One step back

I like how she crosses her arms. First time I noticed it. 

Learned to keep her pacifier in already.

Trying to cool off from the fever.

Self-soothing. 

The nurse is taking her temperature. Bela hates this more than anything!

I, Laura, spent the night last night. Well, I got to sleep from 4-8:30am.  Bela did not get her PICC line placed yesterday because the line kept getting kinked up in her neck and wouldn't go down next to her heart.  But the night nurse last night and the day nurse today both were able to draw blood from her central line on her chest. But they'll still have to change that central line in a couple of weeks because it is the source of some infection.
Last night she didn't cry but we could tell she was uncomfortable: very fidgety and wouldn't relax.  So after giving Tylenol for fever and Morphine twice, the nurse also gave her Ativan around 4am and then she went to sleep until about 12noon today.

She is still running high fevers, on blood pressure meds, Lasix, etc. Her blood pressure was a little bit better two nights ago though when no one spent the night there. Last night the nurse was the same as two nights ago and she said that she didn't have to give her any blood pressure meds two nights ago, but last night she did because she was in pain. You can see the tan gauze on her left arm. That is where they tried to insert the PICC. She let her arm hang limp a lot and when the nurse first touched it last night Bela screamed and cried. But Bela calms down pretty easily and quickly. She is very strong, the nurses say. One told me that he's seen  other babies that are ALWAYS restless, especially when they can't eat for extended periods of time. I've prayed for God to fill Bela's stomach so she doesn't feel hungry and she doens't seem to feel too hungry.

Today her potassium was too low for them to try to insert the PICC again.  The Lasix causes it to go low, and low potassium causes her abdomen to distend more, which is did today.  So they added more potassium to her IV cocktail of vitamins and minerals, but they needed it to get into her system faster, so they moved her this afternoon to the Pediatric ICU, or PICU, to give her extra potassium through another IV, which they have to monitor, especially for her heart. So she will spend the night there tonight and we are all taking a break because she has her own private nurse who will stay in the room with her all night.

I feel impatient. I know I need to have patience. I know in my head this will all be over soon and we'll look back at this time and say, "Wow, has a year gone by already?!", but right now, there's so much new territory we have to cover before she will be "free and clear", and with two steps forward we take one back. It's slow and the last two weeks seem like 2 months. The doctors have another theory on the table about why her liver's still so big and that has to do with a metabolic/genetic problem that they also can't test for until her blood numbers go up.

But we are grateful for so many things: our Great God, praise music, family, friends, and great doctors and nurses.

Please pray again, and again, and again for the following...
1. Her fevers to go down
2. Her infections and inflammation  to heal
3. Her blood pressure to normalize and her liver and abdomen to shrink to normal size
4. Her potassium to normalize
5. Her counts to go up

...and over all, for her to heal completely.

Thank you all!!! 

A full day

We had a great visit yesterday with our wonderful friend Scott 

Nobody spent the night with Bela last night. It was nice for us both to be home with Santi.  The day nurse yesterday told me that the night nurse was going to be in Bela's room at least once an hour to give a blood product or an antibiotic and that if we were expecting to sleep then we better not come, plus with them in the room a lot we knew she wouldn't get lonely.

She did really well and didn't have to have any pain meds. She does have a new infection, a blood infection. If we go to visit and stay in the room we don't have to be too careful. But if we go in and out of her room, say, to the family kitchen where we are touching common items, like the coffee pot, we have to wear a gown and gloves while with her so that we don't spread the infection to other Immune compromised patients.  The doctors switched some antibiotics out and are giving her some new ones. I don't really take notes anymore because I know the doctors don't want to stand around telling me how to spell all of the medical words, but they give me print outs of all of her side effects and medicines and I keep them in a folder at home.

She did have a "Peripherally Inserted Central Catheter", or PICC line this afternoon so they can draw blood from it since they're no longer able to through her central line (seen on her abdomen in the foto above.)  That's why she received more blood products through the night last night so her body would be ready for the procedure.  The line is inserted in her arm and threaded through inside up by her neck and hangs down inside next to her heart. She can also receive fluids/meds through it .

She is still on blood pressure medicine but only had a low grade fever today.  She is still receiving Lasix once a day since she is still receiving so many fluids.

The doctors and other staff, who are ALL wonderful!, are all still very positive about her prognosis and say she is stable. They have seen other patients go through what she's going through so they are very well equiped to take care of her.  She only finished chemo 9 days ago and we were told it could take about 3-4 weeks total for her to recover from chemo, so starting next week she should start showing signs of improvement: no infection, no fever, no meds, and all all of her blood counts should start going up by themselves. I am looking forward to next week! yea!

I learned today that just in the family of Leukemia, there are different types and subtypes. Kids with Acute Lymphoblastic Leukemia (ALL) only have their blood counts go down for a short while and then shoot back up, while kids with AML like Bela have their counts go down and stay down, which is why they are more susceptible to infections, etc.

So excited to go to the Aquarium! Santi took this.

We're taking one "family day" a week.

Playing outside on the playground where some fish "statues" shoot water.

Sharks!!!

A sleeping seal or sea lion?

Beautiful jellies with electric currents that shine colors when running.

Petting starfish and anenomes 

GIANT crabs

Feeding broccoli to a ray

Fighting over the broccoli

I found this handsome thing at the fountain outside. Lucky me.

Enjoying the shooting water (not pictured)

Beto's first upclose encounter with a lighthouse.

Never a dull moment

Many of you may know that my cousin Bailey was injured in a car accident a couple of weeks ago. she is currently at Memorial in the Rehab wing, doing very well. Tonight we went to a fundraiser for her at Mimi's Cafe where she worked and we had a great time. You can tell my aunts had an especially good time though. 

still waiting...

Not much to report today. She had a good night with me last night. She was awake a lot but wasn't uncomfortable or in pain.  I finally crawled onto the "bedchair" at 4am. Let me say that very early morning TV is not very kind to insomniacs!  I tried to sleep, but got woken up about once an hour by the lab techs, nurse, doctors, food staff, and housecleaning. But Bela's a trooper, she goes right back to sleep.

Started to pout....

...then changed her mind.

For my sister Amy

In her new swing. We got her looking just a little bit more comfortable after this was taken.

The nurse giving her "liquid crack", aka Sweet-ease ("sweeties"), given before a painful procedure to reduce pain and  crying. We were taking the tape off her two blood drawing sites and her face. No more tubes!

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"No tubes or tape on my face!" The dr. likes her chubby cheeks. Even though she's been off feeds for a couple of days and will be for another week (but we're praying for less), she's gaining weight. She's a little over 10 lbs. now.

"awww...she's so cute!"

"Tickle Tickle!"

 She recieved platelets yesterday and today. She's having more low grade fevers more continuously and high fevers off and on. These "burn up" the platelets which is why she had to have two transfusions in just 24 hours.

She is still on blood pressure medicine and lasix once a day, as well as her nutrition and antibiotics. They added another antibiotic, Flagel (sp?) for a low risk type of infection around her central line. They will have to have another surgery once her numbers go up to remove her central line and place another one. This one is in a vein that's too small to draw blood, but they are still able to give her medicines through it. In the meantime they may place a PICC line in her arm. Today when they drew blood they just did it like they do in adults, in her arm and hand.

Her liver is still too big and they want to do a biopsy but will probably do it at the same time as when they place her new central line.

Otherwise things are fine and the doctors think she looks good, we just have to wait for her counts to go up.

Please be in prayer for her liver and her central line, that it will go down on its own and that the central line will start to work again like it did in the beginning, so they don't have to do surgery.

And I was thinking a lot about something I wrote yesterday: "They can't give her Tylenol because of her intestinal inflammati

on. So we are counting solely on your prayers and God's mercy and healing power!"  

We ALWAYS rely solely on prayers and on God, yet sometimes I as a mother want to "do something" in the meantime. I hope you hear my heart on this and know that we realize Bela is in God's hands.

Thanks again for all of your prayers. We know she will continue to get better. Praise God.