Over the past couple weeks Louie has had four different doctor appointments, besides his usual therapies. First we saw his pulmonologist (lungs) as a follow-up and medication review. Lou is doing well on his twice daily Flovent 40 mcg inhaler, which is considered his maintenance inhaler to maintain clear lungs. He also has Xopenex to use as a “rescue” inhaler, for asthmatic-like attacks, but thankfully we have not needed to use that inhaler much at all. The impending season of upper airway infections is hovering over us so we have a new game-plan for that as well: if Lou seems to be more congested or coughing more than usual, like a cold is coming on, I will use Flovent 110 mcg three to four times daily to nip it in the bud. The doctor also brought up the idea of starting Lou on a three-times-per-week dose of antibiotics, not as a preventative measure, but rather an anti-inflammatory measure, caused by viral infections, which Lou is more prone to getting. We are sitting on that idea for now and will go down that path if needed. As a last resort, for airway issues, we have Decadron on hand, but that is a systemic drug and inadvertently decreases your immune system some, which is obviously not at all what Lou needs. It remains a very last resort to prevent a hospital stay- let’s hope we never have to mention it again.
Next we saw the immunologist for follow-up as well, who re-checked his immune functioning cells. Overall, most cells are functioning as they should, some remain at lower than ideal levels, and some are absent. Compared with his last check, he is better in some areas and the same in others- so good news, we are not getting worse. However, the immune system is so extraordinary that each cell has a very important role; the lack of function of some, and lower functioning of others, can have a fairly significant impact overall. Thankfully Lou’s IGg (antibodies) are at great levels, so unless Lou gets hospitalized this winter, we will not go forward with IGIV- IGg infusions. The infusions would basically give Lou the immunity of the IGg host, so we joke that everyone would benefit from such an infusion as you would gain immunity without having to go through the battle of having the illness. However, the infusions are extremely expensive and would require a central line (IV into the heart) or painful subcutaneous (under the skin) infusions. Again, let’s hope we don’t have to talk about that again.
Third, we saw the ENT doctor, basically for follow-up but also out of my inquiries about Lou’s middle ear. Good news is that his ears are the cleanest they have ever been. I have been lavaging them in the bathtub, using a 12 mL syringe and bath water, and all his ear crud flows out. Woohoo! I was pumped to know that my ingenious invention was working. Lou doesn’t even mind the procedure either, he actually thinks it’s funny, like most things 🙂 I then went into explaining how Lou isn’t walking, his speech is still mostly babbles, and he is quite unsteady, all of which seem to point to an equilibrium issue, which lies in the inner ear. Lou has not had many ear infections, thankfully, but I feel as though they have sort of been neglected. We then had a tympanogram done, which measures the way the eardrum moves, and it should produce a graph that resembles a hill. Lou’s results were flat in both ears, representing little to no movement to stimulus. This often occurs when there is too much pressure behind the eardrum, thus restricting the movement. When we were in D.C. he actually had flat results as well, but we were told that it was due to all the crud in his ears; now he has no crud and still has abnormal results. (I have a feeling he has always had this issue.) A common way of dealing with it is to get tubes (grommets) placed, to allow the fluid to drain out, for the Eustachian tubes to open, thus allowing the inner ear to better equalize pressures. We scheduled the procedure on September 23rd in the morning. It will require general anesthesia but is a same-day surgery. Now let’s hope we do need to talk about this again, so I can tell you that he is talking and walking better after tubes.
Lastly we saw an allergist for the first time, as another specialty not yet explored, and out of recommendation from the pulmonologist and immunologist. We want to make sure there isn’t an allergy that we are overlooking, as Lou continues to vomit and have ongoing congestion. The allergist explained that there are two ways to test- on skin and through blood. There is not a blood test for food allergies, but you can test blood for environmental allergies. Lou’s vomiting is so inconsistent, and he has never developed the tell-tale hives, that there is a small probability he is actually allergic to any foods ingested thus far. So, we plan to take some blood while Lou is under for tube placement, and will test for environmental allergies. There are no particular foods I am super worried about, and I don’t want to put Lou through skin allergy testing, so we will not go there, and I will continue to avoid the common food allergens including wheat, dairy, and eggs. We should hear results on the blood testing within a couple weeks of the tube placement.
The current days have me feeling hopeful and grateful. Lou is such an inspiration and is making progress with mobility and cognition every day. I am admittedly nervous about the colder months ahead, but worries are a waste of time, right? Let the vitamins, inhalers and good hand-washing lead us.
