The LONG Month of February

One of the things I find hardest to do is share our "real" day to day story. It is easy to post cute, happy pictures of William's progress, but I find it hard to write or illustrate the days that are hard and exhausting. Part of me thinks that it sounds like complaining and the other part of me is holding my breath and praying that things do not get worse. I find it hard to write about what seems to be a hard day or month when I know so many children like William that have been in and out of the hospital. We have been there and those days are so much worse. William has blessed our lives in so many ways and one of those is that we have been given a unique perceptive about life, love and family. I am so thankful for every second I am given with my son and my family.

With that being said, here is why I am ready for spring. The long month of February 2013. The month started out with us losing our Monday and Tuesday day nurse. She needed a different schedule and a case closer to her home to take care of her family. So a new nurse was orientated and set to start the first Monday of the month. Unfortunately, I had to send her home with in the first 2 hours. The entire house heard that she was unable to complete the least complicated test on the ventilator.  When the night nurse was trying to help instruct her she stated that she "hates these machines" and then blamed her test failures on the fact that she had stomach pains and diarrhea.  Our night nurse, who has been with us since we brought William home with his vent and is fabulous, reported this to me as it made her feel uneasy. So I then question the new nurse about how she is feeling explaining that it can be fatal for William to get sick and that if she is not feeling well it is better that she go home. She tells me that she is 99% sure she is not sick and attributes it all to the fact that she was up at 3:00 AM to shovel the snow (really?) and that the roads were really bad. She also said that she had not called in sick in 20 years (really?) and when I asked her if she got a flu shot she said that she once had a bad reaction and doesn't get them (really?). I asked her to go home and asked the nursing agency not to send her back. I will never know if she was really sick or just had a bad morning and was nervous, but my instinct told me that she was not the person I wanted to trust with the care of my son.  Coincidentally Friday evening William spiked a high fever and I called his doctor after hours to get a prescription for Tamiflu. Within 24 hrs his fever was gone and he was back to himself with just extra nasal secretions.

That Sunday Dan and Juliet went out to a spaghetti dinner fundraiser. Shortly after they left, I get a call from Dan. He tells me that he had fallen on ice and can not move his arm. He was sure something was broken. Of course it is a time of day we do not have nursing help so I am unable to leave the house.  Thankfully a very kind fellow Mason, Mark Jacobs, drives Juliet home.  Juliet being the strong, independent girl that she is gives this stranger, driving her mom's mini van, directions home and initiates a conversation about the Bears and Jay Cutler. Mark then goes to the ER and sits with Dan and brings him home when he is discharged. Thank you Mark!! Meanwhile I call Dan's parents to let them know what is going on and Debbie gets in the car and drives up to help! Thank you Debbie!!

And then it began, the sickness. Whatever illness we were all exposed to takes everyone out. (Except Juliet...she seems to have the strongest germ fighters.) Our week day night nurse called in sick the Sunday Dan was injured, our Wednesday thru Friday day nurse called in sick two of the three days and our weekend night nurse called in sick both days the following weekend. (Plus we still do not have anyone on Monday and Tuesday during the day.)

By the end of the week, William had gotten worse. His lungs were no longer clear. We aggressively get him a steroid prescription and give him albuterol breathing treatments, 20 minutes of his smart vest wrap and cough assist every 4 hours for basically the rest of the month until we could return to his normal airway clearance routine of just twice a day. (The smart vest wrap goes around his chest and is vibrated for 10 min. at one frequency and then another 10 min. at a higher frequency to loosen secretions. The cough assist helps produce or simulate a cough by forcing air in and out.) To all of our nurses credit, we were able to keep William from getting pneumonia and kept him out of the hospital. They took wonderful care of our son.  We are so appreciative and grateful.

We thought March would be return to normalcy.  A new nurse was scheduled to start on the first Monday in March.  Well, she did not last long.  On her first day on the job I helped show her all of the therapies and tricks to care for William. While I was upstairs switching the laundry, Juliet quietly went downstairs.  Unknown to me, Juliet starts quizzing the new nurse. According to the nurse, Juliet's interrogation went something like this:

Juliet:   Do you know how to use the feeding machine?
Nurse:  You put the formula in the bag and prime it through the machine.
Juliet:   Do you know how do you give him his breathing treatment?
Nurse:  The nebulizer hooks into the ventilator tube.
Juliet:   When do you give him his medicine?
Nurse:  Juliet, I know how to take care of William.
Juliet:   That is not the question I asked.

Needless to say, Dan was happy that his daughter was checking up on her little brother and was skilled on cross examining.

So, the nurse quit after her second day citing that she found Juliet's behavior offensive and that I hovered too much. I am not upset that she quit, we all knew that she was not going to be a good fit. It is just frustrating and exhausting to be short of help.

William getting his smart vest wrap treatment.