We wanted to document what happened to Elliot. So here it is.
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| Elliot the day he was put in the hospital and one week later 'smiling' |
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| Elliot Tuesday Morning |
Tuesday morning Elliot woke up incredibly swollen. His entire face had swelled up over night and he could barely see out of his eyes. Immediately I woke up Jason and told him we needed to take Elliot to the ER. Once Jason saw him we contacted my sister and decided to give him some benadryl. It appeared to be a severe allergic reaction. After a few hours the swelling hadn't gone down at all so I took him to Urgent Care. At Urgent Care he was seen by a pediatrician who again believed it to be a severe allergic reaction. He asked the usual questions about any pets, new foods or peanut allergy, my answer was always no we just aren't sure what happened. The doctor prescribed him some allergy medication but ordered a urine analysis just to be on the safe side. We went home and let Elliot take a nap. Shortly after noon Jason received a call from the Urgent Care doctor saying Elliot had a large amount of protein being released in his urine. The doctor stated this was typically a sign of nephrotic syndrome and asked us to take Elliot back to get blood work done. We went in and got Elliot's blood taken. While there the doctor also asked us to do a 24 hour urine capture so they could estimate how much urine he was expelling. Once the children were in bed we watched some shows and around 1 am we received his blood tests. The numbers were astronomical.
Component Results
| Component | Standard Range | Your Value | Flag |
|---|
| Cholesterol | 0 - 200 mg/dL | 413 | H |
| Triglycerides Direct | 0 - 150 mg/dL | 448 | H |
| Total HDL Cholesterol Direct | 40.0 - 60.0 mg/dL | 35.0 | L |
| Direct LDL | 31.00 - 130.00 mg/dL | 300.20 | H |
| Cholesterol/HDL Ratio | 0 - 5 % | 12 | H |
| Component | Standard Range | Your Value | Flag |
|---|
| AST | 17 - 59 U/L | 31 |
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| Alanine Aminotransferase (ALT) | 21 - 72 U/L | 19 | L |
| Alkaline Phosphatase | 38 - 455 U/L | 191 |
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| Total Bilirubin | 0.2 - 1.3 mg/dL | 0.1 | L |
| BUN | 7 - 17 mg/dL | 26 | H |
| Creatinine, Ser | 0.3 - 0.8 mg/dL | 0.4 |
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| Glucose | 50 - 99 mg/dL | 94 |
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| Calcium | 8.8 - 10.8 mg/dL | 7.8 | L |
| Sodium | 137 - 145 mmol/L | 133 | L |
| Potassium | 3.5 - 5.1 mmol/L | 4.2 |
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| Chloride | 98 - 107 mmol/L | 105 |
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| CO2 | 22 - 34 mmol/L | 25 |
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| Protein, Total | 5.8 - 7.8 gm/dL | 4.9 | L |
| Albumin | 3.8 - 5.4 gm/dL | 1.9 | L |
| Globulin | 2.2 - 4.2 gm/dL | 3.0 |
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| C4 Complement | 12.0 - 36.0 mg/dL | 38.4 | H |
Seeing the numbers Jason and I both got scared. We didn't know what was going on with our sweet baby and that was scary. We tried to sleep and start the morning fresh with the urine capture.
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| Jason and Jude napping in the ER |
The next day, Wednesday, I went to the dentist and around 1030 Jason text me telling me Elliot had thrown up and had not peed. I told him to call Elliot's doctor and ask if we needed to take him into the ER. I got home from the dentist about 1130 and Elliot still had not urinated. As Jason and I were discussing what to do Elliot started throwing up again. We loaded everyone up and went to the ER. We were at the ER for 3 hours and all the doctors needed to do were to look at his test results. Immediately they called a pediatric renal specialist in Portland and spoke with her. After speaking to the renal specialist the doctor informed us Elliot was being admitted to Randall's Children Hospital in Portland. Our hearts broke. We told our families and went home to get some essentials for the hospital. We arrived at the hospital around 5pm and Elliot was taken to get an IV placed. Once Elliot had the IV and began receiving fluids the first Pediatric Renal Specialist checked in with us. She informed us that Elliot showed all the symptoms of Nephrotic Syndrome and explained it to us. Elliot's kidneys were spilling all the protein from his body. The loss of protein in his body which acts like a sponge was gone so the liquid moves out of the circulatory system causing him to swell up. This meant the rest of his body was not receiving any water, he had gained almost 10 pounds of liquid weight and yet was getting dehydrated, the water was on the outside of everything that truly needed it. They began giving him IV fluids and Albumin to help restore water back to his blood vessels. He was also started receiving Lasix to help him urinate.
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| Elliot catching some Zzzz's |
Elliot had not peed for 24 hours and at 1 a.m. the nurses informed me that if Elliot did not go pee within the next 5 minutes they would have to catheter him. I sat him on the toilet and said "Elliot if you do not go pee they're going to have to stick something in your penis to make you pee". Watching my little boy sob on the toilet and tell me that he couldn't do it--I was just at a loss. He finally peed and I cried. I was so happy they weren't going to have to catheter him. The nurses brought him toys because they were so relieved as well. It was a huge victory.
Thursday the doctors came in and told us more about Elliot's nephrotic syndrome. They were placing him on a restricted sodium diet and also fluid intake. Thursday was Elliot's birthday and the nurses spoiled him. They brought him balloons and two Spiderman toys--he loved it. Tori (our sister-in-law) and Barbara (my mother-in-law) came up to visit Elliot. Tori brought him a few toys which he loved and we went to the toy room to play for awhile. That afternoon they did an ultrasound of his kidneys just to see if there had been any damage to them. After speaking with his nephrologist she told us his kidneys were looking really well and that she wanted to try switching him to oral medication. It was really great news until around midnight. At midnight they came in and did his vitals. His oxygen was really low and his heart rate was pretty high. They decided to place an cup with oxygen shooting out near his face during the night to help keep his oxygen up.
Friday morning the doctor came in and said she believed that the Albumin was what had caused his oxygen levels to drop. Since Elliot was still not peeing the necessary amount and so the fluid was restricted inside his body causing the pressure on his lungs. He was taken off the Albumin and began oral steroids. The rest of the day was uneventful and spent taking Elliot pee every 2 hours, walking him around the hospital, and getting him to drink as much as possible.
Saturday was the first morning I woke up at the hospital feeling rested. Everything had gone well that evening and finally felt like everything was okay. The doctor came in and said she liked how Elliot's blood work was looking and that we could go home tomorrow. Elliot was taken off the Lasix and had been on the oral steroids for 24 hours. He was urinating more but had not lost any weight. Kidney function was almost to where it should be and the rest of his numbers were all heading the right direction.
Sunday was the release day!!! We were so excited and my family came up to visit. My sister graduated on Saturday and my brother Jeff had flown in to surprise her. My other sister Carrie was up watching Jude with her four kids--it was the first time my family had been together since Jeff's wedding. It was a great time. Elliot loved playing with all his cousins and once everyone had left our poor boy was so swollen. All the fluid had gone down his body and so we elevated his bed to help with the swelling. By Wednesday Elliot was down 10lbs and looked back to his skinny self. Elliot is considered to be in remission right now but can relapse. He will be on medication for 12 weeks and hopefully will not have this happen again.
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| Elliot happy to be home and back to his tiny self :) |
Ultimately this was one of the scariest experiences of our lives as parents. I have never been so worried or slept so little. You never expect to be the one having your child admitted to a hospital. We are so grateful for the wonderful nurses and doctors who took care of Elliot. They made his entire visit as good as a hospital can be and truly they gave us the support we needed as well. Elliot is on the mend but he is still on a sodium restricted diet--not that it has been a problem since he only eats "beans and rice on a tortilla folded into a taco". Thank you everyone for your prayers and love we have felt them.
