We have our Kaylie back, Alexa seems to be doing well after her strenuous hospital stay, and we're all home together. Things are good. Alexa's hospital stay wasnt exactly what I expected. From now on given the option we will only get tests procedures and go inpatient from Boston Childrens. Not that this hospital (Baystate hospital) was bad by any means, but they just dont deal with children as often, and it shows. I felt so demanding because when we got to the room they wanted her to sleep in a big girl bed, and I had to request a crib. Also they didnt have suction set up or an IV pole for her feeding tube and vent. I could tell the guy was a little frustrated, he kept saying that there were no orders for that stuff. Reguardless of what the orders are she needs it, and recieves this stuff at home. I dont want to give the wrong impression, he was very helpful I think he was just getting flustered from all my requests. I hate putting people out. As an RN I know how frustrating it can be if people have all sorts of unrealistic demands, but these things were just medically neccessary. Poor baby was so terrrified and then angry when he was attaching all the leads to her head, and I was holding her in my lap with her arms pinned to her side. I hate putting her through this, and I dont even think it was a good study. She was so agitated from everything and all the wires that she slept very poorly and never really went into a deep sleep. I just hope they got some useful information...
Alexa had her hearing test and visit with her ENT doctor on Wednesday. It did not go well. They were unable to determine exactly where her hearing loss is because they couldnt tell if she wasnt responding to the behavioral test. She only responded to the loudest noises and to music, but didnt even flinch for the other lower noises. This would be a significant change from her last hearing test. So they believe she wasnt cooperating because the sounds werent interesting enough. Lets hope that was the case. So they are going to retest her next month and if we still cant get an accurate result they will do ABR (auditory brainstem response) testing in the OR under anasthesia. Let's hope they can get an accurate test next month because anytime she recieves anasthesia she needs to stay over in the ICU for monitoring. We really need this information to be accurate for her hearing aids. This age is such an important time for developing language skills, and I cant help but feel we're missing valuable learning time. 
Good news I think... All the health insurance stuff we've been dealing with lately appears to be getting figured out, and for the better I believe. Mass health is enrolling us into a program called the Kailiegh Mulligan home care program. "This program is a home care program for severely disabled children who require skilled nursing care or are dependent on assistive technology. It does not count parent income or assets in determining financial eligibility. This program allows children to receive care at home that is equal to the level of care they would receive in a nursing home or other medical facility". We just have to fill out some more paperwork, but it looks like they are covering most everything our other insurance wont, plus some. Such as a case coordinator who will be able to help with all the details. They will even cover a respit nurse coming out to the house to care for Alexa, so I might be able to go back to work... We dont know how many hours we'll be allotted yet though so we'll see. I didnt even know about this program before, so glad there are safety nets in place for parents with medically challenged children. 
So now we're debating whether or not I should go back to work. Not full time, but maybe part time or perdium. The problem is NO childcare place would ever accept Alexa, and I dont think we'd trust them anyway. Not that there arent wonderful places that take great care of kids, but because I dont think anyone could handle all her medical issues. The other problem is that with all her appointments, procedures, therapies and hospital stays would I even be able to? This is where a respit nurse would be great, but I dont want to leave Alexa either she gets so scared so easily I dont want her to be fearful of someone else coming into the house while I'm not there. The anxiety and guilt of leaving her would be almost unbearable. We have awhile to think about things as I wouldnt be able to get a job until Kevin gets a better job with more stable hours. Hopefully we can figure something out, as the extra income would be a huge help.
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