Food and Fun- Day 29

We survived!!!

Rowan completed her rituximab treatment around 6AM this morning without any complications overnight.

She slept fairly well with her benadryl, Tylenol, and hydrocortisone cocktail... I on the other-hand, was up all night hearing her pump go off.

As soon as she woke up for the day, we went on a car cruise- Rowan was SO happy. Her little face just lit up. (precious!)

After medications, I went to the hotel for a nap while Sancie watched our trooper.

I returned with lunch. For the grown-ups... But Rowan decided it was much better than her hospital tray.








Too bad this last one is blurry... But she was feasting on a turkey burger with avocado- and a side of sweet potato fries.

Then it was off to the races!



Angel girl was SO happy today!!!
Yay!!! Our baby is back!!!

Must feel good to have a more normal hemoglobin!

So, as you can imagine- we put tire marks in the halls and enjoyed every minute not being attached to the lines and wires.

Plans are still to leave the hospial and check in to our hotel on Saturday!!!

Wonder what the labwork will look like tomorrow?!

Chance will be driving in tomorrow night- woo hoo! We've missed the daddy!

Rituximab 2nd Round

We're surviving!

Today Rowan had is still currently having her second rituximab treatment.

Because of her reaction last time, this infusion is running over 19hours!

They pre-medicated her with benadryl, tylenol, and hydrocortisone... And continue every 6hours during the infusion.

So far she only had one little episode of grunting while breathing with an increased heart rate. But it was nothing like before- and we've pressed on.

So proud of this kid! They treat cancer patients (including my aunt) with this drug. Ro. Is. Awesome.

The physicians seem to think this may be our golden solution to her autoimmune hemolytic anemia issues. Her hemoglobin today was 10.1! And the reticulocyte count came down very slightly....

She's doing so well they have even agreed to switch her to the oral steroids---

Drumroll please.........
....
..
.


And we have tentative plans to be discharged to a hotel on Friday or Saturday!

Rowan would be re-admitted on Tuesday or Wednesday for her third rituximab treatment, but at least no interruptions and sleep for a few nights.


Last night the overnight accommodations with juju went well. And this morning we raced down the hallway..





Before this...



Thank goodness the medications have made her drowsy today. It's hard keeping this munchkin from pulling at all of the monitoring equipment and lines.

Rowan's liver is still performing at top notch and we couldn't be more thankful!

Seeing a light at the end of the tunnel is giving me an adrenaline rush.

Our family and friends don't know how much they mean to us--- THANK YOU!

Praise God and give Him the glory!

Day 27 TCH Update

Chance was on call Saturday night, but when the coast was clear, he drove to see us in the wee hours of Sunday morning!
It was so good to see him, but he had to leave Sunday night for work on Monday... Thanks daddy! You. Are. Awesome.




Judy, Dylan, and Devin all came Sunday and Rowan was obviously glad to see some new faces:)











Our nights are practically sleepless once again thanks to this girl's crazy hungry appetite!

Tonight I am sleeping at a hotel and JuJu is going to take over the night shift!

Our primary GI md, our very favorite, is here as the attending on rounds for the next two weeks and I couldn't be more excited!!!

We have already chatted up and discussed all my concerns--- and he's on it!

Tomorrow Rowan will have her rituximab treatment again tomorrow. They will start pre-medicating her at 0730 with benadryl, hydrocortisone, and Tylenol.

Maybe she will sleep a good bit in the morning. I'm gearing up for a tiring day of entertainment as she's going to be stuck in the room all day. No cruisin' tomorrow...

Cruisin'

Friday and Saturday have been much of the same...
Eat


Cruise around in the hallways


Nap
sometimes the nap is omitted due to the loud construction or the need to eat and/or stroll around some more.



Repeat!
And repeat, and repeat...



(breakfast eyes are still tired)






We've changed outfits several times due to poop outs...




What? Laundry?




We've also attempted escape from the window a few times.




Medically, Rowan's reticulocytes are still climbing higher. However, due to the numerous side effects of these steroids, our GI doctors have convinced the Hematology peeps to decrease her steroid dose to every 12 hours!!! Yay! A step in the right direction- if the dose can be weaned further, then we can start taking them by mouth. (and not here)

The nights have been better as well. Less irritability and only waking up every 3 hours for food.

James 1:2-4
2 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.

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Jekyll and Hyde

Rowan had her first rituximab treatment yesterday afternoon, but it didn't go so well. During the middle of the infusion she started to experience some respiratory distress. (tachycardia, rapid breathing, sats 80s, sbp 150)

They stopped the infusion, and she recovered well.

Because this is a chemotherapy type drug, we will wait for a week before trying again. They gave Rowan benadryl and tylenol before the infusion this time and they will continue that again the next go round, but not run the infusion so quickly.

It could take 3-5 days before seeing results, but maybe because she received about 1/2 of her dose, there will be some change in her numbers.

Her reticulocyte count is 15 today. We cannot get off IV steroids and out of the hospital until it is around 5.

The days here have been great! Rowan has been happy and playful. Today Tara painted her toenails!


I called Chance and he said in a sad, my girl is getting big kind of voice "but my baby is too young to have her nails painted"

They look so cute and she's already received tons of compliments:)




















Buuuuut. The nights have been terrible! I'm calling it roid rage, because she wakes up screaming... We've tried milk, Tylenol, and gas medicine, but nothing seems to help. Eventually, she takes her bottle and is off to bed for a few hours before it starts again.

Maybe tonight will be different....

Rituximab Therapy

Day 22 in the hospital.
Day 18 on high dose steroids.

Rowan's reticulocyte count went up today, so our hematology team decided it was time to start the rituximab. This will be our third attempt in treatment to fix Ro's autoimmune hemolytic anemia issue. (1.steroids{ongoing} 2. IVIG)

In a brief nutshell, you have B Cells which remember what made you sick and prevent you from getting sick in the future. by remembering the illness and how to fight it. The rituximab will kill all of Rowan's B Cells- good and bad.
By erasing all of these B Cells, they are hoping that the faulty ones, causing the attack on Rowan's red blood cells, will stop wrecking havoc.

Today has been such a good day for her: smiling, reading books and acting more like my RoBaby...











It's hard to believe there is such a war going on inside her precious little body.

The unfortunate thing is that the rituximab treatment will not show any results quickly. It could take 3-5 days before we see a change in numbers, and then she could receive this IV infusion given once a week for up to 3 weeks before ultimately seeing the desired result.

In the meantime, she will continue on the steroids until the reticulocyte numbers are satisfactory before weaning them to an oral version.

Everything is just getting complicated and more complex.
•Ro started taking Amilodipine again for an increased blood pressure (secondary to the steroids)
•She also is now taking diflucan as a prophylactic (preventative) medication for other infections due to her extremely suppressed immune system (secondary to steroids as well)
• we still have a starving child willing to eat everything in sight, and we are struggling, but succeeding in the formula restrictions (thanks again to the steroids)
•the Lovenox (blood thinner) injections are going fairly well. She has an implanted catheter similar to an IV in her thigh which allows us not to poke her for every injection. It still burns going in, but at least this device helps to prevent the knots that can develop from frequent pokes.

Some baaaaad habits we are developing:
1. Eating all night long- I seriously feel like I have a newborn again. We are now up every 2-3 hours eating... Or trying not to...
2. Only sleeping when being held- yikes baby must need to feel some security!
3. Pacifier is back- But only when sleeping, or trying to, again, distract from food.

What are we ever going to do when we get back home??!! There are going to be some serious adjustments...

But we've been through a long hospitalization before- so I feel prepared.

It often feels like a rat race, or groundhog day, but there is always something new.
Today, we've got major construction and renovations going on one room over :)
And we spent hours hooked up to three different machines for the treatment- so there's been some spice.

And if you think Rowan sounds bad, let me tell you- there are so many other poor children here who have it much, much worse.

I can't wait to hear Woody tell us "give it up Ro, you've reached the end of the line" and then we'll get off this little ride and go back home. We have watched A LOT of Toy Story 3. So much so, that I find myself quoting it throughout the day. For example: Rex at daycare "why can't time go faster?!"

Anyway-
Thank you still so much for your continued love, support and prayers. We feel so surrounded with assurance that God's plan is going to see us through this and onto the next chapter.

It's. Just. Not. Simple.

Just when we thought maybe home by this weekend... Wrong.

Reticulocytes: immature red blood cells.

Several weeks ago in PICU, Rowan's reticulocyte count was practically non-existent. This meant that her body was attacking the mature and immature red blood cells making it impossible for her hemoglobin (red blood cell count) to come up.
Now her reticulocyte count is too high. Good grief Charlie Brown! Why can't this just be simple?

It is good that Rowan now has reticulocytes because she is able to support her own hemoglobin count without needing transfusions.

However, the increased number is now concerning. Her body has basically been in overdrive working very hard to make these new red blood cells. And it looks as though she's not enjoying all of the fruit of her little body's labor.
For her reticulocyte count to be so high, they would expect her hemoglobin to also be higher than it is.
In conclusion: her body is still attacking her red blood cells, just at a much slower rate than in the weeks past.

The goal was to wean the steroids, which she has been on for over two weeks now, but it appears that would not be a good idea at this time given her current situation.

Rituximab: a potent drug, appears to be our next option. It wipes out all of your good and bad B Cells (yet another component).

Tomorrow they will make the call as to if we will proceed with this option, so I will post more tomorrow if this is the route we go.

Earlier in the day some child life friends watched Rowan while Chance and I ran a quick errand-- together. It was so nice to have a few minutes alone out of the hospital!

Here are some photos of Ro while we were out:





Sorry they are sideways:/

The formula restrictions overnight were a little troublesome. Poor RoBaby gets woken up so frequently for meds, vital signs, and the pump alarm that it's difficult to get back to sleep. Usually it requires some food... So you see our issue.

Our GI doctor came by to visit Rowan today just to chat and see how she was doing. We absolutely love him! How blessed we are to have someone who cares for Rowan so much be her primary MD.

Double Trouble!

Chance spent his second Father's Day in the hospital. But, it's all worth it for our baby girl.
We had some very tasty food and spent time cruising the halls!




Well- this is the look we often see...


But sometimes we get our pretty girl smile.



Look at that huge tummy!

And speaking of tummies: we may have a Revelation!
Rowan has continued for around 7 days now to have a huge, distended stomach with gas and tons of poo.

Today we realized she is consuming double the amount of formula than at home!!! Typically she eats around 24-25ounces per day. Here lately, that number has been 45-50 ounces!!!

AGH- no wonder she's having issues.

This is all due to her whopping dose of steroids:/
We have successfully weaned from getting her dose every 6 hours to every 8 hours, but we still have a way to go.

Oh, steroids we love hate you:)

So far, with our formula restrictions, the day has been much better!!!

And more teeth--- 11 total now!

The Great Migration

Friday we spent time with visitors and enjoyed the day without being attached to the monitor (thanks to mom's persistence and a very nice resident)

Rowan is fortunate to have so many people who love and care for her on her team. She's had past nurses, child life, the dietician, and some drs stop by the room over the past few days to check on her... All of whom were there on their own time. Not to mention friends and our family.

We truly have the best support system! All of your thoughts, prayers, messages, and texts mean so much. It makes this difficult time so much easier when you know you are loved- and we feel it!




Today marks our 19th day here. (and apparently I am getting my days confused because the "day 15 TCH" post was really day 17)

The day we have been waiting for has finally arrived-we made it back to the 12th floor!
It may have been at 1am, but the view is awesome!

Unfortunately, Ro hasn't really enjoyed any of it. Her tummy is really giving her fits. We've experienced screaming like we've never heard before:/

She pooped up four diapers in about 10minutes...

When GI came we begged for something, anything.... Ro is just not right. Eventually they agreed and we started her on flagyl (antibiotic). But after the poop/gas/screaming attacks continued, they ordered an ultrasound.

The ultrasound was super quick.





No results yet, so everything must look ok...

In the meantime, we will continue to clean what continues to come out.

Day 15 at TCH

Lets play a little: Pro-Con-Pro

Pro:
•Rowan's lab work continues to please our doctors. She still hasn't required a transfusion since the 14th!

Con:
•We are still trapped on the 7th floor:/ tethered to monitors and missing our lovely nurse friends on 12. Don't get me wrong, we haven't had a bad experience here, but we are ready for some freedom from the monitors and all the noise that comes with them! (especially since we have 12th floor orders and have been waiting for 3days now!)

Pro:
•Ro had a fun time riding in the hallway on our break from the wires.




Unclassified Category:
• Rowan is cutting not just teeth, but molar teeth! :0
Could this be the reason she's been fussy too?
We were admitted with 4 teeth and now she has 9! (if you count the ones still pushing through- but they have broken the surface, so I say that counts)

•mds say the diarrhea is most likely a virus :/
But the good thing is that it's mainly gas and normal poo now- just lots of it.

Wish we could get some fresh air- Rowan is feeling better and I know being corralled is causing her grief too. Usually at home if she gets fussy and it's not related to sleep, we go OUT and run errands to get our minds off of being fussy. In the hospital out is either the hallway or a courtyard on the 4th floor.
Oh 12th floor room please open up- we're trying to be patient, but it's kinda rough with a 1yr old.

Because her anemia was so severe, they are going to take it very slow weaning the steroids. They might not start until Monday, so that puts us in the hospital until at least thurs/fri of next week. Praying that she won't have any issues during this time.

Another Pro:
Daddy comes tomorrow!!! He has been working, so we've missed him!!!
Although, we have had great back-up in his absence:)

We've Moved!

Tuesday we waited all day for our room on the coveted 12th floor, but they were full.

The charge nurse let me know Rowan would be staying in the PICU again overnight.

I left around 10pm and headed to the hotel.
At 1130pm the phone rang with news that Rowan would be moving to the step down icu (7th floor).

For all of my nurse friends... You know the drill. ED gets slammed, and then beds magically appear.

One just didn't come open on 12.

Ro was NOT happy. I snapped just this one picture:



At midnight- moving everything...

Today felt a little less like jail. The room is much bigger, and we walked the hall twice off the monitor. (on the 12th floor, Ro doesn't have to wear a monitor- so she's much less tethered and that horrible noise isn't alarming all of the time!)

Today was still fussy due to GAS and a distended tummy- but no diarrhea! :)

Crossing our fingers we make the BIG MOVE UP tomorrow!

Otherwise, liver and blood numbers look very good! Amen!
Weaning the steroids starting Sunday, so praying that trend continues.

Dr "House" came by today and said his feelings were positive!

Escape

Lots of things escaping today... Mainly poop :/

1. Lots of gas
2. Diarrhea
3. Distended belly
4. Uncomfortable/fussy baby

No clues as to why... Maybe tomorrow will bring new answers.

Otherwise, medically doing great!
We have orders for the 12th floor again, but no bed-

We also escaped from the room with permission to be off monitors:)
It. Was. Awesome. (thanks yo gabba gabba)

The moment we started walking down the hallway, Rowan was all smiles! It was too precious!






The lovenox went pretty well-
I will have to explain her little device later...

Maybe tomorrow I will have the energy to post a blog with some substance... There are still so many details. Plan is to stay in the hospital until at least next Wednesday.

So thankful for our beautiful baby, friends, and family! We are too blessed!

Anemia Update

Ro has been making slow and steady progress over these past two days.

Tonight will be the first time she has received a transfusion in almost 2days- yay!

Her body is still attacking her red blood cells, just at a much slower rate.

She will continue on the IVIG until Friday, then start to wean off the steroids.

If her body begins to rapidly attack her red blood cells again when they start to wean off the prednisone, it may be her prograf causing this AIHA (autoimmune hemolytic anemia).

We will find out soon enough how it goes:)

Daddy is at the hospital for our first lovenox injection. I'll ask for the report... Glad I wasn't there;) although it's going to be a twice a day thing from here on out for a while.
(Turning off the IV heparin, and switching to our shot form of blood thinners.)




Paddy cake, paddy cake.






We love to read!

Most likely getting kicked out of PICU tomorrow. Hoping we could go straight to 12(our favorite floor), but Ro is still too fragile and busy for them to monitor. So, we will probably move to PCU (step-down icu).

Ro has been fussy today on and off and I am worn out from trying to entertain...
Thanks for the thoughts and prayers!!!

The Difference of a Day

Wow- what a difference one day makes!

Yesterday was rough. We all felt beat up, exhausted, and disheartened.

[side bar- Chance works nights at work. Naturally, I am a normal person on a "day shift". Instead of Chance switching back to a day schedule he has remained on "night shift". He stays up with Rowan in the PICU all night, then I come relieve him in the morning. Best. Thing. Ever.
I no longer worry about her overnight, and she gets the best 24hour nursing care possible ;) and thanks to the grandparents for filling in on breaks, etc!]

So, now for something of substance:

Last night when I left they just switched Rowan to a high flow oxygen system in hopes of preventing fluid accumulation in her lungs.

She received the IVIG overnight and two units of blood....

This morning-
A much more stable and much better looking child greeted me when I arrived! There were even smiles!









(sorry, I can't flip it.... But here's proof of the smile!)

Overall, she just appeared much more "rested" and rejuvenated! And that spunk continued throughout the day.

She was still sleepy, and nowhere near 100%, but small change in the right direction is Great news!

Also, her hemoglobin jumped to a whopping 7.9! WoooHooo!

We still aren't sure what is causing the anemia. We have the "House" of Texas Children's Hospital working on her case- seriously!!!

I am blown away by all of the messages, wall posts, blogs dedicated to Rowan, and texts! I read every single one and you can't imagine how much it warms my heart! What an inspiration it gives us!
I am sorry for not getting back to many of you. The reception in Ro's room is not very good, and often times she is falling asleep in our arms. We've also got lots of entertaining to do and doctors to speak to.
But again, thank you so very very much!

Lots of you have asked what you can do to help us. Chance and I are doing well. We are so very blessed with such wonderful parents who are fabulous to us and baby Ro.

But, what you can do, is donate blood. Not for Rowan, but anyone! Ro has had somewhere around 14 units of blood. As I said before, she doesn't even have any of her own red blood cells left!

If you are able to go donate, think of us and encourage the people you meet along your way there to donate as well.

Also, register to become an organ donor! DonateLife.net
(for some reason, my hyperlinks never work- sorry... It's donatelife .net if that one didn't work either)

Rowan's liver is still kicking butt and takin names- amazing!

And keep praying! It is inconceivable the power of God, and we feel Him moving mountains for our angel baby Rowan.

I will leave you with this beautiful picture of our girl:









Amy Blackburn Photography.

Amy shot our wedding and took some gorgeous pictures of Rowan a few weeks ago for her one year photos! I can't wait for you to see more- Ro looks Amazing!!! They brought tears to my eyes this morning seeing Rowan how she looks now all bruised and puffy with tape, leads, and tubing everywhere compared to then. But she is still beautiful to us now, and continues to be our trooper whom we love so dearly.

Thank you again for everything! Go Donate- and make the world a better place!


Also- I changed up the blog to make it easier for mobile viewers... Hope you like that.

Complicated Conference

This was the board after our conference with 13 doctors!

Rowan's clot, anemia, and declining status have put her into a pickle, so we had a meeting of all the specialties to make sure we were on the same page and to do a little brainstorming.

Still on the steroids, but starting IVIG. (You guys are just gonna have to look this one up if you are interested... I'm too tired to explain, and it's a little complicated.)

Hopefully, Rowan can hang on. Her body is wearing down and there's been talk of intubation.

Heparin- for clot.
Clindamycin- maybe infection? No fever, negative cultures, but increase heart rate and respirations.
Methylprednisone- the steroids.
Blood- Rowan has none of her own red blood cells anymore!!! She's had THAT many transfusions!!!
Protonix- prevent stomach ulcers.
High flow oxygen.
IVIG.

Blessed to have a very smart healthcare team and our education as nurses!

This is complicated!!!

Blood Clot :/

Things happen for a reason... Rowan did not get a room on the 12th floor yesterday...
Today we are back on the PICU service, so it's a good thing we didn't waste all that time and energy switching rooms!

This morning Ro was super uncomfortable and fussy. She just couldn't sleep, couldn't get comfortable, couldn't eat...

When we took off her long sleeved PJ there revealed a big red puffy, swollen arm :(







After an ultrasound, they determined Rowan to have a pretty occlusive blood clot.

Tylenol seemed to give her a little relief- thank goodness. She finally was able to take a nap.

She was started on heparin (and will have to go home on lovenox shots twice a day for at least 3 months...)

The heparin (anti-coagulant/ blood thinner) will continue IV until she is in a therapeutic range and her body dissolves the clot.

She most likely received the clot when they attempted to put her picc line in that arm. They were unsuccessful, and she was at an increased risk for clotting due to her anemia.

So- we are still rockin the steroids for her anemia. Still replacing her blood. Still having an awesome liver... And still staying in PICU.