Thursday, June 28, 2012

Cath and Other Stuff

The day before we went to the hospital.
I know...I have been a horrible blogger.  I did really good keeping up with facebook while we were in the hospital, but I want to catch everyone up on what has been going on in our lives.

After they did the IV...just hanging out in her big bed.
First...we are home and all went better than I expected.  We did spend Monday night in the hospital getting IV fluids.  It really wasn't too bad but the lack of sleep was hard for me.  Hope and daddy managed to get some sleep that night, but I am a light sleeper and really need a real bed to sleep.  We took Hope down to the new cath lab, which is really nice, around 9am.  She got some Versed through her IV and was so cute for everyone...laughing and smiling and entertaining all the doctors.  I wish I had remembered my video camera because it was really super cute. 

After the cath...laying still for 6 hours.  She was very puffy from all the fluids, but peed it all out before we left.
We had a pre-cath huddle with Dr. Prieto, anesthesia, the fellows, and everyone else that was going to be helping with the cath.  Dr. Prieto discussed the hope of getting some arterial access through her femoral artery to check pressures and possibly coil off some collaterals.  Her femoral arteries were occluded thanks to another hospital leaving IVs in there too long (ughhh).  Anyway...they were able to get access and that was great news.  She did dilate (balloon) her left pulmonary artery to 4 1/2 mm.  It is still very small, but it is now the same at all parts of the artery.  The whole cath took about 1/2 hour after they got access and I love it!  She was done around 10:30 and in recovery at 11:00.  Of course I pestered Dr. Prieto into trying to get us out and home that night.  Usually when they do an intervention (like the dilation), they like to have the little ones stay the night.  We try to get out of the hospital as soon as possible...that is where all the sick people are and the longer you are there...the better the chance of you or your little one catching something really icky.  I also know that Hope recovers MUCH better at home.  So, when we got back to our penthouse suite (which we really did get a nice room after spending the night in the pod) we put on the board that we were working on getting discharged. 

Packed and ready to go home.  She is still a little puffy in this picture, but she was so ready to go home.
The nurse we had was pretty good, but I really pushed to make sure we had an echo done, any bloodwork that was needed, all paperwork, and meetings with Dr. Prieto and Dr. Kwon.  Hope had to lay flat for 6 hours, so we knew the best we could hope for was 6pm.  Although, that really wasn't anticipated because she had to walk around, get all her bandages changed, her IV taken out, and eat and drink something.  Amazingly, we were outta there at 8pm.  It was wonderful being able to go home and sleep and Hope was so excited to see GiGi (my mom), Destiny, Jerry and Paul.  She was laughing and smiling as soon as pulled in the driveway.
Yay...chicken nuggets when we got home.  Yes...the stickers were left on for the night.  We didn't feel the need to take them off and put her in any more pain that night.  She did get her appetite (what little appetite she has) back when we got home!

Sunday, June 24, 2012

The Cath Plan

I took Hope on Monday, June 18th to get her blood drawn.  We went to Medina Hospital rather than all the way downtown...which was great.  I pumped her full of water all morning to make the blood draw easier.  We got a really good phlebotomist at the hospital and it only took her one stick to get the blood flowing.  I was so relieved because we love John (the phlebotomist downtown) and I honestly didn't think anyone else would be as good.  Hope did cry the minute the lady started wiping the alcohol and all through the blood draw, but she didn't throw up at all...this is good news for Hope.

We waited and waited to get a plan.  Finally on Friday I decided to call.  It seems Dr. Prieto was on vacation all week.  Ughh...I worried that we wouldn't have a plan until Monday.  I hate not having a plan. of the great nurses...called back and said she talked to Dr. Kwon (Hope's nephrologist...kidney doctor) and he wanted her admitted on Monday for fluids.  I was kind of disappointed, but I was also so happy because her blood work came back perfect.  He is only admitting her because her kidneys' are doing really well and he wants to make sure nothing they do in the cath lab (the contrast dye is harsh on the kidneys) affect her kidney function.  So...we head in on Monday afternoon, get an IV and start fluids to make sure she is well hydrated.

Hope will be having a diagnostic cath as well as some intervention.  She will be having her left pulmonary artery ballooned because it is narrowing again.  The narrowing is causing her to grow collateral vessels to make sure her body receives enough blood.  They will probably coil off the collateral vessels in the cath lab.  She has never had that done, so I am a little nervous.  Caths worry me a lot...she will be put to sleep and intubated and that always carries risk.  

Tuesday, June 12, 2012

It was like the 1st day of school

Yesterday Hope started school two days a week.  She goes to the achievement center to a classroom instead of having her physical and speech therapy at home.  Both of her therapists thought it would be a good idea to get her in a classroom and help her develop some social skills while getting the therapies she needs.  It did take some convincing on their part to get me to agree because I really liked the convenience of having her therapy done at home.  I was also worried about how she would do because she is not real great when I take her to the sitter or even have a relative babysit her.

She did great!  No crying when I left, but she was really happy to see me when I picked her up.  She talked like crazy to the speech therapist...that is amazing because she usually only talks to me or close family.  She even ate snacks with the group and I am thrilled about that!  I am hoping this will open her up a little and give her some confidence in talking and around other kids.