Have you ever had that feeling that it was Friday, and sadly it was not? I was in that land of delusion all day today. Struggling to rationalize in my mind why some seemingly intelligent man could be so confused on something so simple. For goodness sake I could see the date on my watch (I mean my phone): as who really wears a watch anymore. I went back and forth, was it lack of sleep, stress, what was it? Finally I landed on who cares, because tomorrow IS Friday :)
Sunday, April 26, 2009
I mean I get that part. The world does keep spinning even when my personal world stops. I get that. So Friday night my wife and I hop in the car and take the all too familiar drive to a Pediatric ER in Tarzana like its old hat. Colin had not slept all day on Friday and was clearly having episodic abdominal pain. Leilani had run out earlier for errands so we met at the pediatricians office. I arrived first and felt so out of place without her there with us, so Colin and I kept watching the door for Mom’s arrival. He smiled pretty big when she walked in the exam room.
Our Doctor is great. She is a new mom and you can really tell she just loves Colin. She examined him, asked all the appropriate questions and in the end was at a loss. As we all are.
She suggested we contact the GI specialist get his opinion as well and go from there. I could hear the muffled conversation between the two of them outside our exam door. I have eavesdropped on so many of those doctor consults and have become highly attuned to hearing my son’s name or condition in what otherwise would be oblivious conversations.
The two of them agreed that maybe it was time to rule out an earlier thought of intessusception, wherein Colin's intestines were telescoping into each other. But was this it? There was just not enough to say YES this is it? So the question we rely on as parents and patients often comes down to: “if this was you or your child ?” If this was the one you love.
The answer had us hopping in one car and taking that all too familiar drive.
The ER was a little crowded but we had to wait three hours with a hungry and scared child amongst of bevy of people doing their jobs and living their lives. Side note: Yes I am selfish, but its then that people on the outside appear as such “worker” ants to me. I have no understanding of anything except what is in front me at that moment, my family. I am working on that.
Colin would need to have a barium enema to rule out obstructions and possibly fix any intessusception.
It is not a horrible procedure, but when you are one and in the hospital again… Needless to say he recognized many things at the hospital and knew what to fear and what not to fear. I did make it clear that on this night, in this ER , for no other reason than the most severe medical emergency would my son have any needles placed in his skin. There would not be a 1/2 hour IV session tonight. We had promised him, and once again selfishly we were not sure we could take it. There were no needles.
We waited for the radiologist on call from the Westside to arrive. They were great in Radiology, did their job, helped us the best they could and found nothing obstructing his intestines.
So we all climbed back in the car and headed home. He has been doing pretty good this weekend so who knows. Maybe this helped in some way and maybe he’ll get that one year “well check” soon.
I would love that because you kind of have to be well to get the check :)
Thursday, April 16, 2009
We head back to our pediatrician tomorrow and then the GI specialists Monday. Someone had asked me today if it was in fact Roto virus. He had tested positive on his 2nd stay at an ER but the white blood cell count did not reflect what they thought they would see with that virus and later tests he came back negative for Roto. He also tested negative for it during the most recent hospital stay. So we are a little suspect of that, plus he had his Roto vaccines already.
He looks good, is playing and eating. It is so just so hard not to worry. I just want to scream. How do parents do this that have kids sicker than mine? I don’t know. I have guarded optimism and will never rest until this lovebug is healthy.
On an unrelated note I flew in a B-17 bomber for 1/2 and hour today. Colin would love that I am sure when he gets older.
Pictures coming :)
Tuesday, April 14, 2009
He was 6lbs 14oz when he was born and as soon as I saw him I would die for him. Every parent has that moment when they can’t catch their breath and their heart feels like it just stopped for a split second in time. Its when everything else fades out of view and all you can see is this little guy before you.
My wife and I have been thoroughly enjoying being parents. It was a long time in the coming for us and eventually with some blessings from above and IVF we were able to have this little boy with eyelashes to die for.
The playtime, Mommy and me classes, birthday parties, and trips to the park were put on hold though and replaced with IV’s, Doctors, Nurses and tears.
On March 27th Colin woke from sleeping with vomiting and diarrhea. That night we found ourselves at a Pediatric Urgent Care watching as three times nurses tried to get an IV in my son who was suffering at this point from intractable diarrhea and vomiting. All he knew was Mommy and Daddy were holding him as someone he never saw before tried to place a needle under his skin, both arms and the side of his foot. It did not work. We rushed him to a pediatric Hospital in the Valley. For twenty five more minutes my wife and I lived in our own personal Hell. I am sure we both made promises to God. Nurses had taken our son behind a closed door and were attempting another IV line into what were now severely dehydrated little veins. They finally emerged with our son, his arm all taped and boarded for stability and eyes that did not understand why this was happening. I would see that look several times more before what I pray is the end to this ordeal. In fact, ordeal is not even the right word. Because this is my son, this is my heart that beats outside of my body…..this has been every parents nightmare.
Colin stayed three days in that Hospital. There were countless blood, stool, and urine tests. Why was this baby unable to stop vomiting? Why the diarrhea? Through the help of medication things got under control in the hospital and we were discharged. Our medical team was confident it was some bug or virus. It has been a tough winter for bugs and viruses.
On Tuesday April 7th my wife called me after I had finished my morning show in a panic. (I was actually on a ride along with the Glendale PD at the time.) Colin was displaying the same symptoms again. Our Pediatricians had her rush him to the ER at Henry Mayo where I would be racing up the 5 freeway to within minutes of the call. When I arrived I found my son lethargic, exceedingly pale and with yet another IV. Tests were coming back again without answers and he needed a higher level of care.
Leilani’s Mom was staying with us at this point as she was in town to celebrate this little guys birthday party, as the next day he would turn 1. He would be celebrating that birthday at Children’s Hospital Los Angeles. We transferred him via ambulance.
My wife and I just prayed for answers. What was wrong with our son ? My parents and sister were also arriving that night from back East as we had a big celebration planned for that Saturday the 11th. Imagine their surprise to hear we were now at CHLA.
We did all the right tests again; blood, stool, imaging etc. Nothing. My wife and I would take turns going down the Giraffe elevator to the cafeteria for coffee or a quick bite. Still no parent wants to be away from their child’s room for any period of time. You are always watching your child, each other, and the door-hoping and praying a Doctor will rush in waving a lab report and enthusiastically yelling “It’s OK we know what it is, he will be fine!”
That moment never happened. He spent his first birthday in the hospital. We left CHLA on the 9th with no concrete answers. They did not think it was anatomical, and we would wait for the results from a food allergy panel. So we packed up our son took out the IV and headed home again.
We saw his pediatrician the next day as he started to develop a fever. They did tests for RSV and influenza and suggested a few other ideas and options we could explore in the next week. One of the toughest parts is this little boy Colin, is a lovebug. You can’t help but want to hold him.
The next day was to be Colin’s 1 year birthday party with lots of little friends and family. We went all out for the party :) He was such a miracle for my wife and I, that arguably we may have gone overboard. The moment I realized this was when the ice cream truck my wife had rented pulled up. Most adults did not notice because they were at the open bar.
Colin was somewhat lethargic and had been running a fever the night before which we were treating with Tylenol and Motrin in six hour intervals. The party was a huge hit and Colin was having a blast, but then we came home. That night while putting him to bed I noticed he would not take his bottle and seemed hot and agitated. He once again began displaying symptoms which we have come to recognize in an instant. We were not waiting for the vomiting to begin. Our pediatrician talked with us on speaker phone as I held my son on my lap in the bathtub, preparing for what I knew was a third admission to the hospital. It was that exactly. The fever at its highest was 103.7 . This was new for us though, as the fever had not accompanied previous incidents. Dr. Mike cleared us through to the pediatric floor in Tarzana, no emergency room, just head straight up to the room. We knew the way. Upon arrival Colin and Leilani were rushed into the IV prep room. I was asked to wait outside because of the size of the room. I waited. I cried. I prayed. My son was in desperate pain and I knew my wife was right by his side in desperate pain of her own. After 15-20 minutes the door opened and they asked me to come in. The IV was not in. We had been down this road before and my son had been like a pin cushion, with countless needles already. I am actually afraid to count IV attempts over the past few weeks as I write this. So I won’t.
The IV finally got in, the board was taped to his arm, and my wife and I slipped back into our hospital routine. Trying to comfort our child as the IV fluids flowed, and trying to comfort each other as the night began to settle in. I wondered how the party that day was for everyone else? What were they doing with their kids? What were my friends doing that didn’t come to the party, did they see a movie or watch a ballgame? We were at the hospital again. It sucks. We had learned just before we left for the hospital that Colin tested positive for the Roto virus so we were for all intents quarantined to the room with him. Again we went through all the tests, but there was more abdominal pain this time and my 1 year old son had to have two doses of morphine. One funny note there; not all kids get sleepy with morphine. Apparently some see blue elephants on the walls and try to climb up the side of the bed to get to them.
My wife Leilani slept in the hospital bed the entire time Colin was laying down, holding him like only a Mom can. I sat next to her in a chair watching the IV, watching his oxygen monitor, watching my whole life.
It was time now for something to happen. Our Doctor at Tarzana and our Pediatric group both agreed on a GI specialist, and pushed for the consult. He came Monday afternoon, looked at all the charts, met with us and Colin and gave us his assessment. He did not think it was anatomical, celiac, or a handful of other things. He decided to recommend a shotgun approach. If it was colitis, parasitic, or a few other bacteria, then this drug would take care of all of them. Flagyl suspension.
So in the end we left the Hospital Monday evening with our son and our hopes that this Doctor may be on to something. The fresh air Monday night felt great to all of us and Colin slept most of the ride to CVS by our house. It was 8pm and I was getting the prescription filled come hell or high water. Imagine my surprise when the Pharmacist said he had not seen this before, and could not fill it. It had to be done by a compounding Pharmacy. He called around to some he knew, and of course none were open. I walked out of CVS to my wife and son waiting in the car feeling like we would be right back at the Hospital if I could not get him started on these meds.
Our house is right up the street, so as soon as we got home I started calling every Pharmacy in the yellow pages. Did they do compounding? Were they open? Every answer came back with me saying “well thanks anyway”. Then with a stroke of luck , I found on Walgreen’s website that they have some compounding pharmacies. There was one in North Hills open until 10pm ! Well I probably did about 110mph down the 405 to get there by 9pm, and have it filled. I got it! On a side note I also learned that my AAA card saves on prescription drugs, it went from $36 to $9. Not bad.
So I went back to work today with the ringer on high just like I had my phone throughout Leilani’s pregnancy. Colin is three doses in and we meet with the specialist again today. He seemed much happier and healthier today, so all I can do is keep at it and pray. We are and will always be our son’s best advocate. I have joked before with friends that my heart no longer resides within me. Now my heart lives outside of me, crawling, walking and singing its way into this world. I just want my heart to be healthy.