I wanted to send everyone an update on Jadalyn. She is at home, doing well, since her last hospitalization in January. Although we have been back and forth during that time to CHLA, our most beloved place, haha!!! So let's see what has been happening? She had tubes placed in both of her ears by the ENT (Ear Nose Throat) Doctor at CHLA. His name is Dr. Maceri and I really liked him. He was very nice and professional. He did a good job. There was a little bit of bleeding from one of Jadalyn's ears that night but she recovered and has seemed so very happy since. Smiling and LAUGHING. Okay, her Daddy said she laughed before but I must have mind melt because for me it was a first and it was amazing and wonderful. She just gets this really cute and huge smile and then laughs. Too cute! Usually this happens in her most active time, 10pm!!!! She had a follow up with the ENT a month after the surgery and he was happy with the results, he did say that there was still some redness remaining in her one ear (the same one that bled) so he gave us antibiotic drops. Both of her inner ears had been infected, no wonder she hated having her head moved so much. I wish someone had figured this out sooner, but there were other more pressing issues and I guess no one ever thought about her ears. That is until I tried to reschedule her hearing test. They said she needed to be seen by a ENT Doctor prior to being retested. So that is how it happened. So she had her hearing test re-done a few weeks ago. They sedated her and she did not like the medication at all. She was out of it but hitting her arms about and acting very agitated so the Audiologist and Nurse had me come back in and hold her. They had put the probes in her ears and put the sticky sensor tapes on her head (for the ABR - Auditory Brain Response hearing test) Both tests failed for the time they tried to do it before she got agitated. They did it at the highest decibels they have available. They said her shunt could have affected the ABR test result and the bad reaction to the sedative could have affected the other test. But as this was a re-test and had the same results as the original test (in August) they suggested getting hearing aides for Jadalyn. Another drama... They cost $2,950 and our insurance covers $750. Who knew they could be so expensive. I called the place where they would fit and make them and they told me they need payment up front. Yikes. So I'm investigating all the avenues. We have Blue Cross PPO - they pay $750, we have Tricare - they pay nothing, unless you the Subscriber is on Active Duty, we have Medical and therefore could qualify for something called CCS. So they sent me paperwork to fill out and return to them. They definitely make you work for the money! So we will see. The Audiologist told me that we should try them on Jadalyn for 2 - 3 months. See if they make a difference during her therapy, waking hours. If so, great. If not, then what??? They do not want to say anything either way about her hearing. So I choose to think she can hear to some extent, to what extent, I do not know... She is still wearing glasses. We went to the Opthalmologist and he told me that her optic nerves are very small and so he did not see the point in Jadalyn wearing glasses. Again, I told him that I think they help her to see. George (her Daddy) told me that he has small optic nerves and yet he sees perfectly. So maybe structure doesn't always follow to how things in our bodies will perform. I'm learning more and more everyday! Her Optometrist is much more optimistic as he has seen what people have said to be impossible. He actually goes to Jadalyn's Nurse Lidia's church. Small world. On one of her recent CHLA hospitalizations, they did a C-T Scan to check her shunt and said that her ventricles were shrinking. Those are the places in the brain filled with fluid, and in Jadalyn's case were larger than the brain portion and were in the way of her brain growing. Since the ventricles are shrinking, her brain must be growing. The reason I say this is because Jadalyn has become so much more active, alert, and reaching out to touch things (purposefully). She reaches out and touches her Daddy's hairy arm (a favorite of hers!) she reaches up to touch toys, she is bringing both hands in towards midline (the center of her body) to touch a toy. It's amazing and wonderful and we couldn't be happier for her. She continues to amaze everyone! Our little miracle baby :)
Jadalyn has been to the ER about once every 3 weeks due to her continuing reflux issues. So we are usually there anywhere from 12-18 hours and then she seems to be okay and they send us home. As long as she does not need continuous care from them they have been sending us home because CHLA is very full these days. She gets the usual, X-Rays, I.V. etc. they get her hydrated and off we go. It is always traumatic for her and for us but we are always happy to go home at the end of that day. Basically what we have been told from various doctors (at the E.R., in the hospital and by her Gastroenterologist) is that Jadalyn has slow motility (emptying of her bowels) and severe reflux. So she must eliminate every morning and every evening (or thereabouts) or else things just back up and then get pushed up into her esophagus and then she tries to throw up and turns blue. So we are now giving her prune juice and a variety of medication. We also have to "help" her out in the process. But as long as she is going, the problems cease and she is one happy little baby. All doctors have basically said that they want to avoid the Nissen (surgery where they wrap part of the stomach around the esophagus). So we will do whatever we can to avoid it. So far, so good! The other issue is her new G-J Tube which instead of depositing the food into her stomach, goes beyond her stomach in to her Jejunum (part of the intestines). So that way there is less risk of the food coming into the stomach and her refluxing. At this point any food in her stomach makes her vomit. This tube has been very problematic. We are back at CHLA every few weeks because it has come out of the Jejunum and it has become blocked several times due to a variety of reasons. As it is so far deep in her intestines, we can not replace the tube ourselves and therefore have to contact her Gastroenterologist who contacts the Radiology Department at CHLA and we bring her there where they check to see if the tube is out of place or blocked. The good thing about this whole procedure is that it is outpatient and once we receive the go ahead, we take her to CHLA, they do what they have to do, and we leave. I can't tell you what a relief that is! I just wish it worked better. We may be losing our beloved Nurse Lidia at the end of May due to the Medi-Cal Insurance we are now on. We would be very sad to lose her as we love her and she is so good at taking care of Jadalyn. We are trying to work on a solution to keep her but we are not sure what will happen. Pray hard that it will all work out!
Finally (phew!) in addition to Jadalyn's Physical Therapy, Occupational Therapy, Vision Therapy and Reiki/Massage Therapy, she will be getting a Speech Therapist (once the Audiologist sends her referral to Tri Counties Regional Center and it is approved). She is one therapy laden girl.
Love and Hugs,
Liz, George and Baby Jadalyn Sidener
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