News. and boy is it!

We had a follow up with Dr. Mart last week.  He expressed concern that they were not able to find anything in the cath lab to "fix" to help with the low oxygen levels.  He assured me that he had asked specifically for Dr. Day to do the cath because if there were collaterals or anything else that could be done, he would find it. We then discussed that the only way to bring her levels up at this point is to go ahead with the Fontan.  

When Dr. Mart said  "I am going to present her next week at conference for an "early Fontan" (bold and italics added for emphasis) I just about fell off my seat.  I knew she was going to need it eventually. And I knew that low oxygen levels were an indication that it was getting close to time. BUT I didn't think at all that he would have said that NOW. 

He also discussed the possibility of also doing an aortic arch reconstruction if the stents in her heart weren't going to eventually be able to be stretched out to an adequate size.  

Not only did he spring the "early Fontan" on me, but he also said that he was going to recommend it for APRIL.  As in this month. 

Hello. Let me introduce you to the rug that was completely pulled out from under me. 

He said that he couldn't see any benefit  for her, in waiting.  He said her saturations would go down along with her energy level, weight gain and overall health.  That for her, now would really be the best time.  

I was able to talk to Dr. Johnson on the phone today.  He told me that Dr. Burch and Dr. Grey, the final voices in the decision on surgery weren't at the conference this morning so a scheduling form wasn't able to be turned in.  But  he was fairly confident that the surgery will be in the next two weeks!  I was just getting my hands around the month idea and now it was two weeks.  We won't know for sure the date until they are able to run Darla Jane's case by those two doctors but we should know a date by the end of this week.  

He also said they discussed her aortic arch and that they don't feel the need to do reconstruction on that right now.  whew!  One less worry on our plates.

Let the prayers commence.  Ready. GO!

Happy Birthday little miss!!

I cannot believe this little girl is already 2!  The past two years have just flown by. She is growing into such a fun, smart, sweet, happy, beautiful girl. I know our family is not at all the same with her in it.  Happy Birthday little one.

the story of a girl and the cath lab.

7:30 Friday morning we jumped in the car to take Katelyn and Elli to school.  Right after we dropped them off we were on our way up to Primary Children's Medical Center for our 9:00 AM check in...you can see just how excited our little miss was about this idea. 

 We got all checked in and ready for pre-op.  Darla Jane cause all sorts of trouble for anyone who wanted to weight, measure, listen check or even get within a 5 foot radius of her. She LOVES the doctors office.  But they were able to get the information they needed, for the most part, and we were ready to go

After they take the kids into the lab they leave the parents with this little friend to make your wait even more exciting as you stare at it waiting to buzz and tell you your little one is done...I also learned, while waiting that they buzz it to call you down to the lab to ask you permission to run a bigger catheter and place a second stent. Thanks to the guided intuition of a dear friend, Jerai, who stopped by just in time I had to courage to walk down that hall and get the news.  But following her rock star status, Darla Jane did amazing in the lab.  Because of the stent being placed we got to spend the night in the CICU.

We spent a lot of time snuggling, Darla Jane spent a lot of time screaming at anyone who came close to her, and I spent a lot of time trying to keep her calm... unsuccessfully.  

Then we both spent most of the night in the chair because Darla Jane would have nothing to do with being put in the crib.  Next time we are requesting a bed so mom can snuggle WHILE laying down...

Luckily in the morning we were able to get a few smiles out of her...

Maybe it was because she received 3 new stuffed animals while she was there.

I am more and more amazed by this girl and the strength she shows despite the trials she has. We LOVE her so!

schedule for tomorrow

Tomorrow we go in for Darla Jane's cardiac catheterization.  Here is a link with a little information to help understand what the doctors believe the problem is and how they can fix it. We are hoping they are right and that it is an easy (for them) fix.

We are scheduled to check in at 9:00 AM.  The procedure is set to begin at 10:30. The charts have us staying over night for observation and then should be able to be sent home on Saturday morning.  Prayers, prayers and more prayers for this little girl. Although this seems minor compared to what she has been through, it's still kind of a big deal... to her mama anyways.

*update

I talked with Dr. Mart today.  He told me he had talked to Dr. Day who reviewed Darla Jane's previous cath.  Dr. Day had said he saw some places where collaterals were beginning for form so he feels like that is what we are dealing with.  If that is the case, it should be an easy fix for him.

Not the update you were expecting.

                                    

Instead of checking into the hospital yesterday morning, we were checking temperatures.  And Darla Jane's was 101.  She had a fever earlier in the week but we thought it was long since gone. Nope.  It was back and so I called to talk with the doctors to decide what to do. Anesthesia as well as placing the coils (or plugs) being sick, especially with a fever are very risky. So with a unanimous vote we decided to reschedule.   

Not only does she have a fever, but little miss also has been reunited with her dear friend Mr. McNaselCanula.  Who she really was not very excited to see.  She is needing around a liter to keep her sats up.  I'm not sure if it is because of the illness or her heart, possibly a little of both.  But it's back and will be around until she doesn't need it any more.

We took Darla Jane to the pediatrician to see if we could find the cause of the fever.  Official diagnosis from the doctor himself was that she has a "wicked bad ear infection".  We were given a prescription for Omnicef and were told she would be good to go for her cath which is now rescheduled for March 1st.  I just figure it gives us time to get some more prayers in.

It's been a while and now we're back...

Hello.  Were you starting to miss us?? I thought you might be so we decided to come back.  

Darla Jane had an appointment at the beginning of the month.  Dr. Mart wanted to do an echo on her, un-sedated.  Let's just say, it was UN-successful.  Which also pertained to the whole appointment.  Our little miss is realizing that she DOES NOT like to visit the Dr. or anything that has to do with the Dr.  

After the unsuccessful appointment and because of a concern we had with her tiring when exercising and getting a bit blue in the face we decided that a sedated echo was in order. Sedated echo happened, almost 2 weeks ago.  The echo looked good.  No sign that there was anything causing a problem. Dr. Mart asked us to take her blood oxygen level just after exerting herself, like after climbing the stairs.  I did. And I found the problem.  The average population has a blood oxygen level of 95-100.  Darla Jane's normal is close to 80-85.  When I tested her at the top of the stairs. 43.  43!  I freaked out. Called Nathan.  Asked him if I should have her go up the stairs and test it again. He told me no!  If that's what she was at we shouldn't be "testing her".  We decided to just have her climb the stairs once a day through the weekend and see what numbers we got.  So we did.  The highest she was after exertion was 54.  I called her Dr. last week and told him what we found.  He was concerned (and rightfully so!) and advised we get her into the cath lab within the next week or two.  His prediction was that she developed collateral veins.  Veins that form on their own and take the blood supply away from the places that it really needs to go.   In the lab they will put her under anesthesia, run catheters up her arteries to her heart, inject a dye so they can track where her blood is flowing... then hopefully see the problem and easily fix it.  We are scheduled for the cath lab on February 13th.  What a way to celebrate CHD awareness week right? She's excited about it....