Haven't posted in a while, but fortunately there hadn't been anything to post about!! Saxon's checkup 3 months ago was good, with the exception of him needing to gain weight.
Yesterday we were back in Rochester for another 3 month checkup. Unfortunately this appointment wasn't all we had hoped it would be. Our first appt was with x-ray. Of course Daddy had to take him since Mama can't go in there with the little one on the way!! Sax did NOT want anything to do with the x-ray - he screamed and fought Daddy enough that he had red spots under and around his eyes. As soon as he was done with that, it was on to see Vicki and Dr Henry. Normally we would be seeing Dr P, but he is out on medical leave. He should (hopefully) be back sometime in Oct, but they're not positive.
Sax's weight is at 14.4 kg, up only .1 from his last Rochester visit, but up .4 from his 3 year checkup here in Albert Lea. Again we were told to fatten him up!! (We figured that one is a given.) He fought the throat culture like crazy too, when he had been doing them so well. Dr Henry pulled up Sax's x-rays when Vicki was done with him, and the films didn't look too well. She pointed out how there was more infiltration in the upper lobes of his lungs and along his heart line. (For now we are upping Sax's CPT to 3x per day and adding in 5 minutes of manual CPT on each side for those upper lobes. The way his vest fits, the upper lobes are where the straps are, so there isn't as much compression in that area. Hopefully this will work!!) She said there was a spot on the lower part of one of his lungs that she was concerned about. Dr Henry said the spot is either a dense clogging of mucus, or could also be a spot where part of his lung has collapsed. This showed up on the May x-ray also, I guess, but Dr P never mentioned it. Sounds like for now they are just going to watch it. Sometime next week we should have the results back from Sax's throat culture. After discussing the awful effects of Zantac with friends on CysticLife, we've also gotten Dr Henry to give Sax a prescription for Prilosec to see if that will work.
Today Mama and baby had a checkup - 21 weeks, 3 days. We found that the pocket of blood has not dissipated at all - looks to be about the same size it was before. Mama is still bleeding. Baby weighs about 1 lb now, though, is the right size, and the baby's heartbeat is strong. We weren't to excited to find out the baby still has echogenic bowel. This could mean either 1) the baby swallowed blood and it's taking a while to digest, or 2) it could be a precursor to meconioum ileus, which would mean the baby would have CF. If it is meconium ilius, the baby will likely need surgery right after birth. Of course, the surgery would have to be done in Rochester. We have told our doctor here, Dr Yahya, that we would like to have the baby in Rochester. We have already been over to see a high risk specialist there, Dr Rose. According to Dr Rose, the game plan is that we will start steroid injections at 24 weeks to help baby's lungs develop. Because of the complications I have been happening (which, according to Dr Rose, are rather rare) he said it is quite likely the baby will come before 34 weeks. He also said they would be following my pregnancy a lot closer and we would have frequent ultrasounds. I need to call him to see what the plan is. Albert Lea doesn't seem too willing to follow what the specialist says. We may end up bypassing Albert Lea altogether depending on what Dr Rose says.
Hopefully we'll find something out soon and get everyone on the same page. It's hard to manage care when people aren't communicating and the right hand doesn't know what the left is doing!!
This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.