Posted (Tina) in All Posts on December-28-2010

It was a bit crazy with the holiday, but this week is much more relaxed.

When we began discussing scheduling for surgery, it was a bit of a surprise that it would be 3 weeks out. Apparently, all the older kids in school that have elective surgeries book them ahead of time for the holiday break. So, Ella’s surgeon was completely booked. In the meantime, we had 3 doctor appointments the week before Christmas with different “ologists” to discuss the latest happenings.

We met with the GI doctor on Friday, Dec 17th. Ella has lost more weight, so we have increased the MCT Procal to 2 packets per day versus 1 packet per day. Also, we’re adding more veggies and proteins to the blended diet. With these two changes, we’re hopeful that her weight will increase. She was 14.3 kilos this time last year, she is now 12.6 kilos (went from 31.5 pounds to 27.75 pounds).

I did look at the chest CT scan with her GI doctor. He thinks that there is a lot of bowel and portion of her colon in her chest. He stressed about watching for any further symptoms, as a portion of the bowel or colon could get a kink or be cut off from circulation depending on what exactly is going on. So far, Ella seems to be fine. We have a follow-up appointment at the end of January, post-surgery to see how feeds and other GI symptoms are going.

As with all the surgeries in the past, Ella’s system takes a while to get back in the swing of things and therefore, you almost have to start over with feeds. On that note, I asked about what they would feed Ella during our inpatient stay at the hospital. They do not allow food from the outside and they do not make the blenderized diet. The nutritionist told me that there is a canned equivalent of the blended diet called Compleat that we can request. I asked if she would call in a prescription to get a trial pack of the canned food. I received it already and plan on trying it about 5-6 days before Ella’s surgery. I want to know if she tolerates the canned version of the blended diet. This way, I will have a better gauge on her recovery. If she’s having problems eating, I’ll know if it is food related or pure surgery recovery.

On Mon, Dec 20th, we met with her surgeon to discuss the upcoming procedure. Again, we reviewed the CT scan and he agreed that there is a substantial amount of bowel in her chest. He did show us the patch that Dr. Kays put in and how it does look like it is still intact. For that reason, he will likely leave that patch in place and simply repair and add more patch to resolve the latest hernia. Of course, he won’t really know until he is in surgery but that is the plan for now. Also, he plans to check her nissen and make sure that it is intact and tight enough. At this time, we were given the surgery date of Thursday, January 6th, check-in early that morning.

On Tues, Dec 21st, we met with her cardiologist. Ella had an EKG performed and then we taked with him about the latest pass-out spells. When we did the recent echo during Thanksgiving, he was out of town. In between, I had sent him a few pictures of Ella’s collateral veins popping out. Although it is intermittent, I wanted him to see that they were making an appearance (the collateral veins are Ella’s back up system for blood flow that grew over time when her SVC was completely occluded. When they appear, this usually means higher pressure somewhere and is related to blood flow). Of course when we went that morning, the collateral veins were not present. But he started to discuss that although the echo and EKG look fine, you wouldn’t necessarily expect that having bowel in her chest would cause pass out spells. And since an echo and EKG do not tell the entire story, he wants to have Ella go to the cath lab before the big repair surgery. He will make sure that the SVC is not occluded, do some management in her SVC area, test pressures throughout (for example, lung artery pressures). The pressure information will help the anesthesiologist and surgeon to know what they are dealing with on the day of surgery. Plus, it will ensure that blood flow is maximized. Ultimately, he thinks that it will help her recover from the big surgery faster than if we do not intervene. Right now, the cath lab procedure is scheduled for Monday, January 3rd, check-in at 7am.

It is not optimal to have the cath lab on Monday and surgery on Thursday, so we’re still trying to see if we can move the cath lab procedure so that we can go get admitted to the hospital, have the cath lab, recuperate and stay at the hospital for the surgery (versus checking in/out within a few days). That is still up in the air and at this point, we may not have an option to change it.

One other procedure that we have really wanted to get completed for Ella is an MRI, to check out her brain development. If you remember, the last MRI she received was in the NICU in December 2007. They noted abnormalities, but emphasized that baby’s brains are not yet mapped. However they told us that if we do note any developmental delays, we should have a repeat MRI completed. Most of you know Ella in a virtual way, so you don’t grasp the degree of her delays. Trust me, she is very delayed; anyone who has spent time with her will agree. She’s made good progress with occupational therapy and physical therapy, but we’ve made no cognitive or speech improvements over the years of therapy visits. For that reason, we’ve wanted the information from an MRI so that we know which therapies she will most likely respond to. We know that her brain has undergone some damage, but if we have more information on which parts and to what degree, we’re hoping to structure her therapies to give her the best chance for comprehension and communication. With this in mind, we have an MRI ordered and are still working out the logistics of having the MRI done while she is under anesthesia for the cath lab procedure or the surgery. We should know more about that part by the end of the week. I expect that getting the news from the MRI is not going to be uplifting, but again, we know it is necessary to give her the best chance of improvement.

On that note, Ella still does not understand Christmas. We tried wrapping gifts and showing her how to unwrap them; she has no interest. This is really tough to swallow and makes the holidays a bit tougher on the emotions. All the ideas of holidays, children getting excited and waking you up at the crack of dawn to open gifts – it is just another day to Ella.

I have not taken the chance to upload holiday photos that were taken or to share what Ella received for Christmas (we were very blessed by some Ella fans), but I will try and do that by the end of this week before we journey into a heavy week of hospital procedures, surgeries and a long stay.

On that note, it is really humbling to ask for help, but we’ve realized that it means so much during these times. Our hospital stay in California last April really brought that into focus. Our family, friends and lots of people that we did not even know gathered together to minister to us. That was a first for us and it made a huge difference. We have 2 large dogs that could use babysitting, meals and visits at the hospital are great too. Some have offered to help in the past, but each of you knows your current schedule and what your time and resources will permit. So for those of you that are local, please reach out to us in the coming days by clicking “Contact Us” at the top of the blog and let us know if you feel prompted and how you’d like to help during our upcoming hospital stay (that was SO HARD to type).

Romans 8:28 (NIV)
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

In the meantime, this song has ministered to my heart…

Walk by Faith
by Jeremy Camp

Would I believe you when you would say
Your hand will guide my every way
Will I receive the words You say
Every moment of every day

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Help me to win my endless fears
You’ve been so faithful for all my years
With one breath You make me new
Your grace covers all I do

yeah, yeah , yeah, yeah, yeah, ya

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Well I’m broken- but I still see Your face
Well You’ve spoken- pouring Your words of grace

[chorus x2]
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Well hallelujah, hallelu
(I will walk by faith)
Well hallelujah, hallelu
(I will walk by faith)

I will walk, I will walk, I will walk by faith
I will, I will, I will walk by faith

megan on December 28th, 2010 at 7:08 pm #

Doodlebug I am so sorry you have to endure yet another surgery. Stay strong little one! Tina I can hear your sorrow and worry about what is going on, I really wish I was there to help in some way. I know all I can do is just pray so please know that I am doing that. I love you all!

Heidi Ham on December 29th, 2010 at 11:37 am #

Tina I believe I understand how hard that was for you to type…I am very excited to see all the many blessings that your Colorado friends and family are going to deliver to you and your family. Prayers from California <3

Liz Nelson on December 29th, 2010 at 3:15 pm #

I wish we lived closer I would be there in a drop of a hat. Please let us know if there is anything we can do from Cali.
I am praying for your precious little girl. She is such a strong girl to endure all that she has. Thinking of you! ((HUGS))

Dana Chambers on December 30th, 2010 at 1:21 pm #

You just need to move to Texas! We could do so much more! Glad you discovered the problem – sorry it requires major surgery.

Steve and Joan on January 1st, 2011 at 9:05 am #

Prayers, prayers and prayers for the three of you for the new year and coming procedures this week. Wish we were closer to help out. Blessings and hugs, Steve and Joan

Liz on January 3rd, 2011 at 9:58 am #

I found your website as I was googling reherniation. My 4 month old reherniated her CDH repair and we had surgery on Dec 30th. We share comfort in similiar verses… I have Jeremiah 29:11 posted on her crib- had it in the NICU too… I will be praying for your daughters surgery and for peace and comfort for you.

Liz Dooley, mama to Finley L-CDH Survivor (8/12/10)

Post a comment

Name:  (required)
Email:  (required)