31 October 2008


Poor Little C is sick again.  I took him to the doctor earlier this week because I was concerned about an ear infection due to some ear tugging. The doctor checked him over carefully and declared him "beautifully healthy" but a mere 7 hours little our little boy sneezed once, coughed twice and has been dreadfully sick with a cold ( we think ) ever since.  Insult on top of injury? The motor in his baby swing died the very moment that he sneezed and we are now without the one thing that could soothe him. *sigh* 

The weight limit on the swing is 25 pounds and Little C is 17 pounds so I am not sure what compelled it pack up and leave…but gone it is and we are forced to try and soothe a fevered, stuffy and watery-eyed baby with our meager arms.  Did I mention that he does not like to be held very much when he is ill? *sigh again*

There was a brief moment of panic in regards to his citrullinemia when I noticed that not only was he unsoothable and screaming…but he was also grabbing at his forehead causing me to immediately think that the ammonia was elevated and his poor head was aching.  I paged his doctor, who was in New York about to attend a gala, and she talked me through a checklist of things and then said, " I do not know what to tell you to do"  Which, of course, made me want to drop over dead.  I am the worst at trusting my own judgement…I have seen my happy and cooing baby draw terrible ammonia numbers without a single symptom and need immediate hospitalization…so how was I to be sure that I had a clue what might be happening now?

When I have a fever I know that the only thing that helps, like magic, is a really hot bath. By the Grace of God both Grandma's were here ( and Connor and Mark were gone to guitar lessons) when Corrigan became the sickest and Mammaw and Grandma attempted to soothe him while I made a bath.  After only a few moments in the tub Corrigan was smiling and kicking and feeling 1000% better. I decided that a hot bath would not ease tremendous head pain due to toxic ammonia but it would ease tremendous discomfort due to fever related symptoms and did not take him to the ER.   Corrigan has been fighting the low grade fever all evening and has managed to sleep from 10pm-12am but I think that we are through the worst of it.

On doctor's orders we took him off of protein and he is on protein-free/amino-acid free formula with full meds added. Now, he is receiving no new protein from food for 24 hours…but his medicine will work to whisk away any proteins left in his system or new created by whatever virus his little body is fighting ( at least that is the hope ) 

This cold comes days after I finally decided to take him back to church and feeds my anxiety that though a wonderful place full of amazing people…church is also a place full of devoted followers that will brave their own aches/pains/coughs and fevers in order to hear the Good Word.  People will call off of work when they are feeling sick but will brave almost anything to attend church which is a wonderful loyalty but scary for Corrigan. I, before having Corrigan, would attend church with my own symptoms and never thought twice about it. If I did not have a fever or was not throwing up I felt okay with attending. The other members should not stay home if they feel compelled to go to church…and we should trust in God that He will protect our baby if that is what He wants.

 Many nights I have prayed for wisdom on whether or not I should venture to church and expose Corrigan to the coughs and sneezes of people in rows behind and in front of us. I spent many Saturday evenings with church clothes ready for the next morning and then developing a slight panic attack about attending and exposing the baby. By Sunday morning I would have talked myself out of going and then spent the entire Sunday feeling guilty for not trusting God.   Over and over I have told myself that surely God will not allow my baby to become sick at church…so we prayed and we decided that we needed to be with our church family. That we needed to trust that He would take care of everything. 

 Of course, having said all of that I know that so many other means could have been the culprit this time around. Last week we had to take Connor to the ER for an infected spider bite and I had to take the baby with us because Mark had to work in Ft. Ashby. ( the one day he was not working from home in over a year…figures, eh?) .  There were no other people in the waiting room the night we spent in the ER but empty or not it must be a hotbed of germs and viruses.  Also, Corrigan spent Tuesday in the pediatrician's office ( though I do not think that you can catch a cold and show symptoms in less than 6 hours but who knows)  It could have travelled home from school with Connor…and though we go out very very little to indoor locations, with the baby, we know that everytime we do we are taking a chance. Over and over we tell ourselves that we cannot live in a bubble. That we HAVE to expose Corrigan to things so that he can build up a resistance. It just feels irresponsible to do things that expose him to obvious pathogens. We are so conflicted.  

Corrigan is NOT immune-system compromised…his system is the same as any other infant ( succeptible to everything until it builds up natural resistance through exposure)… but any virus or bacteria could cause major issues with his citrullinemia.  The body creates more protein it fights a virus and every tiny bit of protein that Corrigan's body receives ( from outside sources such as formula ) is strictly regulated and protein by-product is whisked away with his carefully calibrated amounts of meds. Add new proteins that his body makes in regards to his illness and we have a surplus that we cannot control. Therefore, he could become very sick due to the ammonia build-up in very little time. Sometimes, this all takes place before the first symptom of a cold even appears.

We are hopeful that since his body has handled the new proteins without causing him to be obviously hyperammonemic that we will just be controlling his fever until it is gone and eliminating his protein for 24 hours. Please pray for Little C…and for the rest of us who are fighting some flu-like side effects from the flu shots that none of us wanted…but took in order to protect our little peanut. 



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