Wow - Thanksgiving is almost here and we woke up to snow on the ground this morning.
Anyway - Jessica is doing well. She made it through her first cold in 2 years with the assistance of all of our equipment and home and NO visit to the dr's office - AMAZING!!
However, her lips have been very chapped and she ended up with a secondary skin infection. I got home from work Thursday morning and her lips were swollen and crusty - so I called the derm office I worked at and they got her right in. How funny - no dr visit for a cold (which can be very detrimental to our kids) but she has to go in for her lips of all things!! So she is on antibiotics for that and they are looking marvalous again!!
Then Thursday night - my mom asked me to look at her leg (she got a flu shot Wed) - and it was red, swollen & hot the size of her thigh. Most likely cellulitis (another type of skin infection from the shot - or a reaction) so good thing she is on the abx anyway!
Last Wed we went to U of M to the pediatric vent clinic. She currently does not use any type of respiratory support while she sleeps. However, we have never had any type of pulmonary function testing done on her - so we were going for some baseline information on her. She has been very tired during the day lately - not really herself. So not sure if that is from hypoventilation at night - or just a growth spurt - who knows.
So - we are going to go back out to U of M for some additional testing to make sure things are going as they should. They are going to do an overnight sleep study to see if she is retaining CO2 at night and if that might be the reason she wakes up so much in the night. She might need a bi-pap machine on her at night to help ventilate her. She breathes well during the day - but sometimes out kids need extra support at night. They are also doing the pulmonary function test to see what her lung capacity is and another test to see how many calories she spends and see if we need to adjust her diet at all. Lots of information and a very long long day - but hopefully we will get some answers that we need.
We saw our wonderful PMR Dr today - Dr D - just love him! Jessica remembered that his favorite lunch is Diet Coke and Peppermint Patties (which was a tip from one of our freinds that see him as well)- so we had to stop at the store on the way to bring him a present. She was very cute with it. She hid it in the room and made him look for his present. He is great with her - he took the time to talk to her and see how things were going in her mind before we start to talk - again - just love him!
So we got our way overdue scripts that we needed for some equipment. She needs new AFO's (ankle foot braces) - new wrist splints - and she has finally hit the weight for us to get a specialized bed for her. So I am working on that today. Although - the bed that I want insurance will not cover (because it does not look institutionalized) - no really - they will only cover a hospital bed - but the one I want does everything a hospital bed does - the matteress does everything I need it to and costs the same as the hospital bed - but they won't cover it - stupid. So - it looks like I will have to settle for that if I want this. I think it will help her sleep at night. Her head should be elevated at night because of respiratory and the tube feedings. Not to mention after spine surgery - it would be much more comfortable for her. She sleeps so well in the hospital because we can adjust the bed to make her comfortable.
Anyway - school conferences are this week and I think report cards come home tomorrow.
The kids are asking about Christmas - I can't believe it is so close!! I want summer back already. At least this year - we won't be in the hospital for Thanksgiving or recovering from surgery.
Eric has been battle back/neck and arm pain for a long time now. He finally got an MRI and has 2 bulging discs. He sees a surgeon tomorrow to try and get some pain management - I don't think he will end up in surgery but he is miserable and can't really help with Jess because his arms and back spasm if he tries to pick her up. So hopefully we will get some answers tomorrow for him.
Oh - Happy Happy Birthday yesterday Gramps!! We love you!
