Monday, July 13

Not the best start for the week

Tommy's first appointment this week was at the Allergy and Immunology local clinic to focus more on the immunology piece of Tommy's health. Specifically, now that he is mending from pneumonia, we want to know if he has enough of the pneumonia antibodies present in his body. So the next time this happens we will know it' not because of something he lacks.

His oxygen saturation at the highest today was 95% great. His lungs sounded clear. Terrific. He still has drippy eyes and nose but his ears are clear.

But when the nice folks at the immunology clinic started talking about the 'tests' that they want to run in conjunction with the Pulmonary dept at Children's Hospital, it was too much for me to hear. Tommy has been thru too much illness to see him go thru more testing. But after talking to Colin tonight (and many prayers) we feel that if we didn't find out the 'why' as to his recurrent respitory infections (14 antibiotics last year) and to better know how to stay on top of his health, we wouldn't be doing the best job that we can as his parents.

Let me tell you this is the hardest part. All four of my kids don't like needles, of course. But three of them can be reasoned with and explanations given and in part, or all, they understand. Not so much with Tommy though. He may understand too much, he doesn't want to listen to the reasons, and he is just plain tired of being sick and tired.

So, off we will go to Pulmonary at Children's Hospital. Hopefully we can meet with them for a short time on Friday while we are there in other departments. But if not this week, we hope the referral will be soon while there are no nasty viruses floating around their clinics.

The tests, although I'm not going to mention them here, are for life threatening issues. Tommy's heart mitral valve moderate leak is life threatening enough along with his aspirations... so when the immunology staff indicated the 'other tests' they will be conducting to 'rule out' a few other life threatening issues, my heart became very heavy. But I just kept telling myself it's in God's hands. Colin and I will do the best job of loving our lil' munckin the same as all of our kids and providing him a lifetime. However short, or however long his lifetime is, we will enjoy everyday and not take them for granted.

But, this isn't the end of our day. Nope. Tommy and I came home and fixed dinner. Soon Colin and Liam were home too. Hannah and Nate were at their dad's house tonight. Soon there was a call from our local pharmacy informing us that not only did our insurance company not cover the solutab Prevacid's for Tommy's reflux, but the Omeprazole that they did cover, cannot be broken open and sprinkled on food because it binds with proteins and cannot be chewed or crushed. And they didn't think it could be mixed with water and put into his gtube. Hmm. Curious that United Healthcare would think a silent aspirating toddler could swallow a capsule. Honestly, I didn't use the word 'curious'. And of course this will be another blasted appeal, gee whiz UHC enough already!

Tommy has been without his acid reflux med for two days because we have been struggling with insurance coverage and options from our doctor, who is really thoughtful about options. Using what the pharmacy said we called the evening clinic and spoke with a nurse tonight about wether we are suppose to use the Omeprazole with Tommy. She forwarded our question to the doctor there tonight who replied he wasn't going to change Tommy's meds. Now it's not so much that I disagree with his decision not to change a really complicated kids' meds, but for two working parents to have to juggle ALL THIS during daytime hours at work is hard. No, it's extremely hard! And more importantly it will be Tommy's third day without reflux management. So, as soon as the doctor in the morning calls something into the pharmacy, even if we need to pay cash, I will leave work ... pick up the meds.... drive to Tommy who will be at Promise and give him his meds. Which all could have been avoided ... on so many levels.

It's off to baths right now and some splashing therapy. I might get in the tub too! Tomorrow will be there then.

Tommy Adventures