Dec
28
    
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

[chorus]
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

[chorus]
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



 
Dec
14
    
Posted (Tina) in All Posts on December-14-2010


I wanted to make sure to write a new post and update everyone on the last two weeks.

Once we checked out Ella’s heart and lungs via echo the day before Thanksgiving, the next theory for her pass out spells was due to reflux. Per the last post, we ended up increasing her dosage of Zantac and adding Children’s Pepto (calcium carbonate, three times per day). We went through Thanksgiving and a few days after without any pass out spells. There were times that she came close, but she did not pass out. Also, I tried to dial back on ingredients in her blenderized diet and go very basic.

Then, the Tuesday following Thanksgiving was her first appointment for therapies to start. From that point, she made it clear that she was not going to tolerate occupational, physical or speech therapy. Normally, I leave the room with the two dogs and let her “play” with her therapists. She does great. Now, I was not allowed to leave the room or be out of sight.

Over the past weeks, she had become increasingly clingy. Even without therapists, she has been extra fussy. I would feed her or change her diaper and need to wash my hands or walk to the kitchen (she can still see me) and she just loses it. I rush and hurry back, fearful of a pass out spell. Or she would finally get distracted by playing with her computer or watching a video, but then there is extra whining in the background. Normally, just holding her helps it to cease, but sometimes not. In other words, she is whining constantly. To me this means that whatever underlying medical condition is present, it was starting to worsen.

Some days we were lucky with no pass out spells. Other times, it would happen a handful of times throughout the day. Because the Zantac and Children’s Pepto did not seem to be curing her of the pass out spells, we went ahead with the upper GI & small bowel series that her doctor wanted her to have completed.

We spent all last Wednesday at the hospital for the test. They asked me to arrive for check-in at 10am with an appt at 10:30am. They were running behind and we did not start until 11am. Initially, they placed 180ml of barium contrast dye via her g-tube and took a bunch of xrays in different positions. Of course, she was not enjoying this process. The good news: her nissen looked intact so it did not appear that reflux was occurring.

Then, we had to go to the reception area and come back for xrays throughout the day. First, it was 15 min, then 20 min, then 35 minutes, then an hour. Normally, it takes about 4 follow-up xrays and 2 hours for a healthy kid to go through this test. Last time in June, it took 4 hours. By the time 6 hours was rolling around, I was getting concerned too. The nurses and xray techs were asking if I had to change her diaper at all. Nope. No barium dye diapers yet. Since it was late in the day and they were pretty sure it had reached her colon, they took one last xray of her upper chest. That seemed strange to me, but then again, nothing is ever too weird when it comes to Ella.

Last Friday, Dec 10th, they called to let me know that they noted something suspicious on the films. To make sure, they asked us to come back for a chest CT scan on Tues, Dec 14th (this morning). They wanted a high density scan which takes 20 minutes, so this meant that she was going to need general anethesia for the scan. We went through the normal process of no food and water and drove to the hospital. They asked us to check in at 10:30am. As usual, they were running behind and did not come out to get Ella until 12 noon. She was finally under anethesia at 12:30pm with the scan starting. By 1:15pm, she was in the recovery area and they came to get me. Unfortunately, they waited a bit too long because Ella was already awake with a nurse trying to hold her to calm her down. The nurse had no idea how much Ella does not like nurses and that she was worsening it by holding her. But I applauded her efforts and as I walked in the room, Ella motioned for me. One thing is for sure: she knows her Mom and she wanted me.

The nurse mentioned that Ella’s heart rate seemed very low – in the 50-60s – so they gave her some Rubidol via IV to help increase her heart rate. I explained that 50-60s is common for her when she is deeply relaxed and asleep. I guess the staff was unsure, so they administered a medicine to help increase her heart rate. I held Ella for about 45 minutes in the recovery area. She was still fussy. Normally when she comes out of anesthesia, some cuddling keeps whining at bay. But today, she was still whining while I was holding her. These are the moments that I wish my daughter had speech, so she could tell me how and what she is feeling. It is just a helpless feeling as a parent to feel like there is nothing you can do to make her feel better. By 3pm, we were home and I was giving her some Pedialyte. She had not been given any fluids or food since the prior evening. As of now, she has had three large boluses of Pedialyte and we will try some food via g-tube before she goes to bed this evening.

Around 5pm I misplaced my cell phone and realized that I left it in the car. Sure enough when I picked it up, there was a voicemail from the hospital. The voicemail confirmed a nightmare: Ella has reherniated and there are loops of bowel above her left diaphragm.

We’re supposed to receive a call tomorrow to let us know the next steps as far as when Ella will be admitted for surgery. They do not consider it emergent in nature, as this has probably been slowly happening and worsening over the past several months. It couldn’t have happened too long ago. She just had bowel surgery in April (and they removed all of her bowel, repaired it and put it back into her cute body). Plus, she had the same two tests in June (upper GI with small bowel series and chest CT scan) and this did not show as an issue. So sometime between July and now, this likely occurred. I wonder if it happened with all her violent retching every day over those months; I guess that is one theory. If nothing else, it probably explains why she has been having the pass out spells, first coming on slowly and then increasing in frequency. It can’t feel good to have bowel in your chest!

Please pray for Ella – that she will remain stable, have a successful surgery and a quick recovery. And please pray for us as her parents. It is so hard to get this news. Our daughter has been through so much and continues to endure so many challenges.

Here is a poem I came across recently from another mom that struck a chord:

I Had Plans

I had plans…
such perfect plans…
of how our life would be…
A perfect job, a perfect home…
a perfect family.

It seemed like it should be that way…
(of course we’d have our trials)
But most days would be sunshine…
Laughter,love, and smiles…

And then, as I held pictures…
of my child, not yet born…
And heard the words “a heart defect”…
My own heart became torn.

First came the “Hows”…
Then came the “Whys”…
Then came the question…
What if my child dies?

Hiding for a little while…
trying so hard just to cope…
Wondering will she be okay?
living each moment with hope…

I thought that perhaps, someday…
I could breathe with a sigh of relief…
And know that she will be okay…
And let go of my grief…

It seems that moment doesn’t come…
As each day starts anew…
I realize I must start each day…
By giving her to You…

Whatever Your plan for her life is…
I trust that it’s written with care…
And You are God no matter what…
(Even when life isn’t fair)

So I will really LOVE today…
So thankful that she’s here…
And give her too many kisses…
And try to let go of my fear…

I’ll try not to be so resentful…
And remember that life is for living…
I’ll smile just knowing, she’s here with us now…
And hold tightly to each day we’re given.

~Stephanie Husted