Search This Blog

Tuesday, July 6, 2010

Hospital Life...

Taming my lioness has been unique and sometimes challenging. Her hospital stay was one of those challenging times. Niki's bleeding disorder doesn't define who she is, but I can't deny that it has been a very significant part of her babyhood. She won't remember what she has gone through in the past 16 months, but I want to do the best I can to write accounts of these situations as accurately as possible. I document and photograph it all -- the good, the bad, and the ugly -- so Niki can look back one day and have a sense of everything that she went through. Maybe she'll appreciate it and maybe she won't, but at least I gave her the opportunity to know her story.

Hospital life is interesting. I've been hospitalized numerous times before so it was different to not be the patient for the change. Having a sick kid is hard enough, but taking care of a sick kid when you're in early pregnancy is exhausting. Niki had a rough 1st night in the hospital. Once her burst of energy was gone, it was all down hill from there. She barely slept and cried often because she felt so miserable. (This was right around the time that her Tylenol was starting to wear off.) There were times that Niki only wanted to be held by me so my arms would cramp up and go numb from holding her so much. John was equally exhausted because there were times when she only wanted him. And to top if off, the poor guy was forced to sleep on the pullout chair/bed. At least Niki and I got to sleep in the bed.

It was starting out to be a not-so-Happy Father's Day for John.

Kaiser SF is a teaching hospital so the following morning two Pediatric Residents came in the room to speak with John and I about Niki's results and treatment plan. She didn't have pneumonia, but the chest x-ray results came back showing an abnormal density in the right lung -- right next to the heart. The Residents told us that they were going to get a second opinion on the x-ray results since the Radiologist wasn't used to pediatric films. We were all hoping that the Radiologist was just overly conscious when he/she interpreted the results. The good news was Niki's lungs sounded a little less noisy so even if she was fighting something growing in her lungs, the antibiotics would take care of it.

The more concerning news was the fact that Niki's preliminary blood cultures came back showing gram-negative rods. Niki had a false positive for gram-positive rods before so I asked if there was any way that it could have just been a contaminant. The more senior Resident of the two (I'll call him Dr. A) informed us that gram-negative rods are usually the real thing. She definitely had a Broviac line infection. It would take some time for the laboratory to isolate the exact bacteria that infected her line. In the meantime, Dr. A advised us that Niki's attending doctor (I'll call her Dr. Cool) wanted to keep Niki on three different heavy-duty antibiotics in hopes that the combo would cover the broad range of "gram-negative bacteria possibilities". It takes approximately 2-3 days for bacteria to grow. The doctors were expecting to find out more by Monday, June 22nd when the final culture growth actually identified the bacteria. Niki was going to continue to get an IV dose of Tobramycin every 24 hours as well as Vancomycin and Zosyn every 6 hours (4 times a day).

Have I lost you yet? No? Good. A little? Re-read that paragraph again because there really isn't a way I can word it simpler. I tried, sorry.

It was hard to determine just how far the bacteria spread in her bloodstream. Niki definitely had bacteria in her Broviac because that was where the culture was drawn from, but the ER should have also drawn a peripheral culture on Niki. (Meaning a blood draw from her hand or some other source other than her Broviac.) True bloodstream infections can only be confirmed by the results of a peripheral culture and because the blood wasn't drawn before she had antibiotics, it was hard to tell just how badly Niki was affected by the infection. However, based on the fact that she was exhibiting symptoms of bloodstream infection (vomiting, chills, lethargy) for several days before her fever actually spiked, the doctors were leaning toward the idea that bacteria also infected her blood stream. The ER doctor should have done a blood culture when we went there on Tuesday, 6/19.

A bloodstream infection is serious shit and poor Niki had one.

Evidently, kids can turn make a turn for the worse very quickly when they have confirmed Bacteremia. So, they were treating Niki's infection very aggressively. Thankfully, her treatment plan was very efficient so John and I felt at ease. The doctors were closely monitoring Niki's fever curve and fluid/food intake/output to track her progress. If Niki's fever curve didn't improve or her intake/output decreased then it would be time to worry. The nurses told us that there was a definitely a Higher Power looking out for Niki. Dr. Cool (her attending doctor) is a Pediatric Infectious Diseases specialist and she only does hospital rotation about every six weeks. So, Niki had THE BEST doctor available to care for her infection. There was absolutely no delay in treatment.

John and I met Dr. Cool shortly after the Residents left and she was wonderful. Her bedside manner was fantastic. As it turned out, one of the residents was perfect too. Dr. A was going into Hematology as his specialty so he had a very special interest in Niki's case. He came in later that evening to pick my brain about Niki's Factor VII Deficiency. We talked on a personal level for about 30 minutes. He was really very nice. It's reassuring to know that the people taking care of your kid actually care about your kid. I've met some doctors in the past that didn't seem to care (crappy bedside manner) and it really sucks. I know that Niki can tell the difference too because she responds more positively to the nicer doctors.

Niki would do fine when she was on Tylenol, but she would rapidly slip back into exhaustion as soon it wore off. She spent most of Father's Day switching between rest and activity.

Niki on Father's Day Morning - Tylenol was working in full force
Niki back at rest in the early afternoon - the Tylenol was starting to wear off...
Getting her infusion..

Niki was starting to feel a little better after she finished her infusion and got another dose of Tylenol. My mom passed by with the boys so they could spend some time with their sister and Daddy for Father's Day. She really perked up when the boys got there. The Tylenol kicked in again so the nurses encouraged us to let Niki get out and play. We took Niki to the playroom with the boys and her Daddy pushed her around on a toy car that she took a liking to. 

We were supposed to be at a Father's Day Picnic with John's family eating BBQ and oysters, but we had some yummy cheese steaks instead. Eating at the Cheese Steak Shop is a must if you're ever near Geary and Divisadero. Despite Niki being in the hospital, it was nice -- as close as we could get to a "normal" Father's Day. John took these pictures when he went out to get some fresh air and buy the steaks. I think they are absolutely stunning.

The Geary one is my favorite. :)

My BIL "J" took the boys to the Father's Day picnic so they could enjoy the beautiful weather. It was perfect timing because Niki was starting to sleepy and cranky. A few hours later, Niki's Ninong "P" came by with his girlfriend to visit Niki when the family picnic was over. Niki just got another dose of Tylenol, but it hadn't kicked in yet. So, they saw Niki transition from feeling pretty icky, to feeling really good. They brought her some goodies - a Color Wonder Stow and Go Studio and a very cute book called "Just Like my Dad" by Dave Melling. John and I really appreciated their thoughtfulness. Niki totally enjoyed her new gifts. (Oh -- and I forgot to mention that Niki's other Ninong "Ph" came to see Niki when she was in the ER. He's in school studying to be a paramedic and he just so happened to be working the day Niki got admitted.) Niki perked up even more when my MIL, FIL, and SILs stopped by. She was playing and eating up a storm. I like to think that Niki had an even better 2nd night in the hospital because of everyone's presence. Laughter is the best medicine and it's always nice to have family around you're surrounded by unfamiliar faces.

Hospital life is sucks when you're all alone. 

No comments:

Post a Comment