So our IVIG, Cytoxan, and Remicade infusions went well. Sunday we were discharged. We loved our nurse. We were sent home on a G1 diet until he started tolerating a full diet with no diarrhea.
Monday morning Gary had a well child check up scheduled. I thought why not. Kindergarden round up was Thursday so it would give me the perfect opportunity to chat with him about what to do. I had or do I have no intention of any kind of immunizations at this point. So the whole point became a complete act of God. As if He knew. I woke Gary up for a shower. He had crawled into bed with me at about 230 am with a temp of 102.0. Thought nothing of it because he has been running fevers. It aggrevated me because as a mother, you know. You know something. But tylenol and by morning as was ok. I dressed him. Gave him his medications. Put him in the car. He was quiet on the way. Too quiet. He moved very little. Asked very little questions. Not Gary. Gary is usually full of anxiety. He is about planning his day and what comes next to benefit him. What five year old isn't? Check in at the pediatrician, blood nose. Ok. No biggie. Odd to me but whatever, kids get bloody noses. Weight check, bp check, temp check. 101.4 Clearly not feeling well. He shook from the high fever. Our awesome pediatrician look him over. We talked about him not being ready especially being in the middle of new medications. On the table Gary looked awful. Our pediatrician asked questions. Asked if he had vomited. I said no. He said take him home, let him ride out the side effects of the chemotherapy. Ok. Pure honestly. The moment I scoped him up, I scrambled for my phone calling Children's Hospital as I walked out the door. Maybe I should have shown my pediatrician the respect of letting him know I was not comfortable with any of this. Only ten minutes into the car ride, he vomited. I was on my way to the Emergency Room at Children's. There was a little blood in the vomit but I though oh, bloody nose.
In the ER he was running a fever. They put him right back in the room. The rheumatologist showed up a lot quicker than normal. Gary was very sick. He acted funny with his movement. They felt confidant it was a reaction the IVIG infusion he recieved over the weekend. A harmless, well, bothersome, but nothing they could do anything for condition that would have to resolve on its own. Aspectic Menigitis. So benadryl and tylenol were given by mouth because we figured we were going home. Until his labs came back.
The two of many doctors that had chatted with me entered the room with a copy of the labs. The news was broke. My sister and her husband were sitting at my sides. It became a roller coaster ride. The works spinal tap spilled for her mouth like black sludge. My outter tough shell shattered into a million pieces, allowing the tears to instantly spill from my eyes. A lumbar puncture. I wanted to run. I wanted to leave. There was no oxgyen. But I had a job to do. I called my husband over facetime. "We just got some bad news." I explained he about the labs are elevated, like his white cell count was at 31,000. Inflammation markers and one in particular that called for the spinal tap, were all elevated. I cried. But I knew it was game time. I knew in an emergency room there is little time to prepare.
What seemed like a whole lot of people dressed into contamination gear filed in. It was very overwhelming. Doctors, nurses, and the four of us made for one full room. Gary cried in fear. He begged us to tell him what was going on. I couldn't. I didn't know what to say. Oh, your about to have a very large need poked deep inside your back. Yeah, not good to tell a five year old. Thank heavens for my sister. She remained almost stoic. So still, so calm, because she had too. She looked at Gary and said he was having a test done and everything would be ok. I could only weep. I could not look at him without fear. I was not helping. The sedative they were trying to give him through yet another IV, was not kicking in. A lot people standing around in the room, waiting for this five year old who comically enough would not shut up. The senior doc in charge of the procedure said until he is not making sense we need to keep pushing sedation. Three vails later at his max, it was go time. The annoucement of what was about to happen was chilling. "We are here with Gary Richard birthday. We will be preforming a lumbar puncture". Ok why don't you just sock me square in the nose while you say it. Maybe a quick knee in the stomach. We began to hold him. You can only image how important it is to keep a five year old still during something like this. Of course he was panicking. Hot, screaming, panicking. We had an oxgyen mask on his face to help him feel like he wasn't.
When I was a kid, we would love to rough house and put our siblings knees up to there chest and lay on top of them. I would often feel like you couldn't breathe. I can only venture to guess that is the way he felt. 5 adults had him. It wasn't working. The doctor who seemed in charge knocked the nurses out of the way. He said he had it. He pick Gary up, bent him in half with force, opening his spine. Gary was in misery. The man was shaking from muscle fatigue trying to keep him in place. It was pure choas. I was of course by his face, at the head of the bed, so I had full view of the procedure. The doctor performing the puncture shook. The large need shook. It was very difficult. So many things moving, yet this need to be done. It really did. Bacteria meningitis is something they can't miss. The needle finally went in. It was awful. It was just bad. They filled five tubes with his spinal fluid. After it was all said and done, the sedation took full effect. The room emptied, and he sucked on his "fresh air" high as kite. He was calm, tired, laying flat. They immediately began running antibiotics. There was no time for results.
That night, once we got up into our room, he was still sick. He ran high fevers all night. He sleep a little. He placed his hands behind his head and just layed there. The next morning he seemed better. The fevers however were still low grade hanging out. The next morning he felt better. His labs improved so much. The discharged with a diagnosis of a reaction to IVIG. No more IVIG. They were a little hestitant but confidant. So Wednesday afternoon we arrived home and he was doing fabulous. He ate dinner. Slept well. No worries. Thursday morning I got a call. I know Children's number and was expecting it to be the scheduler because I had just called her to check what was scheduled. I could hardly believe the words the rheumatology fellow spoke. He had a late growing lab come up positive. Please return to the ER. I floated, looking around my house as I spoke to him, "You are playing a joke on me, he is just fine." The voice replied it would never joke about something this serious.
I ripped my clothes off and started making calls in the shower. I called my husband, then my sisters. I called my Mom. My sister backed her bag back up and came over. I had no clean laundry. No food. No gas. We had just spent five days there. I was not prepared. I knew I had to go so I did a lot of pacing around my house. Gary was feeling fine at this point, which made it all that more difficult to go back. I stalled. I was afraid to tell Gary but since the antibiotics they ran on Monday, this kid is new. He is happy. He is euphoric. Part of me is nervous he is too happy. Like is this effecting his brain. We did it though. We packed up. Made a stop at his sisters school. I wanted to explain to her face to face what was going on. She cried. But there was nothing I could do. I had to go. I had to leave her there crying. Tears won over a blood infection in her brother. We came into the ER. They expected us. I promptly asked what the labs looked like. The intake nurse immediately looked it up. He tested positive in his urine and blood for a gramm rod negative bacteria. At the time he identified it as ecoli. A ecoli infection of the blood. Everyone was surprised how well he was doing despite what his labs were doing. I promptly reminded everyone that he had already recieved 48 hours worth of antibiotics. They were clearly already doing there job. But with a patient who is immune supressed, we are in dangerous territory. He had an xray done of his tummy. It was and still is the focus of the culpret of this bacteria. Weeks ago when Gary had the colonscopy done, they saw ulcers. I have a feeling it is not what they saw, but what they didn't see. The Xray however didn't show any preforations or abcesses. The more anitbiotic they give this child, the more super power he seems to have.
I wish I had more opportunity to update this, I will tell more later. We are so tired.