The In-Between Time

This is the fourth post of the series.  Read parts one, two, and three.

After my son’s first surgery, we went “home” (we were living in hotels because of leaving Guam and being sent up to Seattle). Of course, my three girls were all sick, I was sick and exhausted from having had the baby and getting no recovery time and my husband had to leave back to Guam only a few days after discharge from the hospital.

By this point it was late October and I was parenting four children while living in a hotel room.  Seattle fall and winter are wet and cold, constantly.  Getting a reprieve from our situation was difficult.  And with such close quarters, any time a bug caught hold we all got sick.  In the first few months of his life my son struggled with a couple different ear infections and a constant runny nose.  We were in and out of the cardiologist’s office and the pediatrician’s office an average of twice a week.  Because of the severe heart defect, my son also qualified for the RSV shots, designed to help him fight that disease off if he were to encounter it because catching it would be deadly.  That added another one to two appointments a month.

By Christmas time we had been given new orders by the military. I was so excited to be headed somewhere I could actually call home. Unfortunately, none of the doctors felt it was a good idea to send my son to another doctor between his first and second surgeries.  They insisted we were to stay put in Seattle until after his second surgery and he was cleared.  That information was very hard to handle.

At about three months after surgery, my son's scar was starting to fade and he was able at about the same development level he was supposed to be.
At about three months after surgery, my son’s scar was starting to fade and he was able at about the same development level he was supposed to be.

My husband was able to be with our family for a week over Christmas before flying onto our new base where he had to report for duty at the start of the new year.  We stayed behind and we were excited to know his surgery was scheduled for January 29.

Before that surgery could take place, our doctor requested we have a Cath procedure done at the Children’s Hospital as well as a very in-depth echo-cardiogram.  This procedure had to be done while he was under anesthesia.  The older kids went to a babysitters for the entire day and I settled in to wait for the procedure to finish.  Because it was just a day procedure we weren’t admitted with a room.

When the doctor came to talk to me I was slightly dismayed to find out that they had to try threading the tube a total of three times.  The first two times they tried the veins on either side of his groin and found they were too small to get the tubes through.  The third time they threaded the tubes through a vein on the side of his neck.  Other than that, the procedure went smoothly and he woke up easily, as planned. This procedure allowed them to map out his heart and know a lot better what exactly was going on and where all the blood was flowing.

Once that procedure was done, the hardest part was waiting for the next surgery.  The only thing that could stop this surgery from happening was if he were to get sick.  And guess what happened? Yup. He got sick. A few days before the surgery I was supposed to take him to the hospital for a pre-surgical check on his weight and to make sure we had all the information we needed.  The night before I couldn’t get him to sleep.  He was fussy and clingy and wanted to nurse constantly.  I was completely dismayed to find that he had a fever.  Actually I was angry.  See, once he got the surgery we were that much closer to being done and being able to have a home and stop living in hotels and my husband could finally be with us as normal again.

Blood DrawBecause of the fever, the surgery was cancelled.  Three days later we found that his eardrum had burst.  He had the fever in connection with an ear infection.  The doctors were very worried that if they were to have done the surgery while he was sick that it would turn a 5 day stay into a 5 month stay because the infections could spread and his body would have a very hard time fighting it while trying to heal. I was grateful for the doctor’s insight.

It took a week of antibiotics to kick the ear infection and then there was a required two week wait to prove he wasn’t sick again before the doctors would allow the surgery to happen, so it was rescheduled for February 19.

At this point in our story, my family and I had stayed in about 10 hotels due to budget issues, needing to move to be closer to a hospital or doctor’s office, or having used up the allowed time (military hotels).  The constant packing and moving made us all feel very uptight constantly and definitely wasn’t good for my son’s health.

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