Wednesday, April 25, 2012

Catching up

It has been such a long time since my last post.  We have had a lot going on lately and I have just not felt much like updating.  Most of this update will be pictures, but I also wanted to share the excellent weight gain Hope had today.  When we were downtown at the Clinic, Hope weighed 10.40 kilos...this is 22 pounds 14.8 close to 23 pounds.  I was hoping she would be at 23 pounds when we went down there, but oh least she is gaining.  Today, the little princess is up to 10.70 kilos (at her scale in Medina).  She finally hit the 23 pound mark and actually gained almost a whole pound.  She is well on her way to my goal of getting her to 25 pounds by her third birthday.  I just pray that she doesn't lose a ton of weight when she is in for her cath.  She hates eating at home and I am sure it will be worse in the hospital. come the pictures!

My girls on Easter
Gigi (my mom) reading to all the kids on Easter
Mama (Jerry's mom) and the girls on Easter (yes, Hope had two Easter dresses)
Hunting for Easter eggs at Jerome's house
Our first bowling trip...we all had a blast!
We had a great day at the Cleveland Aquarium
The girls had a great time at the Aquarium!
On the Rapid...our first trip on the train.
This was on the Rapid...before it got packed with people!
We had a great spring break and it was even better because we had Destiny with us for the whole week.  It is really hard having her so far away (she moved to Kentucky with her mom) and only seeing her on breaks. 

Thursday, April 5, 2012

We have a plan

I got a call from Dr. Prieto with a plan for the high BUN.  We will be slowly weaning Hope from her Enalpril over the next week.  Enalpril is taken by a lot of heart babies to help their heart function.  Hope's heart is functioning really well and we have not increased her Enalpril dose since she started taking it.  Her doctor feels that it probably isn't helping with her function because of the really low dose that she is on.  We are also going to try and decrease the amount of protein she eats and increase the fat...again.  This is actually really hard to do because Hope loves hot dogs, chicken, and fish.  We are going to have to get creative and start adding more oil and fatty stuff to her diet.  She hardly eats as it is, so this is going to make meal time even harder than it already is...pray for my patience and sanity.

We will be going for blood work and to see the nephrologist in about a month to check her BUN and Creatnine again.  We really want/need both numbers to go down.  Otherwise, it will be a really good indicator that her kidneys are not functioning very well.  This will not be good news.  If they are still high, we will be going in the day before her cath for IV hydration.  The contrast they use in the cath lab can hurt the kidney's so they want to make sure that if the function is decreasing, we try to regulate that by heading in a day early and making sure she is really hydrated.  I am hoping it does not come to this, but we will do it to make sure she has a safe cath.

Easter is coming up quickly and we are all really excited.  Destiny gets to come and spend Easter with us...she moved to Kentucky with her mom and we have missed her so much.  Everyone is really excited to see her and have her spend Easter with the family.  My brother's birthday is Easter Sunday, so we will have lots to celebrate on Sunday.  We wish you all the Happiest Easter!

Monday, April 2, 2012

The Good, The Bad, and The Unknown

The Good

Hope was awesome at all of her appointments today.  I mean...better than she has ever been.  She didn't throw up on anyone, she hardly cried at all, and she laid still for the entire 45 minute echo.  I told the echo tech to keep taking whatever pictures she wanted because Hope was being so good.  This is the same little girl that is usually heard screaming all the way into the waiting room.  She has thrown up on countless people more times than I can count.  Her weight is really good (she is finally on the charts scoring a 1.07%...WOOHOO).  Her sats were all over the place today.  When she started they were in the 70s (too low).  Then we moved the little thingy (you all know what I mean) to her hand and her sats went to 90 (too high).  Finally, when she was sleeping in the waiting room, they were just right at 84.  Today...AMAZING!!!

The Bad

OK...not necessarily bad because it was expected.  Hope will be having a cath this summer.  She has not been in the hospital for almost 2 years.  Actually...on May 12th it will be two years.  That is the last time she spent the night in the hospital and that was her last cath where they ballooned open her left pulmonary artery.  The good news with the echo pictures they took today is that they got good pictures of her artery and it looks like it is not growing like they want it to.  It also appears that she has some collaterals growing from her aorta and circumventing the pulmonary artery.  This causes her sats to stay good, but it also doesn't help the pulmonary artery grow because the blood is not all going through the pulmonary artery, but through these collaterals.  So...we head to the cath lab sometime this summer (no hurry and we will definitely be bumped for any emergent case).  Dr. Prieto will balloon her pulmonary artery and may put in a stent.  She will also coil off some of the collaterals.  I am guessing her sats will be lower after the cath until the pulmonary artery gets back into the groove of pumping blood like it is supposed to (this is my thought and I forgot to ask Dr. I have no idea if it is true). 

The Unknown

I am not joking...I know absolutely nothing about kidney disease, how the kidney's function, or what it really means for Hope.  Her BUN today was 42...really super, duper high.  I don't really know what this means or if it is bad, but typically anything that is twice what the normal is bad.  I haven't heard from the nephrologist, but I am expecting a call tomorrow.  I really hope it was a fluke and doesn't really mean anything too bad.  Her createnine  was normal and I think that is good.  It is the other number they look at to determine how bad her kidney is functioning.  I will update more when I hear something, but prayers are always welcome and appreciated.