There's No Place Like Home

Truly - I am so happy to be home with my family under one roof!

The morning started with PFTs at 9am. They were up from Friday! 78% Pre and 82% Post. Weight was still the same. After the test we went back to the room and waited. We already had one load packed into the car. Right when Nurse Heather came in to start her noon IVs, Dr. Broussard came in to take out her PICC and RT Pam came into do her treatment. So, no IVs, out with the PICC and a treatment for the road. Mackenzie barely had her vest off before she had her shoes and mask on and was ready to go. Of course, we still had paperwork and the rest of our things to load into the wagon. We hit the road about 1:30pm.

It was rainy outside but sunny inside! The entire way home she kept giggling, had a huge smile and was so excited to be going home
Remember that bridge I said I couldn't wait to be on, I took this picture when we were driving across it!! Here is the view of the Big Dam Bridge going home!

Goodbye ACH! Hello Home!

The Adairs and the Hanlons (and Peyton and Eddie) were waiting for us! They were on the porch, in the pouring rain waving us home. I could kick myself that I didn't get a picture of Mackenzie with them all!

Now I have to go do a little decorating for Mackenzie's birthday tomorrow...Oh, it is good to be home!

Day 14

I've been meaning to post this all week!! Mackenzie's Pulmonologist - Dr. Warren - who you all know we love so much, was awarded the Ruth Olive Beall Award here at ACH. Please click to read all about it!! Such a well deserved award.

No change again today on anything. PFT in the morning and hopefully home soon afterwards.

I love the Respiratory Therapists here (along with pretty much everyone else)...we had three come by just to tell her goodbye since they didn't have her today and wouldn't see her before she left.

We decided we might as well use a pass again today since the weather was beautiful. We went to the Arkansas Historic Museum and went on a tour of some of the historic houses. This picture is of Mackenzie and our tour guide. He was a patient at ACH, he worked here for 23 years and he wrote the book on the history of ACH (I'm going to look for this book in the gift shop tomorrow). Afterwards we decided to head over to the Big Dam Bridge. The Big Dam Bridge is the longest bridge in the United States that was built for pedestrian traffic. Here is their website with more information, photos and the answer to how it got that name!

I was regretting not bringing my camera when we were here! It's just not the same on my phone camera! This is the view looking to the East.

And the view looking towards the West. I can not wait to go across that bridge you see in the distance tomorrow!

I'll post tomorrow from H-O-M-E! Hooray! I hope I haven't jinxed it by packing!

Day 13

Yesterday, Saturday - Really no updates to give. Not even a weight check. We got a pass and arranged to have IVs and treatments a little earlier so we could enjoy the farmer's market at the River Market - it was a beautiful day and we made it back to the park. My friend Renee came to visit Mackenzie and took Peyton home to be with Sheila and family at our house. We can't wait to join them tomorrow!

Day 12

As I posted earlier, we are here for the two week duration...PFTs weren't what we wanted (possibly due to the Hypertonic Saline which has been discontinued) so we are here until Monday. Monday morning they will repeat the PFTs and we'll head home afterwards. There was no change in her weight today (Katey - she is 4' 9", I'm only 4' 11.5" so fingers crossed she surpasses me!).

We pass under this everyday to go around the corner and head up in the elevators - "Fear not illness...this place of care, love and hope is for you." What a wonderful thing for patients and families at ACH to read. Even better, a wonderful thing to experience.
This is Dr. Blaine, he is our alarm clock:

Here she is waiting to take her PFT today:

Tomorrow the weather is going to be beautiful so we are planning to ask for a pass - especially without getting to go on the roof during the weekends - and go back to the park.

Here Until Monday

Mackenzie's PFTs weren't what they were hoping today (FEV1 was 75% up from her last pre of 74% but down from the 81%). They are taking her off the Hypertonic Saline which has seemed to increase her cough - irratating/dry not productive. I will post again tonight.

Day 11

Another great day today. She gained a half pound and is up to 78.5 - we are aiming for 82. Peyton arrived at 9am and the day was filled with all of Mackenzie's favorite hospital things. Visitors, going to the roof, a pass, and mail. We went out and about with the girls between noon and 6pm IVs and treatments (they are nice enough to let her do her third treatment a little later when we go on a pass).

When we got back, there was a stack of mail - I love reading every single thing you all mail, e-mail, text, comment, etc. You all lift our spirits so much and I can't tell you how much I appreciate it. I have to admit one day last week I had a very down day because I started thinking about the "what if's" of this horrible disease. I sometimes wonder if our positive attitude sometimes takes away from how others might view the seriousness of cystic fibrosis, especially from the standpoint of what other families dealing with cf are going through or the work Mackenzie does to stay as healthy as she can. There are families that travel a very different cf road and some that travel a very similar one to ours but without the support we have that makes all the difference. Just being here at ACH where there are families that lose their children, that have to stay much longer than we do, and that are dealing with problems that are much worse than ours - I think more than anything I hope for each of them is that they could have the support system that we have, friends and family and other amazing cf families that say prayers, write letters, lend a shoulder and an ear and do all the things you all do for us. Please know it means everything to us and is a huge part of the reason why we remain positive, hopeful, and brave enough to fight and beat CF.

So, you want to see a few pictures from the day?

We went to the Museum of Discovery which was okay. I know they are soon adding on and I think they have a lot of room for improvement - just in comparison to some of the other museums we've been to that are similar. The girls did have fun and that is what matters!
After the museum we did a little repeat of some of the things we did when Mackenzie was on a pass in 2006 but this time Peyton got to participate. Trolley ride and Peabody Duck March...

Peyton wanted to go sit on (her words) the "freakishly large couch" at The Peabody...We had a few extra minutes before we had to head back and stopped at the Peabody Park at LR's Riverfront Park. It was AMAZING! I wish we had a park just like it. These pictures do not do it justice! Unfortunately we couldn't play in the water because of the PICC line but Mackenzie and Peyton still had a great time.

Here are some pictures from the LR Parks and Recreation website.

Now I have to run to hug on Peyton and Jason before they go sleep at Dana and Blu Coburn's for the night. Dana and Blu are friends of Jason's brother Lance and his wife Andrea and they are so generous to open their home to us so we don't have the hotel expense and so Peyton can be down with us for a few days!

Day 10

We had a great day today. Mackenzie must be feeling 100% - she is bouncing off the walls in this room. Luckily we asked for a pass today. We didn't really have anything to do so we went to a park until we got too hot then to the mall (with a stop by The Container Store, this makes me very, very happy) and then to eat at Ghengis Grill (this was stressful to me - have you been to one?).

Here is a picture of Dr. Com. We really like her, I think they have such a great group of Pulmonologists here! Dr. Warren's nurse, Wendy stopped by today - it was nice to see her. They are definitely taking her off TOBI after this round (Monday) and she is SO excited about that!

Mackenzie and Jason found an Xbox game they love - Lego Indiana Jones. She has to wear her nose clip while using her nebulizers though because she forgets to breathe in her meds while playing.

Mackenzie and I made a craft that she wants to give to Peyton today - this flower mobile:

We'll get to give it to her tomorrow!! She'll be here in the morning - we can't wait to see her!

Day 9

I updated on the health stuff two posts down (if you are wondering) and the only other change since then is that they are taking her off the Flovent and putting her on Advair and that she needs to start drinking more fluids.

We had visitors! Michele, Elise and Anna were traveling home from the beach and stopped to see us. They brought three other little friends too. PT was nice enough to come take us to the roof a little earlier so Mackenzie and friends could play. When we got up there it had started sprinkling but they got a good game of hockey in before the rain really started coming down and the lightning flashed.
We are missing Peyton and she is getting spoiled! Traci is so nice to text us pictures of Peyton and all the fun she is having:

We are also missing this guy! I'm sure he's been missing us too, especially with his fear of storms.

We'll be under the same roof soon!

Huh?

A nurse just asked if we had permission to both stay with Mackenzie. She's going to check for us now so she doesn't have to ask one of us to leave at midnight. Huh? "Since this is a Children's Hospital." Huh? This is our 9th night to stay - two shifts per 24 hours with a nurse, charge nurse, several RTs, PTs, Dr. Blaine (who wakes ALL of us up every morning between 6:40am and 7am), Pulmonologists, Social Worker, Dietition, Child Life, STAT team members, room service, shall I go on or is my point made - point being this is the first person/time it's been brought up? If we were doing something wrong would none of those other people have said something? I pointed out this is our 9th night and we both stayed the entire two weeks last time with her as well but she's still checking with the charge nurse for us just to be sure. "This is a Children's Hospital". Huh?

Because I can't let things go...there is also the person that helps get blankets, sheets, and towels for all of us...

I just don't like to feel like we've done something wrong - when we haven't - nine days into this hospital stay. AND can you imagine if one of us had to leave at this point?

UPDATE! WHEW! (sarcasm) Just heard back, she checked with the charge nurse and it's okay.

Home Saturday?

They'll be repeating PFTs Friday with the possibility of Mackenzie getting out a little earlier so we can be home to welcome our guests, the Hanlons from Ohio (arriving to stay with us on Saturday). The doctors were very happy with yesterday's PFT results (updated below on "Day 8" post).

Weight was back up to what it was on Friday. They are starting to weigh her every day.

There is also a possibility they'll take her off TOBI since she hasn't cultured Pseudomonas since 2003 this would cut an hour of treatment time (on the months she's on TOBI - every other).

Day 8

Mackenzie started the morning with a weight check - she was down about 2/3 a pound - it should have been up after two days of food, food, food. She is so tired of us nagging (this is more so Jason who asks her if she wants about 100 different things at each meal/snack).

She had her second Pulmonary Function Test during this hospital stay with great results (I think) - Thursday when she did them, she was at (FEV1) 60% before Albuterol puffs and 68% afterwards. Today, she was 74% before and 81% after! According to data they pulled for us, she has not been above 80% since January 2005. We did have them explain exactly what she is seeing on the computer as she does the test and what it means, I think maybe that helped quite a bit - so I wonder how effectively she's been doing this test for the past several years.

They've added more Prevacid since she's at her max dosage of enzymes and started her on the Hypertonic Saline.

Right now, this is her schedule (treatment/meds) minus all the eating -

• Ultrase MT18 - 4 w/ Meals, 3 w/ Snacks
• Morning Meds - Prevacid, ADEK, Claritin, Flonase & Singulair
• 6AM - Nafcillin IV
• 8AM - Treatment - 4 puffs Albuterol, Vest (Pulmozyme, Hypertonic Saline during Vest), Flovent, and TOBI (1 hour total time)
• 12PM - Treatment - 4 puffs Albuterol and Vest (30 minutes)
• 12PM - Nafcillin IV
• 3PM - PT on roof
• 4PM - Treatment - 4 puffs Albuterol and Vest (30 minutes)
• 6PM - Nafcillin IV
• Evening Meds - Prevacid
• 8PM - Treatment - 4 puffs Albuterol, Vest (Hypertonic Saline during Vest), Flovent and TOBI (1 hour total time)
• 12AM - Nafcillin IV

Day 7

Mackenzie had a great weekend. We got another pass today and were planning to go bowling but when we walked outside it was overcast and a little cooler than it has been or will be so we she decided we should go to the zoo. Of course after about ten minutes, the sun came back out and we started baking. She still had a great time and Rainbow Lorikeets were her favorite part! They made her laugh so much, it was so nice to see! We are going to stay put here at the hospital tomorrow and hopefully later in the week Peyton can come down and we'll go to the museum.

RT is here and says she sounds better than she did last night!

Two Weeks

We just got word that we will definitely be here for two weeks minimum. At two weeks, she'll be getting out the day before her birthday - I am really hoping that happens and she doesn't have to turn 12 here (although I'm sure the great caregivers would help make it special).

Please keep the letters coming - it really brightens her day!

Arkansas Children's Hospital
Attn: Mackenzie Jobe, 4B-08
1 Children's Way
Little Rock, AR 72202

A big THANK YOU for everything!

Day 6

A day late.

Two of the three things that really brighten Mackenzie's days don't happen on the weekend - mail delivery and physical therapy (which equal roof visits). That was okay because - SHE GOT A PASS! Between noon and evening IVs and treatments she got to leave. It was so hot so we went to the mall for a bit and bought a new pair of PJ shorts (she gets so hot). We also went to eat a non-cafeteria dinner at her choice - Saddle Creek Woodfired Grill (we thought it was a fantastic choice!). Not too much to update, they've moved her next PFT from Monday to Tuesday or Wednesday and that's about it.
We also had visitors today! Mackenzie's Uncle Lance, Aunt Andrea and cousins Lexa and Logan came down to visit. Mackenzie and Lexa:

What can we do to pass the time?

A little fundraising! Great Strides 2009 is fast approaching and we need to get busy raising some funds. Last year - with donations from our friends and friends passing information on to their friends - we surprised Mackenzie by raising as much money as we could while she was away at camp. We raised so much during that time and by the day of the walk, Team Mackenzie raised over $13,000.

She's decided not to go to camp this year because she doesn't want to chance a setback so soon after being out of the hospital. So, we are going to try to see how much we can raise while she is here in the hospital. Please click on this link and donate http://www.cff.org/great_strides/MackenzieJobe any amount is appreciated! Also, if you would like, please write a little something about Mackenzie and pass this link along to your friends that might like to donate.

NWA Great Strides 2009 will be held August 29th. If you are in the area, please join our team (you can do that by following the link above) and come have fun with us that day.

I think we are looking at a two week stay but we will know more Monday after her next PFT. Mackenzie's 12th birthday is July 21st and I hope we are home in time to celebrate!

Day 5

More of the same - treatments, meds, food...

And, some of her favorites - roof, mail and visitors!!

She gained another pound but really no other changes to report.

She was in great spirits knowing her grandparents were coming to visit and bringing Peyton. And of course mail, packages, e-mails, and going to the roof always cheer her up!
Peyton took a rest with Jason in Mackenzie's bed (when Mackenzie is unattached from the IV pole she tries to be up and about in the room as much as possible) and almost got mistaken for Mackenzie. Twice. We told her she better watch out before she gets poked and prodded!

I was so sad to see Peyton go again. She is heading back to Kendall's house but tonight our dog Eddie is going to join her. Mackenzie will have more visitors tomorrow, a great thing since there is no physical therapy on the roof on the weekends.

Day Four

The results from the bronchoscopy are that she is just growing what she normally grows - Staph - and something they are still trying to figure out (also grew last Wednesday). So, they took her off the two IV antibiotics she was on and changed to another. She had a Pulmonary Function Test (PFT) today and her numbers were down from last Wednesday, and then back up (but not to what it was on Wednesday) after albuterol. She'll repeat her PFTs in 3-4 more days.

The doctor (fellow) said initially he suspected we were not compliant on her treatments based on initial review. I have to say that hurt - especially knowing how compliant we are. But he said after hearing her cough (more dry) and looking into things that it's something else and we just have to figure out what. One problem that we know we have to address is getting more of the bad stuff out, which she has a hard time doing.

We just got back from the roof where we had a pretty intense game of Horse (followed by an equally intense game of Cow) and played a little hockey. I have to run - she's requesting more crafts so I better go track some down!

Day Three

How do days go by fast and slow at the same time?

Mackenzie gained two pounds - woo hoo - great news - if she can gain about 6 more she'll be in the "green zone". Hopefully we'll have the bronchoscopy results tomorrow.

Thank you for all your comments and e-mails, we read every single one!

Can I please get a "Care Hub" at home? I'm pretty sure Mackenzie could use this little screen (photo below) to guide the next shuttle landing. We love it. It's a remote for the television (including the ability to record shows), movie player (with about 40 movies we can watch at any time) and the Internet. She can also click to watch what's going on in the parking lot and various places around the hospital campus from the cameras, play games and order games for the Xbox. She can also use it to chat with other patients (we haven't done that yet) and probably a hundred other things that we haven't figured out yet.
There was a hospital wide Bingo game today. For the kids that can't go down to the room to play, they televise it and if you get a Bingo you call a number. It was fun. Mackenzie got her bingo and called - we could hear them talking to her on television and they announced her name and all the kids in the room cheered. Later a volunteer brought her a prize.

We also did a lot of crafting today. A LOT. Sand art is the latest fashion craze for a IV pole near you.I've always said that there are positive things to come out of Mackenzie having CF and I have to add another thing to my list - the amazing support of the CF community. I've had so many CF patients and parents keeping up with Mackenzie, giving us tips and being wonderful examples to us. I appreciate it.

Peyton went to stay with a friend today and I miss her. I know she's missing us too but I know she's having fun. Jason and I will both get to stay in the room overnight with Mackenzie and I know she loves it when we both can be here with her.

I will update again tomorrow!

Day Two

Mackenzie has been looking forward to getting to play on the roof since she found out she had to go to the hospital! We were afraid it wasn't going to happen today because when the Physical Therapist came we were waiting to go down for her Bronch and she was on IVs in preparation (not too much fun to be on the roof attached to a pole). After Bronch, food (finally!) and a breathing treatment she got to head up. It really is a fun thing to do:
Last night after Jason and Peyton left, Mackenzie wanted to make Peyton something special since Mackenzie was getting so much attention. She made her a friendship bookmark (like a friendship bracelet). I'm staying at the hotel with Peyton tonight and since we'll be staying until Friday at the minimum, Peyton is going to a friend's house tomorrow to stay for a couple of days. I'm going to miss her and can't wait until we are all together at home again.

So, between now and when we get the results from the Bronchoscopy (Friday?) it's extra breathing treatments, IVs and food, food, food to get her weight back in a safe zone. 7am-7pm she can order room service - anything she wants off the menu, anytime. That is very nice.