Wednesday, November 26, 2014

GI appointment update

First of all, thank you all for praying! We love the Dallas Heart team and our first experience with the GI team was just as great! The doctor fell in love with Ella (who wouldn't?) He said she knew more then the 6 and 7 year olds he sees and he said she just "made his day"! I love how much sunshine she spreads all around her! While we were waiting to go back she sang "let it go" from frozen and I looked beside me and saw that several people were watching her with smiles on there faces and I thought "I'm glad she is making people smile". You never really know if your kid singing in public is a good thing or if everyone else is wishing your kid would be quiet hahaha but the smiles confirmed that she was being enjoyed and I love it when other people get to enjoy her sunshine spirit!

Now on to the update. It was again confirmed that Ella has some severe blockage that needs to be dealt with, so we will be trying some new, more intense treatments here at home and adding some daily maintenance meds. Please pray that this works, it's not going to be fun for Ella and we don't want to have to do it again. Since tomorrow is thanksgiving we plan to wait and start this new treatment plan on Friday and it will go through the end of Saturday or possibly all day Sunday as well depending on how she is doing. From there we will start a new maintenance routine. Also she had some labs drawn to rule out some things but we are still waiting on those results, and can I say she was SO brave during the blood draw!!! I'm sure some of you were praying specifically for her to have peace so thank you! We hope this new plan works and gets our girl well on her way to feeling better. We will follow up with the GI doctor in 3 months.

Again we thank you all for the prayers, we really felt like we were in the right place with the right doctor and he is very optimistic that we can get her feeling better soon! Please continue to lift Ella up in prayer as we try to ease some of her pain and hope this takes care of all the other issues going on in her little body.

Have a Happy Thanksgiving! We are thankful for the Lord and His unfailing Love, we hope you have accepted that Love too! We hope you have a wonderful day remembering His goodness! So many things to be thankful for, even amidst all the pain and suffering in this world. Even Jesus said "Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33. What a beautiful savior we get to cling too! He has already overcome this world and all the pain it brings. He will restore and redeem it all one day, and what a wonderful day that will be if you choose Him! After all, He has already chosen you!


Tuesday, November 25, 2014

Radiology and Urology update

Ella is still not close to where we need her to be as far as bodily functions.

I called the urologist yesterday and talked to her nurse and told him that we wanted to come in for another appt. and we wanted to go to radiology for a full, more detailed ultrasound of her bladder and kidneys. He told me they couldn't see her for that until her next appoint that was scheduled for the end of January, but after talking to him for awhile he told me that we could be seen at a different location on Dec. 1st. the only problem was that we needed to have an ultrasound done at children's radiology before then to have the results for the appointment on Dec 1st. Once he talked to radiology he told me they could get her in the next day at 8:15am and there was a possibility that after that they may be able to try and see her in urology instead of waiting until the 1st since we would already be there.

Early this morning we headed out to children's here in Oklahoma and had the ultrasound done. When it was finished we called urology to check and see if they could fit us in, after some phone calls they told us they could fit us in at 10:30am. We went to a secluded waiting area and I while we were sitting there Ella's cardiologist called me. I caught him up on everything again and he agrees with me that something is definitely not quite functioning properly in Ella's body. As far as a cardiac standpoint goes she is looking pretty good so he wants us to change a dose on one of her meds and then see a GI (gastrointestinal) doctor as soon as possible before perusing more cardiac testing.

Once we got back to see the urologist she told us that Ella's ultrasound is still showing a major problem with constipation (despite her going everyday sometimes twice a day) and her urine is showing dehydration (despite the 20-40 oz. of water she drinks a day). We have to continue to be aggressive with treating those things. Some of Ella's other symptoms the urologist told us, are not typically side effects of constipation, so we know something else may be playing a role in her not feeling well and losing weight, which is why we need to see GI as soon as possible.

When I was talking to Ella's cardiologist today he told me that we could see a GI doctor here in OK or there in Dallas but to just go to the first available appt. I called Dallas GI and they told me the soonest they could see her was Dec. 30th. We knew we wanted to be seen sooner so we talked to the GI here about scheduling to see if we could get in sooner. They said the soonest date they had would most likely be February... um no...just no. So I called Dallas back to tell them we would take the Dec. 30th date and to ask them to put us on a cancellation list for the possibility of a sooner appointment slot. The man told me that about 30 min before I called they had had some new openings and that they could see her, ...get this,... TOMORROW! I just knew that God's hand was in that and knew it was the power of all the people praying for her today!

So with that said, we will be off early in the morning heading to Dallas to hopefully get some answers or at least closer to finding a way to help our sunshine feel better! We appreciate your prayers more then you will ever know. Please continue to pray for us as we search for answers, please pray for protection from germs, travel safety, wisdom, and strength. We are all a little  lot tired of doctor's offices and appointments but mostly we are tired of not being able to fix our sweet girl's pain. Thank you all for your continued love and support to our family, this road is not easy, it is scary and full of unknowns, but having so many people praying for us is humbling and it makes us thankful beyond words.

Tuesday, November 18, 2014


Ella hasn't had any "episodes" since the 13th so that is great! She is still not where we want her to be with her oxygen and heart rate, but is doing okay. Her bowl track is still not back to normal but we are doing our best to work through that. We still aren't positive what all is going on, but she seems to at least be moving in the right direction and is not getting worse at this time. Thank you all for continuing to pray for our girl, we look forward to her feeling completely better, hopefully soon.

Friday, November 14, 2014


Ella's urology appt went well yesterday and we have a plan in place to hopefully mange the UTIs better without the constant need of antibiotics.

She is still having "episodes" and some low oxygen with high heart rates. 

We thank you for your continued prayers as we try to find answers! 

Wednesday, November 12, 2014

Emergency Dallas Visit

Starting Mid September Ella had her first "episode". It started after a full day and a half of playing outside. She hadn't eaten much, she usually doesn't when she is away from home, or even if we have guests over so it wasn't too uncommon. She said her mouth hurt on the way home she started to look sick, we thought she was just tired and hungry. We walked in the front door and got settled in before she threw up, quite a bit. She was pale and weak and said she needed to rest. We watched her closely and got her some food once she could eat and then in bed. The next morning she was a little extra tired and she took a good long nap that afternoon but by evening she was completely back to normal. We know that with her special heart she will have quite a few limits as far as how much activity her body can handle and we felt like she had just overdone it playing so much.

Over the next two months Ella has continued to have these "episodes" and now they are happening more often and with less activity. We talked to her cardiologist about it at her last check up on Oct. 10th. It had happened a few times by then and since her heart looked good he told us to just keep a close eye on it and to go ahead and to continue to let her self limit her activity and let him know if anything changed or got worse. He told us that as she gets older we will begin to see her limits more prominently especially as she begins to play with other children. The gap will grow between her stamina and theirs. I understood what he was saying but still felt like these episodes were happening far too easy even with her special heart.

As the next month has gone by things have gotten worse, her energy level is lower then before, her eating has gotten worse, and an array of other little things that all add up. I have been in contact with her cardiologist about them and her regular doctor. They both agreed that it could possibly be her acid reflux flaring up so we doubled her acid reflux meds and waited for it to work but to no avail the episodes continued. What started out happening once every few weeks has progressed to having these episodes every few days and sometimes even multiple times a day.

She has also been dealing with UTIs and we can't seem to get them to go away so we are needing to see a pediatric urologist to try and see if there is a structural issue. She has started her 3rd round of antibiotics which is really bad for her. Not only do antibiotics kill the good bacteria along with the bad, but in her life she will need many antibiotics for everyday things like teeth cleanings and ear piercing etc. because infection is too big of a risk with her heart. Not to mention the major things like surgeries require lots of antibiotics and the more antibiotics she has the higher the possibility that her body will begin to build immunity to them. That is dangerous because in the case of a serious infection we lose the ability to treat it as successfully. These UTIs may somehow be playing a role in these "episodes" but we don't know yet. She is also currently battling her first cold of this season. So far she seems to be handling it very well and it seems pretty mild, for that we are so thankful.

 On Monday the 10th of November she began to have one of her episodes and just wasn't feeling well. By Monday night she was in pretty bad shape and we had been in contact with her regular doctor and her cardiology team and everyone agreed her symptoms needed to be addressed and we needed to take her to an ER. Jon and I were torn, the ER is one of the worst places to take a heart child because of all the sickness not to mention, we aren't comfortable with OU children's hospital because of previous bad experiences and they don't have her cardiologist or her history on file the way the Dallas Children's hospital does. We knew she needed to be seen but didn't know if she could wait until morning to go to clinic and avoid the ER or if we needed to get her in immediately. One of the strange things about these episodes on Monday was that in between them she seemed perfectly healthy and during them seemed very sick. We decided to pack up and head to Dallas for the night and that way we would be near a good ER if she got worse and if not we could take her to her clinic first thing in the morning. Our fear was getting on the road and ending up in an emergency with her in the middle of nowhere between here and Dallas.

The drive was scary, about half way there things really took a turn for the worse and she was very very very sick. She had two major episodes on the way down there and it was so hard. I thought we had made a mistake trying to get her there, I didn't know if we could make it in time. Finally we saw the Dallas sky line and in record time we made it to the Hospital. The cardiologist had called ahead so we were able to get back right away despite the overwhelmingly crowded waiting areas.  We arrived around 11:45pm. After several hours the ER doctor said they were planning on admitting her because of her symptoms but by then she seemed to be somewhat recovering from the episodes. They did chest x-rays and abdominal x-rays, they did labs (so sad) and everything was looking pretty good. The cardiology floor got really full and they decided around 5:30am that since all the tests were coming back clear that we could be discharged and come back in at 8am for clinic.

 By that time we were tired, cold, and discouraged that they hadn't found anything and that they weren't going to keep her for observation. We got to our car and knew we had to be back inside in 2 1/2 hours, we didn't have time to go to a hotel so we just tried to take a nap in the car. Ella was crying to go home, she was scared and didn't feel good. We had all been up for over 20 hours. We dosed off for little bits at a time. Jon and I were sharing the driver seat and as you can imagine it was not comfortable, but never the less we were grateful for a little bit of time to rest our weary bodies. I did my best to make a little bed for Ella in the passenger seat, I desperately wanted her to feel safe to feel comfort. I wrapped her up in a blanket from home and pulled out her special stuffed animals and water cup from home. We tried to make it feel fun, telling her how silly it was to sleep in the car until the sun would come up, but inside I felt completely at a loss. I felt almost homeless, I was scared for Ella and sad that she has had to go through so darn much in her life. I felt like my body was giving up on me and that I had to keep going. Ella was curled next to us with blood stained jammies and bruises on each hand from the blood draws that were so much harder emotionally for her then physically even, her hair was tangled from the anxious sweating she had done that had made her hair wet. The sun came up and it was time to go back inside, our bodies were cold from the front that had come through and we warmed up by the heater and tried to freshen up before our appt. Ella cried, she didn't want to go back in, neither did I, but I knew we needed to.

We made it to the clinic and we checked in. Ella had to pee in a cup and it was the first time she had gone potty in 12 hours. She had an Echocardiogram and an EKG she was terrified, but was so brave and we were able to see everything we needed. After that we saw the on call cardiologist since her normal card wasn't in clinic that day. He was a kind man and listened to all of our concerns and checked Ella, before telling us that they had found nothing. Every single test was normal. Her abdominal x-ray showed that she had a lot of poop but other then that nothing. I wanted to cry. It wasn't that I wasn't so thankful that they didn't see anything wrong, it's just that now we have no answers and we have to keep searching. So he told us he didn't know what else to do at this point. I told him, I know she looks good right now, I know she looks good on paper, but I'm her mom and I'm telling you something is wrong and if you had seen her last night you would have been very concerned. He told me he believed me, but he couldn't do anything else because he had nothing else to try. I know he's right, I just hate not knowing what's going on in my baby's body and at the same time knowing something is wrong. They decided to send Ella home with a 30 event monitor to check for possible arrhythmias.

 Once we left the clinic I did cry. I was tired and frustrated at the lack of progress after all Ella had endured. I was scared to go home, what if this happens again. Then what do we do. It's getting worse and I don't know what will happen to her next time. I don't want her to have to wear a monitor for 30 days it scares her and it's a pain. I felt like they weren't listening to me. I have learned enough in this heart journey to follow my "mommy gut". This isn't the first time Ella has been having problems only to show all normal test results and I  had to push until they found the problem, and there always is one.  We got in the car to drive home all of us utterly exhausted, we hadn't eaten more then a few bites in nearly 30 hours and I didn't feel much hunger because my heart and mind were burdened but I knew we needed to try to eat so we stopped to get some food to go. While we were there we hooked Ella up to her new monitor and sent in her first baseline test to the EKG department. I'm glad we did because less then 30 min. later it started again, she lost her color and began to look very sick we pushed the record button on her monitor and took 3 recordings before sending them in. I called the EKG department and told them what had just happened and asked them to read them right away before we left Dallas. They called me back after they checked them to let me know the tests were normal. Another dead end. I will, as usual, not take no for an answer.

Our next step is urology to get her UTI under control and find out the cause of those. They told me they couldn't see her until January even though she was referred by her Primary Care Doctor. I told them there was no way she could wait that long, after talking to them for a little bit they said they could see her on Nov. 17th if we were willing to go to a different campus, I said we would take it. A few days ago I decided to try to get her in sooner, so I called back and asked them to put us on a cancellation list for the possibility of a sooner appt. After our Dallas trip I felt more urgency then ever to get her seen ASAP. I got a call this morning from them, they have an opening for her tomorrow. The exact time slot we wanted before I ever even got the first appt. scheduled. It's just like God to make that happen. I needed that. Jon and I were just talking on our drive home from Dallas how confusing it is sometimes that God's timing seems so "off" to us. Like how Ella never had her "episodes" in front of any of the doctors. We talked about how our idea of good timing and His don't always line up and how we love it when they do. Then this morning happened. I didn't have to call them and beg again, they just gave it to me, the perfect time slot for Ella.

 We appreciate your prayers as we continue to push for answers and go through more testing. Pray that God would give all of Ella's many teams of doctors wisdom and that He would touch Ella's body and give her healing and peace. That He would continue to guide Jon and I as we make decisions for her and protect us all from germs this flu season. Thank you all for supporting our family in this journey. We feel so blessed to have so many people loving and praying for our sunshine. In her four years of life we have only ever made two emergency late night drives to Dallas ironically they were four years apart to the week. Jon and I talked about how thankful we are that Ella has done so very well with her special heart. We know that God is in control and even though we feel fear, we know that He will never leave us or forsake us!