Saturday, July 26, 2008

Ellie Update

Well, we got the results back from the tests on Eleanor's kidneys and bladder. The results were not good, unfortunately.

First, a word about the tests that were performed. The first test was a kidney ultrasound. It is standard procedure for someone who has problems with UTIs. They were looking for damage to the kidneys caused by the infection. They found grade three (out of 4) hydronephrosis in her right kidney. The left kidney is fine thank goodness.

Second, Ellie had a VCUG test. It is where they insert dye using a catheter into her bladder to see if urine is reluxing in to her kidneys. It showed a grade 4-5 (out of 5) vesicoureteral reflux into her right kidney. They often recommend surgery for children with grades 4 and 5.

We have referrals to see a urologist and a nephrologist to see what they recommend for Ellie. The test was on this past Tuesday and by Friday she had another UTI starting. She will now be on a course of antibiotics to take care of this infection, and then continue with a lower dose to prevent any more infections from occurring while we determine the course of action.

So that is all we know until we see the specialists. It is hard to know if they will recommend surgery on Ellie considering her underlying condition. We are really upset over these recent developments and that our poor baby has to suffer more. Please pray for wisdom for us and the doctors as we pursue treatments.

Thursday, July 24, 2008

New Pictures and an Update

Things are returning to normal around here. We are all recovering from our colds, though Ellie is taking her sweet time doing it. We finally called into the doctor and asked her to prescribe Ellie some steroids to help with her breathing and clearing out her lungs. She really did handle this cold better than the last two though.

We did not get good news from the tests that resulted from her UTI. They showed that she is reluxing urine into her kidneys which can be quite damaging if it is bad. It also can be the cause of frequent UTIs. We do not know how bad the relux is yet, so we are not able to draw any long term conclusions from the test yet, other than we can add a few new doctors to her repertory. blah.

Ellie is now doing a six-week course of therapy at Mary Free Bed. They really are not doing too much new for her, but it does open us up to new contacts and opportunities. It is also something I can cross off my list that we tried. Then on to the next thing!

I want to thank you all for remembering us, even as you get busy with summer and other things in life. Your cards, comments and gifts mean so much to us and sustain us through this journey. We feel held up by your prayers and love.

Friday, July 18, 2008

A Rough Week

Well, it's been a tough one around here. Just as Ellie was starting to feel better from her infection, the boys came down with colds. They ran fevers one night and then woke up with bad coughs. We just prayed that Ellie would not get it, but of course she did.

She has been handling the cold quite well, not requiring supplemental oxygen yet. She just has a lot of secretions and is coughing more than usual (which is actually a good thing for her!).

But, things took a bad turn again last night with her running a fever and then sounding like things were sticking in the lungs a little more. She is still hanging in there, but I am getting concerned again. And feeling a little frazzled.

Please pray for Ellie that she will kick this thing!

Friday, July 11, 2008

10 months

minus one day ;)

Wednesday, July 9, 2008

Ellie Update

Ellie woke up with a fever on Saturday afternoon. She was also gagging after her meals and looked pretty uncomfortable. We helped relieve some of her discomfort by venting her g-tube and helping her throw up out of it. We figured she had a stomach bug and prayed that it would pass quickly. She continued to spike fevers off and on for the next several days. She was quite lethargic and uncomfortable.

On Tuesday morning, when she still was burning up, I went into the doctor with her. We figured it was just a stomach bug, but since she had had a fever for more than three days, additional testing was necessary. We decided to test her urine first--easier than going to the lab for a blood draw.

It turns out she had her first UTI. I feel so bad that we did not catch it sooner, but we really had no reason to suspect it. I guess they are not uncommon in baby girls, and we are hoping it was just a fluke. There is a chance, though, that it could be a result of her weakness and that she is failing to empty her bladder. That would not be a good thing, and would lead us down a road we do not want to travel. So, please pray that this is a one time occurance. We will be following up with the doctor and finding out where to go next with this.

We are so thankful that it was not a respiratory illness and that Ellie's breathing was very stable throughout her infection.

We started the antibiotics yesterday, and she is feeling much better already today.

Thank you for your prayers and concern for Ellie.