Tuesday, June 30, 2009

Useless Agony

Our next appointment is Thursday. We check in at two thirty for an overnight stay for a cytoxin infusion. I feel the weight of the world on my shoulders right now. A decision that should not be one for whatever reason is. If your child had a disease that seemed to be getting worse or not responding the way you expected, at what end would you stop, or where would you begin? There is an expert, Dr. Lauren Pachman, located in Chicago, IL. She has pretty much devoted her career to children with dermatomyositis. A no brainer right? Get him there no matter what? I had no had the chance being in the hospital to contact her office or email her. Yesterday I finally had a breath to take so I did. I started with an email. I explained what has been going on, when he was diagnosed, ect,. The moment I hit send I knew it was not enough. I know those of you who know me, know I do not like to talk on the phone much. I just don't. Never have, unless it's my sister. But I will talk. I am capable. I suddenly lost control of my body, my heart, my brain, picked up the phone and dialed. I found myself on the phone with Dr. Pachman's office. A woman with a midwest southernish accent answered and was fun to talk to. She was the intake nurse and started taking my information. After a small delay of computer glitches she began the questions. When we got to "Now what is going on with Gary?", I told her. Not swallowing, trouble walking, ect,. She gasped, "Oh good Lord child, donch chew make me cry now, Oh Good Lord. You need to talk ta someone, oh Good Lord." And she went off the line. I found it amusing because here in the northwest we don't encounter such passionate accents much. She came back on the line and said, "Are you ready for this? Are you ready? Dr. Pachman wants to speak with you. Are you sure you are ready?". I said "yes, I am ready." That nurse was delightful to talk too. The good doctor came on and right off the bat said to me, "I could just cry for him". She knew who we were, thank you Kalee Carpenter. She proceeded to tell me that she could not treat Gary over the phone. We went into discussions about billing and insurance. She explained that she would not be there for the next ten days because she would be busy writing a grant. She said that would give me enough time to get approval for a second opinion or referral for the insurance. She wants us there on a Monday to check into Chicago Memorial and receive treatment there. I thanked her for her time and told her I would get to work and try and make it happen. Talk about being overwhelmed.

My next call was to Children's in Seattle. I in no way want to compromise, alter, deviate, or risk Gary's treatment. I do not want anyone at Children's Seattle think that I need another opinion. I need them to know I think they are doing everything they can. With that being said, then why am I considering Chicago. The nurse from the rheumatology clinic was great. Her name is Ruth and I like her a lot. I asked to have a discussion in confidence. She said that no one by any means would be mad at me or put a mark on me because I am seeking treatment elsewhere. Really you might be thinking, what do you care what they think? Because they are responsible for care and his treatment. Ruth told me plenty of patients at Children's seek second opinions. I am not the first. Nor will I be the first to take my child to Dr. Pachman. She did have a warning though. Her warning was the "too many cooks in kitchen". Once we go to Chicago and receive treatment from there, that is where our treatment will be given. I said, "so are you saying once I go to Chicago, I have to go there from then on." She said that we will be able to receive treatment at Seattle, but it will put me very much in the middle of keeping communication open with Dr. Pachman. She said that I would have to be a very active advocate for Gary and his treatment. Her exact terms was "bird dogging". Here is where I scratch my head and anxiety sets in a bit. What if we are there and we can't get a hold of Dr. Pachman? I know Seattle Childrens doctors won't be like well sorry, tough luck, but still. I would like to say I have to also consider financially this isn't practical, but this is my sons life. Nothing is worth, or should I say everything is worth giving up for him.

Gary had a great day today. He is in great spirits. Yesterday was a bit rough but today was good. He loves it when his Nannies are here and with him. His feedings have been going well. Swallowing is very much a life threatening activity still. He got a hold a small bit of potato at dinner the other night and its that purple blue color that his face turns that makes me sick. I tried a small scrambled egg. No go. No way. We tried giving him juice because he was soooo thirsty, shot straight out his nose. He is very grumpy when he wakes up because the saliva goes into his sinuses. The nurse heard him coughing still pretty consistently while I was talking to her about Dr. P. She said I need to take him to the pediatrician. So last night we ran him up for another check-in. His pediatrician said his lungs are still very much clear and continuing on antibiotics would not be the best decision. We talked about the thrush like rash in his mouth. He also said treating and weighing the possible side effects of yet another drug point towards favoring not treating it. I spoke with my pediatrician about going to Chicago. He asked me to give him a day and he would do his own research and let me know his opinion. He also had another opinion he thought it was important we knew. He warned us that this is just his opinion and this disease could take whatever turn it wanted to, however, he feels it will get much worse before it gets better. We thanked him for his honesty. Both Robert and I value what he has to say. He called me back today and he thinks we should go to Chicago. He said we are receiving EXCELLENT care in Seattle but having an expert on board would be good. He advised me in how I should approach and present it. I need to ask if Dr. Pachman would consider becoming a consulting physician, and work with the doctors here in Seattle. I am nervous to ask but I will.

Head on table, breathe out, breathe in, don't spin. What to do. I know that it is an obvious to some of you. We are still working on insurance details, where we would stay, ect,. My family thinks we should go. I did read they have the Ronald McDonald House two blocks from the hospital.

I have created this poll. Yes, I would love to here what you would do. Know that your opinion is valued, but this of course is ultimately my decision. I plan on talking with the doctors on Thursday to feel them out and see what they think. Thanks for your time participating in my silly poll! Here is the link: www.misterpoll.com/polls/440438.

Saturday, June 27, 2009

Saturday

Today went ok. His color still isn't my favorite. I still think he sorta looks like the kid from Pet Cemetary, after he came back. I suppose that is not funny but that is my impression. I want to continue to thank everyone for all the support. Thank you Zena for sending dinner down to the hospital and the toys. You really brightened Gary's afternoon. There are a lot of thank you's to throw out there, they really are endless. You know who you are! Thank you thank you thank you.

Gary did alright today. He is very stiff and not moving around much at all. The only improvement I can report is being able to step up little ledges. That is it. That's it. His swallowing is not improving whatsoever yet. We have had a ng tube for almost two weeks now. I know he is not improving because we didn't noticed that he reaching for something at dinner and I looked over to see him gagging on a little potato salad. Turning colors, all the fun stuff. He woke up from his nap extremely agitated. He seemed to be having issues with saliva coming out his nose which was making him uncomfortable. He also has been having hive like rashes pop in that he itches while his skin turns purple at the same time. Each day that goes by seems like an eternity to me. He seems really uncomfortable a lot. More than he is just doing fine. The doctors said his levels are heading in the right direction. That's great! Now when is his body going to catch his levels. He seems so fragile. When we pick him up, its like picking up a boiled chicken. I feel like he is going to break into mush and crumble into intensive care or something. My little prince sleeps tonight. He sleeps in the pink cloud of benadryl.

Friday, June 26, 2009

Home, No easy journey but we are here!

We are home again. Yeah. Not an easy day. We were due for discharge this morning. Gary had other plans. After being on IVIG all night and 3 doses of steroids, ect., he decided to get sick. He woke up at 10:30 was up for twenty minutes, really fussy, wanted to leave. So I bathed him, then did as he requested and took him to the play room. He said owie owie owie the whole way there while riding in the stroller. Once in the playroom, he got out, looked up at me and motion to hold him as he said owie owie. Miserable. I picked him up, he layed his head on my shoulder and back to our room we went. He was almost asleep again by the time we got back there. He was pale. He looked terrible. I can handle my child being sick. I can handle my child having a disease and getting poked with needles over and over and over again. I cannot handle having my child looking the color of a corpse or close to it. I had the second of mini melt downs and whoever dared enter our room was not to leave as they were trapped in my words of worry, regret, as if I was staging of war with each person. Doctors and Specialists are kind and will listen. But I can only imagine that they must feel like a fly that flew into a spider web and got stuck. Luckily, I only spin my prey. I am a catch and release sort of girl. Each new nurse got to here how I don't think it is right he is pale and lacking energy all the sudden. They were warned not to send me another intern. (All the interns switched rotations, so I was not happy with that. I had developed a rep-or with the old ones and didn't need change. I do have to remind myself it is a teaching hospital. I respect that. Plus our new intern really looked like my baby brother. I couldn't help but put up with his lack of experience and pulled-from-the-air explanations. I spared him my wrath. Besides, I keep it inside). So after Gary's color continued with its white grayish appearance, I inform the doctors I was going nowhere. I tried the best I could to remind them that I longed for my own bed, and clean clothes. I longed to see my children and be with my family. I told them this to help them understand that I wasn't refusing to go home because I found pleasure in it or wanted to be a thorn in there side. I had genuine concern for his well-being. We hung out the rest of the day. Gary slept and slept. He finally woke up at three. He even slept through the doctors examining him. He seemed better but his color was nowhere near what I am use to. It is hard talking yourself in and out of things. At that point it was getting home and getting him in his own bed was in his best interest and mine. The doctors suggested maybe his ng tube was in to far or in the wrong spot, causing tummy pain. I suggested maybe it was to much fiber and laxative causing stomach cramps. They ordered a chest x ray and tummy x ray. It all came back fine. I have been thinking a lot about why he was knocked so far on his back yesterday. Maybe it has something to do with the methotrexate shot. I have been talking with Kya's mom, Kaylee, she mention Kya not feeling very good after those. Gary seemed to be doing that as well. It is just the whole concept I cannot seem to grasp. You come to the hospital to get better, not leave worse off. I am working on getting in contact with a specialist in this disease over in Chicago. I am very motivated especially after checking out. They discontinued Gary on his calcium, but the new intern could not tell me why. There were a few other adjustments that no one discussed with me, so that was a bit.......irritating. But I try to be patient. At this point, patience may not be an action I need to be putting out. It took awhile to get us discharged. My little sister was kind enough to drive all the way down to help me make a decision on whether to take him home and help us out the door. Childrens isn't always terribly helpful with that. Everything is based mostly off of volunteers. So if you ever need a place to donate your time, Childrens is a good start.

Thursday, June 25, 2009

What is today?


My days are not days in the hospital. It is just one continuous blob of time. Thursday. So the Doctor came in last night and talked about possibly going home today after a methotrexate shot. Things to do different. I think we should hang out for a least a couple hours after our shot because Gary almost vomited after his last shot last week. I am going to consider that we went home last week on Thursday and ended back in before the weekend was up. So maybe we should stay Friday that way we can avoid any admitting through the ER this weekend. We have been through the ER or ED they call it here at Childrens, a lot. So am I being negative? No, I am being strategic. Gary is good. We are out of isolation and are able to take walks. He is the boss of everyone. We do what Gary says. It is just in the best interests of everybody at this point. During dinner last night, he really really wanted to eat. We had some emotions about that. It upset us both. I gave him some food thinking he would say ewww like he always does. I had to stop him as it passed his lips. Big tears. I felt terrible. I am waiting for rounds this morning to here the plan. The doctor said she would push for us to go home today. Don't worry as much as I would LOVE LOVE LOVE to come home, I also shared my strategy with her. I try my best not to use the internet as far as believing everything it says. I did read that PCP Pneumonia can cause bad breathe. This is a pneumonia that patients get who have lower immunity, commonly HIV patients. But Gary does have a suppressed immunity so it is possible. With the wet cough, bad breathe, high white blood count he had on Sunday, it is a good thing we are here. Thank you to everyone for you support and love. Love you LF!

Tuesday, June 23, 2009

Isolation

So I am on break. Get some ten minute me time. Gary is doing good this afternoon. I was a little concerned that he was looking a little pale when they were doing his feeds. I had them give them to him over an hours time instead of a half hour. His lips were a big issue as well as his breath when we first came in on Sunday. Both are clearing nicely. As I mentioned before they are holding off on the cytoxin. They are going to keep running antibiotics for 5 more days. His weakness in his legs is improving and so is his rash which is great given they have not pulsed him with steroids since last week. We have just continued his maintenance steroid. I am amazed how his lips and breath cleared up. It also makes me realize how important it is not to ignore something like this that may seem like no big deal. Right now, right here in this moment in time, everything is a big deal for Gary.

Isolation is hard but I can't think of a million different other things that are harder. I am just feeling blessed that we are being treated and being treated cautiously. Gary and I spent the afternoon doing our leg exercises. He did well. I was able to make him belly laugh which puts me in heaven. I get frustrated with the throwing of toys and the pinches and grabs. But the "Orry Momm, orry" makes it worth it. The doctors are here in the morning to check on him during rounds. O speaking of rounds. I was lacking energy this morning to share this but it a good one. They all keep teasing me. They were discussing in rounds this morning how Gary is not putting out enough urine. She called the "i's" and "o's" (in's and out's). They were talking talking talking and she asked if I had any questions. I asked what is wrong with is eyes and nOse??????? They all uproariously laughed and explained it wasn't his eyes and nose, it was what he takes in verses what he puts out. GIVE ME A BREAK LOL LOL . We all got a good laugh. I was woken up by a lab person this morning with my head on the bed rail and my feet on the rocking chair in the middle of a dream about a flying spaceship in my sisters backyard. In the dream I was cursing at my sister and brother-in-law because they had remote control spaceships trying to convince me it was all real. The lab guy was greeted with a jump and jolt from me. There is nothing more unpleasant then getting woken by a strange man while your dreaming. I told the doctors that I deserve the opportunity to come to there house in the am to see how they wake up. Drool and all! I have to get back to my cell now. As always love to all!

Rounds

We are continuing antibiotics, having repeat chest xrays. Gary is doing pretty good. They are sending in physical therapy for some work. They are concerned about urine output and low sodium levels. They said it might have something to do with the antibiotic. Keep close watch. I am very grumpy and tired today so I will write more later. Levels white cell count falling! 18,000 I think I heard them say. We are not running any cytoxin though still. Holding off on that but will still do the methotrexate. Sorry this is short. Running out of steam. LOL

Monday, June 22, 2009

Update

Sorry I haven't been able to update! Here it is! Things are ok. Could be better. We were due to come in this morning for a cytoxin infusion. Unfortunately, we came in last night because Gary had declined from Friday. Saturday morning I ran him to his regular pediatrician to have them check on this cough we have had for 2 weeks. He has a foul odor to his breath and SEVERE chapped lips. The pediatrician was a waste of time. She was not comfortable treating him. Sunday morning he had a full night sleep and was slow to walk. I didn't like it so I called. They said to come on down. We spent the day in the ER. They did chest xrays and blood work. I was told it was a very good thing I brought him in because his white blood count was HIGH 32,000 which indicates infection somewhere. We are in isolation and he is being treated with a broad spectrum antibiotic. He was not feeling good again this morning but is seems to be perking up through the day. Especially now that his Nannie Mimi is here. Nannie Alyssa sent us dinner! Yeah. Hospital cafeteria food, blah. Anyway, they aren't going to run the cytoxin until his white blood count comes back up. Hopefully Wednesday.

Another Issue

So the IV placement is getting tiresome. It has taken at least 4 to 5 times every time and then his veins blow. I spoke to the resident doctor about putting in a central or pik line. Everyone agreed it would be a good idea. It is a surgical procedure where they thread a catheter into a vein that goes to a big. (Something along those lines) Gary's doctor that matters said no to it though. She said she the risk of infection is not worth it. Now that we already have an unknown infection it would not be something she would like to see be done. Not sure what to think. I do respect her opinion though.

Gary's feeding tube is going fine. The xray showed that it had come out a little bit so we had to advance it a bit. He is no where near being cleared to eat. Love to all. I will update more later.

Thursday, June 18, 2009

We Are Home for the Weekend

Gary and I are home. We go back Monday for another inpatient stay. He is doing fine. We are getting use to our new way of eating. The ride home was a bit rough. Gary had some nausea. I thought for a minute he was going to vomit, stuck in traffic right in front of Husky Stadium. Then I remember they now has 2 chemo drugs in his system so the queasiness will be more likely. They gave him his methotrexate shot just before we left so if makes sense. Note to Self: Bring along throw up container. We do our "bolus" feeds every three hours four times a day, and then all night. All of his medication goes through his G-tube. I just hope it never comes out (G-tube). Fortunately I am having a hard time getting him to rest. That has to be a good thing. The Bradfords are still smiling! Love to All!




Cross everything you have....

I am hopeful we get to go home today! Pllllleeeeaaasssee. :) Gary seems to have some strength returning. Turning in bed easier, stepping up little steps that he could not before. He looks great so we are feeling very encouraged. I think if we are careful and keep on top of his treatment this will finally turn around and go good. He will now be on blood pressure medicine.

Hospital is having a fire drill or fire alarm. I will update when I get home?

Wednesday, June 17, 2009

Update

Another busy day. They told us today that they are going to try and get us home tomorrow afternoon. We will be home for the weekend and then they will bring us back Monday for another inpatient stay. The plans are tentative until everything is figured out. Gary seems stronger today. He has seen speech, and occupational therapists. They have been showing me how to stretch him. Gary's spirits are sky high right now because his brother and sister came for a visit tonight. I had the Home Care Unit come and teach me how to use the pump. It took about an hour. I think I got all that. Gary seems to have a gag cough. I am assuming it is because his muscles are not functioning properly. Hopefully it will go away soon!

Tomorrow

Tomorrow we might get to come home! Yeah! My sister did not like my last blog so I honored her and took it down. Hopefully not to many people read it. Let's just say Gary cannot have solid food. NONE. None whatsoever. They were talking about taking the IV out but we have meds to run tomorrow so we can't. I practiced placing his G tube this morning. It was quite a busy morning. We both did well. I did better than he did. But I was able to get the tube down just fine. I am growing tiresome of the hospital. It has been very busy this week. I am not use to the crowds because we always have been here on the weekend.

Gary is showing signs of his strength improving here and there. His speech has deteriorated but we can still make out what he is saying. This afternoon I will be getting more training with the G-tube and working the pump. They are setting up phyiscal therapy and speech therapy in Kent so that will be nice. Another swallow study is set for 3 weeks from now. Gary did fall a couple times. We are trying to keep him up and moving. We need him to know that he can still walk and do things although it is difficult. They put him on a few new medications. Paquienal given to malaria patients. It was the one medicine one of the attending thought he was already on. Hmmmmm. He is getting cytoxin and methotrexate. I am wore out. But I also am not the one having needles poked in my arm and having tubes shoved down my nose and in to my stomach. The swelling in Gary's legs look so GOOD. I can see his little legs finally. I think they look too small but time will tell.

Monday, June 15, 2009

What a day...

It has been a long day. The tube is in. It wasn't as bad as I thought but still not fun. We just got done replacing a blown IV. They found a vein on the inside of his wrist. He had a hard time getting use to the feeding tube. I asked for them to give him tylenol to help with take the edge off. The nurse told me that older children tell them it feels very odd and itchy on the back of the throat. The doctors said we need to give his muscles a rest right now until we can get things turned around. We will be going home with it. That means this weak I will be learning how to place it and feed him through ect,. And I thought having to give him a shot was bad. The best part is that the doctors wrote permission for us to have the occasional pleasure foods. Gary had strawberry ice cream. It took him awhile to get him to take eat it but he sure loved it. The IV team made a comment on how good he is about not being combative during IV placement. I told them it is because he does not have the strength to fight. They said we will get to go home by Friday? We are going to see occupational therapy probably tomorrow. He will continue to get his regular doses of steroids and be monitered with everything else. I am shooting for Wednesday. Robert went home tonight and the kids were so thrilled to see him! *tears* I miss them too! No fair. Elexis is feeling better! PRAISE Him.

Preparing

They are placing a g-tube thru Gary's nose in about an hour. I am finding a place in my mind that I need to be. I am preparing. The placing of it the tube is horrid. I know because in May they did a mucus sample test. That was worse than the IV's. I am currently a little bit nauseated and have anxiety. The swallow test showed that he is having difficulty getting the fluid to go down. It takes 4 or 5 throat contractions verses the one it is suppose to take. Solid food goes down and does the same as liquid. His speech is continues to change. Bye Bye is mye mye. Uncle Mill and Nannie Lyssa came! I am so happy they are here. They are his second set of parents. Gary is tired of his Mom and Dad. Especially since we won't feed him. I know for a fact that the swallowing is not right because after three days of not eating he did not even want the apple sauce strawberry milk or cracker. Granted it was coated in barium but after three days of not eating. Once doctor said he was not sure when we will get to go home. Robert and I wonder if the hospital has the same deal has hotels.com. After so many nights the next night is complimentary?? Most likely not. I will update later. I remain hopeful. I feel disappointed, sad, amoung other emotions. A c a r m e l a p p l e t i n i will solve nothing. :( Nor will profanity.

Alright enough of this mushiness. Time for MAMA TIGER. Game on.

Monday is here, the sun is almost up.

I have risen and am shining.............waiting. I have all my Mom gear on and putting on my war paint (pink eye shadow, dark eyeliner, you know pink says I am nice approachable, dark eye liner says don't even mess with me). I am ready to do a bounty hunt on some swallowing test doctors. I have already been out to the nurses station to ask which door I need to be knocking on to get this swallow study done. Rachel, our nurse, is sweeter than sugar! She kindly warned me that it may be a bit. Everyone will need to coordinate. Yesterday they started the cytoxin at about 5. For an hour he screamed and cryed. Screamed E A T and O w i e. He wanted me near him. He wanted me away. After the second hour of this it became tiring. They ran a different steroid first. The day nurse explained it is somewhere in between a benadryl and a steroid sorta. Then they ran a bladder protector. Then they ran a tummy protector. (What for, he has not eaten! LOL) . Then they ran a cytoxin. Then a diaretic. He is currently getting nourishment through is IV. It looks like a big bag of chicken soup and a bottle of milk. Its really vitamins and fat. He has quit the set up. He has five different pumps and numerous IV hook-ups. We went and begged for benadryl because he wasn't tolerating what his body was receiving. It was making him very uncomfortable. VERY uncomfortable. It only takes minutes when they push benadryl intravenously before he slowed down, saying, "mommie, mommie" and then more in slow motion.....then night night. Poor guy. This morning at three they ran another pulse of steroid. They have been testing his urine all night for blood. This is from the medicine. He has been fine, no blood. I am feeling encouraged today. I have a feeling he is not going to need a feeding tube. That is just my feeling though. Then if they don't give him one (on the other hand) I will be freaked out when he's or drinks. *Shruggs* Can't win.

They gave him more benadryl at three this morning when they ran the steroid so he was still sleepy so I decided to get ready for the day.

Several loved ones have called and inquired about visits. I feel so loved and embraced. It is so beautiful. We have had to politely and kindly as possible decline any visits right now. I fear for several things. I am concerned about immunity levels. Someone comes and says Hi then goes home and gets sick unknowly exposing Gary. With Gary being uncomfortable at times and navagating his emotions and reactions, I fear the stress of focusing my attention on someone who made a drive all the way to Seattle will make me feel like I need to take my focus off Gary and put it else where. Which in theory sounds good, a distraction, but stressful.

After today we will see where we stand.

Continued thank you's going out to everyone.

Thank you Mary, Heather, Pat, Kalee and everyone for your personal encouragement and beautiful words. I do not dwell on them too much because I will begin to chop onions. (you know, get teary eyed). Kalee, I think we should make a t-shirt that says Don't Mess With Mama Tiger. We could put a picture of a mean looking tiger with a cute little cub behind her. Sound good?

Sunday, June 14, 2009

*Update*

So we had a long talk with the doctors this morning. The new plan is to start a new drug called cytoxen. It will be replacing the methotrexate. They will start it this afternoon. The side effects are a bit more crazier than the methotrexate. They need to give him a bladder protector and tons of IV fluids before they run. One side effect can be bladder cancer later on in life and infertility. I asked them not to say that but they said they have to say it. I thought to myself I realize that but I meant it in the way of I don't want to hear that. The one thing we have going for us is he is only 2. The "little guys" aren't even being made right now so it increases the protection. Gary has had nothing by mouth for about 48 hours. Last night was kind of hard because he cryed for about an hour until they gave him more benadryl in his IV. It worked really well. The muscles in his laryx are also showing signs of weakness. I know that because he is suddenly using different words for things. Bottle use to be BA BA. Last night it was MA MA. Bill he was saying clearly. Bill is now MILL. Uncle Bill joked that he would call him "Flary" then. Tomorrow I will give an update when I can after the swallow study. That will determine if we are going to be sporting a feeding tube. The dietician came in while we were "on break" and he has orders in for more glucose intravenously. I have not seen what else is going to be put in. I did read some advice that talked about Gary's nutrition. I so appreciate advice like that but right now it is just to risky to go and say well I want him to eat a fishes eyeball. I think that will fix him. No spank you. Maybe if it was a little less serious. I know increasing his immune system seems like a healthy thing to do. But in a immune system that is destroying a body, I see no reason to give it a boost of any kind. Definetly worth looking into more but I am not going to implement something like that when swallowing to the point of possible aspiration is there, not good. Don't want him aspirate a fishes eyeball. Ewwwy.



Elexis is at home with Grandma and Grandpa sick. She is running a fever and has a cough and my heart is torn. I want to be there with her while she is sick. But I have to keep it together. Robert will be here with me until Monday. He has called in so I am glad. I am a bit more relaxed when my husband is here.

We can't stress enough how grateful we are for all the well wishes and the offers to visit. I also can't thank everyone enough for all the prayers.

PRAYER REQUEST:

Jessica, Age 12 Brain tumor, family is from Alaska and has been in here since January. I asked her Mom about her prognosis and she said it was in God's Hands.

Justin, Age 11 He has a mitochondria disease. His outcome is said to be fatal. But they are fighting. Prayer for his line infection to clear up.

Aden, Age 3 Double blood infection. He is a small person who is amazing and full of energy. He has been keep our unit entertained with his naked antics. Gary tried to join him but his legs wouldn't allow it.

Please include Elexis in your prayers. I just want to be there for her too. Prayer for my family. I fear this whole situation is wearing on them. There is nothing I can do about that but I just don't need them stressed out or worried or burdened by all this.

I find myself walking the halls of this hospital feeling a bit more boulder and less shy. Justins Mom said that is the one thing she looks for is relationship with the other Moms. She enjoys that being a single mom and having someone to talk too.

Saturday, June 13, 2009

Just forward my mail to Childrens

We got to the ER this morning at 9am. They did a chest xray and a swallow test. Gary did not like the swallow test. It was different from the last time. They strapped him down on a board and had him drink. You can cleary see the liquid going up into his nasal cavity. The silly radiologist doctors tried to tell me it was not related to the disease. I looked at them with one eyebrow raised and started firing questions. They tried to swim in the Lake of Confidence. They are lucky I am a God fearing patient woman LOL! Although the poor volunteer who escorted us got an earful when we headed back. Gary is having nothing by mouth. They are fearing he may aspirate on food or drink. A protection of his airway as been ordered which they implement with nothing by mouth. There is talk of putting a feeding tube in until Monday when the other departments open up. I am going to fight that if I can but if they have to they have to. He is begging for water which I can't give him. His overall weakness is increasing. It took them 4 times to get an IV in. I think the IV team is the only ones who should do it. His arms are so swollen. They said the trouble is finding a vain in all the subcutaneous fat. I can relate. They are going to pulse him again. Run yet another round of steroids to see if they can get his swallowing disfunction to improve. I don't agree. We just had one on THURSDAY. Bottom line they are going to have to come up with a new game plan here. The steroids helped his rash but his levels are still very much elevated. I am not going stand around and watch him get worse while they run the same ol thing. The last I heard is they are going to give him nutrition thru his IV but he will still be "hungry". We are starting to swap out his mouth with water at least. I have no idea when we will get to go home at this point. Now that this disease has made its way to his arms and now his swallowing, I can't help to think of whats next. What is next lungs and heart? Swords are drawn, commence with the battle. I would love to say bring it but I am not the one laying down in that bed not able to eat or drink or sit myself up. So don't bring it. Spare him.

Friday, June 12, 2009

*Update*

Gary has not been wanting to eat as much today I have noticed. He is getting pickier. Yes, two year olds are picky. Two year old on presidone, should not so much. So I got him to take some bites of lasgana. He choked a little a few times and acted like he had a sore throat. Here is the fun one. I gave him a sip of my orange soda and noticed it came right out of his nose. I wiped it away and tried again. An orange river flowed out his right nostril. I called Childrens and had the rheumatology doctor paged to call me. I asked if I should be worried about it and they said yes. Well not to worry but he needs to be seen. I said we live an hour away and a half away. She said to stop giving him food and liquids. She told me that she would meet me in the ER. Praise the Lord at 9AM!!! I will still be getting up at an ungodly hour to get us packed again and get the kids dropped off to my parents.

I will update tomorrow when I can. Thank you for your prayers. I am thinking it is a weak muscle?

I am smart

I just came up with a great idea for Gary's next infusion. I am going to make a video with music and pictures of the family for him to watch. He will love that. I can slip some Finding Nemo clips in it. I was thinking of going around to each family member and having them talk to Gary on film. I think it will be a pretty good distraction. It has been said so let it commence. Right, after the laundry, dishes, baths, ect,. Good news, we got our first hospital bill. It is a keeper! I won't throw numbers cough cough 4 g's cough. I am not worried at all. It is what it is.

Gary is having a great day. Stiff as always but he is sleeping in my bed right now and its only seven. It is a quiet night at our house. I wasn't feeling good today so I am happy to just be right now.

A special special thank you to one of my council members who is not a biological member of the family for the very sweet phone call to check on us yesterday. Got your message today Mary. ;)

Home sweet home

I love being home. Yesterday went just fine. No surprise stresses. Gary did great with his IV. He stills crys but is crying less. We arrived at eight am. Traffic was ok. I was a little worried but we gave ourselves plenty of time. As we headed out just after dawn, Gary spotted CJ's bakery and pointed his chubby little finger at it before we even drove by. What a perfect day for a cake donut. I don't think he ended eating very much of it but its all about the experience. Speaking of donuts, Gary weighed in at 38.5 pounds. He has gained six pounds since May 9th. He still feels much heavier than that. Just another effect of steroids. Please Lord I never want to have to take steroids myself. Hairy foreheads and weight gain. That is just not a good combo. Only Gary sports it well though. Only my beautiful blonde two year old could pull that off. video
Here he is rocken out to a playlist Mommie created especially for him on her ipod!
During the infusion I noticed that his forearms swelled quit a bit. They were so tight. The nurse said we would keep an eye on but the fingers were getting good circulation. I then remembered when I had the kids my feet and legs would swell like that. The IV fluid and drugs have to go somewhere. Gary's blood pressure is 144/79. That is his normal "steroid" pressure. He got very restless after lunch. The nurse brought in a board to put at the bottom of his IV pole. It looks like a giant lily pad. It is a great concept but as soon as I went to have him sit down on it he would only last seconds. Sure enough after two minutes his head and back began to slouch. Then his head rested against the pole. It looked as if someone was piling wet towels on top of him. You could tell the muscles in his neck and back are just not working the way they should. His swollen fingers started to do all the work to hang on. He looked terribly uncomfortable so I took him off and just carried him. I don't think the nurse quit understood but just went with it. They did not take labs this week. I suppose that is because they just took them on Friday. They also gave him his methotrexate. I think that is our 5 maybe 6 dose. The only side effect Gary has had from that is he gets sleepy. The doctors said though after his six dose we will see the methotrexate work. I sure hope so. His rash is gone, only once in awhile we flare. His weakness is still at a ten though. With all the medicines yesterday in his IV, there is no diaper who can hold up to the challenge. I changed him a lot yesterday. But at about four oclock he fell asleep on my lap as they were finishing up. Suddenly, my lap was warm, then really wet. He soaked me! Don't worry, it started to dry on the way out to the car. Eeewwwy I know. I have a new slogan, "Finding Nemo, Don't leave home without it."

A got a wonderful gift from my Uncle Jon! It is a single cup coffee maker. So perfect. I am only a one cupper usually so my Uncle definetly blessed me. Wooo whooo! Thank you Uncle Jon!

Wednesday, June 10, 2009

Tomorrow is Infusion Day

The dreaded day. We have to get up fairly early tomorrow. Tomorrow Gary gets another dose of steroids and IVIG. I am trying to get everything organized to make the morning go smoother. Gary has been doing....I would like to say fine or good but that just doesn't really fit the picture. It will someday. But we are just taking it day by day. He wants to play outside so badly with the other kids it kills me. He yelled for me to take him outside so I did. Then he proceeded to stand there on his swollen, wobbly legs yelling at them. Just yelling how much he would like to come play with them but the ten steps is just more than his body can handle. I try very hard to treat him like there is nothing wrong. That doesn't seem to work right now though. We left him a bit to long and the temptation became to much for him and he took a step onto the grass only to immediately find his ankle, knee, and leg gave out in a domino effect, causing him to fall. Gary is very difficult to lift and move because he is like dead weight. He can't help at all and he just make this noise every time I pick him up. It's like someone is pinching him or something. Tomorrow will be our first solo trip to Children's. I am sure we will do just fine. Every time I have been escourted by a family member. The two of us will do just great I am sure. I have our suitcases packed just in case but that is only precautionary. I am still stuck on his hairy forehead. I can't wait for halloween. He is so gonna be a werewolf. He is getting his Owwwee whoooooo down.

I am really enjoying getting in contact with fellow JDM parents. Kya's mom is my newest wise council member. She doesn't know it yet but she will soon ;). I would like the other members of my wise council to welcome her. You know who you are!

For tomorrow I have loaded my ipod up with all his favorite songs and some head phones that go on the outside of his ears. I will do an update tomorrow when we get home. FROM HOME it will be.

Tuesday, June 9, 2009

Better

Gary seems to be doing really good! He is in good spirits and his skin looks great. I noticed this morning that his tummy seems to be going down. It is less bloated. The muscle weakness is of course still there but like I have said in previous enteries I am so excited to start him on physical therapy. I can't wait for the doctors to give us the go ahead. I am going to check to see if they have massage therapy for toddlers the doctors could recommend. I don't even know if that is possible but it could provide some pain relief. Then again, he doesn't like anyone to touch him. Last night I was teaching Gary to howl like a wolf. He has a hairy forehead right now from the steroids. Steroids cause usual hair growth. He is my little werewolf :).

Monday, June 8, 2009

Fishing

We went fishing yesterday. Gary was thrilled. All morning he kept saying "mangbuy" which means mom bye, I want to go somewhere. He was thrilled to be in the car with his whole family. Making faces, singing and rocken out to the music. Very cute. At the lake we fished off the boat launch. A circus act in itself, fishing with 3 kids and a mom who just can't seem to stop casting into nearby tree's or even hooking her own son's arm during an attempted cast to get it as far as she could. God had McGuire's back because that could have been tragic. Like an eyelid or eyeball. Instead I just got his arm and he was really tuff about it. Wooops. Gary walked around the boat launch with was rocky and had a slight inclince. After about thirty minutes he was getting fatigued and refused to take another step. He begs to leave and begs to go home. Once we got home he really was uncomfortable. The walking on the rocks agitated his joints. He screamed and screamed. We got the naproxen and benedryl in him. Then tylenol. He screamed when we put his diaper on. I tried holding him and walking around the front yard but nothing seemed to work. He eventually fell asleep. He continues to have a runny/stuffy nose.

I am excited because I have a new blog that I am following. It is a two year old girl diagnosed with JDM this past January. I spent part of the morning reading it. She is a cutie!

Sunday, June 7, 2009

The Day After

We can sure tell that Gary had steroids on Friday. He has been having the usual reaction. He gets very upset one minute and then is ok the next. His pain seems to have increased. He hasn't been walking as much as he usually does. There is also increased arm and neck weakness. His rash is looking really good. Almost gone. They did say that is what steroids will do that. They can wipe the rash out with steroids. It is just contending with the side effects. Our next appointment is on Thursday for his next infusion. Hopefully the weakness will level out and we won't need to go in before that. He is having trouble getting comfortable. I can't get use to him saying owie owie all the time. I can't imagine what is going on in his two year old mind. He was up a lot last night. He complained of his back hurting. This was with his regular dose of Naproxen and Benedryl. You know as an adult that if your pain reliever won't let you sleep thru the night then it is not working the way it should. I was worried last night that he might be getting a cold. He sounded congested with some post nasal drip. Mostly likely contributed to his lack of sleep. I am not going to worry about a cold just yet. I have read that kids with jdm get sick too. Sure there is the chance it could develop into something but we won't jump into conclusions. That would be silly.

Saturday, June 6, 2009

Yesterday's Infusion

Yesterdays infusion started off a bit rocky. We had to go to the infusion Ambulantory Center in Hemotology and Oncology (spelling is most likely way off on all of those.) We arrived early hoping they would get us in a few minutes early to get things going. The waiting room is remarkable in itself. Children, sick and looking as if they are victums of nuclear war. One boy was out of his mind. He could not sit. He could not stand. He needed to move. He need to sit still. The agony is so loud in these poor kids. It truly cracks your heart. Back in the infusion center the rooms are close together and only separated by curtains.

When they started getting us settled the noise of the center came blaring in to our little space. The boy next to us, also seemed to be out of his head, yelled. He yelled for his mom who was sitting right next to him. He yelled for the nurse. Our nurse proceeded to take Gary's blood pressure. It came out to be 155/79. Great and Yikes entered my mind. His temp was normal, his heartrate and respiratory rate was fast but fine. I told the nurse to please page the rheumatologist. They sent over a physicians assistant who covers the ambulantory center. Gary has had facial swelling the past three days especially around his eyes. His right eye really swells. She asked me all the standard pee and poo questions. What are his symptoms ect,. She started over towards Gary to examine him and immediatly asked "how long has his eyes been dialated like that." My heart sank, my stomach flipped and my brain broke into a sweat. (Yes! brains sweat!). She said she would go report back to Dr. Wallace. She returned quickly and said that the Dr. who was busy in clinic said to go ahead and start the steroids. The high blood was due to getting a funky pressure on the leg where they had taken it. The eyes were from benadryl. I looked at her with intense concern and kindly said, "I am not comfortable starting anything until the doctor comes here and looks him over herself." Which meant we would have to wait. Fine with me I thought. They were very good about be understanding. All's I could think was high blood pressure, dialating eyes, STROKE. Hello? But then I have to remind myself the only thing I did was give birth to the child. I didn't go to medical school and have years and years of training. That doesn't make me imperfect and it doesn't make them perfect. Such a difficult line to walk. We only had to wait 30 minutes and she came in and flashed a light in his eyes which were cleary completely dialated. (How I didn't notice it before was because I was to busy paying attention to the swelling around his eyes.) I asked why high blood pressure keeps us from being sent home a few weeks ago when we were admitted but its ok when we come in here? What if you run the steroid and then it goes up? That is already so high for a two year old! She told me I had to remember that he is already has 20mg on board. The swelling is from the steroid. It is to be expected. It's funny when they send in the PA or nurses who act like everything is alarming, get me all worked up. It's not what they and myself know, its what we don't. The doctor said that we will evaluate with the team next week about knocking back down on the steroids again because it is beginning to have a toxic affect on his body. It is all a double edge sword. Back off on the steroid, the disease starts to work, kick the steroid up, the side effects start kicking the crap out of him. The doctor finally got me where I needed to be in my mind in order for them to start the steroid. I told her that I noticed some arm weakness. She said it was from steroids, and he was having a tremor. No, that is not what it was. It wasn't. I have noticed he is getting slower and more owies when we are putting shirts on. Before they were not a problem. After the doctor left, I felt a bit more confident. They started his IV. That went well. I think my two year old is getting use to it. If that is possible. He still cryed and cryed. But he sat in my lap this time instead of being wrapped up.
Meanwhile, our neighbor who had a voice began yelling, "There is a baby crying! There is a baby crying!!". That is ok kid. You yell if you need too. The kid began vomiting. In between yelling he would scream, "I am not going to throw up again MOM! I am NOT!". I felt bad for him. I put myself as a adult in that chair and could only imagine having poisen pumped into body, to make me sick and throw up. I would put a kink in the tubing so it couldn't go in. The fact that I was nauseated already from the situation with Gary didn't help with the sound effects of the center.

Gary slept through his entire infusion which took less then 2 hours. Thanks for bendryl and tylenol. He slept the whole way home as well. We were happy to be home. Still swollen, but home.

Friday, June 5, 2009

Infusion Day

Today is infusion day. Gary has been doing pretty good all week. He has had only a few new symptoms. I noticed a little arms weakness, like hold things ect. His face as been swollen with his eyes as well. But I thank the heat for that. I know, who's eyes swell when its hot. A two year olds who is on lots of medication and has Jdm. I didn't consider it a new symptom, I think. He seems to be having a easier time sleeping. I noticed over the past two nights, I have had to help him less find a comfortable position to get into. So that is really good. I look forward to his muscle strength coming back and rebuilding. I also look forward to it being cooler. We are packing a bag just in case today. I am sure we will be home by dinner though.

Tuesday, June 2, 2009

Infusion Schedule

Gary is scheduled for infusions on:

June 5th 1:15pm 3 hours
June 11th 8:00am 5 hours
June 17th 9:30am 3 hours
June 24th 10:30am 5 hours +Clinic visit at 1:00pm

Favorite pictures from this weekend.




Just keep swimming.......

Gary is doing pretty good so far this week. No new symptoms to report. His hands are clearer and seem to be healing. The back of his neck looks like it is trying to heal as well. No new ouchies to report. As always his muscle weakness is present. But he has not fallen or had any ankle folding and crash to the ground. I am encouraged by this! I think keeping up the presidone and anti-bodies will keep the disease from progressing. I think he will continue to flare here and there. I am looking forward to building his muscles back up. We were talking last night about how Elexis tooked Gary and layed him on top on her so they were face to face then rolled off. Once he found himself on the ground he just stayed there with his face in carpet, not able to move. It reminded me of a newborn with no muscle strength to lift his head. He tried to have a tantrum on me this morning but has no muscle strength to hold his own body steady to maintain balance during the vigourous movement of tantrum. So with a few stomps and hoots and hollers he finds himself on the ground. I know it is not funny at all, but as a mother I can at least say, "you get what you get and you don't have a fit or you end up on the ground?". No need to discipline. Poor baby, LOL. I don't say that to him, I just think it.

Grandpa Gary is having surgery today on his ears to hopefully restore some hearing! Prayers for Grandpa Gary!