Tuesday, April 9, 2013

Gage's Hospital Stay

We've been home for almost two weeks now, and I feel finally able to write the details of our recent health scare.  I'm sure this will get long, so here's the executive summary:  Gage was in the hospital for a month.  It took the doctors three weeks to find out what was wrong with him.  He has an auto-immune disease and is on several medications and will need significant follow-up to make sure that he gets back to good health.  During the hospital stay a CT scan revealed a mass in his liver.  It is probable, although not certain, that the mass is benign; likely a hemangioma (often called a 'strawberry mark' when a child has one that's visible - they can occur anywhere in or on the body).

Now, the long.  Gage started a fever in the middle of February, on a Saturday.  It was going up to the high 103s.  Monday morning I took him to the doctor and he got a positive result on a rapid strep test (which surprised me, since he hadn't complained about a sore throat at all).  We were prescribed Amoxicillin.  His fever didn't go down at all...I mean, it would go down, but it kept coming back up again.  It was spiking the high 103s twice a day, like clockwork (between 1-4 in the afternoon, and around midnight).  After he'd been on the Amox for 48 hours I called the pediatrician and said that I thought he needed something stronger.  They said to give it a few more days.  I was treating the fever with Tylenol and Advil - alternating - and the medicine would only bring the fever down a degree or so, until the fever faded a few hours later.  In between fevers he seemed almost normal, just tired.

From Feb 16th to the 28th I talked to the ped. several times and had him seen twice.  They said that if he still had the fever by the 28th they would send him for bloodwork.  Wednesday night, the 27th, he forgot to flush the toilet and I saw that his urine was dark in color.  I immediately thought that he was dehydrated (he'd had the fever for almost two weeks now) and started really pushing Gatorade.  On the 28th we went for the bloodwork, but in the afternoon his urine was darker than the night before, and he'd had PLENTY to drink.  He was also very lethargic, just not himself at all.

I felt something change in my heart, and I knew that I had to take him to the hospital.  I didn't want to wait for the bloodwork to come back - I needed him seen.  Honestly, I thought that they'd give him a bag of fluid and a stronger antibiotic and send him on his way.

I called the pediatrician and she recommended that we take him to Lehigh Valley Hospital - Cedar Crest, which has a pediatric wing.  She called the ER to tell them to expect us, and we got there around 5:00.  His initial bloodwork came back that he had high white cell counts - indicating infection or inflammation - and his electrolyte levels were perfectly fine - he was not dehydrated.  They admitted him, and by the time we got to the room it was 1:00 AM, so there'd be nothing more done that night.

They spent all day Friday and Saturday running tests, and nothing was coming back positive except that he had the high infection/inflammation markers and he had blood and protein in his urine, and his blood pressure was high.  Saturday night they did a CT scan and found the mass in his liver.  The size of the mass has been debated a little - apparently the borders of the mass are not clearly identifiable, and the readings have put it between 4.3 and 6.6 cm across.  Not tiny.

No one knew what the mass was - all they could say with certainty was that it was 'atypical.'  The best guess was that it was an abscess - a pocket full of infection.  It would explain the fever and the high white counts in his bloodwork.  It did not explain the blood in his urine, which was still happening, and getting worse, but the doctors thought that his kidney function might be a kind of separate issue.  They started treating him with broad-spectrum antibiotics through his IV.  They said that the abscess would either need to be removed (major surgery) or biopsied or drained (both risky).  They first wanted to shrink it with the abx.

They put in a PICC line (a long-term IV).  He'd already been through four IVs at that point - his veins kept blowing or clotting.  We received a few diagnoses about the kidney issues, all of which were later proved to be false (thank goodness, because they were really scary!).

For the two days that followed Gage seemed to improve.  His fevers went down a little (although not away) and his white count went down a little, indicating that the infection/inflammation was going away.  Everyone was pleased.  But on the third day he got worse again.  The doctors changed the abx to give the infection a new attack, but Gage didn't get any better this time, he continued to get worse.  Now his hemoglobin was dangerously low - he wasn't making enough blood on his own and was very anemic and pale.  He had a transfusion.

After two weeks at Lehigh Valley the doctors said that we had exhausted their resources and we all agreed that a transfer to the Children's Hospital of Philadelphia (CHOP) was appropriate.  CHOP sent an ambulance up and took us to Philly.  I had a little hope that the doctors at CHOP would be able to diagnose him right away - maybe this was something that they were familiar with, and LVH hadn't come across it yet.  It was not to be.

We met many teams of doctors immediately and everyone set to work learning all they could about Gage to try to piece this puzzle together.  They started him on blood pressure medication.  The liver mass ended up being a big red herring, because it isn't connected to his illness at all; it was an incidental finding.  But everyone was trying to piece together the low kidney function with the fever with the anemia with the high blood pressure with the high white count with the liver mass.  But nothing explained all of the symptoms.  In the meantime, Gage had many medicines and countless blood draws, four ultrasounds, two MRIs and a CT scan.  He was on a low-sodium, low-potassium diet and had IV hookup 24/7.

After a week and two days at CHOP we received the preliminary diagnosis of Vasculitis, an auto-immune disease that causes inflammation of the blood vessels.  A kidney biopsy confirmed this.  Finally, we had a diagnosis and a course of treatment!

Gage was on high-dose steroids for three days in the hospital, and they kept up the blood pressure medication.  He started to improve for real this time, and everyone breathed a big sigh of relief.  They started him on a high dose of Prednisone, now that the IV steroid course was done.  Gage also needs four infusions of a chemotherapy drug which is known to help put Vasculitis into remission.  He received one such infusion before we left the hospital.

Gage has improved a lot, especially in the last few days.  His color is much better, and he has a lot of energy.  The steroids are making him VERY hungry, and he's gaining back the weight he lost during this ordeal.  His blood pressure is still on the high side, but not *too* high, and he is still taking blood pressure medication daily.  He sees the school nurse daily as well, to have his BP checked, and we bought a pediatric BP monitor for home as well.  His urine is back to normal, and his temperature is steadily normal.

We have lots of follow-up appointments at CHOP, some Vasculitis-related (Chemo infusions, which will last 6-8 hours each, check-ups to test his blood levels and adjust his medication, etc.) and some liver-mass-related (scans, check-ups).  Although the doctors are fairly certain that the liver mass is benign they are not convinced enough to leave it alone.  They want to take regular scans to make sure that it's not growing.

So that's where we are.  I'm sure I left tons of info out, but it's long enough already, LOL.  We are so happy to be home, and beyond relieved that Gage is getting better.


Anonymous said...

Oh, Jen. What an ordeal! I've been thinking about you guys every day. I'm glad Gage is doing better and back home and has a diagnosis. Much love! Jenhed

Anonymous said...

I can't imagine what you have gone through in the last few months, it really puts things in perspective, we take our existence for granted sometimes until we are faced with circumstances beyond are control, only then do we really appreciate what's really important in our lives, bless you all for being strong enough to get through this, continued thoughts and prayers for Gage's recovering process. Peace, love and happiness to all.