MightyJohnsons

So yesterday was one of those days I hope to never experience again. It began early in the morning. Too early. I didn’t get much sleep and to hear my alarm ring at 6:00 am, I thought I was gonna cry. After getting all the kids ready for school and then dropping them off at various homes through the neighborhood, Seth, Ellie and I headed up to Primary Children’s Hospital to begin our day of poking and prodding.

As we drove up to Salt Lake I kept telling Seth that I didn’t think Ellie could possibly have cystic fibrosis. He said he preferred not to make a decision this early so it wouldn’t hurt later. The night before I was up a late surfing the internet and quickly becoming an expert on cystic fibrosis. It was late and I wasn’t paying much attention but something I came across did give me a little hope. I read that the PKU, a newborn screening test they do in most states, often checks for this disease at birth. If that was the case, then Ellie would have already been tested twice and we would have known if she had cystic fibrosis. The blog I read it on wasn’t a medical site so I just logged the information and went to bed. The next day I had so much on my mind that I didn’t really think about it again.

We finally arrived at the hospital around 9:00 am to get Ellie registered for all the lab work that was ahead. We started with the sweat test. Electrodes were put on her legs to stimulate the sweat glands. They remained on for five minutes. Then she they wrapped her legs in gauze, plastic, more wax like paper and then some tape. I was told to bundle her in as many blankets a possible for thirty minutes and then come back. Seth and I walked the halls keeping her bundled tightly. She had the rosiest cheeks. After 30 minutes we returned to the lab where they undid all her layers and took out the gauze. The nurse commented that they didn’t appear very wet. There is a chance that if not enough sweat was collected then the test would be invalid and have to be redone later. The sweaty gauze was sent to upstairs for testing and we were told to come back in 5 minutes to see if the test collected enough sweat.

Next, we had the draw a vial of blood. They stuck a big needle in her tiny vein and drew as much blood as they could from a 9 lb. baby. That was sad. She screamed. Seth didn’t dare watch. I held her and tried to comfort her. Next, we went to radiology to get her chest x-ray. The wait was near an hour. During the wait we found out that one of the two gauze pads from the sweat test didn’t get enough sweat and so the test wasn’t valid. I called the doctor and explained to him what happened. I asked if we needed to do it again. As I asked, the thought popped into my head from the night before. I thought I should ask him about the newborn screening to see if she had been checked at that time. He paused. He then said, “Uh, yeah, I forgot about that.” He went on to ask me if Ellie was born in Utah in the last year (which of course she had been) and said that he had forgotten because they recently added cystic fibrosis to the list of diseases they check for in Utah. What?! How do you forget something like that? Doesn’t he know that he put me, my friends and my family in a total state of panic? I was sure he felt bad but I didn’t care much. I was upset. He said it was still a good idea to do the sweat test again just to be sure, but what could be more certain than a blood test? We decided against redoing the sweat test.

He did want me to go through the rest of the tests with Ellie to check for other things. The x-rays weren’t too bad on poor Ellie, compared to the other things she’d already been through. They did an x-ray of her on her back and one of her turned on the side. They did have to hold her in an odd position for the side shot. She of course didn’t like it at all and screamed the whole time, but it went fairly quickly.

Finally we went to what they call the “Suction Shack”. The nurse inserted tubes so far up her nose that it appeared as though it touched her brain. They wrapped her up tightly beforehand so she couldn’t move. She screamed loudly. I can’t help but to think it was painful. For me it was the hardest test of all to watch. I guess it tested more extensively for RSV, H1N1, etc. I knew she didn’t have those either so I am not sure what the purpose was, but it was doctor’s orders.

We were all very tired; it was emotionally draining. I also was frustrated. I kind of felt like it was all for nothing. Now I remember why I rarely take my kids to the doctor. I think sometimes they get overly paranoid, especially the younger ones. I am going to find a pediatrician like the one I had before Dr. Clayton retired. I think many years of experience is vital. This doctor had only been in practice for a couple years. We did get a call about the results later in the evening. Her chest x-rays were perfect and showed nothing wrong. Her blood panels showed no signs of any issues. They did test the one sweat pad and it was negative for cystic fibrosis. We’re still waiting to receive some of the other results, but we’re not too worried about them.

So it boils down to Ellie having a little cold. Yes, she is small and I am going to increase the amount of formula that I give her per ounce to help give her more calories but I am pretty sure I was right about her weight. She is small, just like all of my babies have been. I wish yesterday didn’t have to happen. It was sad to see her having to go through all the tests. The one thing good that came out of this whole ordeal was it reminded me how blessed I am to have 6 healthy children. I spent a lot of time yesterday evening and today holding and talking to sweet Ellie. I am so grateful to have her in my life.

Little Ellie has been suffering from a cough and congestion for over three weeks now. It doesn’t seem to be worsening but it has kept her up the last couple of nights so Seth and I decided it was time to take her to the pediatrician just to be sure she was okay. With six kids I often find myself not worrying enough and assuming it will pass, but this time felt like we should take her in for peace of mind. I would have bet anything they were going to tell me she was fine and that the cold would work its way out of her system soon enough. Boy was I in for a surprise.

I mentioned to the nurses that Ellie seemed very small in size (weight). They decided to weigh her and she was 9 lbs. 11 oz. That concerned the doctor. He wanted to weigh her again with her clothes off. When he did she was 9 lbs 2 oz. At her two month appointment she was 9 lbs 5 oz which means she went down three ounces in 2 months…not good. She eats great, sleeps great and is a fairly happy baby so I hadn’t really worried much. The doctor initially tested her for RSV. The test came back negative. Her oxygen stats were at 90. Anything below 90 is a concern. So that part was okay, although a little concerning. Then he started asking me about any history we have of cystic fibrosis.

My heart immediately dropped and I could feel tears filling my eyes. I was trying to listen but honestly everything after those two words are a blur. The next thing I remember is him telling me he was very concerned and that he wanted Ellie to go to Primary Children’s Hospital first thing in the morning. She is going to get several blood tests taken, a chest x-ray and a sweat test. I think they have since added a few other tests to the list as well. The doctor did tell me that nothing was certain until the blood tests came back positive, but I am really scared. There is nothing as horrible as fearing for your children and their quality of life.

Cystic fibrosis is a genetic disorder and as far as I know we have nobody in Seth’s family nor my family with it. A defective gene would have to come from both Seth and I. Symptoms include lack of weight gain, persistent mucous/cough, bowel issues, salty skin and a few others. She has some symptoms but not all. All of my babies have been small, really small until they get past 6 months. The alarming part is that she has lost weight since her two month visit. I am justifying it by saying she sleeps a lot and probably isn’t eating as much as she might otherwise, but I am not sure it is true. She gets about 30+ oz of formula every day and babies only need 18 oz. to thrive. The doctor doesn’t believe that is the problem.

He was very serious, more so than I have ever seen a doctor be when talking to me. It is a horrible feeling. So am I worried? Yes, I am worried. How could I not be? She is my dear sweet baby. Do I think she has cystic fibrosis? Well, no. I don’t want to believe she could have it. It doesn’t make sense to me that she would have it, but he seemed so concerned that it seems something must be wrong. I will know more tomorrow after her tests. By Friday I should know for sure. I will try to have faith that she will be alright until then. In the meantime please keep Ellie in your prayers.

We were up at Grandma and Grandpa Johnson’s house visiting this evening. A little while into our visit we hear the girls yelling that Drew was bleeding and then we hear Drew screaming. Apparently he was outside riding a little trike and it tipped over on Grandpa’s ramp and the edge cut an inch long gouge in his head. Off we went to the Instacare and got him fixed up.

He didn’t care for the nurse during the cleaning and scrubbing of his wound but luckily they no longer have to use needles to numb the cut. They filled it with a numbing gel and 20 minutes later they punched three staples in his head. He didn’t even flinch. The best part for Drew was the otter pop they gave him to eat while he waited for the cut to numb. He was a trooper!

(Not-so great cell phone pics but I couldn’t resist snapping a quick photo of this cute little guy.)