Odds & Ends

As much as it seems like there is little to nothing going on with Tim right now it seems there are still a lot of things that seem to happen every day.  Yesterday Tim had our family friend Katie come to visit with him in the morning in anticipation of a family dinner night that meant mom and the rest of the crew wouldn't come in until the afternoon.  While Katie was there some techs showed up to change the dressing for Tim's PICC line while he was heartily eating his breakfast.  Now, please keep in mind that Tim is very sensitive about anything involving IVs and such both because of the needle/catheter in his arm as well as his sensitivity to adhesives in general.  With this in mind, both Tim's nurse and Katie suggested that the dressing change could wait until after Tim was done eating. The techs that were there basically said no and proceeded to do what they needed to do.  This set Tim off in such a way that he didn't want to go back to the breakfast he had been enjoying and needed mom to come down to the hospital hours earlier than planned which caused a variety of issues as the day went on like the fact that Rosie was never able to take a nap, Lou went a little stir crazy and everyone just wound up being a little grumpy with each other.  

With all this in mind today we are going to push to establish a better standard of care for Tim with the doctors.  It seems to us that at times Tim is little more than a checklist or a spreadsheet to some of the people at the hospital with things they need to do with very little regard to the fact that Tim is a person with opinions, feelings and deserving of respect especially since he's going to be a long term resident who, at least for now, had very little going on with him.  We've had enough of these bumps in the road since moving to the new hospital that we are going to have to be more insistent about how they treat Tim, both medically and more generally.  We are going being forced to ask that nothing be done to Tim without one of his parents present, that he has an approved list of nurses to take care of him so we can avoid the sleeping issues we written about before and while we've temporarily held back on our fight to get Tim to the playroom we will likely pick back up on that crusade as well.  On that subject, what amazes us is that even though Tim has been forbidden to leave the floor and it has been represented to us that no children on the cardiac floor will be allowed to leave it while they are admitted there are a LOT of members of the staff who are unaware of this policy.  We've talked to doctors, nurse practitioners, nurses and all sorts of other staff who are all flabbergasted when we tell them about how Tim isn't allowed to go to the playroom.  So, while we are definitely going to be fighting that fight for Tim, we are also thinking of the other families that may not know to fight these fights for their kids too.

On the subject of fights that are worth fighting for us and everyone else, we also want to organize a letter writing/phone calling campaign regarding the cost of parking at the new hospital.  At the old location the hospital owned the parking garage and controlled the costs, so with validation you could park 24 hours for just $5 - not bad for a family in any kind of crisis that resulted in their child being in the hospital.  At the new location the Standard Parking Corporation now owns the lot.  It does not serve as a parking structure just for the children's hospital as it is a busy and congested part of the city, but with validation parents are now paying $10 for 7 hours of parking or $15 for a full day.  That means a family, such as ours, that needs to pay to park every day would be looking at $300-$450 a month just to be able to see their sick child.  We're not against the company being able to make a buck from anyone parking in the garage to stay at one of the many luxury hotels in the area, and believe me they do when they can charge $39 a day to park for non-validated customers.  What they do need to do is take into account that they are now providing a service to families during their most desperate time, and that service is not covered or defrayed by insurance.  With that in mind we would love to get some help with writing letters, sending faxes or calling the Standard Parking corporate headquarters to let them know that the entire community is against making parents of sick kids pay the high parking rates they are charging.  We are sure they will try to tell everyone that there are less expensive lots nearby, but that begs the question why should a parent with a sick kid have to seek out less expensive parking further away from the hospital?  Here is the contact information for Standard Parking for anyone willing to assist us on this crusade:

Standard Parking Corporation

900 North Michigan Avenue

Suite 1600

Chicago, IL 60611

1-888-700-PARK (Main Phone)

1-312-640-6169 (Main Fax)

Of course, if anyone wants to also send letters to the newspapers, alderman, or anyone else you think would be worth writing to feel free.

On a cheerier note, one of the many Friends of Tim from Tim's Facebook page (https://www.facebook.com/FriendsOfTim) is running a new fundraiser.  She is selling crochet patterns to make your own stuffed Super Tim doll.  From the pictures they are adorable and are supposed to be relatively easy to make.  $5 gets you the pattern from https://www.etsy.com/listing/102046842/super-tim-amigurumi-pdf-pattern.