Thursday, July 31, 2008
Not the way I wanted it to happen
I just took my mom to the airport. She is going on a way fun trip to Navuoo tomorrow. A big thanks to her and all her help. I wouldn't have survived the week without her.
We are still waiting to see if today is the day of our parole. I swear I slept last night, but I feel more tired than ever.
So I feel to tired to be witty and wax poetic right, now. But I didn't want this milestone in blogging pass by with out comment.
A dream is a wish your heart makes.
The doctor came in and said that he has to talk to our two other doctors, but if everyone agrees, we may GO HOME TODAY!!!!! It is all happening so fast.
Diana arrived safely home yesterday, and my sisters did a remarkable job of finding all her stuff. I will take my mom to the airport this morning, but I think it will be OK, especially if we go home. Yes it will still be hard, but at least we can all be at at the same place.
Wednesday, July 30, 2008
Wednesday Night
Jared had visitors come today. Two of his best friends came. It was so good for him. He had stopped on one of his walks in the play room, to play the Wii. Then the friends came and they joined in. It was great for him. Then when he was too tired to sit up anymore, they moved back to his room and played XBOX. It was the best thing to see in inkling of how his life will return to normal. I am posting this picture upon his protest. They stayed until dinner time.
Jared drank his pedia sure for dinner, and then promptly fell asleep. He is worn out from all that fun and no sleep last night.
So here's hopin' we are not long for this place.
Seriously, put a fork in me I'm done.
Our nice quiet room mate of yesterday, decided to pull a Dr. Jekyl on us and scream and cry ALL night long. I feel for the kid since he had surgery to put a pin in his hip, but this did not ease the inconvenience of laying in bed all night listening to him cry on the other side of the curtain. I don't know what the deal was, if he was just a wuss, or if they were not giving him enough pain medication, but criminey, not pleasant. Finally I started pushing the call button so the nurse would come in and hear him crying and do something about it.
Part of me wishes there was someway I could pull a Moses impersonation and strike those doctors with a plague, so they would let us out of bondage. Let's see what would be best, frogs or flies? Hard to decide. I know, I know, we need to be sure he is better, and me of all people who was sounding the alarm last weekend, should be prepared for the back slide that could happen at any time.
Diana comes home today, and my mom leaves tomorrow, and so it just seems like the perfect time to get out of the hospital.
Like the title says, put a fork in me, I'm done.
Tuesday, July 29, 2008
Evening Report
He walked again two more times today, so that is progress. Yesterday, he may have only walked once. His fever was back down today as well. So we will see if that lasts. They think that it must be viral, and will run its course.
His chest x-ray was normal. His urine analysis was totally normal. So we are a little bit more cautiously optimistic than we were this morning. Such a strange word "cautiously optimistic."
The orthopedic surgeon came and looked at him tonight. And he was pleased with everything that he saw. He wants the drain to be removed tomorrow. Jared is a bit apprehensive about that because it hurt pretty bad last time.
Of course I couldn't resist the temptation to ask when we might go home. He still wants us to take each day. Hey I think we should try to make it to Sunday to make it an even four weeks.
The infectious disease doctor, the orthopedic surgeon, and the pediatric Doctor here have all got to get on the same page. So they are going to conference and then we will see.
I have to admit that I am almost allowing myself to hope. He only needs the IV antibiotics until Sunday, so we may get those all over with before we even leave, or it will only be a few days that we will need the home health nurse.
So we must continue to see what tomorrow brings.
Mission Impossible
Your mission, should you choose to accept it, is to try and find all of the ridiculous stuff that an emotionally distraught mother let her unaccompanied minor take with her to Seattle.
Attached please find detailed list of such ridiculous stuff. And no, I will not hold you accountable for any lost things. She would have lost them if I were there myself, how could I hold you to higher standard than I hold myself.
Good luck, this message will not self destruct.
DVD player, power cord, and car cord
Camera, usb cord
Nintend DS, power cord, ear phones
DVDs:
Hammy Hamster
Shaggy DA
School House Rock
Leave it to Beaver
Charlie and choc factory
Sleep over
Enchanted
Annie
Bella Dancerella
Night at the Museum
Pink MP3 Player
Add this all of the stuff she received for her birthday, her beloved watch, DVD of pictures and videos. It really does seem impossible. And I didn't even think to make a list of all her clothes, which was poor planning on my part, I know.
Morning Report
So we are left wondering why does he have a fever. At this point the only possibility is that it is viral. Gee go figure he may have picked something up in this revolving door of people and germs. He doesn't have any other complaints to make you think he is sick. The doctor said he would feel better, if Jared had a yucky nose or sore throat, or just generally didn't feel well.
The orthopedic surgeon may want to do some further tests. So for now we are just still in the holding pattern. The doctor did say that he would not send us home with a fever.
So for now we are cautiously optimistic.
Monday, July 28, 2008
Still Waiting
I feel almost human again with a nap and shower. I also had time to pay the bill online before I came back for the night here. We have our new room mate and he seems nice enough and quiet enough.
So we will talk to you tomorrow.
PS More Gratitude
I have slept on this bed four out of the past five nights. And here is the computer, if you look closely, you can see it logged into my blog. It has also been such a source of communication with my friends and family who are so far away. So hip, hip, hooray for technology.
The Mother of all Freak Outs
So this morning I have been singing Old McDonald. You know Old McDonald had a farm, and on his farm he had a freaking out mom, with a freak out here, and a freak out there, here a freak, there a freak, everywhere a freak, freak. Well that has pretty much gotten people's attention. And I have had the chance to vent to many people.
The doctor in charge came into the room on rounds for the first time since we have been on the regular peds side. She was accompanied with about 15 residents. I did a great rendition of my freak out for all of them and expressed my concerns. We talked about the MRI later that day, and I requested the Jared have some Valium before it, because he wasn't that happy about how it went the last time. Jared piped up and said he didn't need any medication to help calm down, but would they please give it to his mom. No kidding, he actually asked that I be medicated, and I can hardly blame him.
Then I talked to the unit manager. She moved us from the side of the room by the door, to the other side by the window. Now we will not have to have all our room mates traipsing past our side every time they change. We have probably had about 20 strange people in the room in the past three days. Who knows what germs they have exposed Jared to. The unit manager also said that I could give her a list of the nurses that we want to have and she will see if she can make it happen. Maybe that can stop the steady stream of new people.
Then the chief resident came and talked with me. I think that she would be equivalent to the ER character of Carrie. Anyway she came to talk about the resident the night before and the fact that it seemed that we had no doctor for two days last week. The resident last night told me that story, which I am sure he was not suppose to tell me. It has just added to my list of complaints. Another thing is that because of his weight loss, the nutritionist recommended that Jared get pedia sure last Thursday. We did not get our first can of it until today on Monday. That seems ridiculous. We were told that they were out, but you can not tell me that somewhere in that whole hospital they could not find a can of pedia sure.
Anyway now everyone looks at me funny, but they do seem to be getting things done. So it is OK.. I don't care how neurotic everyone there thinks I am, as long as Jared is taken care of.
So at this point we won't know anything new until tomorrow. The blood test should be back at 9 in the morning. And Jared should get his MRI tonight, but I doubt anyone will tell us anything until the morning. Dang more waiting. I an not a fan of waiting.
In the mean time Marion and my mom have sent me home from the hospital. Yes, I have been exiled. Marion says that I am upsetting Jared. He is probably right. So I will try to get a shower and a nap. What a novel ideal.
What I want to know is if I am crowned the Freak out Queen, do I get a special crown and scepter?
I told you so...
We never did get another room mate last night. After I finally calmed down, I think it was my best night yet here. I really didn't hear much at all, all night long.
At 7 am this morning, the nurse that does the vitals, came around. I awoke to hearing her tell Jared that his temperature was 102.7! In my blurry mental state, I had her repeat what she said and then take his temperature again. AAAAHHHH! I was right, he is getting sicker. This is not good, and something to be concerned about.
I told this nurse, I needed to speak to the doctor, STAT. She said she would tell the nurse. At this point I got out of bed and took matters into my own hands. I saw the condescending resident who had tried to tell me I was crazy to be so concerned last night. I said "102.7, see I told you so" Mothers know when their kids are getting sicker. In actuality I would have preferred to be wrong. In fact I had convinced myself that he was probably right, and hey maybe we would even get cleared to go home.
So they took some blood from his pic line and from his other arm. He was extremely upset to be poked again, because we have foolishly promised him that after the pic line, no more needles. That way they can see if there is any difference in the two blood samples. It is possible that his pic line is infected. I of course am imagining the worse, that it is another pocket of infection that will require another surgery.
Also they are going to do another MRI. He is not real thrilled with that either, as the first one was not the best experience. At least this time we will have one of the child life specialists that he knows go with him. She will be allowed to stay the whole time. They won't let me in for some reason. Discrimination against psychotic mothers I am sure.
My mom will come today and I will go home and take a shower and change my clothes. I was joking that this is just like girls camp. No sleep or showers. I think I do need to get out of here, because my blood pressure is rising. I have snapped again. But I think it is a good thing. Before today, I think the doctors on this side have treated us like they didn't think we needed to be here. If it was up to them, they would have sent us home. So now I am pretty much saying, this is wrong the way things have been and it has got to change. If we have another surgery, maybe we will get to go back to the picu, which is what both of us want.
The fever could also be viral. I just need to read yesterdays post and remember how blessed I really am. In the end, the Lord is in charge. So I will just keep hanging on for dear life.
Sunday, July 27, 2008
In which case google is a bad thing...
Let me just tell you about my night last night. I went some thing like this "Pat Hammond, come on down, you're the next contestant on "Sleep Torture Chamber".
Round One: We are going to see how you handle a new room mate at 9:30 at night. Yes we know this is room mate number 5. Welcome to as the "room mates turn". This room mate has a broken femur from his motor bike landing on top of his leg when he tried to go over a rock. He was helicoptered in here and at 6'2", his head and feet stuck out either end of the helicopter. And they were just like open in the air. Of course a fifteen year old kid that enjoys the thrills of motor biking probably thought this was way cool. His mom not so much. Think hysteria. So new room mate comes in, and his bed will not stop making a beeping sound, that probably had all the dogs in the neighborhood running for the hills. Nothing they did could make it stop for about twenty minutes. As a side note, this room mate seemed very nice, with equally nice parents. One out of five not bad.
Round Two: Hospital Beds for dummies. Jared's bed decided to stop working, when he tried to put it down so he could go to sleep. Several nurses worked on it and nothing. Finally they pulled the CPR release to get the bed to go flat. They said they would put in an order to maintenance. But who knows how long that would take. In the mean time because Jared does not like to lay flat, they brought some pillows to prop him up. Yipee! Have I mentioned my goal to collect as many pillows as I can. So far we are up to ten, which I let Jared have one or two, and I use the rest to try and line my cot to make it comfortable.
Round Three: Throwing up is fun to do, fun to do, fun to do. Broken leg kid is recovering from surgery to put a rod in his leg from his hip to his knee. Some bright nurse forced him to drink grape juice to soon after surgery. So my mommy radar woke up when I heard vomitous noises on the other side of the curtain. (Apparently, the spell checker does not think that vomitous is a word, well I beg to differ.) Think the noise it makes when you dump out a dish pan of water. Not good. I hurried and pushed the button for the nurse, asked if he was ok, and then went out to find some one to help. Then I blissfully went back to bed while two nurses got him cleaned up. And blessedly, my allergies are so bad here, I couldn't smell at thing. This was probably about 12:30.
Round Four: A visit from the "Maintenance Man" He insisted on turning on the lights. Didn't they teach him to do repairs in the dark, like reading Braille or something? It is slightly unsettling, to wake up and see a strange bearded gentleman, standing at the foot of Jared's bed. Luckily he had one of the those work shirts with the name on it. You know Bob, or Ed, or Fred or something like that. This was 2 am.
Round Five: Let's have a heart attack when awakened by a loud crashing noise, in the middle of the night. The nurse moved the TV cart slightly, in order to get in and check on Jared. When he moved the cart, the game cube fell onto the floor and sounded like a bomb going off. I pretty much jumped to the ceiling and lost a year off my life expectancy. This was at 4 am when they came to check his vitals and do his IV.
So yea that is one night of sleep I will never get back. We all did then manage to sleep in until nine thirty. This is against the rules for me, because supposedly the fold out beds are suppose to be put away by 8 am. Luckily it seems to be more of a guideline than a code.
So to protest the bad night of sleep I got, I decided to stay in my pajamas for the day. This may have been a mistake, as people gave me strange looks. But fortunately I am more of a slave to comfort than fashion, so all is good.
Next I ate my yummy breakfast of left over chips from Qdoba. I had brought it last night. Man I love those things. And since I really did not have much else I made due. Hey they have corn in them, can they really be that different from corn chex?
After that delicious meal, I received a call from my sister, inquiring in a rather casual way if Diana had been immunized against chicken pox. I replied that she has, but why would you ask such a question. Oh there maybe a chance that she has them now. What. How. What. Is it possible to still get them, even if you were immunized? So she and her cousin, who was also covered in spots, stayed home from church. At this point they weren't sure about it. But something fun to contemplate, another sick kid miles away from home. By tonight we have determined that it can't be chicken pox, because several of the kids have these spots, but they were not together two weeks ago to be exposed together. It is probably something they got from the hot tub at my sisters house. So they will be fine in a few days.
We then had a pleasant afternoon. I spent a lot of time on the computer as you can tell from all my posts. At one point Marion and Jared's scout master came down. They gave Jared his board of review so he can get his star. Then they gave both of us the sacrament. I hadn't realized how much I missed that since neither of us have been to church for three weeks. After dinner, we had a visit from Jared's teacher quorum advisor and his family. He shared a scripture with Jared about seek and ye shall find and how Heavenly Father answers our prayers. We had a nice prayer with them before they left.
This is where things went downhill. Yesterday and today Jared has had a very low grade fever. In fact the doctors here do not think that it is a fever, because it is only 99.8. So I then had a freak out moment. I started obsessing about and started imagining that the infection was coming back. Because that has been his history: he has a fever, then they find a pocket of infection, they drain the pocket, he does better for a few days, the fever goes away, the fever comes back, they find a new pocket of infection, they drain again, he does better for a few days, the fever goes away, the fever comes back. Yea, we have done this cycle four times so far, so call me neurotic for thinking here we go again.
So pretty much even though a doctor told me earlier, that for someone his age it is not considered a fever until it reaches 101, me not so much convinced. Then I talked about my concern with my mom, in front of Jared, and got him to board my train to paranoia. Bad, bad mom. At this point he broke out in shivers, and was complaining of being too cold. I am also extremely worried about his weight loss. He has lost 11% of his total body weight. That seems alarming to me. So this is where I googled weight loss. And read something about how when you loose too much weight, your body looses its ability to regulate its temperature. Well that just pretty much put me over the edge to loony toon freak out phase of mothering. Which of course scared Jared to death. He envisioned that he was going into shock again, and that he was going to die. Good gracious, I have got to do better at containing my freak out, until I go into the hall. Finally a doctor was paged to come and talk me down from the ledge. I asked him about what I had read on Google. He said that is very, very rare, and not something they are not worried about right now. I am trying to convince myself that he is right, and things are OK. But deep down, I don't think they are taking care of him well enough. It is minimally adequate at best. And I feel so helpless to do anything about it. I am just to nice and just go with the flow, but I am going to have to step it up and start being the squeaky wheel to get some grease. And so here I am for the second night staying at the hospital, because there was no way that either Jared or I could stand for me to leave him after all that went on this evening.
But hey good news, at least I am already in my pajamas.
Really more than anything, I want to get him away from the people. Just take him home and nurse him back to health. Maybe that is part of their maniacal, devious plan. I wasn't quite sure I was ready to take care of him, when we were in the PICU, but now they have driven my down the lane of please, please, just let my people go.
I am Blessed!
Priesthood blessings: These blessings have enabled the Lord to bless our lives, and the actions of the doctors. The blessing Jared received twenty one days ago, truly had such a spirit of peace in the room. As we got here and things went from bad to worse, I was able to draw strength from that blessing and feeling of peace. Jared really did come so close to dying those first two days, but the spirit protected me from the fear and anxiety of that terrifying possibility. Then when things took a turn for the worse last Tuesday, Jared and I both received blessings that buoyed us up for the week to come. After that horrible low on Tuesday, I have been remarkably calm and able to face the things that have happened. I have basically lived here for the past week, and I do not feel like I am about to fall apart. How is this possible? A small miracle in my behalf.
Family: The love, concern, and support from my family has been a lifesaver. Even though they don't live in town, I have felt their willingness to do what ever I needed. Just knowing that there are that many people loving you and praying for you, is huge. And they also had a family fast which I know helped so much. The fact that they are taking such good care of Diana is so helpful. They even considered cancelling the reunion, if that would be best. I am glad that they didn't have to do that, but it was sweet to know that they would do that for me. And then when I was at my breaking point, they all let my mom leave them and come to Vegas to help me. I know that things are not the same there without their mom and grandma. Of course having my mom come, has been the biggest morale booster I could get.
Friends: Like I said in an earlier post, I am a friend freak. I am an extrovert and people help me recharge and cope with life's trials. My friends are awesome. The fact that they would read my blog and go to my house and do what needed to be done. Well there are not words for the way that makes me feel loved. Again everyone has been wonderful. And I have felt overwhelmed by every one's well wishes and prayers. How is this not going to have a good ending with so many people praying for our best? I know that these prayers have made a difference, especially in how well I am holding up. Rich is the person with so many friends.
Music: One particular morning when I was feeling exhausted and like I might not make it through the day, I turned the radio on, for the drive to the hospital. The radio was playing that Alanis Morrisette (sp) song about "The Arms of the Angels". This song reminded me how true this really is. I am sure that we have no idea how many angels are carrying us along each day. I have felt the presence of a loving Heavenly Father many times the past three weeks. The other happy thing, is my precious MP3 player. The ability to listen to music that helps me feel calm and peaceful has been invaluable. I think that Brigham Young once said "There will be no music in Hell." Well that would pretty much be my definition of Hell. It is one of the biggest blessings in my life.
Miracles: I am sure that I have no idea how many tiny miracles the Lord has blessed me with in these past twenty one days. It would not surprise me find out in the next life, that there were numerous times the Lord intervened on my behalf, whether it was helping me get a parking spot, or having the right doctor or nurse at the right time. I know that he has carried me through these past three weeks. For that I will be eternally grateful.
So these are just a few of the reasons that I know I have reason to be grateful. Recording them will help me to remember and not forget to be grateful. I know my Heavenly Father lives and loves me. I know the Saviour will help me carry my burdens, even though sometimes it is on his time table not mine. Another blessing, I suppose would be the opportunity to bend my will to my Father's.
Sometimes, remember is the most important word in the dictionary.
Top Ten Reasons it is Good to Spend 21 Days in the Hospital
The heat of Las Vegas is not so bad when you spend 12 to 15 hours a day in air conditioning set to 70 degrees.
The cold temperatures give you a chance to wear your winter clothes, that have been in the back of the closet feeling neglected.
Weight loss due to stress and horrible hospital food.
Free training on medical machines and how to silence their alarms.
Exhilarating opportunities to feel your heart race when playing chicken in the parking garage.
Plenty of time to watch movies you haven't seen before, like Dumb and Dumber.
Free fashionable hospital gowns with plenty of air flow.
Unlimited Popsicles and clean bedding.
Opportunity to test the strength of your body's immune system to random hospital infections.
Saturday, July 26, 2008
Saturday Update
Last night after some counseling/coaching/urging of friends and my mom, I did go home for the night. We didn't get home until almost ten. It is very hard to just fall into bed. You like to have some down time. I watched the end of Phych, which is one of my favorite shows. It wasn't quite the same with out the beginning, but something was better than nothing. Then I finally went to bed at 11. I have to admit to just lying there staring at the ceiling. For quit some time. And even more disappointing is that my bed did not even feel that much more comfortable than the cot at the hospital. Maybe that is a sign that our twenty year old mattress needs to be replaced. Then I had a nightmare last night and woke up and really though that I was at the hospital, and it took me a minute to realize I was actually at home. So yeah I am not really thinking that it was that much better. So tonight, I am back at the hospital. This time I have my pajamas, which is the happiest thing ever.
The orthopedic surgeon came in today and talked to my mom since I wasn't here. He said the wound in looking pretty good. But even though the blood markers show the inflammation coming down, it is not coming down as fast as he would like it too. I am not really sure what he wants to do about that. I think that it is just more waiting and watching.
The two questions I am getting most tired of hearing are: How did this happen? and When are you coming home? Apparently they do not teach Divination in medical school, although I would like to recommend that they do. I don't care if you left your crystal ball at home, I need answers. I think that we will never really know how this happened. Just one of life's little mysteries.
One of my jobs is to help keep track of Jared's fluid intake and output. He has a measured water glass so keep track of what is going in and he has a measured urinal, to keep track of what is going out. To be honest it is kind of hard to track how much he takes in because he drinks so much, so often. But since I am usually the one who empties his urinal, because he has to use it again before the nurses get around to it, I am keeping track of that. We have a little chart, one side says output and the other input. Honestly, since Jared is having no problem with this, I do not take it that seriously. I have decided that it will be fun to just record his output which is a couple thousand cc's every shift. Then maybe I put down that he drank 300 cc of fluids. This is my own private hospital practical jokery. HeHeHe! If they were paying that much attention, they might wonder where he is getting all the fluids, to pee like a race horse. And where did that saying come from, I don't know.
One nurse told me that she hopes that we will not be here when she comes back to work in four days. I myself have become an unbeliever, and have given up hope that we will ever leave. And you know I feel much better for it.
We have our fifth room mate now. I mentioned the first two. I wasn't here much with the second two and so I can't tell you anything interesting about them. Now we have a fifteen year old boy who was riding motor cycles in the desert and tried to jump a rock. He just got out of surgery on his leg. The parents think he will go home tomorrow, so dang we will be open for a new neighbor. This is only the second out of the five that I have really liked. I will not go into the judgemental details of why the other one were not that great, but they kind of gave me the creeps.
Well everyone else in this room are sleeping. So if I was to be unusually wise, I would join them. At least I did some physical labor today to help make me tired enough to sleep.
Just in case you are plagued with curiosity...
Motherless in Seattle
Here is one of them down at Salt Water park. My parents live about ten minutes from this fun park and beach. Not a beach like California, because Seattle has cold, freezing water, and rocky beaches. It is fun to look for crabs though.
I think a fitting caption for this picture would be "A barrel of monkeys" All the little kids having fun in Aunt Kris's hot tub. The only way to swim, when the high for the day is 69.
Wow, a purple Hannah Montana Shirt. How did you know purple is my favorite color? Thanks Grandma.
Diana with Laura, both in purple by the way.
Hey look, everyone went bowling for my birthday. How fun is that. Ali's piggy tails are uber cute. (I have been watching Project Runway too much)
My sister Jen made this cake for Diana. All I can say is she was better off without her mother, because she came out ahead on this deal. Thanks Jen for helping to make her birthday so special. And you have some serious cake skills, girl.
Really she is not motherless, as she has my three sisters, and two SILs to help her function in life. A huge THANK YOU to all of you! I know that even though she is old enough to be fairly self sufficient, she still needs some help.
So from all I can tell it is going very well. It is a huge relief to know she is having fun, and to not be in charge of that fun, but I am missing her. We have never been apart this long before. She is scheduled to come home next Wednesday.
TMI with pictures
Just in case you are squeamish or eating your breakfast right now, I will put the picture down on the post aways. So just be warned and do not scroll down unless you enjoy this kind of stuff.
See I warned you. And still no cute pictures of Jared, so this will have to do.
Friday, July 25, 2008
Life is Strange
I guess sometimes life just likes to pull the carpet out from under us and run away shrieking hysterically, while our head hits the pavement. That is what happened to me on Tuesday. Talk about 180 turn around from expectations. To show up at the hospital ready to take Jared home, and then have everything change and be sitting in the surgery waiting room at twelve thirty that night. Well to say it was unexpected would be an understatement. After the initial shock, I seem to be coping reasonably well.
While waiting for Jared to come out of surgery, I read the USA today that was sitting on the table. Apparently the rest of the world is continuing to function. This reminds me of the time when Marion's dad passed away. It was the December of that awful Tsunami in Thailand. I honestly missed the whole thing. We did not turn on the TV for over a week. It was a couple weeks later at the orthodontist that I read about the horrible devastation. I was shocked that something like that could happen and I would not have even heard of it.
So while waiting to find out the fate of my son, I read things like this:
Fish pedicures pamper flaky feet
"A pedicure in which dozens of tiny, toothless carp nibble away the flaky dead skin on your feet is the latest in unusual spa treatments. John Ho and his wife, Yvonne Le, say they began offering the treatment four months ago at the Yvonne Hair and Nails salon in Alexandria, VA. Traditionally, a rough instrument is used to scrape off dead skin. The garra rufa fish, also known as doctor fish is used in the procedure that originated in Turkey and has become popular in some Asian countries. It costs $35 for 15 minutes, $50 for $30."
I had to read this article twice. Are you kidding me? People pay to have fish nibble at their feet. EEEWWW! I don't get it. What. The. Heck. Doctor Suess's next book: One Fish, Two Fish, Red Fish, Blue Fish, These fish wear coats of fur, These fish give a pedicure.
Another thing I don't get around here, is how many health care professionals smoke. What is up with that? You would think that seeing first hand the results of smoking, (ie emphysema, stokes, heart attacks, cancer) well, I would think that might help deter someone. I guess I just don't understand the addiction. It seems very sad to me. And when you have nurses who smoke, well they just have to take more breaks, than nurses who don't smoke. I am not very impressed with that.
I miss all my friends in the PICU. It is hard to have to start over and make new friends. Yesterday, I was pretty much determined not to do it. But now that it looks like we will be here so long, I guess it will happen anyway. Because lets face it, I am not really capable of not making friends. I am just a freak that way. A friend freak is good, right. (kind of like 'death by pirates is good' What movie is that from?) So I guess I should just embrace it.
We have the same day nurse today that we had yesterday, and she will be here tomorrow. She seems even more confident today. She is so cute and is from Louisiana. She has the sweetest accent. She discovered that one of the ports on Jared's pic line is clogged. This improves my opinion of her. And we are getting to know her better, which makes me feel better. I wonder if she was ever in a pageant, she is that pretty with dark hair and creamy white skin. Think Snow White is hot pink scrubs. Gosh, it sounds like I have a crush on her, which is not the case, I am just bored and looking for things to write about.
Our nurse last night was very competent. She will be here again tonight. I actually found some of Trent's ear plugs in the car and finally managed to crash last night about 11:30. Jared was calling to me at 12:30 that he needed his ice pack refilled with ice. Finally when I didn't respond after he threw the ice pack at me, he had to call me on the phone. I had my phone on vibrate and so that woke me up. I walked down the hall, blurry eyed and got the ice. Then I went back to sleep and slept through all the 4 am vitals and IV antibiotics. Then he called me again at 6:30 am to get him some pain pills. I am not sure why he doesn't just buzz for the nurse. Now that I am awake I will discuss that with him. In a half awake state I just did what I had to do to make him stop bugging me and let me go back to sleep. Then I slept til 8:30. I am not sure if I am going to stay again tonight, but if I do maybe I will turn my phone off. :)
We had a roommate when we first got here on Wed night. He got to go home about noon on Thursday. Then we got a new roommate last night about 9:30. The first kid had a collapsed lung and was in the room next to us in the PICU for 2 days. The mom said that the reason his lung collapsed was just that it happens some times to kids that are tall and skinny. Who knew that was something to lie awake worrying about when you have a tall and skinny kid. Note to self: add that to list of things to lie awake and worry about.
Our second room mate was pushed down by his brother and he landed on a pencil. Yep, it was an puncture wound to his behind. Impaled on a pencil, not good. That sounds horribly painful. But apparently you can recover from it OK, because he just left after lunch. I guess they just wanted to watch him over night. So it will be interesting/frightening to see who our next room mate will be. Some times it is slow on the weekends and maybe we won't get anyone. That would be nice. Jared did have a fun time playing game cube with this kid this morning. I saw him smile more in a few hours than he had the past few weeks. Good to see.
The doctors just came in and said that his blood work from last night came back looking good. They were looking for inflammation markers and they were down from the blood sample earlier in the week.
Here is a picture of the wall next to his bed, with the cards that my family made in Seattle and my mom brought to him. They definitely put a smile on his face.
The hardest part right now, is making Jared do the things he is suppose to do. For instance sit in a chair three times a day. Kind of like time out but for recovering sick people. It helps your lungs and muscles when you sit upright. The other thing is walking around in the halls. Today he had a hard time walking as far as he did yesterday. And last of all the most torturous thing for him is laying on his stomach to make the wound drain. He has an open hole on his hip a little larger than a quarter. It is pretty gross looking, but Jared said I could take a picture of it the next time they change the dressing. Sure no pictures of him looking better and having fun playing video games with his room mate, but oozing, open holes in his body, no problem. At one point he and his room mate raised their beds up as high as they would go. Here they were about four feet in the air playing video games. The nurse came in and had a fit. "Lower those beds, what if you fall out". Stupid, fun, sucking, liability lawyers. A kid is stuck in bed for three weeks, what else is he going to do for fun?
In retrospect I have come to realize that even though this is his fifth surgery, the previous four happened while he was still sedated. So this is his first surgery that he is feeling the pain of recovery. It hasn't been particularly pleasant because go figure it is hard to be a kind, calm, cooperative fourteen year old boy when you are in excruciating pain. And lets face it fourteen year old boys aren't that kind, calm, or cooperative to begin with, so adding pain is not a good plan.
After lunch we convinced him to sit on the edge of the bed for fifteen minutes and then he laid back down and fell asleep. At this point my mom said "Leave and don't come back for a while". I felt as though I had just been paroled. FREEDOM is a beautiful thing that I have taken for granted far too much.
So I drove right to my hair cutting place and got a much needed hair cut. It felt so good to have someone pampering me, I almost fell asleep. It was over far too quickly. This is when life decided I needed a kick in the teeth, or maybe a wedgie just for good measure. My debit card was not in my purse. It is a Visa card and this is the only credit card they would accept. First I went through everything in my purse at the counter. Then I sat on a chair and emptied my whole purse looking frantically and feeling anxiety filling my whole body. Nope. Nothing. Nada. It was at this point that I remembered the last time I used it was on Wednesday night on my way to the airport to pick up my mom. I stopped by the bank and made a deposit at the ATM. The only thing I can figure out is that I left the card in the machine and just drove off after it took my deposit. I am so distracted that it is totally conceivable as an explanation.
After the airport, we went right to the hospital Wednesday night and I haven't left that place since then, so it had to be at the bank. I called the bank, they told me that cards in the machine are shredded. So this is most likely the case. I next called my bank (which is in Utah, so not the same bank that I made the deposit at) to see if there were any unauthorized purchases on my account. Guess what? Their computers were down and so they could not look at my account. Well, isn't that just special. Not only that they could not cancel my card and send me a new one until the computers come back up. Well that's one way to limit my spending, but it doesn't reassure me that someone has not emptied my account. Geez, life, I know that I am bending over in an irresistible way, but did you have to kick me in the pants like that?
So my nice relaxing haircut turned into another chance for an anxiety attack/nervous break down. Good news, when they take me to the mental hospital, my hair will look cute.
Thursday, July 24, 2008
Thursday Night
The ID Doctor which stands for infectious desease doctor, said that Jared is already getting the right antibiotics. He also said that he recommends the same time frame that we were already planning on for the IV. That will be three weeks of IV antibotics and then three more weeks of oral antibiotics. So the longer we are here, the shorter the time will be that we have to do the IV at home.
I am not overly impressed with the pediatrics ward. The best thing is definitely the chair that folds out into a bed. Not only is it pretty good for sleeping, but it is fairly comfortable to sit in during the day. Between the two of us, we have accumulated about ten pillows. I lined this bed with all of them and made it more comfortable. I think it helped that I was pretty much exhausted. Since Tuesday morning at eight thirty, I have only been home for a seven hour break. I feel remarkable rested despite this fact.
One of the problems with the pediatric ward is that the nurses are not as available. In the PICU the nurse had 3 patients, now the nurse has 6. Also today we had a nurse who was on her second day. Although she was sweet and cute as a button, I think I knew more about what should be happening that she did. It did not give me that feeling of security that all would be well if I left my child.
Also no one over here understands or knows Jared's history. He does have a report, but it is literally three inches thick, so it is not a short read. So I keep repeating the whole thing, over and over, and over. We had a nurse last night, a different nurse today, and yet another one tonight. It just makes me nervous and because of that I keep staying here and not leaving. My mom was here with us this afternoon and so she now has a feel for how things should be. So maybe tomorrow I can feel confident enough to go home for a little bit.
All in all we can't complain.
Wednesday, July 23, 2008
Wednesday Night
This is such a blessing that it happened during the summer when he has time to be sick in the hospital.
Also he has moved out of ICU and into the regular pediatric ward. It is a bigger room and there is a small fold out chair for me. I am staying with him tonight in this new place.
My mom did arrive tonight at eight as scheduled. Happy Day! We went right to the hospital and got here just in time to help with the moving process. Then my mom went home with Marion. She drove my car home and that was when she comes back we can switch and I can go home and get some rest. I think this is going to work out well. Maybe tomorrow we will find out some guess as to how long we might be here. But actually we are back to people laughing at us when we ask that question.
So even if it is not the case, I feel like I am in such a better place than I was yesterday. I went home at noon today and did not come back until nine o'clock tonight. It was a much needed break. I got a nap and a shower. Hallelujah!
The Calvary is Coming!
Day 17 of our Incarceration
He said that he found more puss in there than he wanted to fine. He is now concerned that the infection could have spread into his hip bone. If that is the case, then they will do a procedure where they drill a hole in his bone and drain the infection out. This is where it was good that I was sitting down, because I almost passed out. That may have had something to do with the fact that I had been here that day for 17 hours, but probably not.
Next he took me back to Jared where I put on my mask of "Everything is just fine", while inside I was screaming at the top of my lugs. Jared woke up well, but he was in a lot of pain. The doctor left the incision open to drain. It just has one stitch across the middle of the wound and one stitch holding the drain in place. Finally it was so happy to let Jared have something to drink. By then it was 1:30 am and I felt too tired and upset to drive home. They let me sleep in the quiet room. Sleep might be over stating it. I laid in the nice, soft, dark room for a while. I did eventually give into the exhaustion and drift off to sleep, but I have to say I had nightmares.
I woke up this morning at 7:00 am to a knock on the door for me to sign the consent for the MRI. I tried to go back to sleep, but that wasn't really happening. My phone was dead because of course I took my charger home the day before. Then they came back and said that Jared wanted me to come with him. So I got up and went with him to the MRI.
One doctor said that there was nothing obvious on the MRI, but the orthopedic surgeon needs to read it to be sure. So maybe I am worrying for nothing.
Later today there are going to move us over to the regular pediatric ward. He does not to be in the PICU anymore. We are both sad and nervous about this. We will miss all our friends. Who will our room mate be. I have heard that there are better chairs for the parents over there. I hate change, but oh well what can we do.
So there is no way to say how long we will be here. We need that hip to stop draining. And there is no way to know when that will be. My guess is at least another week.
I am headed home to get some sleep and then come back. I don't remember that last time I was this tired. I don't know if any of this even makes any sense. Yesterday I gave the wrong name as I was trying to enter the PICU. That is how tired I am, I literally can't remember my own name,
Tuesday, July 22, 2008
Breaking Up Is Hard to Do
We are trying to take this in stride, but I would be lying if I said I was not disappointed/distraught/despondant to not be at home this afternoon taking a nap in my own bed. Jared is worried about having another drain put in his hip, because it hurt pretty bad when they took the last drain out. I suppose this is another opportunity for me to work on my weakness of lack of patience. I love the quote that says, "I don't mind being schooled in the hard knocks of life, it is just these refresher courses, I could do without." Yea pretty much. But I suppose I should just look at it an "opportunity for growth." Sad thing is I was pretty much content being small, who wants growth anyway. I think growth is highly overrated. I guess sometimes we get mandatory growth, whether we want it or not. Dang.
It was about 11 when they decided that he would be having surgery tonight. That means NPO, no food or drink by mouth. I know the initials don't match. Apparently NPO is Latin for starvation. Anyway, Jared had not really ordered lunch because we were suppose to be leaving then, so I asked him want did he want for his last meal. He said chicken quesedillas from Taco Bell. The doctor said he could still eat until noon.
With the clock ticking, I hurried to Taco Bell. I was worried how would I ever find a parking spot when I got back. Especially when someone was waiting to take mine as I left. I made it there and miraculously there was not a line. I also got something for me and some strawberry freezes. Those are quite delightful if you have not tried them. Then I raced back to the hospital. And with a prayer in my heart as drove in, I actually found a place. Another miracle. Jared had called me when I was on my way back and said that the nurse was not going to let him eat. I assured him that I would make it OK when I got back. And sure enough I talked them into letting him eat. They said he had 33 minutes and to make the most of it. Just like a hoard of locust, he wolfed down both of his quesedilla and downed his fruit drink in about 10 minutes.
Now the rest of the afternoon will be spent waiting for tonight. I think Marion and the Bishop are going to come down and give Jared and I another blessing. There is some debate as to whether or not I ever got a blessing to begin with. Marion thinks I did, but I can't remember it. Probably the fact that you can't remember it, is a sign that you are due for another one.
So other than the shooting, Mrs. Lincoln, how was the play? Yea that pretty much sums up the day, but we are hanging in there and it is best that they get this resolved before we leave. I think it would be worse to leave and then have to come back.
Monday, July 21, 2008
Monday Night
He does still have one open wound that is draining quite a bit of stuff from it. They cultured it today and no new bacteria are growing so that is very good. He has to lay on his stomach three times a day to let gravity help with the draining. Then the dressing needs to be changed. I did that tonight by myself for the first time. So now I can do that.
I miss spoke or wrote earlier when I said that his antibiotic is every 8 hours, it is really every six hours, four times a day. So that would be midnight, 6 am, noon, and 6 pm. Gosh it will almost be like a nursing baby. But the good news will be that it is only for 9 days.
The other shocking news for the day is that Jared has lost 15 pounds. He is down to 136 pounds. He did not have 15 pounds of fat to loose, so it has to be muscle. That might explain why he seems so frail and has a hard time getting around. So one mission will be to fatten him back up. Each day he will get stronger and stronger. That is the goal.
My part will be to transform from the pushover mother into the drill sargent mother who can push him to be all that he can be. Actually one nurse called it lovely pulling. So let's think of it in that terms. Still let me tell you it is hard to watch your baby that almost died, be pushed or pulled or poked for that matter. I just have to keep telling myself that it is for his good. Just like when you get your kids immunized and feel like you need oxygen afterwards. Yea like that.
A BIG BIG BIG thank you to all who came to my aid today. Whether it was just a note of encouragement on this blog, a phone call, cleaning my house, a visit to the hospital, a frosty delivery, or two dinners delivered, well what can I say. I was reminded of how much I am loved. Must have forgotton for a minute. It was kind of like that final scene in It's a Wonderful Life when everyone came and helped Jimmy Stewart know that he was not alone. Yea it was that kind of a moment. Words will never suffice to say thank you, but THANK YOU to all even if it was a prayer in my behalf. Everyone gets a big gold star and lots of brownie points in heaven!!!!
So now I am going to head home from the hospital and it is only 9:30. And I will have some wonderful food waiting for me there. Hip Hip Hooray!
The Troops have mobilized
Thanks everyone for your help. Sorry I waited so long to ask for help.
Sunday, July 20, 2008
It's My Blog and I'll Cry if I want too
Ok, for two weeks now, you have all been reading my posts all chuck full with my all positive outlook. "Look how well she is doing, isn't she amazing." People keep asking me "What can I do?" And me with my stupid self reliance keep answering "Nothing, every thing's fine". Well just for the record, everything is not fine.
Ants are circling my house trying to invade. Think Custer's last stand or Clone Wars. There seem to be about a billion of those darn things. Each day I find that they have made a small breakthrough. The other day a chair of mine was completely crawling with the little buggers. I had recovered it, but it is well worn again. I tried moving the chair out onto the patio, but it wouldn't fit through the door. Finally I just cut the cover off and wrapped those little guys up and put them on my patio table and left for the hospital. I am tired of sitting at my computer and feeling an ant crawl up my leg. Tonight when I got home I found an ant on the toilet paper, is nothing sacred.
My pool has turned green and algae in growing like crazy.
The grass in my back yard is getting pretty tall, since Jared is the one who usually mows it.
My kitchen floor needed to be mopped about three weeks ago. Now maybe I should just pour gasoline on it and light a match.
All my bathrooms need cleaning terribly. That is they look terrible and need a good cleaning.
After seventeen years my vacuum decided to kick the bucket. I meant to go and get a new one at the Fourth of July sale at Sears, but since we were in the midst of a medical situation, I never made it there. So I can't really vacuum even if I was inclined to do so. But let's face it when I get home from 12 - 15 hours of being at the hospital, vacuuming is not really at the top of my list.
Trent just asked what he could eat and I said pretty much nothing that doesn't come from a can, because I haven't been to the store for two weeks.
I am exhausted, physically, emotionally, and mentally. I am living on instant breakfast, emergen C, and food picked off of Jared's tray.
My electric bill just came and it is $575. Add this to a $200 water bill and pending hospital bills and well Holy bankruptcy batman!
Then there is the daunting task of nursing Jared back to full functioning. He will need his antibiotics every eight hours, so that will be fun. Especially for a person who has never managed to give their kid all of their oral antibiotics in the past. Life is just too busy. Perhaps if I just cancel everything and sit by his bed like i have been it will be ok, but that seem a teeny tiny unrealistic, even unhealthy. I have got to push him to do more for himself each day so that he will regain his old physical stamina.
Then there is the possibility of long term damage. Were any of his internal organs permanently damaged? No one has said, but maybe they don't want to worry me. Will his hip be OK. What about his heart. There are still plenty of things to worry about.
And to make matters worse we are missing all the fun of our family reunion, which I paid for our plane tickets by the way. Obviously I would rather both Jared and I be there in Seattle, than chained to a hospital and medical procedures.
None of these situations are permanent or life threatening. All things will be resolved in a happy ending I am sure. I know that everything will work out. The scriptures say that it came to pass not came to stay. I do believe all these things, right now I just need to vent. I'm having my Liberty Jail moment, and I don't think this comes anywhere close to that, just similar in frustrations. If I endure for a moment he will reward me on high. But also when Mary and Martha cried when Lazarus died, Jesus cried with them, even though he knew all would be well when he raised Lazarus from the dead. This is one of my favorite scripture stories. And so maybe this is one of those times I just need to cry and whine.
What I really need is not people to ask me what I need. Obviously I am incapable of actually telling others that I need anything. Please just come to my house, break in, and do anything that looks like it needs doing. I know this is lame. I should at least be responsible enough to be able to ask for help. But right now I can't. And I am not saying that my RS president has not been great about checking in with me and seeing how things are going, because she has. It is just me and my dang denial that I need help.
So this is my cry for help.
Ok, freak out over, I will now return to my abnormal self, with the mask of competency and faith I always wear. Nothing more to see. Move along people.
The Best Medicine
I doubt that this life is very different from that. We all need friends to survive, even better thrive.
Today Jared received a visit from several friends. I think that visit did more to cheer him up and make him feel better, than any medicine he has received in the past few days. It is so easy to feel isolated from the outside world. It is kind of surreal to try and remember the life you had before this illness started. So it is good to remember that life will get normal again, and that you have friends waiting eagerly for your return.
If any of Jared's friends read this, text him and let him know that you are thinking of him. If any of my friends read this, please, please leave me a comment. I'm feeling a bit isolated myself.
Sunday Update
I have to admit to feeling a bit nervous about him coming home. Of course it will be great to not be driving back and forth to the hospital. But I am a bit concerned about being in charge totally of his care. What if I don't do something right? It feels a bit overwhelming. Of course this is probably due to the fact that I am overly exhausted. Anyway I am sure that will all be OK.
So we may come home tomorrow or Tuesday, or maybe even Wednesday. I think studies show that people heal better and faster at home. I can understand how with the food here.
Saturday, July 19, 2008
Random thoughts about ....
I took this picture the first night we were here. I thought it was a bit absurd that they would need to post this notice. First of all, if someone is so distraught about their kid that they are going to assault a doctor, do you really think this sign is going to stop them? And second of all why would you hurt the people who are trying to save your child's life? But I can understand how these situations can put you out of your right mind. Here again if you have lost the ability for rational thought, I am not sure a sign is going to help. How about a vending machine with Valium in the waiting room?
The Bathroom: In order to go to the bathroom, I have to leave the PICU which I hate. Then the bathroom that we get to use, is for both men/women, so you have to be sure to lock the door, so a man doesn't end up in the stall next to you. Yikes. But that also means that it is kind of like your bathroom at home, where perhaps some man has left the seat up, or worse. Nuff said. Then the toilets are auto flushers, so if you are not quick enough, it flushes your seat protector away. Probably TMI. (too much info) Also I am not impressed with the cleaning crew. One day the paper towels were empty all day long. Not pleasant. The next day the soap dispenser was empty all day. Finally I complained to the nurses station and they said they will tell housekeeping. I don't think I should have waited that long. This hospital is old and everything about it is old. So I guess I should be grateful, it is not an out house.
Waiting to get in: Every time you want to enter the PICU, you have to dial the phone on the wall by the door and ask if you can come in. Sometimes if they are doing something to Jared, they will tell me to wait. I hate the thought of being locked away from my child. It hasn't happened very often, but there is always the possibility and I hate it. I understand it, but don't like it all the same. It is necessary for security. It is sad to say, but some of these kids in here, are here because of their parents. Of course you wouldn't want those people let in. One of the kids that came in after Jared had been in a bad car accident and both of his eyes were swollen. His grandma told me that his mom had abandoned him a year earlier, and so she was not to be allowed in to see him under any circumstances. After being here for a week, most of the nurses know me. There is a camera so they can see who is waiting to come in. So sometimes they just buzz me right in. The first time this happened I wondered if they had ESP or something. Since I am here so much, I told them that they should just get me my own card to swipe.
The Parking Garage: The good news is that the parking garage is attached to the hospital. The bad news is that very often it is difficult to find an empty spot. One day last week I drove around for twenty minutes before I finally saw someone leaving and then I stalked them to their car and got the place. I am surprised that fights don't break out there, because of frantic parents wanting to get in to see their sick kids and there just not being enough places. It does depend on the time of day. Strangely enough at midnight there are plenty of spaces, just not at 10:00 am. The other problem I have is that after being at the hospital all day long, I have to think really hard to remember where I parked. It is so hard when you park somewhere different each day and I am so exhausted I barely know my name. And we have to remember that I was already challenged in the department of finding my parked car. I was telling my sister about this yesterday, and she suggested that I leave myself a voice mail. That sounds like a good idea. So far I have managed to finally pull the info from my brain somehow.
The Ice Machine: This is the one bright spot in life here. They have one of those ice machines that creates small, snow like ice cubes. I don't know how I was here for three days before I was introduced to this small luxury. I love soft ice like this. And it is nice to be able to drink cold water or pour the drink that comes in my sack lunch over ice. It's a good thing!
Watching Other Patients Come and Go: I know that there is no rule that says that other kids need to be sick longer than Jared, but it does get discouraging when you see kids come in after him and go home before. I would say that there is only one other girl who has been here longer than us. She fell out of a second story window and has been here for a month. Yikes. How awful. I feel like the professional ICU parent. Maybe I could start giving orienteering classes. You see other parents go through the same process you went through. The dazed look on their faces of shock, fear, and disbelief. Then the exhaustion sets in, and you see parents curled up sleeping in chairs. Then when things start to get better, you see parents walking around the circle with their kids or pushing them in a wheel chair. And then finally the joy and exultation of the day they are going home and free from this awful prison of pain, uncertainty, and worst of all no control.
The Air Conditioning: I am sure it comes as no surprise to find out that I am freezing to death here. Sadly my chair sits right under the air conditioning vent. I do have my blanket and sweater that I leave here each night. Also I always dress in long pants and shoes and socks so that I can be a little bit warmer. Wearing shoes all the time would be my other complaint. I hate it and am not at all used to it. Sometimes I go around in my socks for a little break.
Machines and Numbers: I have become immune to the alarms that go off when an IV finishes. And even the alarms that go off when his oxygen, heart rate, or blood pressure drop, no longer take my breath away. The first time I was there when an alarm sounded, I started to feel light headed and realized that I had stopped breathing. I will miss the reassurance that comes from looking at the monitor and seeing that all is well. Once they took the central line out, we no longer have a constant blood pressure reading. Instead he has a cuff that takes his blood pressure every half hour or so. I just miss that constant info. I have always said that it would be ideal if babies came with a small computer screen on their foreheads so that we could know what is going on, that could include all the numbers on their vitals just for reassurance.
The smell: What can you say, there is something indescribable about the smell of a hospital. Take antiseptics, a teenage boy who hasn't showered in two weeks, and different medicines. Well it has its own uniqueness. Jared has had several sponge baths, but it is not the same as a shower. TMI again, I am sure.
Well I think that is all I can think of right now. I would love to hear of anyone else's memories of being in the hospital with a child.
Happy Birthday Diana!
Here is my birthday tribute to Diana. She is celebrating in Seattle today with her grandparents, uncles, aunts, and cousins. I think I heard they were going bowling. Diana you are such a blessing in my life. I love you very much. Have a great day!
Friday, July 18, 2008
Doctor Magic
One of the bright spots of yesterday, was a visit from Doctor Magic and Mrs Magic. This is a couple who volunteer at the hospital a couple times a month. They go around and visit all the kids. Do some fun magic and get a few smiles out of the kids. He even taught Jared how to do one of the tricks he did and gave him the cards to do it with. I am pretty sure that this gentleman is disabled, because he goes around on a rolling chair. What a good example of giving service, even when you are not 100% your self. I love this picture because first of all Jared agreed willingly for it and second of all it does show just how far he has come.
Thursday, July 17, 2008
Thursday Update
It is amazing how fast you loose all your muscle control when you lie in a bed for a week. So he still needs a lot of help. Today was a hard emotional day. It is hard to have so little control over your life. He is way bummed that he has to miss everything in Seattle, and I don't blame him. It is a bummer. It pretty much stinks to spend weeks of your summer vacation sick in bed with people torturing you with needles and waking you up every time you go to sleep.
We are doing all we can to make this as easy as possible, but it has just been a hard day. So we will just keep going and getting stronger every day. They are saying that we may go home early next week. So we will keep hoping and working towards that goal.
Wednesday, July 16, 2008
Flying Solo
Still waiting. This was the longest line we waited in, though it was probably only 15 minutes. I hate that Alaska has to start with "A". Darn for alphabeticalness of the ticketing counters, meaning we had to walk about a mile to stand in this line. Here is the full shot with her suitcase.
Here she is at the gate, with the special sticker that identifies her as an unaccompanied minor. We made our way through security and out to the gate. We talked to the airline worker about if she could sit by herself. She was very nervous about who might sit next to her. It ended up that they moved her to the last row of the plane and she got her wish and was all alone. After we changed her seat, they said to go over to the door. Before I knew it they were ready to take her on the plane. It was over so fast. And for the second time in two weeks I watched one of my children taken where I could not follow. While this was not as scary as watching a child wheeled into surgery, I was shaken a bit nonetheless.
There was a very nice man who walked her onto the plane. He even offered to take my camera on and take a picture of her. So here she is all ready for her adventure.
She called to tell me that everything went well and she was safe with Grandma and Grandpa. That was a big relief. So she is off having lot of fun in Seattle.
Wednesday Update
My work is beginning as there is still much he can not do for him self. I will not be bored as I take up my nursing duties, but it will be a good busy.
I wanted very much to take a picture of Jared, but he will not let me so you may not get to see how good he is doing.
Tuesday, July 15, 2008
More Good News!!!!!!!!!!!!
Lastest Photo Shoot
I am home for the afternoon to help Diana get ready to go on the plane to Seattle tonight. She is almost packed and so we just have to wait until it is time to go. I can't believe how relieved I feel. Jared's vitals are looking very good and his latest blood gas that was done after he took the tube out, looked beautiful. The nurse's word not mine. :)_
Tuesday Morning
Yesterday they drew some blood and took it to the nuclear lab. They spun the blood around and separated out the white blood cells. Then they put the radio active dye into the white blood cells. Last night at 9 they put the tagged blood back into Jared. Then they have to wait for 24 hours for the white blood cells to go to the infected area. So tonight at 9 they will look to see where he lights.
The other good news is that the heart test they did yesterday look good. So that is a huge relief that his heart is OK. I think that I was so tired yesterday that I let my self get discouraged and imagine the worst. Sorry if I worried anyone else.
So this is very happy news. I took a new picture of him with out the tube, but I will not be able to post it until I go home tonight.
Thanks again for every one's love and support.
Monday, July 14, 2008
Monday Update
So Jared had a pretty good night last night. About 3 am they had to give him some more sedation because he was getting upset about the tube going down his throat. So when I called at 6 am, they told me he was sleeping soundly and I went back to sleep.
Diana and I got up at eight and took care of a few things around here. Then we got gas and went to Wal Mart to get a few more things she needed for her trip to Seattle. We also got some balloons for Jared's room. I want it to feel cheery for him when he wakes up all the way.
Diana and I then headed to the hospital. Jared was asleep most of the time we were there. He woke up now and then, but he would go right to sleep. One time he did manage to cough up a huge mass of stuff out of his chest. They said that his chest X-ray was mildly improved from yesterday.
Our friend Cathy did an activity with Diana where she made two dolls. One is dressed and looks like Jared and the other one looks like Diana. That way the Diana doll can stay with Jared, and Diana can take the Jared doll to Seattle. I can see the cousins having fun with the Jared doll, maybe they will have to take pictures of the doll at all the fun activities. You can also see the card that Diana made for Jared taped to the wall.
The doctors are doing two new tests to Jared. One he had this afternoon where they put the scope down his chest tube and took a picture of his heart from the back. They want to be sure that the infection has not gone into his heart. I will not know the results of that test until tomorrow. It sounds kind of scary. I am trying to keep up the faith that it is not that. Please do not tell me that he will need heart surgery on top of everything else. I think I am so tired I am over reacting. No one has even breathed a word about heart surgery.
The other thing they are worried about is that the infection is still showing up in his blood. I think that after a week of antibiotics, they should not see it. I am not sure of that fact though. So to check for infection in other places in his body they will do another test. In this test they will take some blood out of his body and then inject it with dye. Then they put the blood back into his body and the white blood cells that are tagged with go to where the infection is. That way when they do the CT scan the infected areas will light up. Hopefully, it will only be his right hip that shows infection. So we should know some more things tomorrow. Also the doctor does hope to take the tube out tomorrow. So hopefully it will be a good day.
I am actually at home this evening. I feel really exhausted and need to catch a little break. Also I need to check everything that Diana has packed for herself to see if she has everything. Her activity day leader has taken her to dinner and a movie with her four year old grand daughter. Then I think Diana will spend the night with them. The activity day girls are going to see the Mormon Fort tomorrow morning, so she will be there already for that. Trent and I get to go to court again in the morning, this time for Trent. That appointment is at 9:00 am. Ouch, I better go to bed early tonight. Marion is gone helping a friend with a plumbing problem. So it is blissfully quiet here right now. I just want to get through tomorrow. Get some good results, have Jared's tube come out, and get Diana on the plane. Then if I want to I can stay at the hospital 24/7, there will be no reason to come home. Oh, unless I want some decent food and rest.