Friday, January 22, 2010
More good news
As of this afternoon, Peter can stop taking thyroid medicine! The pediatrician just gave the all clear. He will have a follow-up blood test in a few weeks just to make sure everything is going fine.
Tuesday, January 19, 2010
Mostly good news
Time for another update. Peter now has three teeth, all on top! Lately he has been working on crawling. This is much more fun without a G-tube sticking out of his stomach.
The only not so good news is that Peter is currently fighting a bronchial infection. At first this was diagnosed as a virus, but the trach culture from his last doctor's visit finally came back showing no less than five different bacteria growing in there. These are common but nasty trach bacteria, and the pulmonology clinic said that Peter had been doing well to avoid them for so long. He is now receiving an antibiotic (Tobramycin) via nebulizer twice a day and seems to be doing better. We have had to go gently with the time off the vent because it tires him out so. Before the infection hit he was at 6 hours a day total.
Back to good news now. Peter is now off all his diuretics, leaving aspirin and synthroid as his only regular daily meds. We are waiting for the results of his most recent blood test to see if he can come off the synthroid. Also, both the cardiologist and pulmonologist said they had no further use for his Broviac catheter (a permanent IV line in his chest), so it can come out as soon as Peter gets over his present illness. This is really wonderful news. Apart from the danger of a potential blood infection, the Broviac takes a lot of maintenance. Every day it has to be flushed with heparin to keep it from clotting up inside. Every three days the caps on the two lumens (ports) have to be changed. Every week I have to don the surgical mask and sterile gloves and change the sterile dressing covering the spot where it enters Peter's chest while an assistant holds Peter and keeps him from touching the site. While Peter was in the hospital and receiving so many IV meds, it was a practical and useful appendage. Now it is no longer needed, praise the Lord, and soon Peter will be able to say goodbye to yet another bit of tubing.
The only not so good news is that Peter is currently fighting a bronchial infection. At first this was diagnosed as a virus, but the trach culture from his last doctor's visit finally came back showing no less than five different bacteria growing in there. These are common but nasty trach bacteria, and the pulmonology clinic said that Peter had been doing well to avoid them for so long. He is now receiving an antibiotic (Tobramycin) via nebulizer twice a day and seems to be doing better. We have had to go gently with the time off the vent because it tires him out so. Before the infection hit he was at 6 hours a day total.
Back to good news now. Peter is now off all his diuretics, leaving aspirin and synthroid as his only regular daily meds. We are waiting for the results of his most recent blood test to see if he can come off the synthroid. Also, both the cardiologist and pulmonologist said they had no further use for his Broviac catheter (a permanent IV line in his chest), so it can come out as soon as Peter gets over his present illness. This is really wonderful news. Apart from the danger of a potential blood infection, the Broviac takes a lot of maintenance. Every day it has to be flushed with heparin to keep it from clotting up inside. Every three days the caps on the two lumens (ports) have to be changed. Every week I have to don the surgical mask and sterile gloves and change the sterile dressing covering the spot where it enters Peter's chest while an assistant holds Peter and keeps him from touching the site. While Peter was in the hospital and receiving so many IV meds, it was a practical and useful appendage. Now it is no longer needed, praise the Lord, and soon Peter will be able to say goodbye to yet another bit of tubing.
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