Posted (Tina) in All Posts on May-4-2009

Ella did not have any therapy sessions today, so I decided to take her on some errands. Once again, she enjoyed the car ride.

For the first time, I took her to the grocery store and placed her in the cart. I figured it was time to try since she is able to sit up. She did really good. As long as I was moving and not stationary for too long, she was good with the experience. Thankfully, it was a ghost town – – there might have been 4 people in the entire store. So, the risk was minimal but I think it was good for Ella. She has barely been exposed to the outside world. Doing normal things are good!

While we were shopping, there was an announcement, “Clean up, aisle 7!” Actually, that is not what I heard over the loud speaker. Although, it was still a little strange. The store manager made an announcement that they were going to be turning the lights down low for about 5 minutes while they tried to get a bird to vacate the store. So, Ella’s first time to the store included very dark aisles. In between, I tried to snap some pictures but there was so much going on that she was not interested in the camera.

This past weekend, it seems that Ella’s snotty nose finally went away. So basically, we were not having to wipe her nose every 5 minutes and following every sneeze. But, I still feel bad for her because she has a lot of congestion as a side effect of a medicine that she takes – Sildenafil. And then teething is still going strong, so she creates lots of extra saliva. In combination, it creates lots of retching while she is trying to manage all the secretions.

Since she had a cold, her oxygen requirements went up. And although she is congested from the Sildenafil, she is back to her baseline. And yet, it seems like the oxygen requirement has stayed higher. Her heart rate has been much improved since her SVC procedure, but it does seem like the oxygen requirement has crept up. This might mean that she is clotting near the stent and it is making the opening of the SVC less effective. Right after the procedure, her oxygen requirements went way down. But now, they are slowly getting higher again.

We have a pulmonology appointment on June 9th and we are scheduled to get another EKG and echocardiogram. Since the last test was inconclusive, they want to try again. And now that we think we are seeing some clinical signs, that is probably a good idea. It might be the SVC or maybe she does need more diuretic. It’s so hard to know. Our hope is that she will continue to go in the right direction, but only time will tell.

Psalm 40 (NLT)

I waited patiently for the Lord to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be amazed.
They will put their trust in the Lord…
…O Lord my God, you have performed many wonders for us.
Your plans for us are too numerous to list.
You have no equal.
If I tried to recite all your wonderful deeds,
I would never come to the end of them…
…I have told all your people about your justice.
I have not been afraid to speak out,
as you, O Lord, well know.
I have not kept the good news of your justice hidden in my heart;
I have talked about your faithfulness and saving power.
I have told everyone in the great assembly
of your unfailing love and faithfulness.
Lord, don’t hold back your tender mercies from me.
Let your unfailing love and faithfulness always protect me…
…may all who search for you
be filled with joy and gladness in you.

Dotty on May 4th, 2009 at 7:34 pm #

she looks as happy as can be in the buggy!! love the pics:) hopefully you can figure out whats going on with the heart rate and extra o2 requirements. how did she(sorry im sure you mentioned it but i wouldnt know how far to dig into your blog) get diagnosed with the SVC? we were just told that zach’s thymus gland is enlarged, when i googled this i found one link somewhere that said something about the possibility that it could cause (?) or help contribute to this, but that a CT or MRI would show it. just thought id see how you found out about this, as it seems pretty significant. thanks also for the heads up with the sildenafil, i knew it caused “flushing” but had no clue about the congestion…thanks:)

Joel Snyder on May 4th, 2009 at 11:42 pm #

Ella, I am so happy to see you out shopping with Mom. I will be praying for you to have a good PT and OT sessions this week. I will also be hoping and praying that your appointment with the pulmonolgist goes well. Have a great week. Love,Grandpa!!!!!!

angela moore on May 5th, 2009 at 4:16 am #

Dear west family i am so sorry about the loss of your son,you are in our prayers,we love you all,and sorry about kelli,love you baby girl ella

Chambers Family on May 5th, 2009 at 7:57 am #

You finally got to use the cart cover! I loved that thing. We used in in restaurant high chairs too!

LoriAnn and Fam on May 5th, 2009 at 9:56 am #

I used the cart cover, too! People used to make fun of me. THEN one of my boys got Pinworm after I had stopped using it. I am not sure it he got it from the cart, but “they” stay alive for a ridiculously long time and he “could have gotten it” from the cart, so… good thing to use it. I still use a disenfectant wipe before I put ANY kid in a cart. Laugh all you want, I say. Anyway, Ella looks so sweet being able to do a normal, every day thing, with her mommy.

Jim and Char Jordan on May 5th, 2009 at 10:51 am #

Tina,Josh,Ella,and brother Joel, My heart is so awash with love for the difficult circumstances that have flooded your lives. You have been great during the whole experience. I have cried till no more is available. I have such a combination of loss, gratitude and wonder of all that has happened… I wonder if Kelly can somehow make things right and find what she desperately is looking for. I wonder if she will want to turn her life around? It is so worth it. You have provided the perfect example and great launching area for her. I hope she tries.
We wonder if you gave baby boy West a name? We want to remember him in our prayers always. We love you. We wish we could be with you. We offer prayers for you comfort. Love, Aunt Char and Jim

Abby and Matt Searles on May 5th, 2009 at 1:59 pm #

Josh, Tina, And Ella
We are so very sorry for your loss and all you have been going through..I can not even imagine…This scripture came to mind…..HOW GRACIOUS HE WILL BE WHEN YOU CRY FOR HELP! AS SOON AS HE HEARS, HE WILL ANSWER YOU…ISAIAH 30:19
I have no words to comfort only that you are in our thoughts and prayers on a dailey basis..We miss you all very much…Lots of Love to you all

Dr. and Mrs. Robert D. Wootton on May 5th, 2009 at 5:25 pm #

What a precious family you are. You are such a good Mommy and Daddy. Ella is blessed to have you for her parents.
Love in Christ,
Nancy Wootton

loren lizotte on May 6th, 2009 at 5:27 am #

Ella is beautiful. How precious.

Post a comment

Name:  (required)
Email:  (required)