Last Wednesday night Logan woke up with a fever and sounded like a toilet. I arrived home from work right around this time. I sent Joel back to bed and gave Logan a nebulizer and some Tylenol, he rested well the rest of the night. He woke up with a fever and as the day progressed, his fever remained, secretions began to thicken, and he became very lethargic.
I tend to downplay his symptoms, and that was just what I was doing. I thought, why take him to the hospital? We have everything here we need other than IV equipment. Thank god we have a home care nurse, Bonnie. She called the pulmonologists office and told them his symptoms. Shortly thereafter we received a call back from the nurse telling us to go to the ER. I began to cry. Not because Bonnie called but because I knew what this trip meant, a stay in the hospital. When Logan gets sick like this I often feel like I failed. I know I can't prevent every illness but it is still hard to accept how sick he is.
So, we arrived to the ER and proceeded through our normal ER routine...nebulizer, suctioning, IV, labs, chest X-ray, IV fluids, and medications. This time we were surprised, his chest X-ray had improved from the most recent a month ago. I was sure it was pneumonia. So we all suspect a virus. My daughter Lauren was vomiting and had diarrhea the weekend before but no fever.
So after a couple of hours waiting in the ER for a room upstairs, we arrived to the 6th floor. By the way, I am an ER nurse for those who didn't know so waiting four hours for a room seemed like no big deal. All the staff was so nice acknowledging the wait. I get it, hospitals are very busy these days and boarding patients in the ER is not uncommon. I was just thankful to have such skilled eyes looking over my son! Sometimes you just have to wait in line, even at the hospital!
My sick and tired little boy :-(
We spent four nights in the hospital. We had planned to travel up north for our yearly family birthday celebration. My husbands side of the family has a lot of birthdays in the fall so we pack them all into a weekend celebration. It happened to fall over my birthday so I was very excited to say the least. Unfortunately the plans had to change. On Friday my husband came to the hospital with goodies and supplies for the weekend. We decided he and our daughter Lauren would still go up north as she had been looking forward to the party. No reason to torture her and keep her home. She would just sit at home and worry.
Joel happened to not feel well at the hospital so he cut his visit short. He and Lauren still headed out of town, but he battled the stomach virus all weekend. By Sunday, Logan was feeling back to himself so we stayed one more night just to be sure. Now back home to our own beds! I have to say, my favorite part of coming home is the enormous hug I get from Lauren!
Logan is back on the mend!
While we were in the hospital, Logan's pulmonologist Dr. K came to see us. He was working in the ICU. We talked some more about our quest for a diagnosis. I updated him on the plan for DNA sequencing. I also told him we were taking Logan back to see the ENT to discuss having a procedure to tie off Logan's major salivary glands. He nodded his head and did add that an improvement in his secretions may only be temporary but he did not object to it. We talked about how it will continue to be very hard to keep Logan out of the hospital during illness. He urged me to pursue adding nursing care at night stating that we are going to get tired. My comment was, "I am already tired".
So now we are home and have more added to our plate. More medications, though temporary. More phone calls to make, and more decisions to make. I really wish I could be deciding on what baby gate
to buy to keep a busy walking two year behind than deciding on how to manage the schedule and demands required of a special needs child. Don't get me wrong, I wouldn't trade Logan in for a second but I am allowed to grieve over the loss of the typical developmental milestones. So now I must call our home care agency, start interviewing nurses, and contact our county case manager to request Logan be changed to a different waiver program in order for increased nursing hours to be covered. It may sound like a few simple calls but what it leads to is the bigger picture.
We will once again be letting strangers into our home to care for our child. We have been so lucky to have Bonnie and Marta as our nurses. I know we will find the right person but it still is not easy. I
have to also get past my fears of bringing in more caregivers. I have to let go of some control and trust in others! This isn't easy for me!
So we continue on our journey. Oh the places we will go...it's okay if that is the hospital from time to
time. It makes the journeys in between so much sweeter!
Logan's night nurse Nicole made this for me and put it up on his door while I was sleeping. It happened to be my birthday during his hospital stay! What a nice surprise!
Last nap before the car ride home!
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