Coming Home

Madeline is on her way home now...we are so excited to be together as a family!

Thanks to our family for making our Christmas in the hospital a wonderful day. We enjoyed what matters most...which is being with family. Thanks to all our nurses that take care of Maddie and those that worked on Christmas Day as well.

Uncle Gary's Office

Madeline felt good enough to visit Uncle Garry's office on the 4th floor today. She enjoyed her visit!

Doing Well

Madeline has very little pain today and is doing well. I think we have turned a corner today! We will see what the next day brings and hopefully we can see a light at the end of the tunnel. Merry Christmas everyone!

New Port

Madeline got a new port today and everything went well. She did well with the anesthesia and the new port works good. She is now recovering and watching Polar Express.

The stripping of Madeline's port did not work. The fiberous tissue was too thick to remove. So the next step is to completely remove the existing port and replace it with a new one. Madeline did well with the anesthesia and as always amazes me with her strength.

Madeline's port has not been working properly for a while. It is important that this works for times like these because it allows us access to draw blood and give her fluids without the constant pokes from I.V.s. So it is schedules for Monday to fix her port. This will require some anesthesia.

Thank you to everyone for your love and support. Thank you to the Payton family, Owens family, and my mom and Lee for the gifts for Madeline. Also, thank you again to Angie for the gift to Children's. Thank you to everyone for the encouraging words and help with Ryder. Also, thank you to Eric and Liz for always coming to the hospital and loving Madeline.

Madeline had a little better day...she wanted to take a little walk. She has been up coloring and playing some. Her blood work is normal. Now we are waiting for the tummy pains to go away.

We want to say a great big thank you for a special gift to the young patients of Children's Medical Center in honor of Madeline from Angie Bicknell, Trey's sister. This is the best gift someone can give. Thank you Angie.

Another day

Madeline's pain was off and on today...there were bad moments and tolerable moments. Madeline's bicarb was at a 27 this morning which is great! Her pancreatitis is full blown at the moment and is really hard for her to tolerate. Some good news is 3 of her doctors are going to meet and discuss "how to keep Madeline home more...". I think they are going to try to adjust some of her meds and diet and hope it makes a difference.

Being apart from each other is hard on us especially during the holidays. But there are families that are apart much longer than we are, and we feel our situation is not as bad as it could be.

Back in action

Madeline is back in the hospital with tummy pains. She had a few days of no eating and labored breathing which made us bring her in. Her bicarb was at a 10 (normal for her is 19 or higher) and she was acidontic this time. She has not been acidontic in a while, so we were a little suprised by this.

Her spirits are up and she is worried Santa Clause won't find her here in case we are still here. I assured her this is not the case!

I will try and update everyday.

Madeline is finally home! We are enjoying our family being together again. Thanks for all your love and support.

Madeline is taking her formula and eating a little. Good progress so far!

Good Morning! Madeline is doing well and tolerating her formulas. We are going to back off her TPN (the nutrition she gets through her IV) and try and get her to eat. After not eating for two weeks, it is a little difficult to have much of an appetite. But the TPN has done its job. Madeline weighs the most she ever has in her life due to all the fats and nutrition she has gotten. Hopefully we can have Turkey day at home. If not we will survive. : )

Madeline is having a pretty good day. She is having almost no pain and she has taken 2 ounces of formula today. Unfortunately, she had a head cold now that she is dealing with. Hopefully this won't delay her going home any. Mimi came to visit today. Here is a picture of them today.

We have started some pedialyte and she seems to be taking this pretty good. We will be trying some formula tonight to see how she handles it.

Better Day

Happy Birthday Mimi! We love you!!

Madeline has had a pretty good day. She got a continuous drip of pain meds and a button to push when she feels she needs more. I like this because she can control it. She is in good spirits and seems more relaxed with the medication.

Madeline got to see Mickey Mouse today. Mickey Mouse even gave me a big hug. This brightened our day!

YUCK!

This pancreatitis isn't going to let go without a bang I guess. Madeline had a bad night and have gotten considerably worse since yesterday. Her blood work is showing some unstable levels and we feel like we at square one again. A week and a half in to this and we are going backwards. YUCK YUCK YUCK is all I can say.

Tuesday

Madeline is doing well...had some fluids today which is good news. We taking Ryder to the hospital tomorrow to see his sissy. He misses her very much. Hope to be home soon!

Sunday

Maybe a step forward today...???
No pain meds needed today.

Afternoon update

Madeline seems to be doing well except a little pain that comes and goes. Here are a few more pics of Katie and Gary visiting us today.

Friday, November 13th

Happy Birthday Pappy! We love you!

Madeline is in good spirits this morning. We had about 13 medical students come in our room to ask me questions about Madeline. Madeline loved the attention. It went really well and I enjoyed talking with them.

Madeline needs pain medicine from time to time. Things look promising and as soon as the tummy pains go away, we will start eating.

I plan on updating more often. Keep checking in!

Here is a picture of Uncle Gary with Madeline. He is always a constant support for us and comes in everyday to see Madeline. We are lucky to have our Uncle Gary!

Doing well at Home

Madeline is doing well at home and slowly getting back to normal. Thanks for all the well wishes!!

Tooth fairy

The tooth fairy finally came last night! She brought $20 and a new toothbrush and toothpaste. I guess that tooth fairy thinks that first tooth is worth a lot of money...or maybe she didn't have any smaller bills in her purse. Hmmm...

HOME BOUND

We are home now! Things are great and Ryder is so happy to have his sissy back.

We plan on updating this blog even though we are not in the hospital. Thank you for following our blog and offering all your love and support! If Madeline goes back to the hospital...keep checking here for updates regarding her status in the future.

Love
Jessica and Trey

Good labs

Madeline's lab work looked good this morning...so we will see if the doctor has some good news for us today ; )

Humpty Dumpty

So I saw a little Humpty Dumpty sticker on the outside of the door. After asking why that was put on our door, apparently they think Madeline may be in danger of falling out of her bed. So it is a warning for the nurses I guess....I can't imagine why they think this????

Obviously Madeline is feeling better.

Good afternoon!

Madeline is doing good. We are just waiting to see if she continues on this good path before going home. She is alert, happy, pain free, and eating some today. She is also tolerating all her formula. We will see how the rest of the day goes.

Doing Pretty Good

Madeline is doing better. Her bicarb level is going up and down, and as soon as we can get it stable, we should be on our way. Madeline has started eating some and is getting most of her formula.

Getting Our Sea Legs Under Us

Last night, Madeline showed the first signs of real improvement. She ate some mashed potatoes and fries, was very giggly, and wanted to go for a walk. So we actually put on a mask (which I removed for the pic) for safety and then she thought it would be cool to put on my sunglasses and wear them around. Pretty funny.

After a little walking she quickly became tired and had a lot of heavy breathing and was getting cold easy. I had a "conversation" with nurses and docs and they drew labs and found that her bicarb (base that controls pH of blood and off sets acids) had dropped from a 14 to an 11. Not good! She was quickly getting into a danger zone and now we have a chance of the acidosis setting off the pancreas again. After a few more "conversations" they took her off her current fluids and ran some Sodium Bicarbinate (base) and agreed to draw labs twice overnight. By midnight she was at a 19 and at 6:00 this morning she was at an 18, which is still just fine.

It is now 8:30 and she is just wiggling around. She says her tummy feels "good" this morning so if that is true and we can tolerate foods, feeds, and formula, we could be making serious ground today.

Moment of Zen

Yes, the greatest invention since the HOV Lane! Starbucks Microground Coffee packets. Just add hot water and you have yourself a little slice of heaven. You know how breakfast tastes better when camping, and steak better with a nice glass of cab-sav? Can you even imagine the experience of Starbucks in a hospital room?

Little More Food-Need to Hydrate

Last night Maddie really ate on some chips and M&Ms (daddy is obviously back on this diet). She didn't have any tummy pains until this morning, as is common. Mornings are usually the worst. Lab work is pretty much the same, and after discussions with her specialist we feel that she is slightly dehydrated and the increase in Sodium Chloride (Sodium being a base) will hydrate her, offset some of her acidosis, and overall make her 'feel' better. The current fluids she is on is a mixture of TPN (which is like the broke down nutrients your blood gets after food is digested) and Lipids (energy storing fats), so it's basically a meal in a can. This is how she can lack on hydration.

She is up this morning watching Nemo, talking about food, and is in a little discomfort but still hasn't needed any pain medicine.

Bi Carb

Madeline's Bicarb level is down to a 14. We need it back up to an 18 or higher. I actually expressed my concern about this yesterday after she threw up again. I am expecting for them to have a good plan today...like bring me bicitra medication that I asked for yesterday. So I am obviously frustrated this morning. Oh well...we will keep on going.

OMG

Oh My Gosh! Madeline ate some cheerios and goldfish!

Evening

Madeline is about the same this evening...she hasn't had much of an appetite and threw up twice today. We are starting her on TPN - Total nutrition since she isn't eating yet. She is drinking water. She isn't asking for pain medicine very much at all and seems to be more comfortable tonight.

Mornin' Time

Good Morning! Madeline slept well. Her bicarb is back down to a 15. Looks like it is going to be a little bit of a fight getting her levels back to normal. Madeline has very little appetite and we are trying to get her to eat something. Wish me luck!

Walk

Madeline took her second walk since being here. She went up a huge staircase and had a lot of fun. It is always good to see her moving around.

Not much to report

Madeline is about the same since this morning. She is not in much pain, but still a little discomfort. She has taken sips of water and licks of a popsicle.

Good Spirits

Madeline has had a good morning. She woke up with little pain so far and is in good spirits. Now we are going to try eating clear liquids today and see how she does. We are also going to add more bicarb in her fluids. Here she is this morning.

Good Morning!

Madeline slept well last night. We are planning to take her off her morphine drip today. I think that will help her to get moving around a little more. Her bicarb was up one point to a 16 from 15 yesterday. I wanted it to be a little higher, but at least we are not going down. One great thing is her blood count has stayed up. Usually this is an issue by now. I will update again after she wakes up. Have a great morning!

Great nurses and doctors

Due to having great nurses and doctors today...Madeline is on her new fluids that hopefully will keep her bicarb up. I always appreciate it when they take me serious. Kudos to the staff that took care of Maddie today!

On another note...I got to eat dinner with Ryder. Trey and I switched for dinner and Ryder and I went to Chili's and enjoyed good food and chocolate cake! I enjoyed spending time with him this evening.

Bi Carb Update

We are planning to add some Bi Carb to her fluids tonight which should help to bring that level up. Hopefully...

Bi Carb Level

Well, I discovered why Madeline is so tired...her Bicarb level dropped from an 18 to a 15. This is not the best news. Normal level for her is 18-21. I expressed (as nicely as I could) the importance of correcting this before it gets worse. If this continues to drop, she will become acidontic and we will then be back at square one. So here I go following these nurses around driving them crazy. I will update soon once we make a decision on what we are going to do. I am guessing change her fluids and put some bicarbs in them. We will see.

Laughter is the Best Medicine

It is 1:00 in the afternoon. Madeline is still a little uncomfortable, but doing okay. She seems tired today. Maybe after a long nap she will feel better like yesterday.

The clowns came in and made us laugh! Here is a picture of them!

Music Therapy

Keith the music man came by and we rocked the house. We sang Twinkle Twinkle and Lion King songs. We played drums, guitar, bells, and other instruments. Thanks Keith!

11:00 Update

Madeline woke up a little bit ago with some pain. She usually has more in the mornings for some reason. I bathed her and washed her hair. She is now watching cartoons in clean clothes and new pig tails. I am sure this makes her feel a little better. She pushed her pain button once after her bath. She seems to be making progress, but at a very slow pace.

We have a student nurse here today that is going to play and paint with Madeline in a little while. I am sure that will perk Madeline up. Now all we need is a massage therapist to perk the parents up...or a bartender.

Rise and Shine...well...

I am up and of course...Madeline is still snoozing. She slept good last night even though the nurses came in every other hour. : ( She seems a little more comfortable than the last few days, but I will know more once she wakes up.

Good Evening!

Madeline slept most of the day today....but....it seems as though a nap is what she needed. She isn't needing her pain medicine button at all today, and we reduced her morphine drip to half what she was getting before. She is still asking for a hot pack for her tummy though. She is coming around to her old self...even demanding that I remove my food from the room because she couldn't stand the smell of it. It was only chicken and potatoes!!!??? So I pulled out the peanut butter to make a sandwich and she complained about that smell also. I am fully convinced she has some extra powers in her nostrils that I cannot explain. (She once smelled gummy bears on my sister that she had eaten a few hours earlier). Anyways, back on subject...Madeline is doing better than yesterday. Not 100% yet, but progress I think. Here is a picture of her this evening watching Charlotte's Web.

Great nurses

Madeline and her nurse Kendel this morning.

Good Morning

Good Morning Madeline! We are trying to wake up after going to sleep at 1 a.m. Maddie has her days and nights a little backwards. The doctors started coming in at 6 a.m. The pain is still here, but it is not as bad as the first few days. She threw up after receiving pain meds...I am trying to figure out if her getting sick is the result of the meds of just her pancreatitis. Madeline said she dreamed of Christmas last night. Hoping for a better day today!

Thanks Pappy and Grandmommy for the awesome balloons and the adorable writing tray!

Mommy here!

Maddie is soooooo excited, Mommy is here and ready to party!

Sunday Update

Madeline's pain was a little more manageable yesterday and she only needed her 'hit's of morphine 3 or 4 times. She was up more and talking, coloring, drawing pictures and taking care of her stuffed animals (which is always a good sign). She was able to sleep through the night without waking up with pain, although when she woke up she was in some pretty intense pain. She got a 'hit' of morphine and has calmed down and is watching movies with her legs pulled up and heating packs on her tummy. She has also thrown up a few times yesterday and once this morning which we are thinking is due to the morphine. They want to back her off the morphine drip but want to wait for the pain to back down. Thought we were making progress yesterday, but now I'm not so sure. Seem to be just as bad as Thurs or Fri. To be determined as day goes on.

Still a waiting game.

Madeline Petting Dogs

Here's a pic of Maddie getting to pet dogs that they sometimes bring by to cheer up the kids. It's amazing the effect it has on them to be able to pet, feed, brush, and interact with these wonderful pets. Maddie's favorite was the full size poodle that would shake and wave. As far as a dog's life goes, these dogs have it made!

Maddie's First Lost Tooth

Well, it's official! Maddie is a big girl now! A toothless one, but a big girl. She lost her first tooth on Friday, Sept 25th. She said, "Daddy, look at my tooth." I went over and saw it was hanging by a thread and told her, "Pull it out!". She reached in a gave it a tug and Viola! The look on her face was priceless. She immediately had to look in the mirror, call Mommy, and call in all the nurses. Johanna, one of the great Child Life Specialists here, brought in a personalized and decorated box, specially for the tooth. Maddie was proud to say the least!

Pancreatitis, Sept 2009

Madeline came into the hospital on Sunday, Sept 20th with severe abdominal pains. After an all-nighter in the ER, where they were flooded with Swine Flu cases, we were admitted early Monday morning with pancreatitis. Maddie had gotten Swine Flu on Monday the 14th and gotten over it in 48 hrs but the acid her body lets off while fighting a major illness insults the pancreas and she gets pancreatitis. Her Lipase and Amylase (pancreas enzymes) were elevated and pain was very bad. We basically judge the progress of getting over pancreatitis by her pain decreasing and appetite coming back and tolerating feeding. It is usually a 8-12 day ordeal.

This case has been unusually bad for Maddie because the pain is very intense and is lasting longer than usual. All of her bloodwork looks good, but her tummy is in very bad pain and unfortunately it is just a waiting game while trying to manage the pain with a morphine drip and an increased 'hit' of morphine when needed. We have also had several dramas of moving rooms twice, her port not working, getting/losing IVs, pump/tubing malfunctions, monitor malfunctions, etc. that only add to the discomfort.