This week is already off to a better start. You woke up smiling for the first time since you became I'll two weeks ago. Still not completely yourself yet, thanks to 8 new teeth, but getting close. I am so glad...I have missed my little sunshine! You bring so much joy to our home, and when you are sick we all feel bad.
Today was filled with a trip to TCH for a follow-up appointment with Dr. Louis. We talked about several ideas and concerns I have about you. Here are just a few.
1) A major problem is that you have lost weight. You are now down to 14.5 lbs after almost being up to 15. We are going to continue feeds as normal for the next month and give you a chance to regain what had been lost from being sick. If we don't see significant improvement then we will have to adjust feeds.
2) We ordered oxygen for you at night for when you O2 sats drop below 92. It doesn't happen every night, but when it does you hover in the high 80's for hours. Daddy and I have to wake you up until you are as alert as can be expected for whatever hour it is until your sats reach 94 (if we are lucky) and then lay you back down. Inevitably, as soon as we get back in our bed the alarm goes off again. Since you lay on your side at night, we are hoping just placing the mask next to you will be enough. I am guessing you won't tolerate it on your face at all.
3) Cholesterol levels. Goodness. So you were born, it was 22. Jan of 09 it was 34. January of 2010 it came back 4.9. We thought was some crazy fluky thing so we retested. This time it came back 3. Say what?? Three? Tomorrow I am going to have to get on the SLOS forum and talk to the specialists and see what they make of that. It should be over 100 to be considered normal. We have a long way to go. But on the positive side, your 7-DHC number has almost been cut in half, and that is even more important than total cholesterol. In the meantime, we are doubling your dose.
4) Your wheelchair is coming tomorrow, which we are thrilled about! So we got handicapped parking plates and a placard. Whoohoo!
5) Your breath has not been good lately, and often that can be a sign of infection. So I mentioned it to Dr. Louis who looked at the CT Scan we took while in the hospital to look at your shunt. And sure enough, your middle ear and sinuses have some fluid. So you will go on Augmentin for 10 days.
6) Dr. Louis wrote a script for Zofran, an anti-nausea medicine used for chemo patients. We are hoping if you have a spell like this again, it will keep you from getting so massively dehydrated.
7) I brought up congestive heart failure since it is a leading cause of death in SLOS kids, but I am not sure causes congestive heart failure. I still don’t know, but we are going to have an echo done for good measure.
Those are the highlights. We got a lot accomplished and hopefully will find some more clues as to what happened two weeks ago and how to prevent it from happening again.
Tomorrow morning your chair comes and that means you will be sitting up big most of the day from now on. So sleep sweetly precious one. You are going to be working hard tomorrow!