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.
25 comments:
Oh wow, I didn't realize how awful things were with Colin... you and your family are in my prayers.
Here's hoping the medication helps!
Your son is beautiful and so strong. Babies are amazing like that. I'll be keeping him in my prayers.
Valentine, my prayers are with you, Leilani and your son Colin at this time. You have been through every parent's nightmare, but there will be a good ending--I just know it (I've been praying and twittering about it, for sure).
When my son was seven he had diarrhea only for a whole week. He could not take medication via throat because he didn't like taking medicine, so they gave him an IV at the emergency room as a last resort. After that he never refused to take medication. He did end up better, although he lost so much weight during that week that he literally had his pants falling and in need of a belt to hold it all up. Although his case wasn't as serious as your son's, believe me when I tell you I went through the same emotions (he's our first kid and we just didn't know what was happening). I think when you become a parent it's natural to cry when you have to and really fight for your kid's life as well. It's instinct and it's all good. Your son will benefit from that love and convey it to his own when he grows up. The motto in the movie Lion King is, "It's a circle of life." That's the way we live, and the way we are as parents. It works!
God has blessed your family with your beautiful son. God will get you all through this prayer is the answer. God bless you all. Kids are so strong.
I know EXACTLY what you are going through. My son is 9 and been hospitalized so many times starting when he was 5 mos. old, all due to allergic reactions, the most recent being last July after ingesting soy milk cross-contaminated with cow's milk which he is severely allergic to. We were on vacation in Palm Springs. He had trouble breathing and was transported to the local hospital where he stopped breathing, was placed on venilator then air lifted to Loma Linda. He was there for a week in Pediatric ICU. Now? He's home and doing great. I know that helpless feeling and all the deal making with God.(And having this blog is good. I blogged about my incident and it was very cathartic: http://everydayheartbeats.com/2008/08/19/things-that-ive-learned/) Believe me when I say this: these kids are WAY stronger than we are. Trust me. Colin is going to be fine. Just be his dad and love him with all you've got and that is what matters.
Thanks for the kind words all:
The GI doctor has us staying on the meds, and we will see him Monday again. There he was last night in my arms, trying to avoid his Mom's tickle attack, and the giggles were non stop. Nothing is more addictive than a little baby's giggle.....
Valentine,
I wanted to call in the other day when I first heard what you and your wife were going through with Colin and wanted to give you my best from my family. I know exactly what you and your wife are going through. When my youngest son was a year old, he had a soft pallet repair on the roof of his mouth. He was born with the upper pallet not fully formed. They call it an internal cleft pallet. The Plastic Surgeon said it was a very routine and simple surgery but that somehow doesn't make it any easier for a parent to watch their little ones go with a nurse into some operating room while the little one just stares at you with tears in his eyes wondering why you weren't going with him. I know your situation is somewhat different but it's the same feeling of helplessness that applies. I just read the entire blog and realized I didn't know the whole story. I am sitting at work now trying not to let anyone notice the tears forming in my eyes. Simple proof that harda** military grunts do get weepy from time to time. :)
You are in the Holloway family prayers.
I hope Colin gets better and stays better soon.
V/R
Gerry A. Holloway
Val, I went through a similar incident with my son last September, just not to that severity but it is the worst imaginable feeling to be so helpless. Reading your blog took me back and I was bawling. I am truly praying for your family. No child or parents, or family in that case deserve to go through anyhting like this. It's scary to sit there and thing that things can be great one day and you turn your head and they have gone to an extreme! My prayers are with your entire family!!
My prayers are with you and Leilani and especially with Colin. My granddaughter had RSV and it scared the bejesus out of my daughter when her temp rose to 104 at 3:00 a.m. and she had to rush her to the ER but luckily the ER doc knew exactly what it was and started her on the proper treatment immediately and was kind and caring with my daughter and my granddaughter. Parents need as much care as the child (especially when its your one and only child. Elise just turned 7 months and when they are so little they can't tell you how they feel, but luckily the medications they used worked for her so I will pray this new medicine works for Colin. My heart aches for the two of you.
You sound like such a wonderful dad, and my thoughts are with you and your family. It's hard not to tear up while reading what horror you and your family was going through. As a mother who has been to the ER so often I should have gotten VIP parking, I understand your fear, your love, and all the feelings that come rushing through you when you feel helpless. My son needed stitches in his head, and I had to watch the nurses tie him down to a papoose so he would be still. I believe the flagyl will work and he will be back to his self in no time. Good luck.
My heart goes out to you guys! Our little son is also named Collin (two l's) and he just had his first birthday in Jan. He's our first/only son as well. I know what you mean about being tortured when they're in pain... seems like he's had a million "bugs and viruses" since this past fall... nothing compared to this though. Thanks for sharing your story! We'll be praying for you in Iowa.
What an ordeal for you to all have to go through, especially your little wee one. Our prayers are with you. Many hugs...
Is it something in your house? Lead or mold or something? He seems "better" outside of the home.
Our daughter was born 12 weeks early at 2lbs 2ozs. I can relate to your hospital stories. SHe contracted RSV when she was 18 months old. Heart wrenching to watch your child life flighted to another city that was going to take you 2 hours to get to by car. You cry, you pray, you ask why this precious innocent angel has to go through this hell & you make deals like there is no tomorrow all in the hopes that your baby will be ok to live a normal happy life. Akron Children's Hospital is our "LIFE SAVER"! God bless you, your wife & your precious innocent angel! Our thoughts and and prayers are with you!!
I cried so much reading your blog. I'm the mom of a 4 month old baby, so I felt your pain and frustration. My prayers are with you and your beautiful family...I'll be waiting for the news of your baby's prompt recovery.
oh my that poor baby boy! My prayers are with you guys! The Flagyl is used alot with children with Autism. I hve 5 yr. old twin boys who are Autistic. You should read alot on that MMR vaccine also. My boys had 2 occurances like that 1 month after they got the MMR and the regressed and didnt talk until they were 4 and didn't walk until they were 19 months. I truly believe that the MMR caused their Autism (triggered it anyway) I would never want another parent to have to face the issues of Autism with their child. It is very hard and heart breaking. You are right you and ur wife are the best advocates for your child so if you don't feel right about something you tell the Dr's. I will keep you guys in my prayers. Give that precious baby boy a hug from the Lambs in Tyler, Tx! :)
Valentine,
I got chills reading your blog. What you and your wife are going through is every parent's worst nightmare. I too, like one of the bloggers, have a son (now 9)with Autism who went through similar symptoms following his vaccines. He once required anesthesia and had the same opposite response. I know too well about the need for compounded prescriptions. Of course you need to explore all medical reasons first, but if you and your Dr.'s cannot find a reason, do some research on vaccine injury, Jenny McCarthy's books tell some pretty classic symtoms. I wish you all the best and do hope you find the help your son needs. God Bless & know your precious little guy will be in my prayers.
I first want to say is stay strong at least in front of your child, behind closed doors feel free to fall apart. I truely feel for your family and pray that you get some answers soon. My son started the vomitting and diarrhea at 3 days old. We spent countless nights in the ER with admits and IVs were a regular thing to us as well. We once had it take 9 tries before they could get the IV placed. Every IV prior blew out. I know how much an IV hurts me, just seeing him having to be tortured was horrible. My guy is 3 and has been in hospital more times than I can count. He was failure to thrive from all the v/d and had finally just quite eating. He now has a gtube to help with his feedings. My son finally at 2mths old having been switched to a number of different formulas and put on reflux meds at 3 days old, he was finally admitted for a week. Doctors felt there was nothing more they could do outpatient. During his stay he had a number of tests. He had his first anesthesia..which was scary. They did an EGD and a colonoscopy. His insides were a mess. They told me he was allergic to milk and soy. He was put on a hypoallergenic formula called Neocate. It helped alot. He finally gained some weight, until we started foods. Then it all started again. At 15mths, he was the same weight he had been at 8mths. I pretty much made the docs do another scope(EGD/colonoscopy) on him. This time we got some answers, he was diagnosed with Eosinophilic Esophagitis. I wanted to mention this to you, because your son sounds so similar to my son. This disease is rare, but becoming more and more common. And is being tested for more. The only way to diagnose i by the scopes and they take biopsies of the GI tract. Basically, this disease sees food as a foreign object and attacks itself, much like it would if you were allergic to a food. I've included a link that describes all the symptoms and exactly what this disease is. If we had only been diagnosed at 2mths instead of at 15mths things would be so different. My son now refuses food and pretty much only drink his formula. But, is dependent on his feeding tube in order to maintain weight, because he doesn't take in enough calories by mouth. Alot, of kids are misdiagnosed or not diagnosed because its not always looked for. Alot, of docs don't even know what it is. And suffers through the symptoms longer than they should have to. My son, Braden, does have other medical conditions on top of this disease, but lives a normal life just like any other 3 yr old. We just have to watch food. Please take a couple of minutes to look at the link. It may answer some questions. I hope you get some answers soon. Like you said you are your sons best advocate. Educate yourself and make the doctors listen to you. I would push to have the scopes done. My son might still be undiagnosed if I didnt push for the them. He can have this disease and react like he's allergic, even if all his allergy tests come back normal!! He's reacting on the inside, hence the v/d and stomach pain. I will keep your family in my prayers. Take care!! Tasha Sarver, mom to Braden, the bravest little guy I know.
http://apfed.org/
http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/default.htm
"My heart stopped on October 29th, 2008 and has slowly started to beat again" when I got the phone call that my 13 year old daughter had Leukemia. We rushed her to Loma Linda's Pediatric Emergency room and she stayed in the hospital for 4 weeks. She celebrated turning 14 in the hospital. She under went a spinal tap, bone marrow biopsy, pic line insertion all in one procedure. Since being diagnosed she has had four bone marrow biopsy's the next one scheduled for May 4th. I can't even count how many blood test and blood transfusions she has had to have. She takes chemo drugs every day. Her 4 year old sister was just tested to see if she is a Bone Marrow Donor match. We pray that she is but I am torn. I don't know if I can handle both of my two beautiful daughters being in the hospital at the same time. But this isn't about me it is about my daughter getting better. So sooner or later she will have to have the Bona Marrow Transplant done. We are now a family that takes it a day at a time, and honestly that even seems like it is to far in advance. Live life to the fullest Valentine and never ever let work take your family time away from you. My husband has learned that we come first and has spent more time with us then he ever has before. One thing I learned is kids are strong. Lindsey has given me strength when I am down. Colin is very strong and he will make it through this with flying colors. He has two wonderful parents that will make sure that happens. Let people help and don't take it on all on your own. God Bless You and your family. I pray for Colin to have strength and to stay strong.
Valentine, I'm in Cleveland and used to love hearing your show and now it's not on anymore. I remember hearing the whole history leading up to Colin. You, leilani and of course Colin are in my thoughts and prayers.
I hadn't realized how horrible things were going for you all. I think there is a really bad bug going around. I work at a daycare, in the infant department, and we have been sending kids home left and right. Best of luck with everything. By the way, I listen to your show every morning!!
My family will be praying for your family. We have a 9 year old and a 8 month old and they are both miracles. Just remember that if God brings you to it, he'll bring you through it! Blessings!
Val, Hello! I am from little-ole Wheeling West Virginia. My husband and I listen to your show Mon-Fri religously. We actually listen together on our cell phones as we drive our separate ways to work.
I wanted to wish you the best of luck with yours son. I understand what you are going through. It is a very trying time and the only thing you can do is to give lots of hugs and never lose your faith in god.
We have a two year old and a three month old. Our three month old was born with no desire to eat. When she did eat she threw up. It took two weeks of her not gaining weight, three hospital admissions, and many, many, many IVs (like you I stopped counting) for someone to take us seriously. Finally our little hospital gave up, and sent us to Pittsburgh Childrens Hospital. After being admitted there and having numerous IVs... several in her head, a feeding tube, several tests and me being away from our two year old way to long (my husband and I had to split up and each stay with a child) we still no nothing except her body doesnt digest food fast enough. Her current treatment really isn't working. My child who is nearly four months old doesnt even weigh 13 pounds. She eats roughly 12 ounces a day... enough to sustain herself and grow a tiny bit.
Mainly, try your best to keep your head up. Children can feel your pain the same way you can feel theirs. I really wish you the best. Your family is in our prayers. I hope your GI doctor is amazing like ours has been lately. My husband and I will continue to listen and hopefully we will hear many good updates soon.
ps... Stop picking on Jimmy... lol!!! Jimmy's Word Minute is our favorite part. My two year old sings part of the lil song in the beginning!!!
My prayers are with you Valentine. I had to experience sortof the same thing w/ my 3 month old baby who ended up w/ RSV. After 3 trips to the ER and DR they finally admitted him for 4 days. By that time though he was so dehydrated that one there last try for an IV if they didn't get it in his hand they were going to put it in his head. SO take it from someone who has a clue, my heart goes out to you and your wife. God Bless and Pray that the medication works.!!!!
My husband and I went through hard times with our 2nd child, God has been great to us and he will do the same for you. I believe sometimes these problems are not problems but obstacles to test our will, power & determination. I remember listening to your show every morning on my way to work (in KY) listening to you and how much you & your wife wanted a baby. Now you finally have him & I believe he will be here until he becomes a grown man. Stay strong, always love each other & never give up.
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