Sooo I can sum up our first week in AZ in one word....WOW.
It was crazy...beyond crazy! I'm still processing everything, but I'll tell you right now, I feel AMAZINGLY blessed that this happened while we were in AZ! I can't imagine trying to handle all the stress of the situation, as well as trying to keep the girls from freaking out about it without the spectacular support of my family! Grandma and Aunt Kelly were amazing at helping out at just the right time. The nursing staff at the PCH was very sweet and helpful (even if I do have a beef with their Emergency Room staff!). I will say, however, that the facilities at MCG are worlds better than PCH. There's just something about being stuck in a tiny room with only 3 feet of walking room between your child's bed and your fold out bed that will make even the sturdiest of minds go a little stir crazy. And then there is the idea that all of the rooms are double rooms (thankfully we didn't have a roomate for the majority of the time!) and that the parents are expected to go to the bathroom and shower in the bathrooms down the hall. Let's just say that the rooms left quite a bit to be desired in my opinion. However, I will say that PCH has a spectacular nutritional department! The downstairs cafeteria has some of the best food that I have ever had in a hospital! Plus, the ability to order any item off of their menu at practically any time of the day for the patient was amazing. It's true that Benjamin ate practically next to nothing during his 4 day stay, but it was really neat to watch his eyes light up on Thanksgiving day when the "room service" staff delivered his plates of ravioli and french fries! I will also say that the staff at PCH are a spectacular crew! From the nurses and PCTs, to the people at the cafeteria, to the lady who cleaned his room, everyone was very nice and helpful.
I'll tell you one thing, RSV can be one nasty little bug! Benjamin ran a fever for 4 days and wasn't able to eat or drink anything substantial during the whole entire week! Thank God for IV fluids and antibiotics to stave off secondary infections! Even with that, the boy still had a very difficult time breathing...which of course elevated his blood pressure and pulse (he was keeping a pulse of about 200 and an O2 rate of 90 for about 2 days there, for those of you medically minded). Thankfully, the boy started kicking the viruses butt around Wed evening and stopped running a fever. He did continue to have a lot of difficulty breathing, and even needed a little oxygen on Wed. night. I guess his mutant healing genes kicked in around Thursday, because he started visibly perking up, and even got excited about his Thanksgiving dinner! I think what really accelerated his healing on Thanksgiving was being able to "shoot" his Daddy with his Nerf toy via the Webcam. :) I can't tell you how happy Ken and I were to see the little boy belly laughing as his Daddy grunted after being "hit" by the bullets! By Friday morning, the boy was sounding almost 100% better and started seriously climbing the walls, so the Oncologist decided he better discharge us before we tore up the hospital any further (kidding...mostly ;).
In the past couple of days, the family has been trying to get back on schedule with the real world. Since Benjamin's counts were pretty low when we were discharged (an ANC of 500), we're mostly keeping him at home right now while he recovers. In the meantime, Aunt Kelly and I took the girls out to Kwanis park today to feed the ducks and run off some energy. Then, after dinner, I treated the girls to dessert at our favorite spot...Bahama Bucks! We've got some other fun things planned for the next couple of days, but we're all looking forward to Tuesday when Daddy gets into town! We also have a clinic visit that day, so I'm looking forward to seeing Benjamin's counts so that hopefully he can get out and start enjoying his time in AZ!
Again, thanks for everyone's continued prayers! I'll leave you with some pictures from Thanksgiving...
This is not the post I thought I would be writing today. A few days ago, I thought I would be writing about how much fun we were having and all the wonderful things we've done on our vacation. Unfortunately, that's not how things have panned out.
Right before we left on the plane, Benjamin had a bit of a runny nose. He seemed fine, so it didn't raise any flags. We got to AZ fine and were settling in for the night when Benjamin developed a nasty little cough and began running a fever. We called the Hem./Onc night number and headed to the ER. While he was in the ER, the Drs. thought that maybe Benjamin had the flu. They gave him some antibiotics and fluids and prescribed him Tamiflu and were supposed to do a swab test, but did not before we were released. Benjamin slept most of the day on Monday and seemed to be doing better. He continued to run a fever, and I was told by the Hem/Onc nurse that as long as he was keeping down fluids that there was no need to take him back to the ER since we had a clinic visit scheduled on Tues. Monday at 2am, the boy's cough became much more pronounced, and he was having a hard time breathing. We headed over to the clinic this morning, and were relieved to find out that Benjamin's counts were very good, but the nurse was very concerned that Benjamin's heart rate was so high and his oxygen saturation was a little low. The doctor came in and examined him and decided that Benjamin had pneumonia and that we should be admitted. Unfortunately, the ER people had documented that Benjamin was positive for influenza, even though they hadn't done the test. Soooo, when we got to the hospital, they placed Benjamin in a room with another child that had influenza. It was only once we were admitted that they *finally* did a swab test. Long story short, Benjamin tested positive for RSV, *not* influenza, but the other child was discharged, so we are not sharing a room with anyone right now. Phew. They have given the boy a couple of different antibiotics and quite a bit of fluids, which seem to be helping. His cough is almost gone, and he seems to have less problems breathing. He is still running a fever, but it's pretty low grade right now (100F) and only seems a minor annoyance when it wakes him up.
Anyway, I'm sorry that this post is so blunt and short, but I'm running low on energy, and Benjamin keeps waking up crying every hour. I'll be sure to post more as the days go on. Thank you, thank you, thank you for the prayers!
Yep, you read it right! I talked it over with my hubby, and we decided that one of the best things we could do for the family is for me and the kiddos to hang out in AZ with the extended Clan whilst Ken tends to the hungry customers at Waffle House. Benjamin's counts have been really great, so the fantastic people at MCG said we are clear for take off!
I can't remember the last time we had a chance to be back in AZ for both Thanksgiving and Christmas, and I am truly relishing our time in the Old West! The girls are sooo excited about the trip that every morning they get up and ask me "Is it Sunday yet?!" There are so many fantastic things to do that I'm sure this is going to be the field trip of a lifetime!
Please continue to pray for our family. I firmly believe that all of the prayer has been one of the biggest reasons that Benjamin is continuing to do so well! :)
Benjamin update...We had our blood draw today, and everything is continuing to go well. :) Our next round of chemo is next week, so please keep those prayers rolling.
I've received a couple of questions about my Chemo bag from a few readers, so I thought I'd write up a quick post to explain...
Perhaps it would be simpler to say what *isn't* in my Chemo bag. ;) But more seriously, I've come to love my Chemo bag! It has all I need for a 2 day stay at the hospital, plus all the snacks, etc. needed to make it through a 6 hour wait at the clinic!
My Chemo bag is the Bugoutgear 3 day pass. I love all the room it has and all the dividers, pockets and storage areas. Plus, it's super comfy and made from really sturdy materials.
Obviously, not all Chemo bags are stocked the same. Contents will vary depending on the age of the child, as well as their personal tastes. ;) Here's the basic inventory of ours...
Front compartment...
1 package of SpongeBob bandaids
3 granola bars
5 packs of fruit snacks
2 Sweet & Salty bars
2 packages of whole wheat cracker and cheese
Compartment 1...
Nerf gun and darts
Compartment 2...
3 10 oz. bottles of juice (Minute Maid Mixed Berry)
1 sippy cup
Compartment 3...
1 pair of no slip socks
2 packets of Koolaid Singles
Chapstick
My Precious (folder with Benjamin's medical records and Get Well cards)
$10 in small bills for snacks while we're in the hospital
Compartment 4...
1 folding toilet seat (handy use on those big toilet seats in the clinic/hospital)
1 portable DVD player
6 pull ups
1 package of wipes
5 Overnight diapers
1 pair PJs for Benjamin
1 romper for Benjamin
1 shirt and 1 pair of paints for Benjamin
1 pair of pants for Janell
2 shirts for Janell
2 pairs of socks for Janell
Approximate weight: 25-30 pounds
Greetings everyone! Just wanted to let everyone know that Benjamin is doing very well! He went in for the blood draw this week, and his counts are very good (as usual!) even though he seems to have a bit of a cold. Everyone else is doing well, and the Knotts Clan is rolling right along. :)
Wanted to let everyone know about a new feature on the blog. I have included a link on the right side of the blog so that you can download and/or print a small flyer about Benjamin. I know several of my readers out there are praying for our little guy, and I thought it might be nice to give you something you could post at church or wherever. The only catch is that you have to have a google account to download or print the flyer. I tried several ways to see if I could get around that loophole, but I finally gave up. So please, feel free to use the flyer if you want. If you find it difficult to use or just flat out annoying, please let me know. :)
Anyway, hoping everyone is having a fantastic week. :)
So the big day finally rolled around and it was definitely memorable! We started our morning with Halloween cinnamon rolls (complete with orange frosting!). We watched a few cartoons and then donned our costumes to head over to the Girl Scouts Halloween party. The girls had a really good time playing games with the other girls in the troop, and I had a chance to chat with the other parents.
We came home and Bubby and I were able to catch a little bit of a nap while the girls headed over to the neighbors. Then I got a chance to carve our pumpkins...both were varying patterns of cat...hmmm...guess there's a theme going on there. ;)
After pumpkins, it was (finally!) time to get dressed and head out. We had a great time visiting with the folks up and down our street! The girls were so proud of the beautiful costumes that their Auntie Dena bought for them! Autumn made a fabulous Little Mermaid, while Genevieve captured the spirit of a mystical genie to a tee! And Bubby...oh my...I can say that I have honestly not seen such a handsome little Wookie in all my life! It was funny to watch him as he made all the mental connections.... "Hmmm...Daddy pushes me around...then we stop...I walk up to a total stranger...thrust out my bag...and they give me...C-A-N-D-Y!! Sweet!! So why doesn't that work any other time of the year?!! It must have something to do with this ridiculous costume they stuck on me! No, no, no...don't take it off Daddy! I want mooooore candy!"
After we had made it up and down our street it started to drizzle, so Ken took Benjamin home and I took the girls down the main road. We were armed with one lone umbrella, which I thought would have been fine. In hindsight, that was a bit of a hasty decision on my behalf. We were doing ok about half way down the road. Autumn had steadfastly refused to use the umbrella, claiming that "Ariel is supposed to be wet". Her tune quickly changed when it started pouring down! I thought maybe the deluge would get them to change their minds about soliciting candy, but noooo, they happily trudged along filling their bags while sweet little Momma got drenched to the bone! By the time we slogged back up the hill and home, I was quite literally a good candidate for a wet t-shirt contest! I would have posted a picture, but figured that it might not be in the best interest of my readers! ;)
It's true that we didn't do nearly the amount of trick-or-treating this year compared to previous years, but somehow, even despite the rain, this year's Halloween has a special place in my heart. I am so absolutely thankfully for every day that I get to spend with the amazing children that God has placed in my life! Sure, I'm human...there are times when it's tempting to tie the kiddos up and throw them in a closet for a couple of hours...but really and truly, I deeply love all three of my babies and wouldn't trade them for the world!
