Tuesday, March 2, 2010

Sick Once Again....or Still

Last time I posted I mentioned that Zak had a fever on Saturday night. Things have gone downhill since then. On Sunday both boys still had the runny nose and cough, but no fever. Yesterday when they woke up Zak had a low grade fever and Ryder had a worse cough. Zak spent the day with Rich while I took Ryder to his therapy class (he had missed it for a whole month due to testing, illness and snow so I really wanted to get him there) and eye appointment. Last night both boys became very clingy and cranky once again. Overnight they woke up several times including once each with vomit because of a coughing spell. Also, yesterday morning I noticed a rash on Zak's neck and between his shoulder blades but it wasn't bothering him so I forgot about it. Last night when I changed him into pj's I discovered the rash had spread all down his belly, back and into his diaper area. He still didn't seem to know it was there so I let it go for the night.

This morning as soon as the pediatrician's office opened I called and got them both an appointment at 8:15am. When Zak woke up I looked and found the rash to be just about the same as it was last night. But Ryder had gotten worse with a very bad cough, wheezing, and thick green mucousy snot running out of his nose non-stop.

First, the pediatrician looked at Zak and decided to do a strep test because his throat looked really red. That test came back negative. She then gave me a lab slip to go get blood work done on him to check for Mono. She explained that his rash looks like Roseola, but having the red throat with a negative strep test could also mean Mono. She will call me back with the results from his blood work. If the Mono is negative then she is going to say he has Roseola. Because of Zak's low immune system we will just need to keep a close eye on his breathing and treat any fevers he has along with making sure he stays hydrated. Both Roseola and Mono are viruses so there is nothing really to do for them other to watch for secondary infections.

The pediatrician then looked at Ryder. She was very concerned about his breathing because his respiratory rate was too fast and his lungs were full of junk causing him to have decreased breath sounds in both lungs. Also, his pulse ox was low at 89. So she did a breathing treatment in the office. During the treatment his pulse ox went up to 97 and once the treatment was done it stayed steady around 95-96. She said even after the breathing treatment she could still have lots of wheezing and junk in there. She prescribed him antibiotics for 10 days and oral steroids for 5 days and diagnosed him with bad pneumonia. I am supposed to do the breathing treatments every 4 hours and if his wheezing doesn't improve or the respiratory rate remains fast we might end up in the hospital. I am hoping to avoid that with getting the steroids and antibiotics inside of him quickly! We are going back in 3 days for them to listen to his lungs and hope for improvement. She said with all the snot he has that could mean he might also have a sinus infection as well so the antibiotic will work for both types of infections.

Once we left the pediatrician's office we went straight to the lab to have Zak's blood work done. He did amazing! He let out a scream when the needle went in, but then he laughed and talked with the tech while she took out 3 tubes of blood. He was very excited to get a sheet of stickers afterwards. Then we headed to Chick-Fil-A for some breakfast because I knew they have almost no appetite, but I figured their favorite hash browns might be good motivation to eat and I was right! We then took the prescriptions to CVS and bought my some soda while waiting for them to be ready. While there I found out that there are no more refills for the Albuterol we use for breathing treatments so I had to call the pediatrician's office to ask for them to call in a prescription which can take up to 72 hours. UGH!

Now we are home!

When I got home and checked my e-mail I was happy to see an e-mail from the genetic counselor! She said the Dr.Hamosh would like her radiologist to see the actual images from his previous MRI which was done at 12 months old. She said that they want to double check to see if these lesions were or were not in that scan. So I need to get a CD with the images sent to them as soon as I can. I called AAMC to find out what I needed to do in order to get that done. There is a form online I need to fill out and send them (fax, mail or drop off myself). Then they will get the images together and sent to Dr.Hamosh. I could choose to pick them up and mail it myself, but I don't know that I want to drive into Annapolis with 2 sick kids so I will just hope the hospital really gets them mailed! I am going to try and run out tomorrow to fax this form as long as the boys cooperate (I might call for some help from Rich or Laura if the boys are not cooperative!). Once they get the images and can compare the two scans I will hear back from them. The genetic counselor said Dr.Hamosh has some recommendations for us either way (if the lesions were there before or if they weren't there before), but they need to wait and see the images before moving ahead. If the lesions were not present in the 12 month MRI they think that there might have been a small stroke (or possibly bad infection) which caused these lesions and therefore causing his recent regressions or lack of improvement in some skills. I am not sure what the thought process is if these lesions were present in the previous MRI. But from the e-mail I am now realizing the location of these lesions must be some place that is causing some of his "issues" or some place that can cause other "issues". I was hoping to hear back that the location of the lesions should not cause any problems and that they were "benign", but that doesn't look the case here. I will continue to update as I get more information!

As for Ryder's eye appointment, it went well. He did not enjoy the drops being put into his eyes, but otherwise he did amazing. The eye doctor was even able to get some pictures using a machine that he is only able to use when children are sedated, but Ryder didn't mind at all. He does not have perfect vision. The doctor explained to me that with kids this age they only use glasses if their eyes are at two different prescriptions, but Ryder's are the exact same so he doesn't need anything right now. We will follow-up in 6 months to check for any changes.