Monday, August 31, 2009
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"
Thursday, August 27, 2009
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!
Monday, August 24, 2009
Sunday, August 23, 2009
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!
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.
Saturday, August 22, 2009
Friday, August 21, 2009
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!
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.
Wednesday, August 19, 2009
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.
Monday, August 17, 2009
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!!!!
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.
Saturday, August 15, 2009
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.
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
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
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
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.
Friday, August 14, 2009
Thursday, August 13, 2009
Wednesday, August 12, 2009
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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.
Tuesday, August 11, 2009
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.
Monday, August 10, 2009
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.
Sunday, August 9, 2009
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!
Saturday, August 8, 2009
Friday, August 7, 2009
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.
Thursday, August 6, 2009
Wednesday, August 5, 2009
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.
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!
Sunday, August 2, 2009
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!!