Wednesday, October 26, 2011
Jeremy was discharged from the hospital today. We got him home about 3:30pm. I had to go to Madison's parent teacher conference and then to her last volleyball game. When I got home Jeremy had spiked a fever of 102.7 We are on our way back to the hospital. Please please pray. If they can't get the fever to go down, they are talking about another surgery.
Tuesday, October 25, 2011
Yesterday Jeremy called me saying he was in quite a bit of pain and was going to the ER. I told him I would meet him there. After an ultrasound we found he had a testicular torsion, which could have been caused by his vasectomy he had 3 weeks ago.He went into surgery about 3am. After the surgery I came home got the boys off to school and took Avery to her appt. She went to a sleep clinic, where they evaluated her breathing and ask a lot of questions. At the end of the appt, it looks as though decompression surgery is what is best. Wow, lack of sleep and a lot of not so good news= a lot of tears. I'm sure after we get Jeremy home and I get some good rest, things will look a lot better, or will be easier to handle. Please keep Jeremy and Avery in your prayers. Pray that Jeremy has a fast recovery and that the decompression surgery will fix Avery's breathing issues.
Friday, October 21, 2011
Avery had an ENT appt today. They put a scope with a camera at the end down her throat to see if her vocal cords were working. Vocal cord paralysis can be a sign of pressure on the brain as well as breathing issues. Everything looked fine. Another day with good news. Our next appt is on tuesday for the sleep clinic.
Thursday, October 20, 2011
Avery saw the urologist yesterday and had an ultrasound on her kidneys. Everything looks good as well as the pressure in her bladder. No bladder surgery. YAY!!!!! Pulmonary called me yesterday and explained in more detail about Avery's sleep study. She told me that Avery's brain is telling her not to breathe, its not actually her lungs. So the oxygen really isn't helping her, which is why they were so concerned about her shunt. Now that they know her shunt is working fine. They have moved to other things that may be causing this. They want to rule out all the little things before they start talking about decompression surgery. So tomorrow we see the ENT and he will scope her throat to make sure her airway is not obstructed. Next week we will go to a sleep clinic, where they will monitor her for a few hours. I can't tell you how glad I was to hear that she did not need bladder surgery. With everything else going on, I needed that good news. It allowed me to get through the day. Thank you for all your prayers.
Tuesday, October 18, 2011
Spent last night at the ER with Avery. She has been congested for about a month now. I have taken her to the doctors 3 times for the same congestion. The first time they told me it was a cold, the second time they thought it might be reflux and the third time they increased her dose of reflux medicine. Her wheezing has got much worse and she is starting to choke again when she eats. It wasn't until she turned blue a couple times that I finally took her in. I thought maybe she was aspirating while she ate, because the wheezing was always worse after that. The choking when she eats and turning blue was something she had done when she was first born and then it went away until recently. After 5 hours of x-rays, O2 monitors and 2 breathing treatments, it was decided she had a viral infection. I'm not sure but I feel this was there way of saying we don't know what is wrong with her. She is back on oxygen at night and may end up with it during the day as well. Her oxygen levels are very low when she eats and when she sleeps. They also set up another swallow study, which we had today. She is not aspirating, which is good. She does struggle with drinking too fast, which is causing some of the choking. I finally got some answers about her sleep study. They used all kinds of fancy words that pretty much meant she struggles to breathe. The big question now is, why are things getting worse. We have another appt tomorrow with urology and then we see ENT on Friday.
Sunday, October 16, 2011
Thanks for the prayers. Averys shunt is fine. They are talking about decompression surgery, but we have a few more tests before that is finalized. I still have a lot of questions about her sleep study and why they thought she may be having a shunt malfunction.
Thursday, October 13, 2011
I received a phone call this morning from Avery's pulmonary doctor with the results from the sleep study. She said she wasn't happy with the results and wanted me to bring Avery in for an x-ray of her head. She thinks her shunt may be malfunctioning. When I got the phone call I was at the eye doctor for Avery. We finished up there and drove to the hospital. When we got there we found out that Avery's neurologist was contacted and wanted Avery to have an MRI instead. They couldn't get her in right away, so they sent us home and said we would hear from them within 24 hours. By the time we got home they called and we are scheduled for one tomorrow. Please pray that her MRI is normal.
Monday, October 10, 2011
Avery had two appts today. Another hearing test and ENT. Her hearing test showed that her right ear is still the same and her left ear is hearing normal. What great news. I asked what this meant and they told me as long as she continues to progress with her speech and development. She won't need hearing aids. Hip Hip Hurray!!!!!!