Doesn't Hurt to Ask Questions

Putting Rhen to bed last night...

Rhen, "dad, can I have some more milk?"
me, "Sorry no, you'll pee the bed if you drink too much before sleep."

Rhen thinking...
"Dad, when i am done with this milk... If i cry really bad for a while will you get me some more milk?"

chuckling, "No, sorry buddy. No more milk tonight."

"but Dad?!"

Rhen, calm and with reasoned determination, "Well, when you were gone to wyNoming mommy gave me milk a little bit. But i wanted more so I cried really loud for long time and she got me more milk."

gotta love how the little ones figure out how to play their parents.

Threek

Tuesday was a 'mystery dinner' for activity days for Chloe. The location of the activity was a mystery so after driving around trying to find it, Chloe and I decided to have a dinner of our own instead. it was a fun date and Chloe was excited to tell me what a threek is, a fork with only 3 tines. As usual she was super hungry, but hardly ate. But it was just fun to hang out.

Stacie, The engine that could.

Stacie just ran the Ragnar this weekend with Spence, Josh, Jena, Chad, Nathan, Nicole, Melissa, Brett, Brian, Julia and Stacy. Most of you reading this probably know what the Ragnar is, but if you don't it's a relay race (188 miles or something) from Logan to Park City up and over all the mountains a long the way. She was nervous about it because she hasn't had a lot of time over the last few weeks to run hills. She had some really tough legs but ran it well. She was like a little choo-choo train plugging along at a very consistant pace no matter the incline. It was very impressive, but she won't admit it so I am.

Spence trained for 3 weeks and was pretty amazingly fast. He took the legs I planned on running before the nasty shin splints presented themselves. He did them better than I would have, and I was running for months beforehand. He has a natural gift for running I think. If you watch him run he looks completely comfortable like it's the easiest thing to run up a super steep hill. At one point after about 7 miles of running he grabbed a cold dewskie a bystander handed him and pounded it as he ran up a super steep incline. Classic Spence.

Everyone else did great as well. Six of us were in one car and the other 6 in another so we only had everyone together for a few minutes during the whole 2 days. Josh and Stacy were in the other car so I'm not sure how their legs went, but their team always showed up at the exchanges earlier than we planned. Sounds like they had a great time too.

My Perceptive Wife

For years now I have had this little "soul patch" as it were under my lower lip. It's a pretty subtle expression of manhood since I am not a hairy man and just about the only place whiskers grow on my face is just under my lip. Even there it's sketchy.

Back in January I shaved it off. Figured i'd go for clean shaven look to mix things up. Today, June 16th, while consuming a Turkey Pesto at Great Harvest in the mid afternoon Stac looks at me puzzled and says, "Why did you shave your patch, I liked that!"

too much, darling, too much (the incredibles)

Just because you get a diagnosis and get treated, does not mean you are free from worry and stress. We come home and I have to be the home nurse, give her the meds, flush her line and worry about why she isn't eating and looking pale. Saturday was a rough day for me.
So when we returned home for the hospital we got the delivery of her medicine for her line. There wasn't any heprin in the delivery so I had Jake run out in the pouring ran to stop the van and asked about it. He said the new lines now days don't need heprin, so she should be fine. In the back of my mind I thought, I still need heprin, I wasn't feeling comfortable without it (heprin is used after a saline flush, through the line, to lock the line so it won't get blocked. It has called heplock). I just went with what he said. We did fine until saturday. Jake was out of town to wyo (of coarse this has to be the case). I pushed and pushed, and no medicine would go in, and no blood would come when I pulled back (which is suppose to). I was frustrated. I called ICS at primary and they asked if I had done this and this, and I had done this and that. It was inevitable I had to call home health care. I have not had awesome experiences with IHC home health care, the politics that go into health and insurance at times is a joke, but I needed some heavy duty heprin to unblock this line.
When the medicines were delivered the night we got home from the hospital a nurse from home health called and wanted to show me the how to care for the line. I told her I knew all the procedures and wanted to save her the time and energy to come out to my house to show me what I already knew. Well one thing I had forgotten was that I had to jump through their hoops to get medical care. I wasn't reminded of that on this night, I was reminded on saturday morning.

I finally got a hold of the home health care on call nurse. I told her my situation and she explained to me that Chloe was not in their system, there is nothing she can do for me and I would need to go the the ER to get her meds started. I explained that I should be in the system because they gave me drugs and were delivered to my house. Again she told me she couldn't come out to help because Chloe was not entered as a currant patient. I was being denied health care? The ER is 200g's, plus every time we go there we are sent down to primary because they either don't know what to do, or that Chloe is just a special situation. I didn't want to go there. I called ICS again and told them the home health won't come to my house. Jake was gone, was I going to have to go down to primary, get it taken out, put a new one in? Leave my kids here? Was she seriously not going to come to my house to help me get the meds started?

I told ICS nurse about the heprin situation, and she said some lines still do need heprin and some are different and I needed the heprin. She called home health care while I was waiting and calling Jake letting him know and taking care of kids and trying to push the saline through her line, and nothing happening with her line. I got a call back after a few minutes from the on call nurse, I heard her typing and she said "OH there she is." But you told the nurse you didn't need her the night you got home from the hospital, you said you knew how to take care of the line. YOu have to be entered in and sign all our paperwork to get our services." OK, yes, I did say those things but in my defense (which I did not inform her of) when she got out of the hospital as a bone marrow patient and needed home health I didn't have to sign all the papers, I had forgotten it has been three years since I have used home health, and to be honest I hated to admit we needed it again.

We got things scheduled and she would come then ironically right after I got off the phone with her, I tried the line again and got the medicine to go through, but slowly.

To make a long story short (too late) the nurse finally came, did all the hour long paper work and went through all Chloe's medicine she wasn't on anymore (boy she was on a lot of stuff back then) pushed the heavy dose of heprin through, I waited two hours to settle and it works great now. Chloe is on the services of home health until she get her picc out, and I have heprin to flush it with. There is more stress to this story (little things going wrong) but if I listed it all this post would be too long.

Nothing is easy with five kids, but having this happen and doing it by myself was a little too much for me, but you can see from the picture her face is getting way better. I think she will have some scarring on her chin (bummer) but how much I am not sure. Her line is working and dressing was changed and now today I can breath.

ps my other kids didn't end up going to camp hobe because the form we need to fill out for them to attend asked specifically if they were exposed to chicken pox, and of coarse they have so I didn't want to risk going and being turned away, or exposing anyone else. Next year they will go.

the 411

While I was at the hospital I ran into one of Chloe's BMT doctors. She informed me that a lot of kids who take the medicine Acyclovir for an extended amount of time (which Chloe did, for two+ years) studies have shown that 6 months to a year after they have stopped taking them, they develop shingles (pretty ironic since Acyclovir is the drug to get rid of them). The doctor checked her chart and, sure enough, it is that time frame for Chloe . So that caused the shingles to break out and having a cord blood transplant, her new blood didn't realize her body already had the chicken pox, broke out when the shingles came. She had a pretty severe case I must say and that stinking infection wasn't helpful either. She got hit with three big whammies.
She feels lousy today, I can't get her to eat, the drugs make her stomach hurt and although the shingles are getting better they look like bloody scabs, so although it is getting better, it doesn't "look" better. I am hoping they don't scar. That would be another whammie, scarring on her face. Only time will tell I guess.

We would like to thank you again for all your prayers and thoughts on Chloe's behalf. We are very grateful for them and the comfort they brought to us when we were a little nervous about this crazy week we have had. I don't realize how stressed I feel until I get home, I've had a headache everyday since I got home and my body is worn out. So the prayers are much appreciated.

The good and the bad

The good...we are home!!

The bad....She can't go to camp hobe : (


She was really really sad when the doctor told her that. She has to be on iv antibiotics at home for 10 days and I think they do that at camp hobe. I think she will still be a contagious and we don't want to spread it to any immunosuppressant kiddo's. She will be able to go next year, but she wanted to go this year because her great friend Jocelyn is going to be a counselor. We were really done about it. Timing in life sometimes makes me wonder.

Funny thing, I posted the other day that I was so excited about Chloe wanting to do a craft, so I hurried and got something for her to do not thinking at all. Other ICS patients would not be able to use any of the crafts unless they were all cleaned. I choose beads, and took most all of them available so she could have a selection. Well we are now a proud owner of a crap load of beads. Our nurse said,"I don't wanna clean all those beads, why don't you just take them home." That is what we did.

So the good news...we don't have to buy beads for awhile

bad....we will be making book back chains, necklaces and bracelet and whatever else we can think of for a long time ; )
could be worse.


Good news...she got to sleep in her own bed

bad news...we have her space balls back for iv hook up every 8 hours, which brings us reminders of more stressful times.





Good news...her shingles are starting to scab

Bad news...they are starting to itch!


Bad news.... I forgot to hook her up after 8 hours like I was suppose to (shoot)

good news...we don't have to to a hook up at 3 am


I always need some down time when I get home from the hospital, I get into survival mode while at the hospital (be strong, be strong, it isn't that bad being in a small tiny room with a sick child and telling her she can't go to camp hobe, and telling her I don't know how long her face will look like that). When I get home, it all crashes down and makes me sad, so I mostly hibernate for a few days, and just breath.

day nine of the blasted virus

Talk of home today! We shall see after rounds, we are excited!




We will go home with a picc line for iv medicine at home and hopefully can take picc out on friday for oral meds. And if they are all crusted over, camp hobe on monday!

day 8 of this crazy virus= no fever!

No fever last night! Her swelling has improved, but her rash is still hanging on, not crusting over just yet. Bummer.

We had a good laugh and giggled at our movie last night. Clue. I loved the movie when I was little and makes me happy my kids like it too. And they quote their favorite lines just as I did. I have that movie memorized.

Here is a picture of her rash today. She is watching Tom and Jerry old school. It cracks me up, she likes the same movies now at ten that she did when she was four, five and six.


Last night Chloe asked me a great thing, "Mom, can I do a craft?" I say "Yes! You. Can!!" I know when she asks to do that she feels a lot better! I have tried over and over for her to do something other than lay around and watch TV. She didn't even want to paint the tech Tommy's fingernails! What little girl here doesn't want to put bright pink, orange or red paint on the guys fingernails here (ha ha)? One that doesn't feel good : (. However at nine last night she wanted to do a craft. It was a proud moment. I smiled big and went to rummage through and see what we could make. We ended up making these (below) to hang on her back pack for next year and her new school. She made three last night and just completed another!




The bad thing about getting a iphone off ebay and hacking into your service provider is if the battery dies you have to re hack it and I have no ability to do that. Last night I made sure it had enough juice (3/4 battery left) and this morning it was dead and now I have no phone. It is driving me crazy to be here with no connection with the outside world. Good thing I have a good ibook to read on the ipad. We are techno junkies! Have a good one today all who reads this and say a prayer for Chlo! Thanks

day 7 of this ridiculous virus

Showers fell so good!! Especially if you haven't had one in a few days, plus you have puss all over in it making your hair turn into dread locks. I convinced Chloe to take on this morning. She is pretty tipsy so we had a chair shower. The bath tub (which she would prefer) is communal so she can't use it. I washed and washed and washed her hair trying to get the dreads untangles but alas had to cut some off by the ear and hair line at her neck, we will have to get her hair styled after this is through.
She felt good after it and we put her hair in a braid away from the sores.

Although the sores look better, it is just taking forever for these buggars to crust over. The dermatologist was surprised when she saw they weren't scabbed over by now. Chloe's body just isn't like a normal kids, her body has gone through a lot and doesn't heel as fast. Her swelling has gone down a bit, but has a major headache today. The doctor finally came and answered some questions for me, I was a bit frustrated earlier when the dermatologist came and asked what the doctor thought, I said I don't know to all her questions. I wasn't told much by any of them (maybe I was told but it was Dr Lemons who was on this weekend and he could have told me answers, but his road runner mouth, and my slow brain, didn't mesh). A resident came in just now to help out with my questions and I don't feel as frustrated about it. I should be more frustrated with myself though, because I forget to ask the questions I have, the doctors would answer if I just had the right questions.

I am on a roller coaster of feelings. It is weird to be here, it feels like I have never left this place. But then I remember this will only be for a week or so and then we can go home. I stayed her for 2 months, I can handle it for 7 days. Then I look at her face and see how yucky it looks and feel sad. Like I said, roller coaster.

Tonight we plan to watch a little Clue and maybe even get some popcorn to go with it! Thanks Kins for the delivery!