Thank you Cache Valley!

Thursday, September 30, 2010

And we're back!

So Daddy had to wear a mask too and then Aiden could wear his. And we were so glad cause he kept it on all the way to the ICS unit. I think it is because Brent made sure that Aiden's monkey wore it in the crib the whole time we were at home. Smart daddy!
This is our nurse, Sally. We are doing all the basic getting settled, which of course includes vitals! We called last night and asked how early we needed to be here - if it was imparative that we be here at 8 am. They said that we could fudge the time a little and we took full advantage. So we got here after all the shift change business and it went super smooth getting everything settled and taken care of. Everything looks good and we got all hooked up to the cords and tubes.
Here is our picture board. As you can see we have lots of room left and we want to fill it up. We also have 3 cupboard doors that we can decorate so send us pictures and letters and stuff we can hang around the room. You will send it to Primary Children's Medical Center 100 North Mario Capecchi Dr. Salt Lake City, Utah 84113 Attn: Aiden Welsh. Aiden loves pictures so we would love to see more of them!
And here is our "suite" . As you can see from the pictures that follow...

Here is our couch and it even has a drawer! Sweet. It makes out into a twin and the back pad can be put on the floor is also relatively twin sized. Maybe I will take a picture of our couch as a bed :)

They tell us that in reality it isnt that much bigger but it feels a lot bigger than the last room we had. Thanks Hillary for hooking us up!

The bathroom - and now that we know that we can use it - this bathroom is bigger than the "parent's bathrooom" that we used last time we were here.

Our shower even has a built in seat/shelf! Thank goodness Aiden is still in diapers so that we can use it. :) We are all settled in at this point. I will post tomorrow. Brent has already asked me three times what is taking so long! I told him that I was doing 12 days of posting in one day! Thanks all for checking on us and we are doing awesome!

Day -10and -9


Since his counts were so low, we had to be even more careful about what Aiden was exposed to even with just us and the girls. This was a little bit of a challenge as we were trying to get ready to come back to the hospital. We found out that my niece has the stomach flu bug that's been going around so the girls will be staying with my mom for a couple of days til she is feeling better. The girls are planning on coming to Salt Lake this weekend to see Aiden and so can't be exposed to anything or they won't be able to see him.
Kaitlin took this picture - pretty cute. If you will notice the fat, rosy cheeks he has actually gained weight since we've been home. Mostly what we have been doing is packing and going to the grocery store and packing and laundry and back to the grocery store, more packing and cleaning, hair cuts, etc. Busy busy but we finally(10:30 pm on Wed night) got everything all set and ready for going back to the hospital tomorrow. This is the long haul. At least 4 weeks. One week of chemo then transplant then 3ish weeks for his immune system to come back online. Luckily we have requested "the suite" at the hospital :) We got the girls dropped off to mom's and they did ok. Kaitlin was really sad to see us go this time but feels a little better that she will get to see us in a few days and she will be busy doing all sorts of fun things until then!

Day -11 Clinic Visit

So today we had a clinic visit at Primary Children's. They took some blood and changed Aiden's dressing on his central line. He did great. We had to wait until the labs came back before we could go so it was a pretty long appointment - hence the cool toy. We got a canister of the disinfectant wipes and Aiden had to wipe down everything- even Brent. It is funny cause some of his favorite things to do are wash his hands and disinfect stuff with the wipes. Everything looks great. The red counts are up and holding and the white are down (which is what we want). He looks so good they sent us back home! Yay!

Just too tired

video

I love this video cause it was hillarious. He sits and stands and moves and crawls all over the place and he was just laying there doing this ball toy. It cracked me up! I think that we took this video at like 4:30 in the afternoon. All my kids are in their pajamas. Nice huh! The girls came home from school and showered then put their pj's on cause we didn't go anywhere else!

My First Concert

video

Our little Motzart





Aiden has found that the piano makes one of his favorite things! Music! He loves it. As you will be able to see from the video that I uploaded, He plays the song and then you have to turn the page cause he is done with that song. We did this a lot while we were in quarantine. And yes we did disinfect the piano keys.

Days -16,-15,-14,-13,-12


I love this picture of him. My mom took it on her phone! SO SO SO SO SO cute. So I know that I have been such a slacker about posting since we were home but we were doing so well and just enjoying our time. It was actually really nice to have an excuse to not go anywhere or do anything! Just relaxed. We did clean and disinfect our house 2-3 times a day. For those of you that know me I, I also really enjoyed having an excuse to do it :) and Brent couldn't even say anything. In fact he was more anal about it than I was. Aiden did great the whole time we were home. He started crawling a lot more and climbing up the stairs on his own. He learned a couple more signs and says "tank oo" and "gurt" (yogurt) but only when he feels like it. We were so impressed and feel so blessed and thankful that we got to come home and spend time with the girls and as a family. We were so blessed that he did so well. We had one doctor tell us that when they send patients home after this type of chemo they almost always end up back in the hospital. Thank you all for all your faith and prayers. We know that the success we are having is in large part due to your continued support, love and faith in our behalf. Thank you will never be enough to express how we feel about everything that we have received through and from you all and from our Heavenly Father. I definitely have to give all the credit to my Heavenly Father for making sure that not only are we receiving all the things that we need to be able to go through an experience like this but we have so much more that this experience truly has been a blessing for us. We love you ! Thank you for checking the blog.

Wednesday, September 22, 2010

Day -17

So they are sending us home. We talked to the doc this morning and he said that everything looks good and so we can go! Now we just have to get all the stuff we unpacked, repacked. It was acutally interesting, before we came we just packed up all the things we thought we may need (in plastic garbage bags). As we were packing to come home we are so glad that we can go home and repack cause we will do it differently for the next stay! We brought too much of some stuff and not enough of some stuff and next time we are going to for sure bring food that we can make in the parent kitchen cause eating in the cafeteria and out is super super expensive, even if you are careful! It took Brent 4 trips to get everything out to the car. After 4 and a half days of sitting he was glad for the movement :)
So by the time all was said and done we left the hospital at about 3:15. Crazy. I think that we were supposed to leave around 11:30 am. :) We are now on Hospital Standard Time. Any of you who have dealt with the medical community know what I am taking about. Aiden did have one lone hive that popped up on his leg and we had to watch it to make sure that it went away before we could go. Acutally this was really good. I didn't want to get home and have him have a reaction and then end up back in the hospital. It did go away and we signed the papers and were out of there (after we got all the extra meds that he will be on at home from the pharmacy). So they are sending us home on an antiviral, antibiotic, high blood pressure med, liver med (to help his liver with all the chemo drugs etc), cyclosporin (anti-rejection drug) and iron. None of these meds tastes good. I have tried them all, some taste better than others. But the worst one of all of them is the iron. WE may have to try putting it in Coke or something.
Going, going, gone. I aqm really excited to be able to come home for a few days. I think that it is a really needed respite for Aiden, us and the girls. I am glad that we will be able to spend time together before the long stay. I know that we have missed the girls and they have missed us and Aiden. They love staying with Darren and Lisa (my bro and sis-in-law) and have done great! Probably better as Lisa is really good at having and sticking to a regular schedule :) But I can't wait to see them. They are staying one more night at Darren's and we will pick them up from school tomorrow.
We will be home until Sept 30th. That is when we will be readmitted for the next round of chemos and the acutal transplant. While we are at home we have to be really careful to make sure that Aiden isnt exposed to anything (viral, fungal, bacteria, infection etc) So we are pretty much quarantined. While we would love to be able to see and visit with everyone we have to ask you to please love us from afar :) The girls will be going to school and we are going to start following the after transplant protocol of showering as soon as they get home from school, OCD handwashing and every vitamin, supplement whatever we can think of. So please call, text and keep checking the blog for updates. I don't think they will be as regular while we are at home. We have a clinic appt on Mon and I will be sure to update you as things change or we have more information. Thank you all again for all that you do for us and our family! We are doing great!

Nurses on the ICS Unit at PCMC

So I couldnt get a picture of EVERY nurse that helped us each day so I decided to get a picture of Irish. He was never actually our nurse, we just have a history so I used him as my rep :) Irish took care of my little brother Michael through his BMT and all the times he was in the hospital throughout the 5 years of his life. He is AWESOME! As are all the nurses that have taken care of Aiden. I just had to give them the credit and appreciation that they deserve because they have all been great! We really appreciate that they are so willing to take care of our needs and more importantly Aiden's needs. They are very thorough and caring. They are concerned about making sure that everything is as comfortable as it can be as well as staying on top of all the medications and monitoring to make sure that Aiden was doing well through the chemo treatments and after. We are so grateful for them and the job that they do! YOU GUYS ARE AMAZING!! So many thanks!

Day -18

So this post isn't going to be quite as long. Today was really just n observation day. They keep patients on fluids and meds for 24 hours after chemo. So they are just watching and making sure that everything stays ok and he doesn't have any more breakouts of hives or fever or anything. He is obviously thrilled that we are taking this picture. So after we are done with transplant and his counts come back up we have to stay within 30 min. of the hospital for about 90 days. We had called Ronald McDonald house as they have apartments that they use specifically for this purpose. I put our name on the waiting list and thought - yay! done. Then when we spoke with the BMT social worker during our parent education we were informed that Ronald McDonald house had sold the apartments that week. Of course :) So we were looking into other options on where we can stay. Brent's dad told us about a place that they had stayed in SLC called Sky Harbor so we had an appt to go and see what it was all about today. We also talked to the socail worker again and she said that because we were on the list for Ronald McDonald house apts they would honor that committment. What we wanted to see is if it would be a good thing to go to Sky Harbor anyway and start the rental before Aiden was discharged so that Brent and I would have a respite place we could take turns staying and the girls would have a place when they came to visit us. WIth Ronald McDonald you can't stay there until after the transplant and it is successful. When we went to see Sky Harbor we thought it was really nice but it still took us 20 min to get to and from the hospital from there and the one room units we were looking at were pretty small so that when Brent and the girls come to visit on the weekends there wouldn't really be enough room. The Ronald McDonald apt would have two rooms. Plus we have to fill out a rental application and set up our utilities with SLC etc. So we checked out the Ronald McDonald apt location and it is right next to the hospital. It take about 5 min to get there, plus it is really close to restaurants and stores etc and it is 2 bedroom. So we decided that we would just stay at Ronald McDonal House Apts. *Sigh* It is actually reeally nice to not have to worry about that part of the process at this point.
So I am not sure that I mendtioned this. It is Aiden's central line. It is a tube that is treaded into his heart and has two linees that come out his chest. The importance of this line is that it saves the veins from being burnt by the chemo. It also makes it so that they dont have to have an IV, they hook up all the fluids and meds to his central line. They also draw blood from his line. It is super nice cause there are no needles and owies with a line. We had his line put in in July so that they could do the blood draws they needed for weekly medicine levels. While actually having the line put in was really sad (Aiden didnt do well coming out of the anesthesia and the incisions and central line site wouldn't stop bleeding) it has been really nice to have the line. IT is one of those things that if you are having a BMT you just automatically get a central line. We flush the lines daily with saline and the clear dressing is changed once a week. Aiden had just had a new "bandaid" put on him for this picture. He does really well through the dressing changes. RIght after he took a great nap they whole time we were gone to our apartment appointment.

So I didn't really take anymore pictures today cause we did a lot of the same things - watch The Hulk and the Wiggles, play at the edge of the crib, push all the buttons on the O2/heart-rate machine, eat spaghettios etc. He did great today and even followed his more ususal schedule of 2 naps and eating schedule. The docotrs are planning on letting us go home tomorrow since he is doing so well.

Monday, September 20, 2010

Day -19

Ok, so first things first. I did the post for Day -20 late at night and while I was doing it I was thinking - I thought I took more pictures than this. My camera doesn't know what to do with itself, I think I have used it more in the last 4 days than in the entire 5 years we have had it. I ususally just turn the picture taking duties over to Jen, Codi, Mom and Kendra and then just have them send me copies. It is already needing new batteries and we just changed them the night before we left to come here. So, anyway I found the extra pics I took and I edited the post for Day -20. You can check it out if you want.
Today they had everything just right. They gave him the med for nausea, one for pain, one for his blood pressure and the several for all the allergic reactions like tylenol, benadryl. They also gave him the upped does of hydrocortisone and he flew through the day. HAHAHAHAHA. I am laughing cause he did do well but it was still long with all the vitals checks and he was still kinda cranky. At this point I was ready for a nap!
Obviously so is Aiden :) Kicking back. He loves to put his feet up and we have moved his bed so that he is really close to the TV. WE are creating a TV addict. On purpose.He loves Mickey Mouse Playhouse. We may have to get cable when we get home just so that he can watch the Disney channel.

Maybe we need the Disney channel for Dad too :) I think they are actually watching the Hulk at this point. All the nurses loved Brent's Thunder Cats Tee shirt too.
We love the Dad.

So this really was an uneventful day! When you are in the hospital doing chemo that is an excellent thing. He tolerated his last dose of the Campath so well. He got a few extra hives that they gave him one extra dose of steriods to take care of and he passed out at ten after watching TV and playing like crazy. He even seems to be tolerating the steriods better. He is doing so well. We got to talk to the girls on Skype and they had a good day too. While we are all missing each other things are great. The docs said that since he is doing so well they are going to keep him for observation tomorrow and do a few tests to make sure that everthing looks good and if it does they will send us home Tue morning. :) We are really happy that he has done so well through this! Thanks for all your prayers! I know that a lot of you really want to know if there is anything you can do to help us and faith and prayers, though unseen, are what are making this process be such a positive experience for our family! Thank you all! YOU are amazing and so is my sweet boy who is really flying through this! GO AIDERS!





Parent Time

Since this is a family thing - I thought that I would add some stuff about what it is like for us to stay here as parents. :) We were lucky that we have both been able to be here. I don't know what I would do without Brent to help take some of the (probably most of) the cranky time and responsibility of helping Aiden feel better. I am so blessed to be married to a man as wonderful as Brent. He is really the anchor for this family and he is the one that can always help Kaitlin, Hailey, Aiden and I feel better, no matter what.
So this is the parent kitchen. The ICS Unit has 24 rooms and at the moment they are all full. One of Aiden's nurses tell me that this unit seems to either be hardly full at all or overflowing. There is a fridge, a microwave and a toaster oven. We will have to get more creative with our meals when we are staying here for the long stay. For this short stay we have been eating in the Cafeteria (the food is really good) and off the complimentary cart for breakfast (bagels, juice, milk, donuts, etc). Brent is set on bringing turkey steaks for the long stay! At least that is one meal out of 84 down :)
This is the "laundry room" and in the same space as the "kitchen". We do our personal laundry as well as the personal items that we brought for Aiden. One thing we found out about Chemo is that since it is a hazardous drug that is eliminated from the body through pee etc and sweat we need to make sure that we double bag the diapers we throw away and double wash all of the laundry Aiden has, especially if he pees/poops out. Good thing I love laundry! (Did you hear the sarcasm?) Since we have been here we have done one load of laundry a day.
This is the parent bathroom. We just found out that we could use Aiden's bathroom though so that has been nice for us (at least for the last couple days we are here). They have a lot of policies that are to keep the patients from being exposed as little as possible to germs etc and so parents are not allowed to use the patient bathrooms unless the children are too little (in diapers) to use them.

This is our bed. Air mattress on the floor. The first night was bad cause everytime we moved it squeaked. That added to the fact that there were vital checks every other second and meds administered through the night it was rough. The second night we put a blanket on the floor and due to exhaustion and our awesome nurse (Jami) who was super quiet when she came in an really on top of things (no beeping alarms) we got much better sleep. It has been pretty comfortable. We were told that for the next stay we should see if they can hook us up with one of the big rooms. We will see what we can do. In the morning we put the air mattress against the wall so it is out of the way. Brent really likes it here cause we keep the room at freezing - at night I have a sheet, fuzzy blanket and hospital (warmed) blanket. Brent sleeps with just a sheet. AAAHHHH the story of our life.



Sunday, September 19, 2010

Day -20

See how much more comfortable I am today? This is much better, gotta love narcotics for pain and sleepiness.
It even gives daddy a chance to take a breath and check his phone (or play chess). Down time is great and definitely necessary or we get as grumpy as Aiden is and the nurses have to send us to time out. Luckily that hasn't happened yet.

Ok so the new fun thing to do is wash hands forever. I guess this is really good for him as it is so important to be a little OCD about handwashing during this process but it gets a little old for the parents.


At this point he is completely soaked down to his pants. Daddy finally had to put his foot down and turn off the water which is a fight but we are still the parents, I think.



Today was a lot more comfortable for Aiden in the beginning. It was the second big dose out of three that he will be getting. Shortly after this picture, about 5:30 they were just finishing up the saline flush after the chemo treatment and we went to change Aiden's diaper as he had wet through and found that he was covered in hives. The nurse went to call the doc and by the time she got back with the extra dose of hydrocortisone he had hives from his head to his toes, red and angry. After the nurse got the steriods in him they hives calmed down but then we went back to every 15-20 min vitals checks. The extra dose of steriods made him really cranky along with the itching from the hives and just general feeling yuckiness. It was a long night til he fell asleep around ten. The hives are completely normal with this chemo drug - it is a special antibody that they made to target the T & B cells specifically and it can and usually does cause an immune response i.e. hives, rashes, fever etc. So tomorrow they will be giving him higher doses of the steriods throughout the chemo treatments. He responded well and once he fell asleep he had a pretty good night. All the hives and red itchies went away. I have a love/hate relationship with the steriods. So glad we have them to help with this process but hate that they turn my sweet baby into the incredible grumpy hulk (which is currently his favorite movie we get to watch over and over and over and over...)

Playtime with the crazy boy!

video

Ok so I thought I would start today's blog with a video of Aiden playing. He did really well today in the beginning. They are giving him Ativan for stomach aches and Oxycodone for pain on a schedule and it has really helped him. Obviously you can see that the steriods make him a little CRAZY :) or maybe they are just bringing out his true nature.

Saturday, September 18, 2010

Belated Birthday Bash


Kaitlin got to go fishing because the last attempt didn't work out because of micro burst wind. For her birthday she wanted to go fishing at the place with the llamas. So that is where she went. She caught 12 fish in the hour time allowance she had.


This fish was super slimy. It slipped right out of her hands for the picture.


This one was more cooperative and photogenic ;)

Now she is asking to go to Angie's for a treat.....So off we go.

But before we go Kaitlin wanted to type her very own message to her Mom, Dad and brother Aiden....

dear mom,
can you smell my feet from here? They stink! Bad Bad. Tell daddy that when he comes home he has a fishing date with me. Give Aiden a big hug and kiss for me.
Love, Kaitlin

Party at Jen's!

Since today is Friday the girls got to go have a play/dinner/movie date with Jen, Quin, Woody, Becky and Rebekah! They watched Prince of Persia (an awesome movie and inspiration as that is what we rented while out on our walk later in the evening) Looks like a rough life!
And they got to help Uncle Quin cook waffles, hashbrowns, and sausage. Of which we are all jealous as it sounded fabulous! I am so glad that we have so many wonderful people to love and care for our sweet girls! I think they are being spoiled and that is great! Thank you all for being so wonderful and for all your prayers and faith, love concern and support. You can see that it is all working and we feel so blessed. :)

Day -21

Good morning! Today is going to be a busy day. We have chemo over 6 hours and a blood transfusion over 3 hours and during that whole time they have to do vital checks (blood pressure, O2 sat, heart rate and temp) every 15 minutes. We also have all the scheduled meds plus a few extras. But at least I am happy now.
I like to live on the edge. I have decided that because I can't have anything I really want I am going to make sure that I get to do everything I can even if it makes mommy nervous. He likes to stand in his crib when the rail is only part way and if I try to hold on to him or put up the rail he yells at me. This is a new and crazy attitude we have since we started all these meds. The nurses here call it "roid rage". Aiden seems to be really sensitive to the steriods. They had to put him on some high blood pressure meds and he has seriod induced diabetes (not permanent) it just means that the steriods make his blood sugars high. They will go back down after they back off the steriods on Sun. This is all totally normal and they are treating these symptoms as needed. Just part of the process. I am really grateful it isn't forever and they are on constant vigilence to treat these things.

This is his wonderful new friend and constant companion. Today it has four different punps running all sorts of meds into him. Our great nurse has to check vitals every 15 min and it has been a struggle and Aiden is really unhappy about it. He even bit me three time. I have been banned from the room because when I am here Aiden wants to nurse continuously for comfort and it is frustrating him that he can't. So...poor daddy has to deal with it. I got to go make cards at the "ICS parent break hour" and read my book. While this may sound great and it was nice, I felt bad that I couldn't be more helpful.


After a really long 5 hours the chemo is done and Aiden calmed down a little. We even brought out the big guns "coke" to try to make him feel better but he really wasn't interested. He finally took a short nap and that seemed to help calm his down a little.


Enough so that we could enjoy some yogurt! He is really loving the vanilla thick and creamy yogurt by yoplait.

Yes, mommy was allowed back into the room!

But now I want to DO

IT

MYSELF!!

They are pumping him full of so many fluids that he has so many wet diapers every day and he pees out a lot. So after the yogurt fiasco and peeing out we had to have a bath and change clothes. Then Aiden was really content to hang out in his bed and push all the buttons on the hospital machines. Luckily the nurses think he is SOOOO cute and were willing to ignore the beeping at their station. He ate a great dinner of spaghettios (the whole bowl) and passed out from exhaustion at about 9:15 pm after all of his nightly meds. Thank goodness cause now mommy and daddy got to take a little walk and a break and BREATHE! Can't wait for tomorrow. We talked with the docs and nurses about giving him some pain meds to help with the sadness that we had today. I guess a couple other side effects are headaches and body aches. You and me both buddy! Really Aiden is handling everything so well and it has been awesome that we haven't seen any side effects from the chemo! We can deal with some cranky!









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