Sunday, October 20, 2013

Thank Goodness Babies Don't Have Memories (Part One)

Early last Saturday morning I realized that Luca had a fever.  Any mom will tell you that the hospital drills into you before you leave with your newborn that any fever 100.4 degrees or higher needs immediate medical attention.  I woke Kaylon up to tell him I was going to the ER and headed out.

Luca's fever was up to 102.5 at the ER.  I informed them also of his doctor appointment 2 days earlier where we had discovered he had not gained weight as he should- he was still below his birth weight at two weeks old.  They started to do what I knew they would- a full work up.  They ordered blood- both counts (heel sticks) and cultures (IV), a urine catch by catheter, and the dreaded spinal tap.  Everything but the catheter they had to do twice because they didn't get it right the first time.  They eventually gave him an IV as well, which also took two attempts.  It was absolute torture to sit there with him as he screamed and know there was nothing I could do.  I left the room for the spinal tap, but couldn't bring myself to move farther than the hall outside his room- it felt like abandonment.  That's how I found out that they did the procedure twice, because I saw the nurse leave and come back with another kit.  His blood results came back with a high white blood cell count, so they started him on two different antibiotics, knowing there was an infection, just not what kind.

Our insurance made the decision to send him to National Children's Hospital,in DC, where he would be admitted.  Kaylon and our home teacher made it to the hospital before we left and gave him a blessing, which said that the doctors would be able to help him and that he'd be ok.  I didn't worry about him from that point till 2 weeks later.  Kaylon waited with us till the ambulance arrived and then took the van which I had driven back home.

Once we arrived at Children's we were ushered into a huge room on the 7th floor (extended stay wing).  Our favorite nurse- Anna- was there to greet us.  They ordered yet another spinal tap which they did in a procedure room without me (fine by me- I didn't hear him cry and I got to eat the first real meal that day).  They managed to get a small sample, just enough to check for meningitis.  They had to then fix his IV, but luckily they have a fantastic IV team at Children's who just do IVs all day long, so the process was quicker and less painful than at the ER.  Finally the tests were done and we were allowed to rest, well, as much as is possible with a fluid IV in the arm, 3 leads to the heart monitor on the chest, a blood pressure cuff on the leg, and an oxygen monitor on the foot.  Nursing him was tangled to say the least.

Slowly doctors and results started to trickle in, as well as explanations.  The spinal taps were hard because Luca was dehydrated- not from lack of nursing, trust me, but because the infection and fever were burning it all off.  The third one, while a sample was procured, could not be trusted because the ER had already given him antibiotics.   No one really thought he had meningitis, but since he was so little and they couldn't rule it out, they had to treat it.  At first news came that it was not a UTI, but the next day word came that it was a confirmed UTI- e-coli bacteria.  A doctor warned me Sunday that we might be looking at a week's stay.  An u/s of his abdomen was ordered since it was uncommon for boys this young to have uti's to make sure his anatomy was correct, which showed he was fine.  Infectious Disease doctors were given the power to decide treatment and on Monday they handed down their verdict: two weeks of IV antibiotics in the hospital.

Kaylon had to scramble.  He went to work on Monday with many friends' help with childcare.  He got a work laptop and permission to work from home for two weeks with the exceptions of Fridays and the conference the next Tuesday.  More friends offered to take the younger two during those days, and the older two after school.  My dad and his wife graciously agreed to take the full day Tuesday, so Kaylon could go to his conference that ran early morning till late at night.  I feel so blessed to have so many people love us enough to sacrifice like that, and for Kaylon's work to agree to such measures after Kaylon had taken off 2 weeks for Luca's birth.  Truly these people were angels on earth.       

Life for Luca and me consisted of round the clock vitals, three antibiotic treatments per day, doctor's rounds, and lots of nursing.  I had a reclining rocking chair, as well as a couch bed for sleeping.  In the interest of looking on the bright side of things, I can appreciate the one on one time I was getting with my fifth child- something near impossible at home.  I got to bond with him with no distractions (ok, maybe different distractions).  I got through those early sleepless nights, normal for any newborn, in a place where people offered to take him so I could get some sleep and where I was only expected to feed him the next day if we had a rough night- not take care of 5 other people as well.  By the time we got home 15 days later, Luca's sleep schedule was more consistent (though not perfect by any stretch of the imagination).  I even had other people cooking for me, though I did have to pay for it.  True it was exhausting mentally, emotionally, and physically, but seeing these positives makes things slightly better.

A central line, or PICC line was placed in his arm the Wednesday after we arrived to avoid constant IV insertion as veins gave out after a few days.  That procedure only took an hour or so and they just gave him a medicine to make him sleepy and a sugar water coated pacifier.  With that placed, his fever gone, and his weight increasing, insurance decided to send us to a transitional (read:cheaper) facility for the rest of his treatment.  They chose HSC (House for Sick Children, very original :/) and we were slated to leave on Friday.  I was excited, being told it was a more home-like enviroment, and that is had cheaper food (our food budget was already blown).  If only I had known what I was in for, I might have fought to stay there... tbc

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