Posted (Tina) in All Posts on September-15-2009

It has been 2 weeks since Ella’s echo that showed her stints have narrowed causing pressure in her superior vena cava. It explains why the collateral veins have re-appeared all over her chest. Actually, the veins have become even more prominent which tells us that it is getting worse, not better. Moreover, she has been extra fussy. Typically this type of behavior appears when she is not feeling great. It isn’t that she is fussy all the time, but it is a lot of the time. Plus, when she is not doing what she wants, she has no tolerance. So holding her breath and having spells has become a frequent occurrence. Her baseline oxygen requirement has gone back up to 1 liter. Even then, her color doesn’t look as good and her eyelids get a purple color. Thankfully, we have not had pass out spells, but she desaturates very fast.

I had not heard back from the hospital to schedule her procedure. I was getting concerned and decided to rattle some cages this morning. Good or bad, we have an appointment next Wednesday at 6am. Check-in time is 6am and the procedure is scheduled for 7:30am. Yikes, none of us are morning people, but it is the soonest time so I didn’t want to negotiate on the time slot.

I’m bummed that Ella has to have this procedure. I wish it had been at least a year before having to go back to do maintenance on the stints. I’m scared that this might mean 2x/year visits to the heart cath lab. That is not a fun thought since it requires anesthesia and putting her out; there is always risk with this type of procedure.

We wanted to cluster care to see if we could get teeth or ears checked out while she was sedated. Based on the appointment being the first procedure of the day, we have a good chance of things timing out the way we need. The audiology ABR test scheduled for 10am. As long as Ella is done with the heart cath procedure, it will time out beautifully. However, the test takes 60-90 minutes. So if she is not ready at 10am, the audiology test will need to be rescheduled for another time (that is the only time slot they have available). We’re still working to see if someone from the dental clinic can come look at her teeth while she is in the cath lab. Hopefully, that will work out too.

Once all her tests are complete, I’m sure we will spend the night at the hospital. This will be the 3rd hospital stay this year and hopefully just an overnight visit. Last time, the anesthesia gave her diarrhea and a bad tummy ache. We had to fight with the nursing staff for 2 hours for a dose of Maalox to calm her. I think I’m just going to have it handy in my bag this time, so we don’t have to have unnecessary battles. The anesthesia also makes her itchy, so we’ll need to watch for that symptom too. All in all, she looked worse after the procedure. It wasn’t until about 24 hours later that she started to do well, but that is fairly quick. I’m hopeful that it will be the same thing this time.

It is a blessing that Josh does not have a job right now, so that we can all endure this time as a family. On a positive note, the Lord has provided some small contract jobs. This is not even close to meeting our needs, but every little bit helps and we are thankful.

Please pray for Ella. We really want her to feel better and pray for an uneventful procedure and quick recovery. In the meantime, for Ella to hang tight and deal with this icky feeling and lack of oxygenation. And please pray for me and Josh. Every time we return to the familiar setting of the hospital and our baby girl has a procedure, all the emotions of our journey surface. It is hard not to let it weigh heavy on your heart.

We’re not sure what His divine plan means, but trust that there is a greater purpose in all of it.

1 John 4:16 (NIV)
And so we know and rely on the love God has for us.
God is love. Whoever lives in love lives in God, and God in him.

Dotty on September 15th, 2009 at 7:22 pm #

praying for Ella, she is a strong fighter and with you on her side being her voice she will continue to fight these battles. and she will win them! our thoughts are with you.

Eve Johnson on September 15th, 2009 at 7:34 pm #

May God continue to protect your dear child.

Jill E G on September 15th, 2009 at 8:13 pm #

Prayers for all of you.

Dawn on September 15th, 2009 at 8:51 pm #

I hope that the procedure goes well and Ella has a fast and safe recovery. Thinking of you guys,

sara on September 15th, 2009 at 10:47 pm #

Thanks for sharing your journey with us. Praying for you as you go to the hospital again. No fun. I’m so thankful I’ve been reading your blog for the past 2 years. So many hospital procedures, terms, etc are familiar to me before the medical staff starts to discuss them with us. Much of that is from your blog. I’m just beginning to realize what incredible strength it takes to raise a child with special needs. You are both amazing for what you have and continue to do for Ella!

Kristen on September 15th, 2009 at 11:24 pm #

You are such a wise mama. . . always pack those things that make it easier on all of you. 🙂 Wonderful idea. I will be praying for your family. Thank you for the update.

Marge (A Friend in Indiana) on September 16th, 2009 at 5:36 am #

Sweet, precious Ella, always praying for you. May the procedure be uneventful as the Lord guides those caring for you; feel better soon, little one! Josh & Tina, may you find comfort in the Lord as you continue on your journey amd may He continue to bless you with His goodness.

Moriah Weir (Lisa and Andrew's daughter on September 16th, 2009 at 5:55 am #

Hello! I just wanted to let you know that I am praying for Ella and I know that she will get through the procedure.

Loren L on September 16th, 2009 at 6:22 am #

I’ll pray for all of you!

Tracy on September 16th, 2009 at 6:30 am #

~ Praying everything goes good with the procedure and a speedy recovery ~ Praying for you guys in TN ~

Joan and Steve Odell on September 16th, 2009 at 7:24 am #

Prayers continue for all three of you – you have been heavy on my heart the past several weeks. Although they aren’t fun sometimes, life’s journeys bring us closer to our Lord and disclose things we may never have understood. Hugs and love – Steve and Joan

Jennifer Harris on September 16th, 2009 at 10:31 am #

Our prayers are with you! Peace & Blessings

Teresa Reed on September 16th, 2009 at 2:47 pm #

Praying for the best! I think of you all often and hope this procedure will make little Ella feel better. Miss you, Teresa

sherry martinez on September 16th, 2009 at 3:37 pm #

so glad you posted ive been thinking about you all and wondering how ella is doing. sorry about the upcoming procedure. if there is anything i can do you know how to reach me. for now i will send you a big hug and give you up to prayer. hugs from sherry and baby cayden

shirley schreiber on September 22nd, 2009 at 8:39 am #

Cindy Deckerd is a member of our small group and just shared your email with us. I will be praying and praise God you are going to the conference. Women of Faith can be a life-changing experience; and, in the case of believers – it is a life-confirming experience.

Geoffrey Cullins on September 22nd, 2009 at 1:57 pm #

You all are always in my thoughts. I hope nothing but the best for Ella with the upcoming procedure.

Joel Snyder on September 27th, 2009 at 6:10 am #

Ella, Grandpa is praying that the procedure on Wed. morning goes well and hoping the results will help you to get back on track. Love,Grandpa!!!!!

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