Almost But Not Quite Yet

While Ryan was undergoing her sedated echo I busied myself with packing, fueling up my rig, and waiting for the discharge papers.  This all came to a screeching halt once the results of the echo came back. Apparently in addition to her high blood pressure, Ryan has decreased ventricular function.  As I understand it - her ''squeeze'' isn't exactly on.  Most likely this is due to her being on the by pass machine and the fact that her heart had to work so hard for so long to keep up with the blood flow.  Since the repair her heart doesn't have near the amount of blood to pump and it is figuring out how to slow down and it might take some time for everything to function smoothly.  So, the docs have given her a new med and they need to evaluate the response her body has to it and then adjust accordingly.  Was I disappointed?  A bit... I was ready to hit the road -  I miss my girls and want to be with them. But the reason we are here is for Ryan to get her health in the best position possible for a positive outcome and I appreciate the caution and thoroughness the doctors are using.  Our stay here has been good - the nursing staff has been very caring, personable and thoughtful and I've so enjoyed the one-on-one with Ryan . She has a great sense of humor and is such a lovey little thing. After the sedation wore off Ryan had another great day with lots of smiles and giggles, a couple of rides in her wagon and playing with her balloons.  There has also been a  shift in her diet and is now mainly consuming steamed rice and ice cream.  Whatever it takes! Here's to another night of constantly interrupted sleep, beeping monitors and the constant glow of  florescent lighting.

Recovery

Ryan is doing fantastic!  Friday evening  she had her catheter removed, two of the four IVs removed and was transferred from the picu to the third floor. She has spent much of the time being rocked by either myself or Lynn and snoozing. Today was another big day.  Ryan had the three pacer wires that were sewn into her chest removed as well as a third IV and last but certainly not least she had her chest tube removed.  Lynn chose to leave the room, but I needed to be there to hold her hand and comfort her.  Thankfully she was given  some morphine and when the tube was pulled out of her chest....it was nearly a foot long. I had no idea of the length and was a bit startled - older patients say it is the chest tubes that generate the most pain -I can see why!  Poor Jessica had three of them and I certainly didn't fully appreciate what she was going through at the time.  With much of the apparatus that was holding Ryan down removed, she was able to take a couple of rides around the hospital in a wagon, go outside for some fresh air, and she also had a bath.  She was in such good spirits she initiated a rousing game of ''toss the washcloth'' with her nurse and has been giving us lots of smiles.  Not to say she isn't feisty;  this evening with her dose of oral pain meds she had two of us holding her down, one administering the dose and she -bless her heart- was spitting furiously.  It took two doses and I'm hoping it was enough. 

A dear friend of mine lives near by in the fantastic neighborhood of Sugar House and lent us her place to crash at -which is so incredibly nice (no hotel rooms!)  she is working for several weeks back east this summer and we have the place to ourselves.  Lynn and I have been taking ''shifts'' with me staying the night with Ryan and then taking a long nap during the day when he comes to ''relieve'' me.  We spend the late afternoon/evenings together with Pip and it's working well.

I couldn't be more tickled with Ryan's progress - she truly is unbelievable.   The cardiac team is pleased thus far, however, they are concerned with her weight and dared to call Ryan ''scrawny''.  I prefer to think of her as ''dainty''.  Anyone and everyone has given us an (unsolicited) opinion on her weight and growth etc.  I understand it is of concern.  But she's had a huge hole in her heart that burned up a ton of calories.  She is from an impoverished area, in orphanage and foster care and has had her whole world turn upside down in the past three months.AND she is a picky eater.  Given all that... she has gained nearly 1.5 pounds with two hospital stays. We are working closely with our pediatrician and cardiologist at home  (who I trust). If she is still struggling in six months, we'll reevaluate. But until then...Tomorrow she is scheduled for an sedated echo and another chest x-ray providing a solid baseline to work from and to know where Ryan is at in her progress.  Hopefully we will be home soon!

In and Out of Surgery!

My sweet pea is out of surgery and doing well!!!

Ryan had no idea what was coming, but sitting on the floor in the pre-op waiting room with the anti-anxiety meds kicking in and blowing bubbles with mom, she couldn't have cared less.  Rumor has it she was extremely charming in the operating room (big shocker I know).  Before they sedated Ryan she was throwing her washcloth on the floor and exclaiming ''uh-oh!" then flashing her scrunchy face at everyone in the room.  Her surgeon has been AMAZING...he is so kind, caring, sincere. He said he couldn't be happier with how well she did in surgery, the hole in her heart is patched (he gave me the swatch remnant) and expects her recovery to go well. 

Ryan is  in the PICU (currently shift change and families are booted for an hour) is on oxygen to help with the hyper-tension and is also on some high blood pressure meds. She is running a low fever which I'm told is common after surgery. The docs are managing her pain with morphine and Tylenol.  She has been in and out of sleep, is quite scared, has tried to climb out of her crib twice and finally got to drink an ounce of water.

It's so hard to see my sweet girl scared and in pain and know there is nothing I can do to make it better.  For a mom that's the worst feeling in the world. AND I'm feeling relieved that she is on this side of things. The next couple of days are going to be long but I know it has to be done, that  it's just a moment of time which will soon pass and will be worth all the pain and struggle.

From the bottom of my heart - THANK YOU for all the prayers and emails and phone calls. Will check in again tomorrow!

Good News!!!

Ryan did well during the catheter procedure and was very mellow during recovery. The surgeon allowed her to leave the hospital and we are back here at headquarters. The entry site in her groin is extremely bruised, other than that, she is cruising around causing trouble as usual!

The results of the catheter gave us the news we wanted to hear....it's a go for surgery on Thursday morning!  The hole in her heart is located under her aortic valve and is approximately the size of a quarter.  Although this is considered a large VSD it is repairable.  Why it was so concerning for us was the amount of time her body has lived with the defect.  Typically (simplified) these defects are repaired here in the U.S. at around six months of age.  Since Ryan's has not been repaired her lungs have been flooded with blood and trying to keep up with the massive flow the lung arteries become muscular and after a period of time the damage is irreversible and therefore the defect is unrepairable.  The pressures in her heart and lungs looked fantastic and without question she can proceed with surgery. 

Ryan needs to be at the hospital at 7:00 a.m., surgery scheduled to begin at 8:30.

Today is a recovery day, and we are just going to lay low, maybe go for a walk or a drive and enjoy our time together.

Moving Forward

We will be on the road to Salt Lake in a few hours. Tomorrow Ryan will meet with the cardiologist, Tuesday she'll have the heart catheter procedure, Wednesday the cardiology team will meet to review the information and determine if Ryan is a candidate for surgery and we have a surgery slot scheduled for Thursday morning.   

Linda and Leroy are here once more to watch Jess and Kate and seem to have lots of fun planned.  Kate has been a bit blue the last couple of days and keeps telling me she'll miss me when we are gone.  The feeling is mutual.

It is strange to feel both trepidation and eagerness for the upcoming week.  Please keep our little punkin in your prayers, and perhaps, if you could, one for this mama's heart as well.  Thanks and I'll keep you posted.