The Romaezis

11 Weeks: Cystic Fibrosis Test

Today I’m blogging from the medical lab with a very unhappy baby in my arms. Don’t let this blog title get you too panicked. Kamran had an ecogenic bowel in utero. While I was pregnant the doctors speculated that Kamran swallowed my blood since I had hemorrhaged and assured me not to worry. When he was born, the neonatologists in the NICU told us that babies with what is medically called mieconium ileus (pardon my spelling) also have a small chance of having Cystic Fibrosis. Kamran had the state mandated test and it came back negative–twice. But those supposedly are not 100% accurate with more false positives than false negatives. So they did a sweat test when Kamran was a few weeks old. I was told that they simply put electrodes on his skin to cause him to sweat. No biggie, electrodes were on his skin daily to monitor his heart rate, respiratory rate and oxygen saturation. The problem? Infants don’t sweat. Thus, Kamran didn’t sweat and had to have the re-test done as an out patient. So here we sit and learn that the neonatologists are big fat liars this test is not as simple and stress free as they led me to believe.

Yes, they put electrodes on his skin but these are not the teeny stickers he lived in the first month. These things are about as wide as his little arm and he HATED having them put on. We started with two electrodes on each arm for 5 minutes to make him sweat, then those came off and the sweat collector had to go on and stay there for 30 minutes. They strapped one on each little arm and then wrapped it in paraffin and my little boy haaaated it. 5 minutes with a screaming infant is an eternity, I couldn’t imagine 30. Thankfully I could nurse to calm him down during the sweat collection portion of the process. After 30 minutes the tech came to check the sweat and luckily Kamran did sweat this time. The bad news was that only one arm collected because of poor positioning of the collector. That meant we had to repeat the process on his legs. I wasn’t happy about that but didn’t want him to go through this yet again if there wasn’t enough sweat collected. The legs were a ton easier to work with since he isn’t quite as fascinated with those at the moment as he is his hands. Not sure why we didn’t start there. He still wasn’t happy but was much easier to soothe. Half way through the sweat collection process on the legs a gradma-like lady came in to pick up Kam’s sweat to take it to the hospital lab. She explained that she used to do the entire test start to finish but they were putting her “out to pasture”–her words, not mine–and she only processes the collected sweat now. She was super nice and talked to Kamran, which he loved. He even chuckled…not sure if it was at her or the light but laughing isn’t something he does often yet so I got a kick out of it. We have a very serious baby on our hands.

The entire process took 2 hours from start to finish and Kamran was pooped. He slept the entire car ride home and stayed asleep in his car seat long enough for me to eat lunch, unload and load the dishwasher and spend 20 minutes pumping. Then he woke up at 2:30 on the dot, when it was time to eat. We even made it to the grocery store today.

The rest of the week is packed with appointments. Daycare tour, pediatric surgeon for his hernia and the pediatrician for his 2 month shots and a weight check. He only gets the shots if this cold is gone and I’m really not looking forward to those.

After I wrote this blog yesterday, Kayvan told me I couldn’t post it until we got the results of the sweat test back. I was never worried about these results. I’m not a carrier for cystic fibrosis so the chance of Kamran having it was near impossible. I got results today and Kamran does NOT have cystic fibrosis.

Now that it is Wednesday, I can tell you that the daycare tour went well. We met Kamran’s “teachers” who are very nice. Kam slept in his moby wrap the entire time. Boy loves that thing and so do I. I can totally wait for my maternity leave to be up. I haven’t worked in 5 months. I miss it but am worried about how I will handle all of it.

We also met with Kamran’s pediatric surgeon today who confirmed that Kamran WILL need surgery. I have prepared myself for this. I’m not thrilled but know we have selected a very skilled surgeon. She will repair the inguinal hernia on his left side and while Kamran is under anesthesia will check to make sure the right side doesn’t need to be repaired. If it does, she will fix that too. Kamran also has an umbilical hernia. Those ordinarily self-correct. In instances where they don’t, they are repaired at age 3. The surgeon will be repairing the umbilical hernia too so we don’t have to put him through this again later if the umbilical hernia does not self correct. You may be wondering why Kamran needs the surgery at such a young age. The inguinal hernia could get incarcerated…stuck. If that happens it is very dangerous for Kamran for a number of reasons and would require emergency surgery. It is always better to have planned surgery if you can help it, especially with a teeny guy. It took forever to get in with thus surgeon. She says we need to schedule his surgery ASAP, so I imagine it will all happen rather quickly now that we’ve had our consult.

Kayvan and I can’t wait to learn Kamran’s weight tomorrow. He has his 2 month shots and that I can totally wait for those.

Developmentally Kamran’s personality is starting to come through. We get lots of smiles, occasional laughter and even some frustration. This morning I got screamed at because Kam wanted to sit upright and stare at his window–I originally had laid him down. Lesson learned.