Swallow Study

Gary will not be having his NG tube taken out just yet. He still is showing signs of difficulty. Bummer, but just as well. He was very in tune this evening with having to have a IV put in. It was not his normal behavior. It was so important to me that they get it on the first try this time. I did everything in my power to ensure that happen. I took him to the tube room and gave him a hot bath. Then gave the nurse specific instructions on how I wanted his hands and arms wrapped. It worked great. The IV nurse barely got the needle in and WA LAA, we hit a fountain. Our schedule is set back right now due to a code blue a few doors down. I have not had the privilege to experience one of those just yet. They are very emotion and amazing. The nurses in every part of the hospital SPRINT like the place is on fire. Security even comes to make sure the halls stay clear. Crazy. Robert got here towards the end and walking thru the hospital seeing everyone running like it was a race to the finish line.

Gary's levels will be back in the morning. The doctors will give us our new plan after that.

Friday Infusion Day

Hopefully this is our last weekly infusion. Today Gary has a swallow study to see where we are at as far as recovery our swallow functions. I think he is ready to have the tube come out. We have had very little choking lately, on liquid and solid foods. He is also needing less rest lately. He can go longer and farther. We also have moved him out of our bed. Since he has been sick, I sleep next to him in our bed. We put a mattress next to our bed and moved him down once he is asleep. Kind of starting over again. Before he was diagnosed, we had him moved into his brothers room in his own big boy bed. We stay tonight for cytoxin and methotrexate. Should be smooth sailing. Last week Gary was hanging onto his blood so they had to draw from his foot. I hope that doesn't happen this week. :( But if it does, he hates it when it is happening but is quick to get over it. I will try and update from the hospital again if I can to let you know about how our levels (should be normal because they were so close last week) and how the swallow study goes.

We are so excited for next weekend! We are going on a camping down toward Portland, then going to the Cure JM concert for Mason. The kids are super excited because we haven't had a chance to do much of anything as a family this summer.

Melting in the sun

Wow, its hot! Gary and the kids have been hanging in the pool quite a bit. We just have to be careful not to get Gary's face wet.

Unfortunatley, after a swim last night his NG tube came out. Just like that. For the first time! Just came right out. The family all got into there positions. Gary on Uncle Bill's lap, Daddy holds hands and keeps his head still. The kids behind us watching. Oh yes, we can't forget Auntie Alyssa. Runs and hides in a corner, rocking back and forth in a fetal position till it is all over. I don't blame her. But it went in, at first I didn't think it was going to go, but gently pushing so it finds it way down. He looked so much better with it out I was tempted to leave it out! Everyone was having anxiety about getting it back in so we didn't waste too much time. We needed to get it over with. Our next overnight infusion is on Friday. We have our appointment at 4. Hopefully this will be our last weekly infusion. There is a meeting on Thursday to discuss what will be done from this point as far as where to go with treatment from this point.

*Sunday*

We went to our church picnic. We all had so much fun. Our church family surrounded us. I could tell Gary was happy to see everyone. I love how Gary seems to know that he is very much loved. He is happy to return that love with hugs. Of course he watches and does as we do, hugging, shaking hands, ect,. But some kids won't do that. I am just glad he embraces that love in his two year old way. It was so good to see everybody and not be in the hospital for once. Praise God.

My Uncle Tom stopped by yesterday. It has been awhile since we have seen him so it was a pleasant surprise. Uncle Tom, if you find your way to our blog, we love and miss you so much. We will be praying for your diabetes and your familys health.

Levels & Water

Our levels are almost normal. I was hoping for normal but they are down a little bit again. We got in a little bit of trouble for drinking water. I have been trying out different foods and gradually increasing what he eats. The moment he shows difficulty I say all done and remove the food. This morning the nurse came in and said that the doctor ordered nothing by mouth until we could get another swallow study done. I said, "I need to speak with someone, because he has at least been cleared for ice cream and things of that nature." So the doctors came down and talk to me. They stressed that the risk of getting any food or water in his lung is not worth the result. They highly recommend no thin liquids, and only soft mash potato foods. I kinda felt like I was getting busted for getting a little over enthusiastic about the return of his swallowing capabilities. They are so right. I know Gary though. I know what he can and cannot do. Then again, my caution has detriorated. I am just so ready for him to be normal again and get the dang NG tube out. I think it will be awhile until that happens. The goods news is his levels were down enough to lower his steriod by 6mgs. Next week when we come in for our LAST weekly Cytoxin infusion, we will have bedside evalutation done and another swallow study done. In the mean time they told me to back off with the food and water. I may think it is time, but they don't. Unfortunately they can back themselves up because during our clinic visit yesterday Gary handed me my bottle of water and asked for a drink. I was so focused on what the doctors were saying I gave him a little sip without thinking. They were a little shocked. Of course he sputtered and coughed on it. He doesn't always do that! Uggghhhhh. Darn it. "Nothing like a little water in the lung," says the doctor. He he he?? I wanted to hide. I frantically tried to explain that I didn't mean to give him the water, but we have been trying at home and he was doing ok with it. Bad timing I say. BUT a big BUT, I will not jeopordize Gary's recovery and go back to obeying the rules. Rule number one, do not put our child in ICU by pouring water into his lungs.

Friday Infusion Day

Today we have our overnight of Cytoxin and other fun stuff. I am so excited to see where Gary's levels are at this week. He is still recovering which means he is still getting strength back. So great! I will update from the hospital later on this evening if I get the opportunity. Love to all.

AUCTION for JDM

http://www.youtube.com/watch?v=3BgzsEGxMWg

Excellence

I am having a wonderful time watching Gary catch up. He is doing new things everyday. He can now get on and get down from the couch by himself! He even tried to run. I am really looking forward to lowering steroid doses so we can get some of the weight off. His personality is returning. He is sweet and likes to laugh. He can do stairs if you help him lift his leg. After recovering from "Chemo Friday", he got his energy back. He is also starting to eat more with less choking. I am excited to see what this Friday appointment brings! I think he may be ready for a swallow test. Hopefully we can start the tapering of steroids. His rash looks pretty good too. He seems to be tolerating the sun a bit better as well. As far as his eyes, they seem fine now. He must just have been super tired and full of iv fluid. On Monday, he had his first physical therapy evaluation. He had fun playing with all there toys. We qualified for at home care which will be nice. I requested that once we are off the immunity suppressing chemo, that we move his sessions to the center so he can get a change of scenary. I still cannot believe how fast the summer is flying by.

My Baby

Our overnight stay at hospital went fine. Gary got his cytoxin and methotrexate. Today he is very tired. He seems stiff and slow moving. The next couple of days he will recover. He fell asleep at about 330 then was up again at 730. He was up for about twenty cranky miserable minutes, and he is now down for the night. He was very irritated and itchy when he woke up so we gave him benadryl cream and benadryl in his ng tube. He seemed to very swollen around his eyes. They were very blood shot and looked funny. He has been complaining about them in the morning when he wakes up. Gary complained a few times during the examine in Chicago when they pressed under his eye. I had mention this to the doctors and asked if a eye examine would be appropriate at this time. He just had one done 2 months ago. I never got an answer on it. On Monday, I will call and make the appointment myself. The high doses of steroids he is on, as well as the other drugs put him at a higher risk for problems. My poor baby :(

It's Official!

We are now www.garyvsjdm.com. If you here of anyone having trouble viewing the blog, you are welcome to forward on the new address. The blog says it will redirect it. I tried and it didn't redirect it :( . We shall see.

Hillsboro, AUG 8th

I wanted to invite one and all to Mason Smedley's concert in a couple weeks. It is in Hillsboro, OR. The link is to the right. Let me know if you are interested in going.

THANK YOU

Thank you Lynn for the wonderful CD's. I have not had a chance to listen to them as of yet. I look forward to putting them on my IPOD. Thank you Heidi for the outfits you brought over for Chicago. He went looking so handsome because of you. Thank you to my sister and brother-in-law for doing such a wonderful job of taking the kids camping and keeping there minds away from me being away. Thank you to Dale and Shari Roth for the bag of goodies. You sent us to Chicago representing Seattle. Mariner jammies, Mariner blanket, all sorts of love was floating around in that bag. Thank you to Erin Katzner for your contributions. Thank you to everyone for your well wishes and love and support. I can never say thank you enough. I am just so grateful, I could paint the sky with a great big giant THANK YOU.

Unload

We are home from Chicago. As you know, we got into Chicago on Sunday night. Landed close to midnight. Everything went smoothly. Gary did simply wonderful on the trip. All things considering he was very easy to please. Sunday night was a little hairy with trying to make our way to the hotel shuttle. O'hare has a lot of long hallways to make your way around in it seems. The first thing we see is a homeless person sleeping in the hallway of the airport. Sure I have to be nervous, but how nice it would be to pick him up and put him in a bed. Then there was a gentleman playing the trumpet for money. That was neat, but it was late at night and the whole thing reminded me of a haunted fun house. It was fine though. We got to our hotel, which was nice. The best bed I have ever slept on. We didn't go to sleep till about 2 because we were still stressing how to get there. My sister said we needed to be comfortable as possible, and she was right. No use messing around with the L train. Up at six the next morning, got a cab, and we were off. Chicago is.......................has..........a lot streets. LOL. We made it just in time for our appointment. Took vitals, did the standard stuff. A doctor (Dr. Pachmans fellow doctor) came in and talk to us about all the medicine Gary was on. More like came in and asked what he was on. I told her what and how much. Then we came to the cytoxin. Cytoxin is a chemo drug that was started when Gary stopped swallowing. I know I have to talked about it in previous blogs. It is a heavy duty drug. This was made apparent to me in Chicago. The doctor asked about the cytoxin, how much. I wasn't sure of his dose but he gets it once a week. She looked at me and thought I misunderstood her. She said in a exaggerating tone, "the cytoxin?". I said, "he gets cytoxin once a week". She just starred at me said ok with a huff and continued to type. We had back to back visitors. The next people that came in were from the research team. They wanted to enter Gary into the research program. I happily entered him because we were there. The test were nothing that involved too much pain. They took pictures of his nailfold capillaries under a microscope. They were great about explainging things. They took a picture of mine, then his. Printed out the two photos and held them up side by side. My capillaries are evenly space and are a faint red color. They meet right up with my nail bed. Gary's has less in number capillaries. They are drawn away from his nail bed and are funny shaped. A few are dilated and curved downward away from the nail. I think this is a indication of how those capillaries throughout his body are which intern may effect how well he absords the medications? This is all so complicated. Next the physical therapists came in and watched him sit, stand, ect. Didn't say much. Then the parent volunteer came in and chatted. She was very nice. We were able to get into a deep conversation of any kind because someone else walked in who was part of the study. The parent volunteer gave me the Myositis and You, very good!

Picking up where I left off......
So I spent 10 minutes with Dr. Pachman. She was very honest with me and said that she has gotten lucky. She explained that she has hit a lot of stumbling blocks along the way but written proof is something she has been unable to produce because of lack of time with some of her results. She told me that Gary and his treatment are to far along to put her hand in it. I felt like if that is something we really wanted, for her to take over, she would have. She pointed out a lot of things that she felt were not practical. Gary is too young to travel for check-up's and treatment. Gary's case is complicated. He does not have your typical (if there is one) run of JDM so far. The fact that he is in the middle of Cytoxin and Methotrexate, I feel she would not change much or it may be not beneficial for our treatment. It is one of the things I was prepared to hear. Of course I did not want to stay in Chicago. It was all good news as far as, she didn't hold a stop sign up and say, "this isn't right." She asked me about me. Reminding me how important it was to take care of me. I know this. I find it loving and nurturing and motherly of her to offer such advice. I don't mean to sound ungrateful. But I didn't fly all the way from Seattle to be reminded of the fact I need to make sure I exercise. I don't mean that in a disrespectful way at all and I may just erase what I just typed. I do appreciate that. I really do. That is not my heart. That is the desparation and frustration talking. It is the dark unknown of what I really should do for Gary. It flustered me because I was there to find out if we were doing everything we should be doing, and I didn't get that magic answer. To have an expectation like that was a bit unrealistic on my part. She is a doctor, not a fortune teller. Only God knows Gary's plan. So I shall go there for my answer. Anyone have his email? HA HA HA HA? Dr. Pachman is willing to consult with my doctors or with one doctor. I am still trying to figure out if that is necessary at this point. I am thrilled to be in contact with Damon and Kristen Smedley, Mason's parents. I am just starting to ask questions. I like everything they have to say so far, including a comment that they considered coming here for treatment. I am in my own head right now, just sitting. I am blessed.

CHICAGO

We are here in Chicago. We have seen Dr. Pachman. I will blog later how that went. Summary: She has agreed to be a consulting physician. I am interested in what Seattle Children's will do with this. She said that Gary is to far into his treatment for her to step in. Hmmmmmmmmmmmmm. I am still processing the whole thing. I am having mixed emotions. Now we are facing the dreaded standby flights. After spending the day in airport we are back at a hotel and will try tomorrow. *Note: Everything in Chicago is overpriced and the food doesn't meet the price. I am ready to come home. PRAY for open flights. Off to find some deorderant because my deorderant is headed to Seattle without me. (When you fly standby, only you do, not your luggage.)

Coming Soon!

I am going to be changing the name of the address to my blog. I don't want to leave anybody behind. It is going to be http://www.garyvsjdm.com/ or http://www.mamatiger.com/. Obviously the link is not going to work right this second because I have not set it. I am not sure when but soon.

Day Before

As my friend Lynn put it: Well, here it is, day before the windy city. We returned home last night about 10:30. The hospital is never fun. I am developing a pure hate relationship with it. Gary has been that way since day one. Everything went fine. I knew this was going to be tough on both of us. We usually need two or three days to recover after overnights in the hospital. But we fly out tomorrow. Good news, Gary's levels are still heading in the right direction. They are not 'normal' but improvement is still good. Especially with the improved strength. Getting pumped full of IVIG and steroids and chemo drugs is never a picnic so the past couple days to say he is doing good isn't accurate as far as feeling icky from everything. I do know one thing. My poor little baby reminds me of a balloon. He is so big! Rob and I went had gone and bought him a few outfits for the summer and last night he looked like he could explode out of them at any minute. It rather cute but if it were me, I would be beside myself.

I have to say it was interesting this stay. I am completely out of the closet with going to see Dr. Pachman. I talked about it openly and freely. I noticed there was a change in care. I am not imagining it (you know my imagination, works great). We met a doctor we have never met before, I mean I most definitely liked her, but I wonder after three months of care, (I mean we are talking after being there 70 out of those 90 days, ok so not that much but close to that ratio) don't I at least get to rotate the many doctors we have seen? That's fine. There wasn't a disregard in any way. Gary still got his care, but there was a quality that changed. I suddenly was having to ask for things more than once. I asked one of the doctors (he was a fellow so still learning I guess) for a note for Gary to ride the plane. You know, something that says he is safe to fly. I don't anticipate any trouble with that but just in case I want to be prepared. Didn't get it. Then the nurse I have been chatting with about going to Chicago, gave me more warnings. Uuuuugghhhhh. Thanks for the anxiety. She warned me to remember that sometimes Dr. P is about the research aspect of this disease. She tends to want and apply's the same treatment for each patient. She also warned that she will have tests done that insurance doesn't cover and Seattle doesn't use. What do I with that? So suddenly was filled with all this doubt, and should I go? But I was distracted with trying to chase after everybody trying to get stuff done for the trip and for Gary. My distraction dissolved my anxiety and fear. By the time we loaded up to go home I was tired and angry. During rounds, the doctor looked at her interns and said, "Mrs. Bradford needs his latest lab reports, blood counts, clinic notes, ect,. please help her obtain those. She is headed to Chicago for a second opinion." Hmmmm I thought. I just might be paranoid but did she say that in a way? I interupted her and said, "no it is not a second opinion, not at all, it is just a wise consult." After asking all day for someone to get those reports to me so I could take them with me, it was 5 o clock on a Friday. They had all already hit the pubs for the night and I was getting fiesty. Not to mention all delays. Delay in delivery of medication. Blow IV's. I am sorry to be so whiny here but really people, no I do not want to poor his pee pee from a bag into a cup. Why would you ask me if I wanted to do it. I suppose after all these times staying in the hospital we have been lucky we have not had more experiences like this. I could go on and on. Like the pump to feed Gary was malfunctioning. It was NOT working. She had me sit by the pump and turn the alarm off and hit continue every time it went off. Every time she came back in I said, "it is NOT working". For thirty minutes I was patient, this was on top off holding a screaming, dripping with sweat, hooked to tubes and wires, two year old. The steroids drive him crazy! I asked for Tylenol and they walked in and of course handed it to me. I just giggled because after awhile, its all ridiculous. I asked for benadryl . Never got it. So I went into my own stash of medication and got my own. He was better after that. Then I finally got my pump out and hooked up to our home pump. I mean I did have my nurse running around finding my reports. I told her I wasn't leaving without them. So frustrating, I had to explain it over and over again, and they just look at me like I need an interpreter. Someone comes in for the clerical station explaining that Health Records had gone home and I need a release. I already did that I explained. I was starting to feel sorry for the next person that came in trying to pass the buck because I was about to take my Christian pants off and get mean. Tired, hungry, frustrated, not a good combo for a Mama Tiger. The nurse eventually got what I wanted I think. After idiotic banter with the intern, who did not come in and see us off like they usually do (hmmmm? wonder why?), I was ready for home.

TODAY
So today I need to wrap up last minute details, get all my records together. My little sissy doesn't get off work till four and our plane leaves at 530, so we will be running tomorrow. Since we are checking in at the last minute, I need to try and get everything into a carry on. All the formula and his meds, should be interesting. It will take precise organization of space for this to happen. Tomorrow I want to try and get the house clean for when we come home. You know how it is. I hate coming home to a messy house. My wonderful sister and brotherinlaw are taking the kids camping so I want to go get a few things to send with them. Yes, I am stressed, but very much blessed!

*Fun tid bit: Last night I was pulled over in Black Diamond because my headlights were not on. I had them turned on but for whatever reason I didn't notice they were not actually on and working. (Reason was I was so tired). It was fun. Only because I did not get a ticket and the officer was nice. I am sure he was just checking to make sure I wasn't drunk. I had gotten flash just before I passed him. I thought, why is he flashing me? I started looking at the road, and was figuring out what was going on as I passed him. I thought, well, if he doesn't pull me over, I guess they were on after all. I am glad he didn't drag me out of the car, step on my head and tazer me. Would have put a real damper on things.

Infusion Day

We check in today at 1 for our overnight infusion. I have a ton of things to do before we go. Hotel is booked. We did not get a hotel near the hospital but that is ok. We are by the airport which I prefer because we won't get in till almost midnight on Sunday. With the hotel being close, I don't need to worry that our bed won't be far away. Need to double check a few other things.

Yesterday we took Elexis up to see the pediatrician (I swear I should just wear scrubs everywhere, so I fit in with all my medical peeps, after all I am at some kind of medical facility, all the time, lol). She has a strange rash covering her entire back. Ya know how I love rashes. Rashes are a big deal! Anyway, our doctor wasn't quit sure what it is. I know exactly what it is. But I am leaving tonight and then again on Sunday so I wanted to be safe, not stick my sister with having to take her to the doctor if it got worse. It is from excessive swimming, and sun exposure. The doctor we saw did run down the usual list of questions. Does anything hurt? Your muscles? I felt like grabbing the man by the collar and saying like Clint Eastwood, "don't go there doc, I ain't in the mood for games, I already got one with achen muscles, rash, I don't got it in me to do two of um now." But I didn't do that. That would have been scary. He may have produced a needle and stuck me with some sleepy juice to get my hands off him. I know, I have quit the imagination. But she is fine. Just needs a little scrubben and some lotion. If it doesn't get better, than we can come back.

Gary continues to do better. Yesterday wasn't as good as the two days proir. He was more ouchie yesterday and by 7pm he was asking to go to bed. He wanted to lay with Mommie in bed. I am sure until we can get this into remission, we will always have our good days and bad days.

Another angel dropped a wonderful gift in the mail for our family. No return address, no names to properly thank you. Well we thank you! WOW, my children especially loved it! Thank you. Those will come in handy. I will try and update from the hospital later on.

Amazing Week

So far we are having a terrific week. In so many ways! We are busy getting all geared up for Chicago. God has been busy sending blessings and blessings our way. It truly is crazy and amazing. If I could put a color to how it makes me feel, it would be that bright white yellow color. Some dear friends from Solid Rock stopped by with a bag of blessings for the plane ride. My heart could truly burst. In the mean time, Gary is doing so good. Really. We have had a tremendous week. He is starting to do things he hasn't done in since May. He is doing bigger steps, with effort of course but considering he couldn't get off the couch. He actually bent over and picked up a ball of the ground tonight. MY OH MY OH MY! I swear I could hear Dave Niehaus yelling! We are starting to try foods that are a bit more challenging, scary, yes, but necessary. Gary ate a banana, and a few other things. The whole trying to eat actual food thing is nerve wracking but like I said, need to find out what this boy can eat. It does involve choking episodes which traumatizes me. Then I don't give him anything for awhile. I did call and ask for another swallow study to be done, just to see where we are truly at. I am not sure if that will be done before or after Chicago. We are suppose to check in for another infusion at the end of the week. Still waiting to here which day that is.

If you email or post comments to me and I don't say anything back, I really want to and I mean to. Sometimes I do in my head but then don't get a chance to actually sit down and type it. And if I forget, thank you thank you thank you!

Speechless

This is my speechless blog. Thank you to Prime Source and everyone of my husbands co-workers. I am so thankful. When I heard about everyone's generosity, it brought me to tears. I thank you so much. My family thanks you. Most of all, Gary thanks you.

Meltdown

Nothing like a little fourth of July meltdown. Good golly.

Chicago Bound

We have an appointment for Monday the 13th. We fly in Sunday night.

Our overnight stay went well. Gary tolerated his chemo drugs ok so far. We still have one more to go this morning which I am glad I blog because it reminds me once again, hang out for a few minutes or bring a bucket in the car. Last methotrexate they put a anti nausea in his iv. I will remind them of this! I did not talk to the doctors about us going to Chicago. I will. I will. Stop nagging. I think Chicago (Dr. P) will agree with his treatment. I don't think it wise to transfer his care to Chicago but have Dr. Pachman as a consulting physician. I hope everyone has a wonderful 4th of July. Gary should, it is a night time activity :).

Now I am researching where to stay. Think I will go for the Hilton or the Marriott. NOT A Super 8 will do.