Clinic was pretty good today. Philip gained a pound and weighs 34.1lbs, in spite of stopping the Scandishake! He had another near blockage yesterday, but things are okay for now. I showed Dr Schmidt the info on the salt cabin for Philip and he even offered to write a letter to insurance stating the need for the cabin. I did not get one though, because I already know insurance will not cover any of it. We did not do a throat culture today since Philip is already on Bactrim. The nutritionist was a little concerned because Philip has not grown in length at all since November. I am not completely sure that is accurate though because the nurses had trouble getting consistent results the last few times for some reason. All in all, good visit and now we move forward with our campaign to raise money for his salt cabin! Details on his salt cabin fundraiser page!
February 8, 2012
We went into clinic today because Philip has a lot of mucus (and everyone in the house except me has ear and sinus infections). He has a slight cough. Dr Schmidt started him on Augmentin last night and we did a culture today just to make sure no PA is growing. We also filled out the paperwork for the CFF to approve his genetic testing.
March 21, 2012
Philip did great at clinic today. I took him because on Monday he was coughing and had green mucus. We have done a lot of salt therapy and Thieve's oil and he seems okay now. Jim hooked him up to his Vest to try and see where it is hurting. It seems to be around his tummy. We are decreasing the intensity a bit and ordering the next size up for when it fits. We went ahead and did his yearly blood work and also did the CFF genetic test while we were here. It may take a while to get the "official" mutations back. Philip as usual got a bunch of goodies, but his nurse Gail saved him a Batman from a few weeks ago. He was in love!
April 20, 2012
Today we went in because Philip has eaten NO solid food in four days! He drinks milk fine. He asks for food. He puts the food to his mouth, sometimes even putting it in his mouth. Then, he doesn't take any bites. He does not seem to be in pain. He does not seem to be blocked. We are stumped. Dr Schmidt sat in the room with us for over an hour trying to figure this out. He even went to the dr lounge and brought back a frosted cookie. Philip wanted nothing to do with it. Lily came in and we praised him for various things. Even offered him the toy he wanted so badly from his nurse. No go. We will give tylenol this weekend in case he has teeth pain (he would not let Dr Schmidt look inside for fear of a throat culture!). We will add Scandishake at night. If no eating by Sunday night, Dr S will call in cyproheptadine in hopes that an appetite suppressant will help.
*Update 4-28-12- After 10 days of not eating, Philip started with Doritos at lunch. Then, nothing for 24 hours, followed by a decent appetite. This was at a three times a day dosage of Cyproheptadine. Not sure how long we will use it but it appears to be the only reason he is eating for now.
June 20, 2012
Today was Philip's 3 year checkup. He did so well. the clinic was busy and he waited patiently and played with his toys for two hours. He let Dr Schmidt do the entire exam and for the 2nd time said "ahh" for his throat culture without being held down. We then went up to radiology where he did his first stand up xrays! Such a brave boy. He weighed 35.5 lbs which was a two pound gain from his period where he stopped eating.
Sept 26, 2012
Today's visit went well. his sats were 100% He also got his flu shot while he was there. His weight was 24.6, so down just about a half of a pound. he will have a full nutrition workup at the next visit. He was 38 in tall. We got back his official DNA results from Johns Hopkins showing he does in fact have two copies of delta F508. Next we went down to the pft lab to see if he would blow this time. Matthew did a few and then Philip did a bunch! He never quite got the hang of it, but scored an FEV1 of 95% in spite of not having his upper lip sealed around the device!
November 6, 2012
Today Dr Schmidt wanted to see Philip for a couple of reasons. We recently restarted Augmentin because Philip developed a bad cough and fever. Over the weekend I found out that Philip was exposed through the preschool to walking pneumonia (Augmentin does not kill Mycoplasma). Matthew and I are also currently being treated for a sinus infections. Josh was just diagnosed yesterday with croup and started on steroids. SO, we tried to get PFTs and Philip would not blow :-(. We did get a throat culture. Dr. S started Philip on azithromycin to combat the mycoplasma and also a possible sinus issue (in conjunction with the augmentin). He also wrote a script if we should need it for prednisolone if he does get croup. We are doing Afrin for three days and Flonase for the duration of the augmentin. I feel like he is covered!
November 16, 2012
We have been trying a steroid for 2 days to see if it helped wih the cough. It did not. This morning Dr S said we will do a bronchoscopy next week. Around noon today , Philip spiked a fever of 102. I called Dr S and he said to bring him in to listen to his lungs and do radiographs. The rads were not showing significant changes or pneumonia and since he has a fever now, he believes it is viral (better than bacterial!), so we will add albuterol every four hours and see if this helps. If his fever persists, we are to bring him back on Monday. We will schedule a bronchoscopy for one month and if he is better we will cancel it.
December 12, 2012- ENT visit
Today we saw the ENT at VCU. We were trying to address his sinus infections and cough that have lingered for so long this year. They ended up doing endoscopy (no sedation/no lidocaine). He was AMAZING! They did not see any polyps. She did see a pocket of mucus and cultured it to see if the Bactrim he is on will kill whatever it is. We are also to start sinus rinses twice a day and we go back in a month. NO CT was necessary! Yay!
December 28, 2012
Today we had a clinic appt which was good because Philip is sick again. He finished his antibiotics on Sat and by Sun he was cranky. Monday the cough returned. Tuesday he was congested with green mucus. The last two nights he has been up all night coughing and crying, saying his "bwain hurts" (sinus infection). I talked to Dr Schmidt on Wednesday and told him we have not been successful with the sinus rinses and I was concerned about causing aspiration pneumonia by forcing them, so he came up with an alternative. I made some bottles of nasal spray and we do 4-6 squirts of saline (without sniffing) , followed by Flonase, Followed by 1 squirt of Pulmozyme twice a day. Philip is doing these well and knows when to inhale and when not to. At clinic, we did PFTs. This time, Philip rocked it! Perfect technique on the first try. Green light every time. His FEV1 was 112%!!! I could not be happier. This was with him sick. He did not even need a nose plug because he is so congested. He also has conjunctivitis in his right eye and his ears don't look good. Not really infected, but probably pressure from his sinuses again. So, now that we have an alternative sinus rinse, we will do 3 weeks of Augmentin and get him back to baseline to see if these sinus rinses can keep this mess at bay.