More doctors . . .

Let's start with the easy news first. Toby saw the surgeon in Toledo yesterday afternoon. His hernia surgery will be scheduled for sometime after September 22nd and will either be outpatient or, since he is still on oxygen, may require an overnight stay if the anesthesiologist desires it.

The visit in the morning with the pulmonologist was more involved. The data from the oximeter showed more time with a reduced level of oxygen in his blood than they want to see. The doctor also heard an intermittant "crackle", possibly indicative of some fluid in his lungs. He is also still working hard when he breathes. So she put some changes in place. Toby has more medications ( and more potential side effects) to deal with now: diuretics to eliminate fluids and a daily inhalation steroid treatment. He is also receiving a higher level of oxygen support during the night.

Additionally, the doctor wants to increase the growth of new lung tissue and maximize his gains in this area during the first two years. The more he grows overall, the more healthy lung tissue will also grow. He has been gaining about three quarters of an ounce a day- which is good, but not the most possible. The extra work he puts into breathing burns extra calories which then do not go towards growth. The slower growth rate means slower growth of healthy lung tissue. The slower growth of healthy lung tissue means he continues to work hard when he breathes which burns extra calories which . . . Ok. You get the idea. A nutritionist is going to advise us on how to put some extra calories into his diet so we can try to break out of this cycle. It will be a challenge since he has been breastfeeding exclusively.

The hope had been that Tobias would be able to begin weaning off the oxygen. The reality is that we have had to move in the other direction and increase his use of it. Plus fall is approaching rapidly and with it the season of respiratory illnesses which are so dangerous for him. The nurse explained to me again that the problem is not that his immune system is not working as well as other babies'. The problem is that if he does come down with a respiratory illness, his lungs are already too compromised to be able to deal with it well. What would be a minor illness for another will be major for him. So we will need to continue to avoid group settings and contact with anyone who is ill. Again, this is the opposite of our hope that we would be able to relax a little in this area. However, we are so thankful to God for Toby and his good health so far that we are quite willing to cooperate with whatever he needs to stay healthy. We are praying that he will make it through his first year without needing to be re-hospitalized, a major accomplishment for an infant with his problems.

He IS smiling a little more readily now and a delight every day!