We took Caden to a new pediatrician on Thursday 2-17-05. This was one of the best moves that we have made in the six weeks that Caden has been home. The new pediatrician got more done in one afternoon than the previous pediatrician did in the entire past six weeks. He made several referrals that we did not even know we needed. He listened to the feedback that we recently got from the Children’s Hospital of Philadelphia (CHOP). He admitted that he can not possibly know how to deal with every detail that Caden needs addressed, but promised to help us identify, manage and coordinate with specialists who can assist us. He and the other members of the practice there are all Christians.We really like the idea of having a Christian doctor. He quoted a scripture that summed up his belief about how we should view the doctors that we come in contact with and how God can use them. “The king’s heart is in the hand of the LORD, as the rivers of water: he turneth it whithersoever he will.” Proverbs 21:1 (KJV)
We did contact CHOP recently about seeing Caden. They will see him. It just takes time to get a copy of his records sent up and evaluated to see what clinics he needs to visit while there. It will likely take several months to get the appointments arranged within a few days of each other to make our trip more productive. We will then likely visit them once or twice per year. In the meantime CHOP will work with Caden’s local doctors to offer advice based on research CHOP has done on over 600 patients that have been diagnosis with DiGeorge.
I know that everyone has been anxiously awaiting the results of the modified barium swallow (MBS). Well Caden showed about the same results as he did the last time he had a MBS done back in December. We believe that he is swallowing some, but the test did not reflect that. The doctors performing the MBS on Friday are the same ones that have tested Caden on all three occasions. They plan to consult with CHOP to make sure they are testing Caden in a way that is likely to show the best results before testing him again. They seem to believe us when we say that he is swallowing some. They just don’t seem to think they are testing him in a way that will prove it. They did not want to schedule a new appointment for the next MBS until they contact CHOP. If something significant comes out of this communication then they will want to test Caden again immediately. Otherwise, they will probably set Caden up for another MBS at 5 months of age (beginning of April).
I did travel last week to Utah and I am traveling again this week to Colorado. Sherry did great last week even though she did not have assistance on one of the nights I was gone. We are working on getting the insurance to pay for the in home care. I have been trying to get Caden’s previous pediatrician to send in a letter to the insurance for two weeks now. I believe her staff was letting her down. The new pediatrician took about two hours to get the letter into the insurance company after Caden’s visit on Thursday. I talked to the insurance company later in the day on Thursday and they had receive the letter. We expect an answer later today (Monday) from the insurance on what level of care they are going to provide. In the meantime, we have to shell out just under $100 per night to get a certified nurses assistant (CNA) for just a few hours. This at least gives Sherry the peace to be able to sleep for a few hours uninterrupted when I am not here to do my normal shift. While the CNA can suction Caden they can not give medicine and can not touch Caden’s feeding tube. The suctioning is the most critical issue in the middle of the night anyway and they can always wake Sherry if needed. The is no rhyme or reason to when Caden refluxes. Saturday night he did not reflux at all. This morning , I have stopped writing this message twice to suction him due to fairly severe reflux spells that caused him not to be able to breath until I cleaned his airway with the suction. The pediatrician expects the insurance to provide an LPN or RN to be able to administer medicine as well as stop and start food as needed to give the medicine.
I have saved the best news for last. Caden was weighed again this week and is now up to 9 pounds 8 ounces. He is really doing great in this area. He continues to grow and become more active. He is smiling a bunch more this week. He is cooing and making those cute little sounds more every day. He is rolling from his back to his side and from his side to his back. We are so excited about his progress and hope that you are too. Caden still has some hurdles to overcome with his reflux and swallowing, but there does continue to be signs of improvement in his overall condition on a regular basis.
Thanks again for visiting Caden’s page. We do still need the support and appreciate every little thing that is done for us. Sherry is managing appointments with over a dozen different medical professionals including doctors, therapists, nursing agencies, equipment providers, pharmacies, and government support agencies. The sad thing is that Caden has not even seen some of them for the first time yet. Sherry continues to need help with Riley when she has to take Caden to an appointment. Several of our friends have been so awesome at helping in this area. We do appreciate every little bit of help. We still have friends bring dinner once in a while too. That especially helps Sherry when I am on the road. This entire situation is more difficult to deal with at times than anything I have ever done. It amazes me how well Sherry handles it all day without assistance. Your prayers and help have and continue to be greatly appreciated. Sherry and I become extremely exhausted at times. Riley is doing great, but does show signs of the situation wearing on him too. Please keep us in your prayers. God bless you and your family.
Hank O