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!