First Field Trip in Kentucky

Last week -- all week, Hannah wasn't feeling well -- so of course our first field trip in Kentucky was to the Children's hospital.

Par for the course for our family.

Go to ER before anything else in KY.

Do not pass Go. Do not collect $200.

She was complaining of feeling like she was going to throw up plus she had a low grade temperature all week. I knew something wasn't right but just kept hoping it was her tummy adjusting to the new water in KY ... or something like that.

By Wednesday I got her into a local doctor to check her blood counts -- understandably, I was concerned about her blood counts.

OK, concerned is an understatement.

I had a hard time sleeping all week & was worried we were about to be shipped off for a bone marrow transplant if her counts had plummeted.

We spent all morning Wednesday getting an appointment set up & then we spent the rest of the day going to her appointment somewhere that only my navigation system could ever find again on the South side of Louisville.

Well, her blood counts were just fine.

Actually, her white blood count was up to 9.7 (from 8.0 on 5/12).

We came home & Hannah continued to complain of "not feeling good" & that her tummy didn't feel right.

Something wasn't right .......

By Friday afternoon Hannah & I looked up "appendicitis" we figured that must be it! At that point it was too late to get in with a doctor ... so Jim came home & Hannah & I headed off to the ER at the Children's Hospital in downtown Louisville. A babysitter came later to relieve Jim so he could come to the hospital & be with us. (Yes, I have already found some nice babysitters in KY!!)

Well, we got checked in. Everyone was very nice. It was a big change for us to be in a Children's Hopsital where everything is kid-oriented. The doctor introduced himself to Hannah as "Keith" & gave her a high five as he was leaving the room. Very nice.

Xray showed nothing.

Next was check blood levels & get a CT Scan with contrast.

Hannah's veins are shot so it took some time getting a nurse that could get a line going in her. Hannah was SO BRAVE & just rolled with all the punches. No complaining & acted like the champ that she is always is when presented with hospital procedures.

By about midnight we were finally headed to CT Scan. Jim stood by Hannah & I went back with the tech to watch the CT images come up on the screen. I was looking for an enlarged appendix -- which the tech told me wasn't visible. So right away, without her telling me, I knew we had just ruled out appendicitis. So what the heck was going on?

It would take an hour for the CT results to come back.

For that hour waiting for the test results felt like FOREVER. We sat in Hannah's ER room .. her laying on the bed watching Food Network & hooked up to an IV pole (again!?!?!?). I watched Food Network but it was like having picture with no sound because I was lost in my thoughts of "what is going on???".

At some point in that hour we learned that her white blood count was now up to 12.0 ...for Hannah, that is a big jump in 2 days! So, I started thinking we were going to be fighting cancer. Really, that is what I thought.

CT Scan results came in & turns out Hannah has something that any of us can get: basically a virus in her intestines that has caused her lymph nodes in her intestines to be swollen.

Nothing serious.

Nothing that has anything to do with Aplastic Anemia.

Officially it is called "mesenteric adenitis".

We got discharged & were back home by about 2am.

Thank you, Lord!!!! Total relief!!!!!

I kept just trying to tell myself "do not worry about tomorrow ... ". God knows. This is not a surprise to God.

My worry wasn't going to help anything so I just kept giving it to the Lord despite my mind racing down the road of Hannah possibly having something critical.

Yes, my mind was racing with all the worst case scenarios -- I guess that's my spiritual gift.

My sister & cousin had come down from Indy to relieve Lily's babysitter around 10pm on Friday night. Can I just say that my sis & cousin are the best? Thank you, Blair & Miriam!!!. Not only did they come down to watch Lily but they got busy re-arranging & decorating my house. I love them!!! They stayed until Sunday & helped me recover from the emotional roller coaster of thinking Hannah was going to be diagnosed with something serious.

Boy, will that play on a Mom's psyche .... what a week.

Here it is Monday morning.

Hannah still isn't feeling 100% but at least we know what is going on.

Thank you, everyone, for your prayers on Friday night as I was posting to Facebook about what was going on. We are so thankful for the wonderful community of people that love us & carry us through ...even from 2,000 miles away!

We are off this morning to tour Lily's future pre-school.

I will post pictures of life around here when I get a chance ....

All God's best from our new HOME in Kentucky,

Update ... & Thinking of Jacob

Ok, it was so hard to post the picture on Wordless Wednesday & not write a thing about Lily's adorable toes. It's Thursday and it's my blog: "Isn't it the cutest thing how she flips up her big toes like that?!?!" I don't know how she does it without pushing down the other toes but I love it!!!

Lily is having a lot of fun in her pre-school program 2 days a week. My sisters & I are addicted to watching her on the closed circuit TV while she is at school. Only one of us can be logged in to watch at a time so the texting goes back & forth to get off the "Lily Watch" & let the others have a turn. So cute to watch her with her little friends at school!

I have a Chinese lady (well, she looks like a young girl!?!) coming tomorrow morning to start Chinese lessons with Lily. Lily knows that tomorrow when Elaine comes, Elaine will say "Ni-How". I guess that is as prepared as Lily can be but I am sure it is going to be a shock when Elaine only speaks Chinese to her for a few hours!?

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For the past few weeks Hannah has asked me everyday, "So ... how's Jacob doing?" She knew he wasn't feeling good. We had seen Jacob while we were in patient at the hospital in January.

Back when we first met Jacob he told Hannah at some point that she was his girlfriend. Well, Hannah is a typical girl & hearing that is NOT what a girl wants to hear from a boy at this age! That was over a year ago (and believe me, Jacob had totally moved on from thinking Hannah was his girlfriend!) but Hannah still thought he thought she was (does that make sense?). She told me last night that he probably has pictures of her all over his room in heaven. Cracked me up .. yes, Hannah, I am sure he has pictures of you all over his room in heaven: hilarious!

It was very hard to tell Hannah that Jacob had died. My heart just breaks for her as she has now lost 2 friends from the hospital. She handled it better than I did ... thank you, Lord!

It is comforting to know that Daniel is there with Jacob. Daniel was so kind to all the little kids on the unit. Here is a precious scrapbook page that Jacob's mom, Melisa, made of Jacob & Daniel together. Both were precious guys & dear to our hearts!!

Kim said it best, "as life goes, you can see why we will long more & more to get to heaven -- think of all the friends we will be re-united with!"

Please pray for Tony & Melisa. They are Jacob's parents & he was their only child. Their pain is just beyond comprehension ... unimaginable.


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"To Thee, O Lord, I lift up my soul. O my God, in Thee I trust ... Lead me in Thy truth and teach me, For Thou art the God of my salvation; For Thee I wait all the day. Remember, O Lord, Thy compassion and Thy lovingkindness, For they have been from of old" Psalm 25:1-2, 5-6

Forever A Friend

Our hearts break for the loss of our friend from the hospital .. Hannah's friend, Jacob.

He fought so hard for over half of his life against this monster called Leukemia.

Jacob, you will always be remembered ... for the laughs, the fun in the hallway, ringing in New Year 2009 across the hall from each other and hearing you call "Mommy!" when she visited with anyone for too long.

Your Kaiser family will never forget you!

What a Girl

Here is a picture of Hannah from 2004 -- we were at Disneyland & loving life. I swear I did not plan our outfits to coordinate that day - I must have just been feeling the lime green & white. Humm?

Hannah's blood cultures came back negative so it was only the hickman line that was infected & thankfully, she has not had to fight sepsis issues. Hannah will remain on IV anti-biotics through Saturday. She will be discharged on Sunday (YEAH!!!) after a full week in the hospital (wasn't this supposed to be our "hospital-free" year? maybe 2011?)!

She is an amazing girl. I am so proud of her & so proud of the way she has handled being "back in the big house", so to speak. It is not easy for me to be back here and I am not the one attached to an IV pole & feeling ill. I know this is hard on Hannah but she handles it all with patience & grace. Thank you, Lord!

All God's best --

Off to Bed ..

Before I go to sleep just wanted to update that Hannah had a very mellow day camping out here in our hospital room. Her tummy has been upset - maybe from all the anti-biotics she is getting? She has been getting morphine for her stomach pain & hasn't really had much of an appetite. She hasn't felt like doing much -- even crafts which is usually what she does to keep busy.

She had an echocardiagram today to make sure there was not any damage to her heart from the infection. While I was gone this evening Jim was told that the report came back all clear!

I left this evening to go see Lily ... who is totally talking about going to see Meredith this weekend! Adorable! When I came back to the hospital Hannah was already asleep but she looked up at me & I gave her a Get Well balloon "from Lily". Now Hannah is snuggled in her bed with the string from the balloon in her hand. She loves her sister so much!

Because of the H1N1 virus the hospital is not allowing visitors under the age of 14. Big time bummer for these two sisters that Lily can't visit!

I am feeling a bit like I am going to lose my sanity being back in the hospital ...
I guess I just have to look at this week as the "Reuninon Show" of Hannah Fontana!

Nighty Night from Room #1301 :-)

The Week So Far ... in Pictures

Sunday afternoon ... she looked great & we suspected nothing!

Seven hours later, Sunday evening & she was not feeling well in the hospital room

Our super fun night shift nurses -- we love you guys!

Hannah showing me her hickman lines before we left for surgery

Hannah with our awesome day shift nurses -- love you guys!!! Probably can't even tell that Hannah was cranking a temp in the 104's.

Walking (and riding) to the OR

Waiting a very long time for the OR to be ready

Hannah's awesome pediatric surgeon, Dr. Sydorak -- he is so wonderful, caring & kind!!!

Visit from Hannah's teacher right after surgery -- love you Miss D!

A new day .... but not a new shirt, I know!!!!


You have heard of the Dog Whisperer? This guy is the vein sniffer. He can find a vein on Hannah & she has none visible ... amazing! Getting blood taken today .. she had this done three times today & handled it all like a true champ!!!!!

Hannah & Miss Wendy doing Girl Scout crafts. If Hannah can't make it to Girl Scouts Wendy will bring the GS to her! Thanks so much Wendy!

Hannah showing off that she is almost as tall as Nurse Rose. Oh my!


Not sure about discharge date because Hannah has to be on IV anti-biotics for a certain amount of time. I have heard mixed messages ... some have said 10 days, 5 days, 3 days. We will see as the week progresses & what the doctor says once her blood cultures come back.

Thanking the Lord tonight that her fever has been gone all day & that she is in a place where she is totally comfortable & well cared for! We have much to be grateful for ...

All God's best

News to Report

We just woke up & Hannah DOES NOT HAVE A FEVER!!!!!

So happy to have her here looking good & feeling so much better!!!

Her teacher called & the class screamed hello to Hannah over the phone. Made her day.

She is now sitting here eating a Happy Meal thanks to Ethan's mom .. thanks, Jennifer!

Thanks, everyone, for praying & for the well wishes!

Thank you, Lord, for no fever today!!!!!!

It is a great day in room #1301 with "Hannah Fontana"!!!

PS -- Yes, we woke up around noon. Some people have talents like crafts or cooking -- my talent is being able to sleep like a baby in a hospital room!! Hannah slept great thanks to her "Hospital BFF", Benadryl!

Hannah's Line Was Infected

It didn't take long for the infection to show up on Hannah's central line once they removed it from Hannah's body. Tonight they took blood cultures from her arm & now we are waiting to see if the infection spread to her blood stream. In the meantime, she is being treated as if she has sepsis until we know any different.

It is a REALLY good thing we pushed to just take the line out today .. if not, we'd probably be on our way to Kaiser Los Angeles for a late night surgery.

When she came out of surgery her temp was 106.1 ... gosh, I just love that she goes so high with her temperature: NOT!!!!

She seems much better this evening & her temp right now is in the 102's ... so that is a huge improvement.

Lord willing, her blood cultures from her arm will come back negative & she will get discharged by this weekend. We have BIG plans to meet Lily's precious foster sister from China, Meredith.

Hannah's teacher from school came to see her ... how did we ever win the lottery with this teacher? (Mark, stop laughing!) At that point in the evening we were just coming back from surgery. Hannah wasn't really up for visiting but it was great to have Miss D here with us & bring her spirit of joy to our room ... thanks Miss D, you are wonderful!!

I am really exhausted -- emotionally & physically. I never thought we'd be here this week but I just keep saying to myself "OK, Lord, You know & I trust you."

I probably won't update the blog tomorrow unless there is news to report. Just assume all is fine & we are staying happy & occupied in a room with no windows & no Fox News. :-)!

All God's best --

Hannah's Temp 104+ ..

Well, this is certainly not where I thought we'd be in 2010: back in a hospital room!?!

If you saw Hannah at church today you might not even believe me because she looked so good today!! After church we went to Jim's dad's place in Orange County. All was perfectly fine. I took Lily out on a walk to get her to go to sleep for a nap & when I came back (maybe 30 minutes later) Hannah was curled up on the couch under blankets feeling cold. She felt warm to me so Jim took her temp & called the doctor. Our dear doctor wanted us to come to Kaiser right away to get her line checked. I literally assumed we were making a quick trip & going home .... so much for that thinking.

Really, at this point, I know:

I should know better!!!

Hannah's fevers tend to go up very fast. Tonight she went from about 100 to 104 in less than an hour. Right now she is still hovering in the 104's even with Tylenol on board for the past 2 hours. She is sleeping, thanks to Benadryl.

Here is the deal: Hannah's blood counts are much better that they were a year ago but she still has her central line (Hickman line). Because of the central line she can get an infection in her blood stream & her body can get sepsis (not sure if I explained that right but that is how my non-medical brain understands it). So, since her temperature is so high she had blood cultures taken from her Hickman line. It takes about 3 days for the blood cultures to come back. In the meantime, congratulations to Hannah & I: we have won ourselves a three night all expense paid trip to the Pediatric Unit while she gets IV anti-biotics & we wait for the cultures to grow.

Hannah was actually in very good spirits when she was told she was getting admitted. I think she misses all her friends from the unit. She loves the nurses & thankfully she does not have to endure having her port accessed when she gets admitted (her central line hangs outside of her body so no needles are involved anymore for Hannah!!).

We will make the best of it all this week ... whatever comes our way. Please pray for Hannah's fever to come down & for there to be no infection in her central line.

I will post more tomorrow with an update on how she is doing.

Thanks to everyone who prays!!

All God's best from Room 1301 @ Kaiser Hospital --

Proper Etiquette?

So my main question last night: "What is proper etiquette when your daughter throws up in the hospital room with you & the nurse both there to see it happen - Who does the clean up?"

I was not feeling very much like cleaning up the floor ... but generous me did offer to call Housekeeping ... aren't I a big help?!

Thank you, Sweet Diana, you win the award last night for Nurse of the Year ... thank you!!!!!!!!!!!! You'd think I'd be ashamed of myself but I know better. I have certainly cleaned up many messes :-)

Hannah is doing better today -- she has really perked up & has not had a fever all day! Today she had a visit from Claudia (child life specialist), Miss Eileen (on site teacher) & the Children's Pastor from our church, Miss Lois. Hannah was pleasant for each visit & seemed to really enjoy the day. Thank you, Lois, for making the drive to Fontana -- Hannah loved seeing you & SOOO enjoyed the movie you left with her!

The doctor says she will come home tomorrow if she remains fever-free. Jim is sleeping over tonight with Hannah & I am home with Lily for the night.

It is nice to be home - I just made Hannah's favorite: homemade mash potatoes. They are here waiting for her to get back!! Hopefully tomorrow we will all be back at home!!

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"The steadfast of mind, Thou wilt keep in perfect peace, because he trusts in Thee. Trust in the Lord forever, for in God the Lord, we have an everlasting Rock." Isaiah 26:3-4

Quick Update

Hannah's temp has been under 100 most of the day. She is on 2 broad spectrum anti-biotics to cover about 98% of things that she could potentially have. Our wonderful Kaiser doctor, Dr. Horvath, is out of town so I called back East & talked to our awesome doc at NIH, Dr. Scheinberg. Dr. Scheinberg agreed with what the doc here is doing. That made me feel much more comfortable as I am not a huge fan of the doctor that is covering Hannah's case this week here at Kaiser.

What I know: God is faithful. He is the same yesterday, today & forever. Thank you, Lord, that even though I do not understand Your plan for Hannah's illness, I can continue to trust You with all my heart.

Pray for the anti-biotics to work & for Hannah to perk up a bit. She has not had much of an appetite today & just got sick to her tummy. Not sure all of what is going on ..

We are tired & going to bed. Just wanted to post a quick update.

Thanks for praying & for love & care ..

Not So Fast ...

Well, so much for plans on getting out of here today.

Hannah has been getting morphine for pain (to be expected -- I guess last evening she was still enjoying the effects of drugs from the Operating Room so she wasn't feeling any of the pain from the surgery).

Since we are in the hospital, why not add a fever to the program? Hannah's nurse felt that Hannah was warm in the middle of the night. No, it isn't hot in our room .. Hannah's temperature is around 101. We are getting blood cultures taken & starting an IV anti-biotic.

What I know for sure: You can never really plan for anything with Aplastic Anemia.

Hannah is laying in bed right now playing with her port .. she says we could make it into a yo-yo :-) I will post a picture of the port once I have the cord to hook up my camera to my laptop (left that at home .. didn't think we'd be here long!).

We will probably be in here at least a few days to get blood cultures back, etc ..

This is what I have been dreading as we wait to go to transplant: a fever! Please just pray for miss Hannah to be healed & for this fever to quickly go away!

Leaving to go to OR

We are in our room here on the peds unit ... actually we are in the room that Daniel spent so many months in. Gosh, it is hard to believe our special guy isn't here anymore. We sure miss him!!!!

We are waiting for our ride to take Hannah up to the Operating Room (not a limo .. bummer!). Pray for Dr. Sydorak as he does the surgery & for no complications ...

I will update after we get back to our room.

God's mercies are truly new every morning!!! Thank you, God!!

Port Getting Removed!

I am very tired so I will keep this short ...

Hannah checks into Kaiser Fontana tomorrow morning to get possible transfusions & then have surgery on Monday afternoon for her port to be removed & a different line placed (either a PICC line or a Hickman ... not sure until tomorrow). Hopefully our trip to Kaiser will be just over 24 hours & then back home!

Just pray, please. Pray all would go well with her IV being done tomorrow (since her port is not being accessed anymore) & that the surgery would go smoothly on Monday.

Hannah's port has caused such major issues that it will be a relief to be done with it. I want to see that thing -- Hannah is going to request it being put in a jar. Won't that look great on the shelf in her room? Not!

Thanks for all the love & support --

Debbie