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!