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Monday, November 8, 2010

Petechiae

We started off the day thinking we were going to get a NG tube put down Ella's nose in order to be able to get some food in her stomach. We only ended up with petechiae!!! We haven't seen petechiae hardly at all since before Ella was diagnosed. For those not familiar with the term, petechiae are little red spots that show up when your platelets are low and there is strain in your body such as from crying. As luck would have it, Ella's platelets are quite low just due to her counts dropping and she was crying hysterically while we tried to do the NG tube. Ever since starting treatment, Ella's platelets hold very well other than when her counts are low and I guess she hasn't had any reason to cry so hard during any of the previous rounds when her counts were this low. So, although there is no reason for concern at all at the sight of these pesky petechiae, it still is no fun to see it on her face. You may have to enlarge the pictures to be able to see it very well.

As for the failure of the NG tube, as soon as we had her lay down on the table and held her down, she started crying pretty good, then as they quickly placed the tube in her nose and pushed it down her throat into her stomach, she went hysterical. With her having tiny passageways to begin with, once she started crying, things got real tight and they had a hard time getting all the way to her stomach. Then it would kind of push itself back up as she gagged and cried. They tried it twice and then said that's enough!!

Today has just been kind of a rough day all the way around. It seems like ever since we tried to do the NG tube, she has been grumpy off and on. Oh well, tomorrow is a new day. However, we may try the NG tube again tomorrow using some heavier sedation so that they can at least get it placed correctly. Standby for that outcome!!

As for mommy, I am feeling a little bit weary!! Tonight I had to miss Emma's playoff soccer game and it is times that this that it sucks to be stuck here at the hospital. I just look forward to being able to take care of my whole family in the same place again!!









22 comments:

Tina said...

Oh God poor poor Ella, I feel so terrible just reading what she has to go through. The word petechiae did scare me there, as you can imagine I'm not very familiar with all the terms but words like that do scare me. I pray that everything is going as well as can be with Ella, if only she would start taking her bottle again, she could have spared herself that horrible ordeal, that must have been so hard on her and on you too. Yes can't wait till all of you are back under one roof, doing what a family should be.

Prayers for Ella continue, stay strong my sweet little one, it's really hard I know but it's all going to be over one day soon. Sending positive healing energy your way, also prayers to start eating again. Hugs and much love

stephanie said...

oh Miss Ella, certain things make me upset and just the title to this post gave me an ugly feeling. I hate that P word. Seems like nothing good is ever behind it. And that stinkin NG tube!! Just thinking about that horrible ordeal Ella went through brought tears to my eyes. can I ask a stupid question? Why can't they knock Miss E out to place the NG tube instead of trying it over and over again while she is freaking out? i was glad to read they would go for a heavier sedation next time.
Denise this post broke my heart! Praying for Ella today in a special way.

Karol said...

Hurting with you. Praying for you. Sweet Ella, I'm so sorry you have to have all this dumb stuff done to you!!!!

Kristen's mom said...

Kristen only had to have the tube once and she hated it. Can they put her on TPN instead of the the tube? She will probably only need it for a few days.

You're right, today is another day.
Thinking of you.

Bulldogma said...

Poor baby! We tried the NG thing this past summer when The Skink was in the hospital, and no... it didn't work!

I feel for you and for sweet Ella! Y'all are in my prayers!

Rachel said...

Prayers that today is better than yesterday. Who knows, maybe today she will decide that food is better than a tube:) Hope everything goes well.

Chris, Becca, Abby and Jocelyn said...

:( So sorry that Ella and Mommy are going through all this! I love your attitude that today will be a new day:) I hope today is better than yesterday and Ella starts to feel better and maybe eat a little something! You are an amazing Mommy Denise. Praying for you.....

Lori said...

{{Hugs}} to you and to Miss Ella! What a rotten day. I am so sorry.

I am praying for Ella to start eating on her own so the whole NG tube can be avoided -- but if it can't I am praying that they are able to get it inserted without too much stress on Ella (and you!).

Now -I am going down to your next post so I can watch some Ella silliness. Hopefully it will help dry my tears that I pour out for her and you and your family =) You are all such strong and beautiful people. Please know that you are in my heart and prayers.

The VW's said...

Poor sweet girl! This breaks my heart!

I would have been fighting them too! Keep fighting them Ella! This fight that you have is what is going to get you through all of this!.....But, you do need to eat too sweet girl!

Hope today is a better day! Love, Hugs and Prayers!!!

Jennie said...

Oh, sweet Ella. I'm sorry to hear she's not feeling well and that her platelets are down. Continuing to pray...

Michelle said...

I am so sorry...you both have been through enough...time for sunshine and easy, peaceful days ahead. Until then friend, lotsa prayers coming your way!! Love you guys!xo

Rochelle said...

Hang in there Denise, prayerfully this too shall pass and she will be eating in no time. I know it stinks in the moment though. Praying that she zooms back to her normal self and you guys can get out of there to be with the family for a while.
Hugs to you both!!

Patti said...

a litlle bit weary? you need a giant CROWN stuck on your head! I cannot imagine what you are going through as a mommy, Denise. I am praying for you!! and for Ella! hugs!!

summer said...

I am so sorry and my heart just breaks for all of you as Ella has to endure so much!!! Please know that you are always in all my thoughts and prayers!!!!! I sure hope that today is a BETTER day for ALL of you!!!!

Zoey's mom said...

Just sending love and prayers my friend and the promise that this too will pass and home will be on the horizon shortly and then,in no time,for good.What a glorious day that will be!As I said before,the last rounds,are tough.Physically and mentally more so.She is tired.Her body is tired.You are all tired.Wish I could lift this from you.I remember it well and hate seeing anyone go through it.

I'll call later.Kiss the girl for me please.

Runningmama said...

Oh wow...that's makes me so sad to think she cried so hard she ended up with the all too familiar petichiae! I am praying for this to all get better soon! After you go home this time...just think, just one more round and you reach the finish line!

Donna said...

I am so sorry to hear that Ella had such a rough day yesterday. I hope that today has been better for her. My heart goes out to you as you are dealing with something no one ever wants to face. I am praying that Ella will start to recover and that the NGT won't even have to be used. Sending you hugs and love.

Alaina & Kyle said...

Oh that does not send plesant at all. I am praying for all of you to get out of there quickly!!! Poor little Ella!! Stay strong you little fighter.

Lacey said...

Ugh, I can't imagine seeing her being held down and trying to shove that NG down. No fun. Just start drinking a little sweet girl, for us!

Sweet Pea's Mommy said...

Sorry today was so hard! I hope that tomorrow is better!

EL said...

Oh sweet baby girl.. hang in there. You're both doing such a great job and are so strong. We will continue to pray. You are precious to so many.

Kelly said...

So sorry to hear that it was rotten day!! I can only imagine what you are feeling, but I can assure you that we will continue to pray! Sunny days are just ahead!! Hang in there friend!! Thinking of you guys ALWAYS!!