Wednesday, July 22, 2009

Need to Stay Healthy

Clare is almost back to normal. Her rash is 95% gone (one week later!) and the itching is almost gone, too. She had moments when she scratched herself so much she would bleed. Our fabulous cardiac nurse at Children's is on the hunt for the anesthesia records to find out exactly what medications Clare received, so we can red flag those for the future. I think the rash was the worst part of recovery!

Clare's left wrist is still very bruised from the angio-embolization, as is her groin. In her wrist, she has a hard lump where the glue is in her vein. The Big Cahuna said that, over time, the glue will dissolve. By then, the vein will have shut down because of the occlusion. Clare goes back next Friday for a follow-up with the Big Cahuna to make sure that the glue is working. You can't feel the thrill in her pulse anymore, so I have to think it is working. Other than that, the only other noticeable recovery is that Clare is still working the anesthesia out of her body. Her muscles are floppier than usual, especially her upper body. When I pick her up under the arms, there is almost no resistance. Many times, my hands just slide right up her arms and I almost drop her - there is so little resistance, she cannot even hold her trunk muscles tight enough (like a 30-pound newborn!). I have been doing a funny "under-the-butt-first" pick-up, if she needs to be carried up the stairs or in and out of her car seat or dinner chair. I am afraid I am going to pull her arms out of her sockets! The increased floppiness means that Clare has to work harder to do anything, so she is exhausted by lunchtime. Especially since she is back in school four days a week. She had two therapies in school today and we got the brunt of that for the rest of the day. I wish she would nap! The best I can do is have her settle down for a movie, read books on the couch, and do other quiet things, like painting race cars that we can assemble tomorrow. It is very frustrating because I know she needs to nap, but try reasoning with a four-year old over that.

Since Clare is on the mend, I now have some sort of kidney obstruction. (Maybe that's one of the rules about a large family - all of us cannot be healthy at the same time.) After a few days of a new pain in my lower back and other symptoms, I had an ultrasound done this week that showed my right kidney is distended, most likely due to some blockage or infection. I am on antibiotics, but it is becoming increasingly painful, so I am going in for a CT scan tomorrow. I am praying that they find something on the scan. If not, I will be encouraged to undergo a more invasive test that involves an isotope injection. If I do this test, I will not be able to breastfeed Violet for 24 hours. I also cannot take any of the medications the urologist wanted to prescribe to soothe my enlarged kidney because of breastfeeding. So it's been a tough few days and I am trying to figure out what to do. Right now, I am pumping for the first time in six months to bank some breastmilk in case the urologist does want me to do the second test. This is where breastfeeding gets tricky - trying to balance my own health and comfort against my baby's. Right now, I can handle the pain, but I am a little worried about what comes next.

3 comments:

tara said...

Bless your heart you can't catch a break!! I'll be anxious to hear an update on how you are doing.
Thinking of you!!

Aunt Joan said...

Teresa ~ As always, you are in my thoughts & prayers!! I am so sorry that you are having so much trouble!! Those kidneys are vital, so you need to take care! Violet will survive on pumped milk (even formula!), and she will not remember any of it. I understand the dilema, but you need to get yourself well, too!! Take care & keep us posted, please. You will be thought of tomorrow & prayers are sent your way! Love ya......

Christina and Tee Jay said...

We are still praying and looking forward to (good) updates!