Instincts

This particular post has been very hard to muster up.  The fear I feel each and every day regarding Jarod and what has been going on has me beyond distracted so this is to recap the last two weeks.

Instinct: How can such a small word, described as "something you know without learning it or thinking about it" (Merriam-Webster) bring so much turmoil and emotional distress? That answer is easy...when it comes to someone you love with all your heart, especially one of your children, a child who struggles each and every day to push forward despite feeling his absolute worse, you will do whatever it takes.  I don't hate much, but I do HATE CHD's! I must say that it has been years, over 14 years, when I last felt this gut wrenching fear related to Jarod's CHD, Hypoplastic Left Heart Syndrome. 

It all started at about 11 PM on Saturday night, 5/12/13. I could tell earlier in the day that Jarod wasn't feeling quite himself. Later that night, he actually asked for a nebulizer treatment because he couldn't breathe. We did what we always do and started the nebulizer treatments for his asthma. He was able to rest that night but the next day he just wasn't himself. I noticed that his belly was big and this concerned me somewhat so I actually called our local urgent care to ask if there was a doctor that would be comfortable seeing him. The very nice receptionist checked for me but advised me to take him to the ER because of his cardiac history. I had decided to employ "watch and wait" as long as he didn't get worse. He rested throughout the day on Sunday and he seemed okay so we rode it out. The next morning he was feeling bad, though he would never admit it, so I called in to work so that I could be with him and take him to the pediatrician. I must say that I work with an AMAZING group of people who would drop anything, anytime of day, to help me out. 


We were seen by the pediatrician, not his regular one, but one who knows him well. She too felt this was his asthma and started the standard, dreaded 60 mg of prednisone a day for 5 days. This high dose is usually the only thing that helps, especially since last Fall when we found out the stent placed in July in his pulmonary artery is compressing on his left bronchus. We already had a regular medication follow up for Thursday regarding his anxiety of upcoming surgery with our regular pediatrician, so the doc asked that we come back in for re-evaluation. As the days went by, Jarod continued with his normal course but I did notice he was more short of breath this time, more fatigued and that his oxygen level was normal which is not the norm when it comes to his asthma. His belly continued to get bigger, actually so much bigger that he couldn't wear his regular pants, and had to wear shorts with an elastic waistband.

We followed up on Thursday and saw his regular pediatrician. He is always very up front about his concerns. He listened to Jarod's heart and lungs for an extra long time and also noted that he had a more than 4 pound weight gain just since Monday. He was concerned enough about congestive heart failure that he sent us over for a STAT chest x-ray and labs. He called me later that evening and said that the labs didn't suggest congestive heart failure and to continue the nebs and follow up with cardiology as already scheduled on 5/30.


Friday came along and Jarod seemed a little worse so, just for my peace of mind, I called cardiology. As I said earlier, it has been years since I called with concerns about Jarod's heart. In the near 15 years since he was born, this is only the second time I felt the need to call cardiology. The down side is that we are once again starting with a new cardiologist who doesn't know us. I spoke to the nurse and she felt that it was urgent that we come in for a clinic visit, a repeat chest x-ray and echo so we went to UVA that afternoon. We saw the on-call cardiologist who was concerned about his increase in weight and the swelling in the abdomen. He started Jarod on Lasix 20 mg twice daily in hopes of getting some of the fluid off and asked me to follow up by phone on Monday. 

When Monday came around, there was little improvement and Jarod was even having to sleep sitting upright over the weekend. I relayed this info to the cardiologist and he had us double the Lasix to 40 mg twice daily and to follow up by phone Wednesday because, if this did not work, the plan would be to admit Jarod for IV Lasix. During this time I have kept a close eye on his weight and his breathing. Watching closely, when I checked on him Tuesday night, I noticed that he was sweating profusely. I am talking clothes and bedding soaked with the AC on sweating which shouldn't come from the Lasix. By Wednesday morning, I was relieved that the swelling in his belly had gone down, not completely but noticeably less, and he was losing weight. 


Deep down, I worry that this might be Jarod's liver, this is what my gut instinct is telling me. Because Jarod has a Fontan circulation, there is always the potential for liver problems as well as lung and GI problems. We had seen the cardiologist at CHOP who feels that he already has fibrosis of the liver so this is always in the back of my mind. There have been many days these past two weeks where I am actually afraid to wake up in the morning to check on Jarod, fearing the worst! 

On Wednesday morning, I had to call the cardiology nurse to report how Jarod was doing. I did mention to her about the sweating and it was brushed off, she said "it was hot last night" even though I told her the AC was on and no one else was uncomfortable. When I mentioned my concern about his liver, and requested she ask the doctor about liver imaging, she advised me that imaging is not necessary and that the concern they have with post-Fontan kids is heart failure or protein losing enteropathy (PLE) and that I need to keep the 5/30 appointment because they want to monitor him closely since surgery is getting close. By this time, I am feeling overwhelmed and defeated. I am talking to a cardiac nurse who may be a great cardiac nurse, but who has absolutely no idea who I am or who my child is because we are starting with yet another new cardiologist. 


On Wednesday night, Jarod had another night of sweating profusely. By this time, I am really concerned and trying to figure out what is going on. I look up the medications he has been prescribed recently and there is a "moderate interaction" for prednisone and Risperdal and then Lasix and Risperdal so why didn't the pharmacy point this out??...not really sure but I did my own research and read some scary stuff so on Thursday, I had decided I had to have some peace of mind so I called Jarod's pediatrician to discuss the sweating and the cardiology visit. He was very patient and as always, wanting to help in any way he could. We talked things out and he really wasn't sure what to make of it but certainly didn't want to cause any worsening heart failure. Yes, I hear from the pediatrician that they feel it is heart failure, not cardiology. Not really knowing what to make of this, he did admit that it was a "shot in the dark" but that maybe Jarod's thyroid stimulating hormone (TSH) was high so he had me hold his Synthroid that evening. Low and behold, there wasn't any sweating! He asked me to call and let him know since he was just grasping at straws so when I called on Friday to report this, once again he wanted STAT labs. Fortunately, I was able to reach JW and he picked Jarod up from school to take him to the lab. The pediatrician called later on to let me know that yes, his TSH was a lot higher so he decreased the Synthroid dose but also that his liver profile was higher than it was just a week ago bringing me back to the instinct that this is his liver. 

As the days go by, my gut tells me something is very wrong. Because he is in no distress, I will wait until that 5/30 appointment with cardiology, the new transplant cardiologist that we were specifically assigned to when Jarod's last cardiologist left.  I will have many questions for him and I am going to insist on a liver ultrasound. Jarod is scheduled for a very risky aortic valve/root replacement on 6/27 at CHOP and I don't want them to miss anything.  One question I will absolutely be asking is, "if this was your child, what would you want?".

Thanks for taking the time to read and I will update when I know more.