Not What I Expected

Here we are again a year later still worrying about Evan's health.  His check-ups on Thursday did not go as expected.  He had his heart ECHO in the mornings and that went well.  The cardiologist called right after to say that his heart function looks good.  His heart is still a little thick, but that is not a big concern right now (we have the official appointment with the cardiologist next week).
We had gone in Wednesday afternoon for his one year well visit and his blood pressure was high (I have been getting his blood pressure checked on a regular basis for the entire last year and this was the first high reading in a long time).  I was really worried about it and did not have a good feeling about it.  Thursday afternoon we went in for his renal ultrasound and we found out that one of his kidneys has not grown and they couldn't detect any blood flow to it.  His blood pressure had risen even more.  Thankfully they had a nephrologist on staff that day who came to talk to us right away.  Her biggest concern was that there could be another blood clot since the blood pressure just recently started to rise.  She wanted us to go down to Little Rock ASAP to get a CTA scan done and check for blood clots. He would have to be put under to perform this scan.   I was really shaken up at this point.  This is not what I expected.  I was expecting a clean bill of health.  He looks so perfect and is such an active little boy.  How could something be wrong with him?

Well, we packed our bags in a hurry (once again) to drive to Little Rock.  Thankfully Debbie and Dan were able to keep Hannah, so we didn't have to take her.  We knew it was going to be a long night.  We didn't even leave our house until almost 6 o'clock and it is a 3 hour drive.  The drive was awful.  Thursday was the night before the one year anniversary of Evan being flown down to Little Rock.  I made that drive last year at exactly the same time.  I can't even tell you all of the things that went through my head.  We checked into the ER around 9:30 and at 2am they decided to admit Evan.  They were consulting with lots of doctors on whether they should do the scan that night (with a skeleton staff) or wait until the next day.  His lab work came back with some elevated levels and they decided to wait until the morning, so that they could consult with some more doctors.  He hadn't eaten or drank anything since 4:30 that afternoon, because of the potential anesthesia.  They told me that I could nurse him, but still no food, because they were going to do the scan in the morning.  The hospital is at capacity and admissions was running behind, so we didn't get to our hospital room until 5am.  Evan had been sleeping in my arms as much as its possible to sleep in a hospital (somebody came in at least every 30min).  The next morning there was lots of waiting and sitting around and riding around in a wagon and we did find the toddler playroom (it took him a while to get used to playing with only one hand, because he had the IV in the other).

He is just so adorable even in a hospital gown.......

They finally got us around 1:30pm to go down to radiology.  This poor little guy was such a trooper.  You know he likes his food and he hadn't eaten anything in 21 hours (he was on IV fluids).  They let us hold him while they gave him the anesthesia.  It was really hard to watch him go limb.  The actual scan only takes about 10min or so, but we had to sit in the waiting room for 45min until they called us back to recovery.  We were both sick to our stomach sitting there waiting.  He came out of anesthesia no problem and was just a little cranky.  He was finally able to eat around 4pm.  Then we had to wait again for the results and to meet with the doctor (all while his blood pressure was really high).  Sitting in the hospital waiting is tough.  There were so many triggers that brought back a flood of emotions such as the smell of the soap and the smell of the baby wipes.  It took me right back to his critical time last year  We did walk up to the CVICU to see some people and it was so heartbreaking to walk through that unit again and see all of those babies and kids fighting for their life.
The doctor finally delivered some good news.  There was no blood clot.  Thank you Lord.  She also had an explanation for why the blood pressure has been rising recently (I am not going to attempt to explain that right now).  His renal artery is very narrow and is restricting blood flow to the kidney and therefore it hasn't grown and is not working.  The plan is to talk with the interventional radiologist as soon as possible to determine if he thinks there is a chance to save the kidney by putting in a stent into the renal artery or blowing it up with a balloon or cutting the narrow piece out and sewing it back together.  If he doesn't think that we can save the kidney then they have to remove it, because it is causing his blood pressure to go up.  So, for right now they put him back on blood pressure medication until they come up with the plan.  We were so relieved to have some answers.  We are so scared of Evan having surgery, but we know that it is necessary to get him healthy.  Evan was discharged that night.  We were so excited to take him back home with us!

Today has been a tough day for me.  A year ago today was the most stressful and emotional night of my life (and I have had many more in the last year).  We did not know if our 5 day old son would make it through the night.  Today I have been replaying it all in my head again.  Every time I look at the clock it takes me back to that time a year ago.  Last week I thought we were passed all of this and just looked in awe at our sweet healthy little boy.  Now we are back to more medical terminology (I really feel like I have been through med school in the last year), medications, doctor visits, worrying and praying for healing.
We go in for a blood pressure check tomorrow to make sure the medicine is keeping it under control.  I know I will be really nervous walking into the doctors office, but I am praying that his blood pressure is back down to where it should be.

Please pray for this sweet little boy.  Thank you!