coaster ride isn't fun and it's not a vacation. The nurses must think I'm a nut as I'm always on the computer (putzing as Avrianna would say), but this is all I got right now getting me through this.. is a computer. This is my outlet to the outside world and my support group. For that I thank you for being there and letting me be real.
The phone calls of "How's he doing" and "Why are you still there". We've been on this haul for how long and a "normal" hospital won't even take him so, how well do you think he is doing? My son's stomach and gut have stopped working properly he is being fed through his veins, how well do you think he is doing? Danny had to have a tube put in his throat to breath properly, how do you think he is doing? And if you are so concerned on how he is doing then come down and find out for yourself. There is this misconception that once we are home Danny is better, well NO he is still a sick lil boy........I just chose to go above and beyond to care for him at home so I can see my family. Lord knows I can't get anyone here so I can do something with them. Our lives can't totally stop while Danny is getting better....it must go on, it's just alil dysfunctional with everything that is going on right now.
I can't even take Lil Man for a walk down the hallway, or to go outside, and he can't have any of the special visitors anymore (ie dogs, clowns, baseball players, etc.) that come into the hospital because of his colonization of VRE n Psuedemonas (infectious disease). Danny ONLY gets to leave this room when he is having a procedure done. He has been confined to this room for weeks. Danny only has DADL and a few that have come to visit. So isolation is truly the over all feeling of today. We are watching life pass us by in our lil fish bowl of a room. I'm just sad for my lil boy today, my heart aches! I'm just frustrated.
I got this the other day from one of my Facebook friends. Her sister wrote this when she got sick. I really wish I could be able to meet her. Not only does this have meaning for understanding but also for being there and handling illness and loss. Many can say they are their for you or that they understand, but when the time of need comes NOT MANY will be found. Empty Promises and False Hope to ones that are holding onto a string.

"I UNDERSTAND"

Too many people try to comfort
The broken hearted and the ill
With the words, “I understand”
Saying I understand
Means you’ve been there.
Means you’ve walked the road I’m on before.
You shouldn’t say I understand until you really do.
Those words aren’t of comfort if they don’t mean anything.

If your sitting here looking at me
Telling me that you understand
Ill ask you how you made it through
Cause if you’re saying that you understand
It means you’ve been here too

Do you know what its like,
To sit in a room with doctors telling you
You’re lucky to be alive.
Do you know what its like to know you’ll never walk again?
Do you know what its like to wake up and not know where you are?
Or what its like to know you’ll never hear your children cry.

If you don’t know what its like,
Then please don’t say
I understand.
Those words aren’t of comfort if they don’t mean anything.

Do you know what its like to say goodbye
To someone who you love?
Do you know what its like to loose a parent at a young age?
Do you know what its like to loose a child?

If you don’t know what its like,
Then please don’t say
I understand
Those words aren’t of comfort if they don’t mean anything.

So if your sitting here looking at me
Telling me that you understand
Ill ask you how you made it through
Cause if you’re saying that you understand
It means you’ve been here too

Please don’t say I understand unless you really do….

By Kimberly Ann (Girly) ~ an amazing Mom, sister, and person

Parade Day

I'm having a Minty Mocha, strawberry Belgium waffle kind of day :) ... Celebrating the first day that my new home is in the Parade of Homes. Wishing I was there to see it off for the showcase, but this is as close to second as I'm going to get. All the hard work and stress is finally coming to an end. Thanks for all of your help and hard work Mike, the house wouldn't be where it is today if you didn't step in and take the reigns. I hope you guys have a wonderful time with the Parade.......Miss YOU too. LONG HAUL ~ GREAT WORK ~ GOOD JOB!! I recommend HIGHLY Custom Family Homes, thanks Mike!
Danny is doing ok. He had a higher heart rate and he was feverish ALL last night, but he is starting to come down. Danny woke up around 2am so the nurse gave him some benadryl and he fell back asleep till 6....that's alil better. Yesterday he started to really stool out so they had dropped his trophic feeds back down to 5ml/hr and since then it slowed down. We are going to keep his formula at that rate and continue to have it go into his J port in hopes to kick start his GI system. So far Danny hasn't started to wretch with changing over his meds to oral (all in the G tube) from IV........but we still have more to go. GO DANNY GO! If things go well, I've asked that we be released no later the the 23rd. So cross your fingers! Again it will only be a lil BREAK from the hospital setting and then we will reassess what to do with increasing his feedings in September.

Final Plan *sigh*

I can't take much more of this, I just want to crawl in a closet and cry. Fox Valley Children's Hospital isn't properly trained to take my son (but he can go home with me?) so we will be staying put in Milwaukee. For however long it may take to get him off PCA and converted over to all oral meds. Then the plan is to go home for a MUCH NEEDED BREAK and see the doctor at clinic the beginning of September to plan our next steps

3rd Plan for Danny

Ok ~ Are you guys as sick of this roller coaster ride as I am? 3rd Plan for Danny is to go back to Children's Fox Valley just until the IV & Pain meds are converted back to oral and so he has more observation time. I'm ok with that as it's at least closer to home, not sure when...attentive day would be Monday but we have to make sure EVERYONE is on board with that, and everyone is including Danny. I will post again later....but just wanted to let you know that HOME is not going to happen.

Newest Game Plan

This morning we were well on our way to getting closer to home as Danny tolerated his feeds of 10ml/hr of formula in his J port and some of his meds in the G port with no wretching or diarrhea over night. Woohoo! Danny was smiling, awake, and alert this morning it was such a nice sight to see. We decided during rounds this morning to increase his feeding to 15ml and we added back 2 more meds orally from IV form. Yesterday he did have 3 dirty diapers but no blow outs.... today he had 3 dirty diapers with one BIG BLOW out. With all the stooling Danny has been doing the last 2 days and the fact he is doing them all on his own without any assistance the docs are still thinking his GI system isn't reacting properly, UGH! His blow out diaper happened when I was down getting some lunch, sorry Lisa n Monica....Thanks for cleaning the mess. So I threw in the towel after the 3rd dirty diaper this afternoon. I'm inpatient now! So we chatted with Dr John, Danny's Palliative Dr, and we came up with the NEWEST PLAN. We are going to hold his feeds were they are, which is back down to 10ml/hr to just keep things running into his system in hopes it will kick start it back up, keep on all the TPN n Lipids, and GO HOME. This is no quality of life sitting in the hospital day after day running the same circles around n around......Try to feed him, wretching n diarrhea, Danny gets bloated, Danny's on gut rest, and then restart feeds. So we are going to go home, not transferred to another hospital, Home to spend some much needed family time together. Then after giving Danny's body a break for awhile we can attempt to restart the feeding process once again. So today I have been watching and participating in the IV cares and processes. I believe we are going to be released on Monday so a few more days left for me to learn what needs to be done once we get home. Plus they don't like to discharge Friday - Sunday, but I well see. Today marks the 7th week here at Children's in Milwaukee so I think I've been patient enough with all of this. Wish us luck that nothing new rears it's ugly head while we are waiting to go. The doctor did notice on the latest xray that catheter to the Intrathecal Baclofen Pump continues to slide down ~ ok STOP looking for things!!! It is really close to nearing the end of the spine....so we are now going to keep on the oral baclofen instead of just upping his pump cuz if the catheter should slide out of his spine he can go through serious withdrawal. So much for the ITB pump system to last approx 5-7 years, we haven't even made 3 years yet. They want me to bring Danny in for xrays once a month to keep an eye on where it's located. With him pretty much laying in bed while we've been here it's dropped 1.5 disks so I wonder how fast it will slip once home and repositioning and moving him around much more. If it should fall much more we will need to have the catheter repositioned, WTF! Another reason to wonder about staying on the TPN n Lipids for awhile.....more surgeries lurking in Danny's future. I'm so very SAD! As if Danny's life wasn't hard enough but to be dealing with all of this crap, OMG I'm going NUTS just knowing what my lil man has been dealing with, is still going through, and needs to have done to him yet. sigh

Miracle Treat Day

What a great Reason to go buy a Blizzard.....like you need one Right? YUM! Wish I had a car tomorrow :(Buy a Blizzard on Miracle Treat Day at a Participating DQ Location and it will Benefit Your Local Children's Miracle Network Hospital.
Since 1984, DQ has Raised $77 Million to Help Save and Improve the Lives of Children in your Community. Visit www.MiracleTreatDay.com to find a Participating DQ Location, and Then Help Us Make Miracles Happen!

The Game Plan

Me chilln out with my Lil Man! He blinked

Pretty soon he isn't going to fit on my lap - sighI started off the day on an up beat, good note. I got up around 6:30 (that's with passing out around 9:45 last night...I was so out I didn't even hear the phone ring when Dan called, sorry dear), took a shower, did my face n hair (yeah everyone on the floor is wondering why I'm "dolled" up), got my coffee, and ALL before rounds. SMILE! All in hopes that today will run smoothly, um Not so much. So hear it goes once again. As Avrianna would say...... Gimme the straight poop (thanks Dan).
This morning the doctors ordered an ultra sound of Danny's abdomen to see if there are any clots or anything abnormal that would warrant Danny's loss of protein, albumin, and zinc which might be causing the fluid retention and bloating. He is getting it all in his TPN so he should be ok with levels, but they continue to drop. The ultra sound tech was up in the room very promptly much to my surprise, BUT the correct machine wasn't ordered. So they are going to have to have them come back up to do it again. OOPS! BUT the ultrasound that was done with the first machine did show "something" in his left kidney still ~ WTF?!?! Dr Durkee came up to the room immediately to say how disappointed he was with the recent findings, but seeing Danny has been through so much and there isn't any evidence he's in discomfort from it we are going to watch it and recheck it in 6 months. Well hell we might still be here by then ~ God I hope not. I'm to the point of putting a sign on the door.....If there you don't have good news then you can NOT ENTER, lol. I was so disappointed to know Danny went through all of those kidney procedures and he still has issues. I went down to get a Smoothie and cry after I was told that. Now I'm better and ready to take on the floor once again.
Some of tests have shown evidence that Danny has a lactose intolerance so it's a good thing that none of his formulas had a milk base to them. Which then strikes an interest with some of the doctors that this might be an allergic reaction to the formula he was on, so once again they are attempting to feed him with another new formula called Neocate Jr which is suppose to be an easier formula. The decision at this time is to leave in the GJ tube and see if the irritation is just due to it being so new and Danny just needing to readjust to it as we all know Danny takes along time to recover and acclimate to new things. They are afraid that if the new formula or the attempts of putting things in his tummy fail then we would have to put the J port back in. We are trying to give him some of his meds in his tummy but his food is going into the intestines right now. So until we have more concrete evidence of why this has all happened and if he starts to tolerate things in his tummy then we will discuss pulling the J port at that time. Please pray no serious retching or diarrhea in the next couple days! And that no other serious testing or procedures need to be done to my Lil Man.
So the "Plan" is IF Danny should tolerate the GJ tube feeding n meds for a few days then they are going to transfer Danny back to Children's Fox Valley. So it looks like the soonest would be Monday for us to break out of here and get closer to home. At least we have a good idea now of what Danny needs to do and what Fox Valley is willing to handle with Danny's recovery. That will also gives us some time to get a good sense if Danny is on the right path with trying to get him off the TPN n Lipids or not. These constant U turns we've been riding suck! I don't want to go back North to be sent right back down if things are off. Now if Danny should pull out another trick out of his bag then the deal is done and we'll be here longer.
The Doppler Ultrasound was just done so now we await what the GI doctor report on if there was any findings in that one.
Dan and Avrianna have been very busy with the finishing touches of the new house getting it ready for the parade this weekend. I wish I was there to help them out. I can't wait to see it finished and be able to show Danny his new home.

Scopes

Danny pitched another curve ball today. I can't even believe this! Danny blew up like a balloon today...now he's a husky "puffy" boy :( I noticed this morning that his arm was bigger then normal. So the nurse measured it and yes in deed it blew up by 1.5cm in diameter. Then while looking over the rest of his body I found both his arms, hands, feet, and legs were significantly puffier. To the point that they were getting hard. We decided to weigh him and his weight was 63.8 HOLY SHIT, he's gained 9lbs in 1 month and 5 of them were in the last week. The doctors came in and they were thinking about not doing the scope today, cuz he's that bloated. I was so upset I had to leave the room. Are you kidding me? Come on, seriously how much more can we take. So when I went for my "breather" the GI docs hung around to look at ALL of the puzzle pieces with Danny's GI tract issues and they've decided to go ahead with the scopes and do more biopsies. UGH! Now GI FINALLY thinks Danny has a serious GI issue and they are going to run more tests today. Really? Seriously? Hmmm haven't I been telling them that.... oh that's right it's their idea now so it's warrantable. I heard they were going to give Danny lasex again to see if he can pee some of this extra fluid out, but they haven't done it as of yet.
The Scopes were done in his room so I got to see them as they were getting done, I thought it was neat to see everything. I got to see what the G tube looks like from the other side and how the J tubing runs into the small intestines. Well we found the source of the bleeding....he has gastritis (ulcers) in his tummy and all around the pyloric valve (where the J tube enters the intestine) was red. I heard they were going to start the Carafate in the tummy to start to coat it and stop the bleeding, but that too hasn't been started as of yet. So it looks as if the GJ tube isn't a good match for Danny, but right now it's still in until all the doctors have spoken and they get a game plan. I'm just sick to my stomach about all this. My head is spinning and there is still no end in sight.

Out of Control

This morning I had yet again another blow to the heart strings. Danny's hemoglobin is continuing to drop ....not drastically but dropping. We are not to blood transfusion state yet but it's still very frustrating. My heart just sank.....So I had alot of questions in rounds today .WHY is it dropping, Where is the blood coming from that is draining out of the G port, Why is Danny still in pain, and When are we going to get out of here. The doctors feel the bleeding n pain could be coming from the GJ tube as it might be wearing on his stomach lining. With us not being any further ahead with having the GJ tube, well actually farther behind since it's been in, the idea is to possibly pull it and go back to the G tube. UGH!!! The doctors have decided to do another endoscopy tomorrow, so yes he is going to be put under once again during this stay. Just to rule out anything funny that may be going on in his tummy. Then they will get a good look to see if the GJ tube really is or isn't right for Danny. They were going to start him on Carafate which is used to line his stomach and intestines to stop the bleeding, but now that they are going in to see if they can find the source they have it on hold till after the procedure tomorrow.
Danny's Urine culture has come back with growing ONLY yeast nothing else. So they have dropped all of the antibiotics and now he's on an anti fungal med to get rid of the yeast. His trache aspirate culture as also started to show yeast too so I'm glad they have started him on meds.
Danny is VERY lethargic and pale today. He hasn't woken up much and when he does he just grimaces. The docs have also ordered a Xray of his mid section to see if they can see anything out of the ordinary. I can tell they are just as stumped and frustrated as I am with trying to figure Danny out.
We got a couple visitors today. One of the nurses that took care of Danny while we were inpatient at Children's by our home, Heidi. She came down with her daughter for an appt and just stopped by while they were down. Thanks guys...It was so nice to see you. Heidi was Danny's nurse when he coded almost 2 months ago. Wow ~ where did the time go (sarcasm). Then in the afternoon Michael, Danny's home nurse, came down to visit. This is his third visit down the see lil man, it's so nice to see his interest in Danny's well being. :)
In rounds the subject of us getting out of here did come up. The "plan" is (if they don't find anything totally out of whack in the endoscopy tomorrow) to either be transferred back up to Children's (if he's not stable enough) or to go home this week. We should know more tomorrow with what route we are going. Danny is going to be an add on so I'm not sure when he is going down so I will keep you posted. Either way it will still be alot of work to take care of Danny as he is still on TPN n Lipids, not tolerating feedings, and on a PCA pump.
I'm relieved that we are all on the track of getting out of here and getting closer, if not to home. I am hoping they don't find anything more wrong that will prevent us from leaving to go to either place. Closer to home right now is just as good as going home....Baby steps here Baby steps. I just feel as if my life is spiraling out of control lately.....and all I'm doing is watching it fall. Sitting around for 2 month in this box starts to get to you. I'm NOT built for this, this is SO NOT ME. I can't just sit around and honestly I'm super surprised I've made it this long. There is so much to do and so much going on in my life right now it's driving me NUTS just sitting around. BUT it also has been a reality check in more way then one.........take me out the equation and what happens. Dan had suggested last night the we think seriously about home schooling vs public schooling. A thought that has crossed my mind a couple of times lately, but I just don't think we are there yet to stop home schooling. I really enjoy doing it and have a better relationship with Avrianna because of Home schooling. With the heightened risk of bringing germs into the home not only for Danny but just for lil Miss Spleenless I'm not ready to take that on (don't even get me started with the stronger strain of the swineflu that they think is coming).....I don't think we're there yet to put her into public schools. With the thought of putting her in school and getting Nursing for Danny I was an emotional wreck this morning. Then what about me? What am I going to do? I constantly hear "You need more YOU time." I understand that BUT by taking away ALL my responsibilities I would go into an ugly place. It's weird as I understand and except that I need SOME help and in the next step I feel like I'm fading away to being invisible. I need to work on that, I'm not used to ME time and what I should be doing. I don't feel right doing it and feel this overwhelming sense of selfishness, again I need to work on that.
Saturday is the start of the Parade of Homes and I hope to see you there. Here is the link to VHBA for info of the Parade and here's the link to our HOME info sheet.

Sleeping Boy

Well I can defiantly tell lil man has something brewing. He slept most of the afternoon yesterday, all night last night and has been out most of the day today. His urine cultures still show yeast and it did grow out an infection, but lab forgot to report what bug grew out in the culture. DAH!!!! So the floor docs are looking into it....the bet is that it is the VRE that has flared up. In a way I hope so as then we can be treating it and we can be out of Isolation when in the hospital. The blood cultures haven't shown any growth, Yippeeeee. And the trache aspirate still only shows psuedemonas, but he had that even before the trache was put in. He has thicker secretions today, we are keeping a close eye on him, and we might send in another aspirate culture down it's that thick :(
It sounds like Danny will possibly be going home on TPN n Lipids. As now they think this is going to be a very long haul for him and this gut paralysis might be more then just a "break" from all of what has happened to him lately. Danny's bowels are just not working properly yet and there is some concern when or if they will start back up....his bowels will have awesome sounds like he is going to explode and then there is nothing. It took two babylaxes to make him go yesterday and he BLEW, WOW. All liquid still no substance at all, so his body isn't absorbing yet. But if you think of it....that takes talent to hold all of that liquid in. He is doing better today with the Zophran on board for the retching so they are making it a scheduled med instead of an as needed cuz it's ALWAYS needed.
The GJ tube isn't as effective as they had hoped not only for the feeding aspect BUT it the G port isn't draining well. It's like the port hole is stuck up against the wall as we have to manipulate the tubing alot to get it to drain out. We have been trying to drain the G port for a day in a half with alot of bile, secretions, and blood coming out. His belly is still actively bleeding so we are looking into the cause or reasons for that. AUGH! Just another thing I have to deal with.
Dan is going up to Tomahawk today and retrieving my princess. She's been hanging up there with Papa n Claudia for the last 2 weeks. Can you say SPOILED ROTTEN, but that's what grandparents are for. Spoil them and send them home, right? Then she is for a fun fulled week at Gym Camp. She a busy girl....I'm not sure where she gets that from, LOL.
Well the house is getting wrapped up with odds n ends as the 15th is the start of the VHBA Parade of Homes . Click HERE as they updated the info for the parade today on their site. Hope you enjoy the Parade!

At A Lose

Today is a very frustating, bang your head against the wall day. Last nights attempts of feeding Danny didn't go so well. He was wretching even with putting meds in his J port. He decided to spike his temps around 4am and then they dropped out of the sky so far for the day. He is in alot of discomfort today and he's hit hourly doses way before the hour is up with his pain meds, my heart just aches. Danny is passing clots out of his G port now too. Where is all this pain coming from? Why is he still wretching? I'm so sad today. I wish I could just take all this away. What more can we do?

GJ

Danny got his GJ tube today. Not only does this tube allow us to put things in his tummy but it also allows us to bypass his tummy and put stuff in his intestines. So now that his tummy isn't tolerating food n meds we can put it in his intestines so hopefully he can get off the IV nutrients of TPN n Lipids. They already started feeding lil man via the J side...so keep your fingers crossed that this works! It's been very quiet here today. Danny has been sleeping pretty much all afternoon. He is in alot of discomfort so it's a good thing he is sleeping. I haven't heard anything with his cultures as to what is brewing but they did say they found yeast in his system. Not sure what that all about or what they are going to do about it. I know they have ordered another test so we'll see what tomorrow brings. Right now his numbers are more Danny like, so I'm very happy about that, but I also know how fast things can change.

Fever

Last night Danny seemed to calm down alil....his fever did come down some, but it's still high for him. Once he woke up it shot up like a rocket so once again he was packed on ice, sigh. I just hate that, but it did seem to do some good. All that must have worked out his body as he is taking a nap already. Funny I couldn't get him to sleep for days and now he is sleeping alot...Happy Medium Danny Happy Medium, would be nice. This mornings preliminary reports on his cultures are showing elevated white blood counts and his CRP still climbing so it looks as if this is an infection brewing not just a I'm pissed off episode. They have changed his antibiotics from the Vanco to two other broad spectrum ones....as we know he has VRE and if this is the cause of the fever VRE doesn't work on Vanco. Welcome Diarrhea I'm sure if it, UGH!! They pulled out the Foley Catheter to ward off any other infection issues. Danny is pretty junky at the moment but I think it's do to the trache change the nurse and I did this morning. I was told that he is going to go down today attentively around 2 to have the GJ tube placed. At least he won't wretch with the oral meds we have to give him. We switched most back to IV but there are a few out there that we can't.
My heart is heavy.... I'm beyond stir crazy and I miss my family SO VERY MUCH. I feel awful that as I am sitting here as Dan is taking on the brunt of the new house building and moving. It's hard enough to do together and now he is flying solo. I do what I can, but it's not much. I worry he is, if not already burnt out. I'm on a mission once again to see if I can get Danny transferred back to Children's of Fox Valley. I will be closer to home, be able to help out more with moving, I can have people help me out watching Danny, I can start my MS medicine that is still sitting on the counter, and I can be closer to my family. I'm not too sure how lucky we will be with that but it's always worth another try. I think lately if I didn't have Bad luck I wouldn't have any luck at all.....when will this turn around for us!
10 years ago today my Luck was different.......I went on my first date with Dan. I saw a side of him the not too many people get to see and I was hooked ever since. It was such a good day, we had a great time spending the entire day and most of the night together. We've been together in the good times n bad even before we were married. He has stuck with me when most guys would have just RAN from all the chaos. He is a good Man ~ Thanks for taking me out for chili, my life changed that day.
I will post again later....with any news.

Vanco - 3rd post of day

It looks as if the day is going to end with the same trend as it started today. Danny's fever started to increase once again so they have started an antibiotic called Vancomyocin about 2 hours ago. We won't get the culture results, from this morning, back for another day so to be safe they wanted to start him on something. The increase of Prevacid seemed to have helped regulate his PH level in his tummy..it was 5 this afternoon so we are alot closer to 6 then yesterday. He has been sleeping alot this afternoon but his numbers didn't go down much even with the sleep, then they stayed put for awhile, and now he is slowly starting to increase again. Danny wasn't stable enough to get his GJ tube today, but tomorrow is another day. What a road this has been, 6 weeks today we were brought down here by ambulance. This has been the longest stretch of hospitalization Danny has ever had and I will be so GRATEFUL once we are on our way home. I can't wait to show lil man his new home ~ I think he is going to LOVE it!

Stablizing - 2nd post of day

It's 2:30pm and Danny is resting comfortably, FINALLY. His numbers are finally stabilizing and some are starting to drop, not like we would like them too, but at least they are not rising any more. Heart rate, temps, blood pressure, and breathing rate are all still high for Danny but he is "work in progress" right now. He was put back on the PCA pump for pain and I think that is having alot to do with his calmer demeanor. His bleeding seems to have subsided as bright red isn't coming out of the Foley catheter or g-tube extension, it's more brown which is an indicator that he has stopped bleeding. We started giving him more Prevacid as the PH level in his tummy was 2 instead of 6 so I am hoping that is helping his discomfort. We haven't seen any more seizures then the one this morning, I so happy for that. I haven't heard if any of the blood, urning or secretions test have come back yet, but as long as he continues to look better, ...I'm better as he sure was stressing n freaking me out this morning. I'm almost positive Danny isn't going to get his G-J tube today because his number are too high and not stable enough for another procedure today. I will post again later if I find out anything

Rough start

This morning has been VERY busy here in Danny's room. His fever continues to rise (even with ice packs under arm pits) so they are in the works of culturing everything. I'm hoping it's just cuz his body is in F you mode from all that it went through in surgery last night, not cuz he has an infection. In a few hours we should know what's up. Then do to the fever he had a seizure that needed Diastat. The nurses have had to give him more n more daludid in the last 24 hours so they brought back to PCA pump. With in the increase in pain meds and the Diastat my energizer bunny is still going. I can't believe it myself, but it goes to show you how aggravated his body is right now. I will update later this afternoon when I heard something.

Surgeries Completed

Danny is back to the room....or should I say my balloon is back. Boy do they really blow you up for the scopes. He is doing well right now, we had to give him some additional pain meds he just isnt' comfortable yet, we're having to suction him alot, and he has a Foley Catheter in as he is draining a significant amount of blood from that n his G tube. Tomorrow is another day :)
Urology ~ took the stent out and he said he got a wonderfully clear look into the kidney. There was no stone in his kidney but Dr D did find a pocket of goo floating around in there. So his thought was the 'spot' in the kidney may have been the pocket of goo or the kidney tissue may have calcium deposits in it. Well either way we are done manipulating his willy wonka for a long time now, phew
GI - did an endoscopy and colonoscopy. Again what a BIG balloon Danny was when he came back from the OR. The doctor already came in and stated he didn't see anything wrong with the upper or lower GI tract. The doctor did do a couple biopsies and we should have the results of them by next week. I think that is were most of the blood is coming from, right now. So the game plan in play is to have Danny get a GJ tube and start the feeding process with a formula that is easier to his system.

Back in Surgery

The last couple days have been crazy! Sorry for the lack of updates yesterday, but I was able to bust out of the hospital for the day to go to the new house and start the decorating process as everything is starting to come together. I left here around 9:30am and I got back at 10:30pm while Dan came down to hang out with lil man for some much needed Male bonding. When I got back I was exhausted and just wanted to crash. It was a long, stressful but productive day. I was totally overwhelmed when I entered the house, WOW. I had tears in my eyes thinking Danny came very close to not seeing HIS home. The reality of all that has happened to my lil man in the last couple months hit me like a brick. Then reality hit of how much stuff I had to do in such little time....I went into GO mode! Don't forget to stop by the house during the VHBA Parade of Homes to check out our home, by Mike VanHoof Custom Family Homes.
Danny is finally in surgery.....only 5.5 hours late, but "Git-R- Done". Right around 1 this afternoon of course lil man got VERY irritated and spiked a fever. DANNY!!!! So I gave him a cool wipe down, the nurse gave him some additional pain meds, and we hoped for the best. By the time the OR was ready for him his temp did come down alil but he was still high (rectally) so we pulled the rectal probe and he was good to go, shhhhhh. Last night and this morning he started to wretch again on only 5-10cc of meds in his tummy so they ran a PH level of his tummy contents and IF the prevacid was working his level should have been about 6, Danny's was 2 so that isn't good at all. Which I can now chalk up another reason for his discomfort, sigh. I can only hope after GI does their thing we get some much needed answers gut wise for Danny. First off tonight Urology is going to pull the stent and blast the stone on the right side. Finally taking care of the kidney issues so we don't have to worry about that. Then GI will come in and they are planning on doing on Endoscopy (scope going from mouth down into tummy) and a Colonoscopy (scope going from butt through intestines) with doing some biopsies in hopes to find answers to Danny's wretching n diarrhea issues. I believe tomorrow they are planning on taking him down to IR and having them put in a G-J feeding tube before we start to attempt the feeding again. Surgery should take about 2.5-3 hours so I should see him back in the room in about an hour. Danny was just miserable today so I was glad they were able to still get him into OR tonight as I'm not sure what we were going to do with him over night he was so uncomfortable. I will post once he gets back to the room and settled in!

Doing OK

Yesterday we had ALOT of smiles, chit chat, and longer periods of NO pain meds. Woohoo! The ONLY thing that is different this time around (for the stent) is that we have stopped feeding Danny's tummy. So my Mommy gut is wondering if the pain he has been in the last 2 weeks really wasn't from the stent but from feeding him? Now that nothing is in his tummy he is in a better mood, less pain meds, and his diarrhea is slowing down once again. HMMMM??Here she is Danny's primary day nurse....Lisa. Danny loves her! She has been so good to my lil man and to me (lol), I truly don't think I would have been able to make it this long here without her...her nursing, her caring, her attitude, and her friendship. THANKS LISA ~ WE LOVE YOU!Seeing Danny was in such a good mood and seeing Dan brought done the hair clippers.......SPA DAY! Danny got a hair cut, nails trimmed, bath, bedding change and trache cares all before noon, phew thanks again Lisa for all your help. I am going to go for a full Mommy SPA day once we bust out of here.....I PROMISE :) LOLHere's "The D Man" after the hair cut....yes Nanny the curls are GONE!Mommy hanging out with lil man in his bed watching "Cars". We like that movie!!! Where's the popcorn?

Danny is still up to his tricks don't get me wrong....spiking temps & funny rashes showing up here in there plus his blood pressures have been high since last night. Lil man is the Energizer Bunny as he was up ALL day yesterday (yeah even with the Spa treatment), hung out with night nurse Erin All night, and is still going today. It's almost 11:30 and still no signs of sleep. I hope he falls asleep soon as I know his lil body needs some rest. I sweet talked the the day crew today into ordering out for lunch. Well not much sweet talking was needed....I mentioned and everyone agreed, LOL. But we couldn't decided on just one place so Best of Both worlds I have Chinese and Custard coming heehee. What a mix but I'm excited!! It should be a low key day, but with Danny one NEVER knows. We have good nursing today too (Paul got stuck with us) so I'm confident that we can handle whatever comes our way, Bring it on lil man, Bring it on!!