Coop Update

I suppose I should write an update since we are going on Day 3 in the hospital.

Wednesday morning, Cooper started coughing in his classroom uncontrollably. Our nurse brought him straight to me and through a blur of tears and coughing, we decided he needed to go to the hospital. My friends from work gathered our things and organized my friend Lauren to leave her classroom to drive us to St. Mary's. I called our pediatrician and asked them to let the ER know we were en route so we could skip the line. She told us to pull over and call an ambulance. When the ambulance got there he was still coughing (this is going on 30 minutes straight). His pulsox was 87 so they started some oxygen and a neb on the way.

In the ER, his chest xray looked slightly worse than the one a week prior. They decided his stats were too low and his breathing too labored to release him and admitted him to the picu, although he is considered a step down from needing to be in intensive care.

Wednesday Night, Coop did great. He slept and played and was happy. Thursday, the coughing fits started again. Some were definitely worse than others. They had us all ready to be discharged and then he started a fit like the one that got us here and it was a collective decision we shouldn't go home. Shortly after that, the amazing St. Mary's nurses brought Coop a mini toddler sized cake, complete with a candle as well as a card and present to unwrap. Coop and Rick and one of the Pastors from our church were playing and talking and all of a sudden Cooper stopped breathing. After about 5 seconds he was able to cough but it was the scariest thing I have ever seen.

The fits continued. They did another chest xray and results showed much improvement from the last 2. Dr. Elliott, our lung guy, came to visit. He talked about a bunch of different theories but ultimately decided to do albuterol 3x daily with chest phisotherapy to try and break up the mucus.

Last night at about 1pm, another fit started. Coop's stats dropped to the point they thought his pulsox was bad. They switched it out but his stats were the same. That was when Coop's case switched from the house pediatrician with some communication to Dr. Elliott to the intensivist, Dr. Dylan and Dr. Elliott calling all the shots.

They ordered another Xray, another round of breathing treatment and oxygen via nose. The xray showed no change from the last but his phyiscal exam they heard wheezing in his right lung and is still coarse in both.

He has been able to sleep some since all of that and we are praying the worst is over. We appreciate all the support we are getting from everyone.

Sayonara, Gallbladder!

Unfortunately, Cooper is not the only one being passed from doctor to doctor with no answers. Thankfully, my answers did come, they just weren't what I wanted to hear.

Back in June I had my IUD removed. 24 hours later, I was in some serious pain. I called my OB and of course they wanted to see me that day. After some tests and an ultrasound, they said everything look great, set up a follow up with a GI doctor and off I went.

24 hours after that my abdomen was so bloated I looked 3 months pregnant. I had so much pain in my stomach, I could barely think straight. I went to Patient First after work that day only to be sent to the ER. After a catscan and several blood tests, they said everything looked perfect, gave me a pain medication prescription, said I should keep that appointment with the GI doctor and sent me on my way. To say I was frustrated, is an understantment. 

Finally, in July, it was time to meet with the GI doctor. After a TON of questions, and some tapping on my abdoment. Dr. Mitchell concludedhe thinks I may have gallbladder stones or something else wrong with my gallbladder. I was sent to have an ultrasound, which came back normal. Then I was sent for a HIDA Scan. (I should probably mention how much I Googled all of this gallbladder stuff, this was obviously pre-Dr. Elliott's Googling hex.) A HIDA Scan is performed by a nuclear scientiest (scary right) where they inject a radioactive tracer into your blood and for 2 hours monitor your digestive systems function through a catscan type machine. I watched as my liver took the liquid and move it through to my gallbladder (I think I feel asleep at that point.) They also do a 2nd test where they inject a substance that emulates a fatty meal, that test was pretty painful.

Two days pass and Dr. Mitchell, not his nurse, calls to let me know my gallbladder is extremely low functioning and needs to be removed and referred me to the Richmond Surgical Group. So although my answer came pretty quick, I am not exactly happy with it. 
What's crazy about it, is that I have had pain like this my entire life, it had just never been enough to interrupt my life. I can remember being pregnant with Cooper and thinking it was weird how his feet always wedged under my right ribs, but really that was my gallbladder the whole time. So I am not happy, but I am sure my life will be much better without it.

I have my consultation October 8th. In the meantime, I am on a no-fat, caffeine-free diet, which is way harder than I ever imagined. But so far, I have noticed a huge difference in the pain. So I am not happy with my answer but I am sure my life will be much better without it. Sayonara, Gallbladder, I don't really need you anyway!

(image source)

to the pulmonologist we go!

I'll admit it, I read too much. If its possible that one could read too much, its me. There is a running joke that I am obsessed with knowing everything (perhaps its my type A personality) that when I tell someone something, their first response is "Don't Google it Erin!"

Needless to say, I have read every. single. last. laryngomalacia article there is out there. Every medical study, every medical journal publication, every blog post, every single last thing I could fine. I know that what Cooper has should be resolved by now. I know it. Our ENT knows it. And yet its not. So off to the pulmonary specialist, pulmonologist, Dr. Elliott we go.

To say we were excited, we meaning Rick and I. (Coop is pretty sick of doctors at this point). After two years of stidor, coughing and many many many dirty looks from moms that obviously know more about our situation than we do, we were very hopeful Dr. Elliott was going to find us an answer. We were excited.

Unfortunately, excitement was not what we felt at the end. Stressed and overwhelmed come to mind.

Dr. Elliott asked a some TON questions. He said first off, no kid should have to cough all the time. He said he wasn't entirely convinced Cooper had pnemonia. He listed off about 15 different tests he thought he should run. Tests for cystic fibrosis, tracheoesophageal fistula, even immune deficiency diseases since Cooper is always sick. He talked about how the scopes Dr. Brager had done, just didn't go far enough into Coop's respiratory system to rule out all the causes of chronic cough and quite frankly laryngomalacia should be resolved by now. 

I think he started to see the stress on our faces because he stopped to say he wanted to overwhelm us now, so we have more time to digest everything. So we are ready when he calls for another test instead of being stressed by it. He also must have seen my mind wander into Google-town because he immediately said, "Don't go Goggling CF. I will tell you what it says, it says CF is the scariest, most debilitating lung disease out there. I don't think he has it, we just have to rule it out, so don't go making yourself more scared." I had to laugh because I have heard it so many times before. And I can honestly say, aside from goggling how to spell tracheoesophageal fistula, I haven't Googled anything.

So we start the testing on Tuesday, September 4th. They were able to coordinate a bunch of stuff into one day. We will have a follow up chest X-Ray to check the status of the pnemonia, it is in fact pneumonia, a cystic fibrosis sweat test and then meet him in the office for another visit. He hopes to get a better feel for Cooper's baseline since we saw him the day after we got out of the hospital.

So I am no longer excited. But I am hopeful that Dr. Elliott will find the answers we have been searching for and bring some relief to our sweet boy. And we will continue to follow out previous realizations to continue to let go and let God and I will try a new thing where I don't read anything at all.

recipe for hope

I think I am finally ready to blog about my year of a week. Sometimes, I think I have to get through that one really good cry to find the hope in the awful, and this week it took longer than usual to come.

Cooper started coughing last Saturday afternoon. When I say "started" I mean a cold cough started. Cooper has had a chronic cough his entire life. Sunday night the 102.6 fever reared its ugly head. After a day in the Get Well Place at school (so thankful for our amazing nurses) his fever was still coming and going. By Monday night, Cooper was more a zombie than a toddler and that is saying a lot.

Tuesday morning, I took Cooper to the doctor. After a strep test, an ear, nose and throat exam, a little bit of listening to Coop's lungs, we were sent on our with with a "It's a virus, lots of rest and fluids, come back if the fever doesn't go away in 24 hours" You know how awesome that is to hear. So glad, I just wasted a co-pay for you to tell me, there is nothing anyone can do.

Well, the fever continued, barely controlled by motrin. By Wednesday, Cooper had spent more time in my arms than anywhere else and even lost his breath trying to pull himself on the couch. At 7:00pm, I called the doctor to see if he should be seen. They asked how fast we could get there. (We learned in about 7 minutes!)

We were eventually sent to the ER at St. Mary's Hospital for dehydration, labored breathing, pulsox reading of 88 and the fact that pediatrician couldn't hear anything in his right lung and his left sounded very "course" as they call it. We ended up having the same ER pediatrician we had back during Cooper's first ER visit (he even recognized us!) and after a chest X-Ray, the diagnosis was pneumonia. We were admitted to the PICU because the Peds floor was full. It was a long 24 hours of barely any sleep, lots of Cooper crying, coughing and even a little lot of blood from where Coop ripped out his IV. But we made it. After a bag of fluids and 2 doses of amoxicillin, Coop seemed to be feeling better.

This hospital stay was definitely different than the one before. We have more experience behind us, more tests and more doctors. We have more information on what is going on with Coop now than we did before. We didn't know what Cooper's "baseline" was before. This time we did. It made watching him lay around for 14 hours straight that much more difficult. He also has a vocabulary and an awareness that wasn't present before. He sat on the floor crying and saying "Go, Mommy Please" on repeat and each time I told him we couldn't leave the room, I would want to scream. He was being so sweet, asking so nicely and still the answer was no. In fact, Grandad had to wear gloves and a yellow apron just to come visit. I had to wear a hospital gown the whole time I was in the room. It was awful. 

Thankfully, we had great nurses. They were sweet and caring and patient and kind. Thankfully, we were only there for 24 hours. And thankfully, we weren't going to miss our pulmonologist appointment that we had been waiting for, for SIX WEEKS! In fact, our doctor's CPNP stopped by to check on Coop, even though we weren't even officially their patient yet.

So I guess know there is always a silver lining, always something to give us a little hope. Today, I can safely say, Coop is 99% back to himself. This time, I think I had to get to this point in Coop's "recovery" for me to cry it out and let it all go. I had awful nightmares last night and woke up on the wrong side of the bed, grumpy and sad. Today was supposed to be Cooper's 2nd birthday party, the 2nd of TWO we have had to cancel. I wanted to be celebrating Cooper's life not worried about it but waking up to Cooper being himself helped me finally relax a little, I was finally able to let go of the week. And letting go, lets God in and that is always the right recipe for hope.