July 27, 2009 - First official clinic visit and more sweat testing!
Today was Philip's first clinic visit. We did not know, but they are doing another sweat test to confirm. Poor little guy.
The doctors are surprised how big and healthy he is. Today we meet with the doctor and the nurse coordinator. The doctor gives us a special vitamin for him, since CF patients have trouble absorbing vitamins A,D,E,K. The stuff is so disgusting. It is neon orange (much like iodine) and smells terrible. I imagine we will have many orange stained onesies.They take a stool sample to check his pancreatic function and do a throat culture to check for lung bacteria. Each visit they will weigh him, check his length, temp, BP, SP02 (oxygen saturation). We will return in one week.
August 7, 2009
Philip is 11lbs and 0.35 oz. Philip is doing well, but he does have low enzyme count in his stool sample, so, like almost every CFer, he will be on pancreatic enzymes. They prescribe Ultrase, and he must take them before every meal. We have to put them in applesauce. The enzymes are good in his system for about 30 minutes. So, if he falls asleep eating, or eats slowly, we have to give him another one.
August 14, 2009
Philip is 11lbs 12 oz. He is growing well, but the nutritionist tells us that weight up until age 2 directly correlates to lung function later in life. So, we have to write down everything he eats, and we have to fortify his milk with 1tsp of formula for extra calories. This now means that I have to pump every two hours (forever) in order to maintain my milk supply for him.
August 28, 2009
Philip is 12lbs 1oz. I tell the doctors that I think he may have reflux. He has terrible stomach aches and hiccups. They prescribe Zantac twice a day.
September 4, 2009
Philip is 13lbs 5oz. Today they tell us to add one packet of salt each day (1/8 tsp) to his milk. I add it throughout the day to his bottles. He refuses it. This is going to be difficult.
September 18, 2009
Philip is 15lbs 3.8oz. Today's visit went well. They added chest physical therapy to our routine. We have to cup our hands and beat his chest over all lung lobes (front, back, and both sides). This is 2-5 min each side once a day, unless he is sick. Then it is more. We were going to get a nebulizer and albuterol, but the doctor said it is questionable whether it actually helps, so they will not add that to our daily routine yet.
Philip - 3 months old
September 30, 2009
Today was another long appointment! The nutritionist wants Philip to gain a pound in the next week. They send us over to the Children's hospital for radiographs and bloodwork. This is routine and something he will have to do through for the rest of his life. Like every procedure we have done, I held him for the xrays and bloodwork. :-( We also found out that his first throat culture came back positive for two types of bacteria (pseudamonas and flavobacterium). It was not the typical pseudamonas though, which is good. They do another throat culture to see if he cultures the same bugs. If so, he will need antibiotics. Pseudamonas, which is very strong, and often found in water can be deadly to CF patients, since they often cannot get rid of it and it eventually takes over their lungs. Most CFers who culture bacteria will culture it for their entire life. This is very scary, and he is so young to be culturing this. How does this happen? I do not allow anyone to touch him, and I sterilize everything that goes near his mouth. I hate that he has to come to the hospital so often where so many germs are. Atleast they have made a new policy that anyone who holds Philip (or any CF child) must completely gown and glove up.
I am no longer getting up in the middle of the night to pump and bottle feed him. I am allowing him to nurse whenever he wants at night without his enzymes. He seems to be doing fine and is not uncomfortable because of it.
Philip at MCV with an intern
October 21, 2009
Philip is 16.8lbs. I have started to notice about midday that Philip is uncomfortable. We will increase his Zantac to three times a day. I was able to find something called a MediBottle that uses a syringe to give medicine through the nipple of a bottle. For the most part, the salt goes down undetected! The nutritionist has told us to start cereal once a day.
Philip hates the cereal! I would imagine it is because he has had sweet applesauce from such a young age!
I went to the pharmacy to get his enzymes. They are $50 with my insurance and this will only cover him for maybe 10 days! This is going to get very expensive even when he is healthy.
Philip - 4 months
November 9, 2009 - Philip's 1st illness...sort of
Philip has his first illness. He coughed last night and since my mom is sick, I ran him to the doctor. To my surprise, they heard rattles in his chest. They put him on azythromycin. He really never got sick. We caught it early!
I was also able to sign up for a free program that all CF children are on. The drug company will pay for Philip's enzymes and vitamins until age 4 and after that they give him $50/month for the rest of his life. This is amazing!
November 25, 2009
Philip is 18.18lbs. The nutritionist says he is almost overweight in one category, but not big enough by a different chart. Ugh. They want him to grow more in length this month. We are supposed to feed him the wet rice cereal with applesauce and add a whole scoop of formula to it. The doctor says his lungs are all clear and his SP02 continues to be 100%. I ask the doctor if I am overreacting but not letting anyone hold him. He says absolutely not, especially with it being cold and flu season.
When I got home, we tried the cereal. He gagged and spit it out. So, we have worked our way up to 3 tsp and I am supplementing his bottles to make up for the other 2 tsp/day. I could not find the jar rice cereal, so I had to order a case online for like 4 times the amount that it should have cost!
December 9, 2009 - sick
Well, we went to one family gathering, and church on Sunday. Not sure exactly where he picked it up, but all three have a runny nose and cough. After three Dr visits, Philip's mucus finally has turned green, so it is time for antibiotics again. He is happy and it is not in his lungs!!!! We have been doing his therapy in a steamy bathroom to help clear his nose.
December 23, 2009
Today Philip weighed 19.44 lbs! His goal this month was to gain 0.5-0.6 kg and he gained 0.57 kg! Perfect! He also grew in height, which bumped up his weight to length to 84.4. The nutritionist is having us start his solids now. He will get (by 8 months), 4Tbs cereal, 4Tbs veggies, 4 Tbs fruit, and ~30 oz milk a day. I am planning to make his food , like I did with Matthew. We also have to double his salt intake now since he is 6 months old. The doctor said his last throat culture was negative (yay) and he heard no mucus in his lungs. Philip is really doing wonderful. I told the doctor that I know it's not politically correct to say "mild CF", but I ask him if this is typical. Even when he was sick, his mucus was never thick. He just doesn't have the symptoms I keep hearing about. The doctor said CF is so different than it was a few years ago, and if he had been diagnosed at even 9 months old, we may be dealing with a different situation. I'm so glad he was diagnosed early and that his CF team is so wonderful! They even sent home Christmas bags for his brothers! We will return in two months.
December 28, 2009 - Sick visit
On Saturday, Philip developed a cough that was deep and wet. It came out of nowhere. He has a runny nose and is sneezing. Saturday night he had trouble catching his breath during the night, although it may have been that he was congested and did not know to open his mouth. We increased his therapy over the weekend and today we took him to MCV. He has lost a few ounces since Wednesday. The doctor said it may just be a virus, but since CFers have a thick mucus that traps bacteria, we will do antibiotics for two weeks to prevent infection. They also did another throat culture, which will take a few days to get results on. We started an albuterol puffer to help open the airways. We will do this before his chest therapy and see if it helps clear his lungs. Overall, he seems to feel okay. He is still happy. He just looks tired. Hopefully, we won't have to return to the CF clinic until his next scheduled visit. I commented again to the doctor that even when he is sick, his mucus is not thick. He said he was unrecognizable as a CF patient (due to his nonexistent symptoms for the most part). That was nice to hear!
Getting his albuterol treatment
He was actually crying, but that pulled even more into his lungs!