Illness Be Gone!

This is Coulby's new look...what do you think? He has been sick yet again with a cough, runny nose and an on and off fever for four days straight. Not fun. It seems like we have one healthy week for every three sick weeks. Not fair. Since Coulby had a fever even yesterday morning, we decided we should take him to see our local pediatrician. This was not something that required a rush to Hopkins (whew!), and in such cases we see the pediatrician and consult with the geneticist and dietitian.

Honestly I did not expect the pediatrician to be able to do anything for a persistent cough, so when my husband called and said the doctor thought Coulby has pneumonia, it took me a minute to process what he said. Coulby was given Albuterol via a nebulizer, and prescribed two antibiotics to wipe it out.

Of course I spoke to Coulby's geneticist about his diagnosis and prescriptions, and she seemed to think that from a metabolic standpoint, Coulby was handling this illness just fine. She was not concerned, therefore I was not concerned. It is just another illness to deal with, and we have had our fair share this season. I think we deserve a break! But I am thankful that Coulby is HOME through the whole ordeal and not in a hospital bed. Another blessing. I never thought my son would be able to weather so much from the comforts of home.

As for the photo, Coulby absolutely LOVES his new mask, and thinks it is cool that he can blow smoke "like a train." In fact, he keeps asking to "do his mask." At least it is a novelty for him...for now!

Where is Coulby?

My house is quiet this morning. There is no shrieking. No whining. No train whistles or rhythmic "chug, chugs." Caroline is not crying because her big brother is not tormenting her. Because he is not here. He is at Hopkins as I am typing, in the ER, having his blood drawn. And probably getting an IV for hydration and calories.

As you know from previous posts, Coulby was sick last week. He was pretty miserable--stuffed up, fever, loss of appetite, and lack of sleep. We pumped him full of fluids, made sure he did drink his formula to get his meds., and treated him with Motrin to keep his fever down. Coulby made it through the illness, after passing it on to the rest of the family, and seemed to be getting better each day. We kept him out of school all week last week, and by Monday this week, he seemed to be okay to go back. Coulby absolutely loves school, so he was thrilled. And I was thrilled that he was feeling so much better. Asking for food, drinking willingly, and meeting full protein requirements again. I always feel like I can breathe better when Coulby is well.

Then he woke up this morning whimpering and whining. He whines quite often anyway, but something about this whine told me that he was not feeling well again. I felt his forehead, and it seemed like he had a fever again. Out of nowhere! One day he is on the mend, the next day he feels sick and has a fever again! How frustrating! I took his temperature, and sure enough, he had a fever of 100.2. I took it again, thinking maybe I had not gotten it under his arm very well, and I got the same read. I swear I just deflated right there and then.

Daddy seems to be the man of the hour when Coulby is not feeling well, and he managed to get Coulby to settle down a bit and stop crying. He put him in a nice warm shower, which seemed to rejuvenate Coulby, and he even looked better. I paged Coulby's treating geneticist, told her what was happening when she returned my page, and we both agreed that Coulby should be seen, especially with just "getting over" an illness and now having a fever AGAIN! Coulby and daddy headed out to Hopkins. When Coulby left the house, he was bright-eyed and chatty, so I felt good about that. But his head was warm, so I knew he still had a fever. I had hoped the Motrin would have kicked in by then.

So that is where we are now. Coulby just had his blood drawn about 20 minutes ago, and was a champ (as usual!). I am praying that even if Coulby is still sick, or getting sick again, that he will be able to come home and we can help him get well from here. Please say some prayers for Coulby. I will post more as I know more!

Sick...again!

"Now make sure you keep your hands really clean, do not get near sick friends, wash your hands after playing in centers, and remember to use lots and lots of Purell." Coulby has heard me say this so many times that he has actually started reciting parts of it to me right before he gets on to the school bus to enter the germy world of public schools. In some part of my brain, I foolishly believed that this daily recitation would prevent Coulby from participating in the 'pass-the-virus-on' preschool game, from which he has brought home colds and other assorted illnesses. I suppose Coulby would have to live in a bubble in order to avoid ever getting sick, which we all know is not even an option.

What is my point? Coulby is sick...yet again! He was just sick about a month ago with some nasty stomach virus, which was hard on him, stressful on us, but still managed at home. In the last few days, Coulby has gone from having a runny nose, to being stuffed up, to a nasty cough, fever, and loss of appetite. Dealing with the cold symptoms: piece of cake. Dealing with the fever and loss of appetite: well, that on top of his Citrullinemia is extremely stressful and exhausting. For all of us.

Coulby's body can react to a fever by drawing stores from his body, which can cause excess protein in his system and possible hyperammonemia. We have to treat the fever with round-the-clock Motrin, and also make sure his protein intake is less than his expected daily intake. We also have to make sure that Coulby is drinking plenty of fluids, preferably those with calories. This will ensure ideal hydration and flushing of his system. By keeping caloric intake up, Coulby's body will be less likely to draw from its own protein stores to replenish his system and make him get better.

With all of this said, you can see why we dread Coulby being sick. There is the constant care to make sure he is getting what he needs to not only get better, but also to maintain his metabolic stability. Fear of hospitalization triggers stress. When he does not want to eat, he is not getting what he needs to prevent hospitalization. When he does not drink, he is not keeping himself hydrated and can end up becoming hyperammonemic. The average cold turns into a nightmare.

I pray that we can get Coulby through this cold here at home, and we are doing everything in our power to do just that. Please pray for him. For an appetite. For no more fever. For healing.