San Diego Family Photographer- Katrinaelizabeth Photography

We’re HOME!
(I’ll post tomorrow, I’m exhausted)

Rylie has impressed me so much these past couple of days. She has had such an amazing tolerance for pain, and has been through more in her almost 4 years of life, than many of us will ever go through!

Today, I saw my little girl again. She has been getting through the long days, but hasn’t been grabbing ahold of things, like she usually does. Today, the smile returned, the appetite, and the giggles.

The day began early, and the doctors determined that she was ready to get her last chest tube pulled. So they loaded her up on morphine and another anti-anxiety med and she was out of it for a little while.

Around noon, the Calvary arrived… Rylie had wanted to take a little ride in her charriot (aka wagon) so Mike and i were with her in the playroom when the rest of the family arrived. The nurses made an exception and allowed all of the kids to come into the room at the same time. It made for very cramped quarters. At first Ry seemed a bit overwhelmed. Griffyn was screeching, and we were keeping him away from Rylie’s lines. Both Campbelle and Wesley were trying to show Rylie the gifts that they had picked out for her. She just stared in amazement. I was getting ready to cut the visit short, but then I saw it… the glimpse of my little girl. It began with a smack in the head for Wesley, with the new Barbie that she had received. Then the smile, followed by giggles, and even a bit of sass for the big brother. The fun continued with roll playing with dolls, with Campbelle. I left for a little while to keep Aunt Rita company while Griffyn slept, and when I came back, the room was packed with the family. The tv was blaring, and the boys managed to track down a PS2 and were engaged in the game. I realized that Rylie was more comfortable in this chaos, it is her “normal”.

She was looking a bit tired, so I dismissed Daddy to go back to our room at the Ronald McDonald House with all the other kids, so that she could rest. After their exit, Ry was sad, she even shed tears about their leaving.

The good news is, she can’t wait to jump back into the family, chaos and all. And at the rate she is going, she’ll be home before we know it.

Happy Independence Day. Without fireworks or the beach, it didn’t feel much like the Fourth of July, but it was a great day for Team V anyway.

Well we are so proud of our little Ry-Ry, she is making good progress each day. During the night she slept much better, waking only to go to the bathroom. The doctors did early rounds and gave orders to remove the pacing wires, and one of her chest tubes!!! Removing lines is exciting, because the doctors won’t remove things unless they are confident in her progress. But, with that said, removing lines is also apparently quite painful, so Ry was loaded up with morphine around mid-morning, and after the removal of her larger chest tube, she slept for quite a while.

We are still trying to coerce her to eat. She is not normally a big eater, but we are just trying to get her to eat a little bit at each meal. To complicate the matter she has been placed on a minimal-no fat diet, so her meal choices are few. She will be coming home on a restricted diet, so Mike and I will be getting a lesson from the dietician.

She got out of bed a few other times today to get around the unit. She opted to ride along in the wagon, as opposed to walking, her body is very weak and she has trouble supporting her body weight. The first ride was short and sweet, but we managed to get into the playroom for a couple of minutes. The second ride was much longer, I think we did about four laps around our Pod. She is watching a lot of tv, and we worked on some coloring today.

We have enjoyed video chats with the rest of the family each day. It is an opportunity to remind Rylie about our life beyond these walls. When I was leaving the room this morning to go and take a shower, she asked if she could come too. She is already wanting to go home. I am extremely grateful that she is progressing so well, if things continue along the current path, we should be home in less time than I had anticiapted!!

We continue to covet all of your prayers. We can feel your support, and the Lord continues to cover us each day.

My arms are lonesome for my little Griffers, but being away from Ry causes such great anxiety. I’m still working on the balance. I think the kids are going to come for a brief visit tomorrow. I’m looking forward to having everyone under the same roof, even if it’s only briefly!

Hug and kiss your loved ones tonight!! There are a zillion things to be thankful for. Just being together is a blessing.

Today,
Rylie Has had a lot of improvements.
A few of the highlights:
1. She began eating today
2. She moved out of intensive care and into critical care this afternoon
3. More tubes and wires were removed today
Tomorrow, we are looking forward to the chest tubes coming out. It is not easy to see her with wires and tubes attached to all the machines next to her bed. As wires, tubes and equipment are removed, we get closer to coming home. It feels like we are on target to get her back home soon.
Recovery at home will definitely be easier on us. It is a rough nights sleep sharing her room with the nurses coming in and out, and the constant beeping of alarms. On the other hand it’s also rough night sleep away from her room worrying about how she is doing. Six of this, half dozen of the other, I guess.
Bottom line; we are thrilled and blessed that she is on the road to recovery and will be back home living her life as a part of our big ol family.
Post by mike

Today has been another long day.  Especially after the night that Rylie and I had.  She was up almost every 30 min. all night, until 4:00am.  Needless to say, so was I.  I slept in the PICU with her last night, but I use the word “slept” generously.  When Rylie wasn’t sedated yesterday, she would wake in these fits, and flail about.  She had to be placed into arm braces to keep her from pulling on her lines.  She has a lot of lines!!  The most critical of which is placed directly into her heart.  She has pacing wires to keep her heart on track, which were used briefly yesterday.  She has 2 lines in her upper chest as well as in both arms.  I think that waking up to all of the ouchies yesterday, was quite a lot for a little 3 year old to handle!!  She was MAD!

Today, was a much calmer day.  We celebrated several successes.  When the doctors made their rounds this morning, at 7am, they were very pleased with her progress, and the fluid draining from her chest tubes.  They gave orders to remove a couple of her lines, and to wean her off of oxygen.  (She had come off of intubation and went onto a nasal canula of oxygen yesterday) When she came out of surgery she had oxygen saturation levels in the high 90%, but that has been dropping slowly.  Today, she has been saturating between 83% and 93%.

We have discovered that the morphine that Rylie has been on, has been causing some irritation and itching, so that is likely why she was so irritable yesterday.  Today we opted to try some Benedril, which has been working nicely.  We are trying to work out a balance for her pain, so that she is comfortable, but not over sedate her so that she can perform some basic functions, like drinking and peeing.  She had a folly bag, but they also removed that today.  So that has posed it’s own share of challenges, because Rylie does not want to pee into the diaper that they have her in.  Especially after spending the last couple of years training her to not pee in a diaper!  What can I say, even right after heart surgery, the girl has got spunk!

She has slept a lot today, and the doctors are talking about her eating solids in the next 12 or so hours.  If she tolerates low fat solids, without an increase in her fluid output, than they may be able to take out her chest tubes tomorrow. (This one will be HUGE)  If her fluid output does not decrease enough, than they may need to perform a catheterization.  This would be a bummer, because it would kind of push back her recovery a bit.

Mike and I are EXHAUSTED!  We have barely been able to keep up with the pace of life in the PICU.  It is amazing to me, how tired I feel after sitting around all day.  Even though I’m sitting, I’m constantly on alert.  I watch her monitors, I ask questions, I try to console and comfort Rylie, and I advocate.  There is always someone poking in, or checking something.  If there happens to be a bit of down time, I just want to rest my eyes… or eat something… or heaven forbid, use the bathroom…then one of her monitors starts to beep or a doctor needs to talk to me for a moment.  The days are incredibly long!

Tonight, I have Skyped with Rylie and Mike from home, and I will be sleeping solid (I hope) in my own bed.  Rylie is doing good, Daddy is running point, and I got to put Baby Grif to bed myself, after being separated from my little 1 year old for a day and a half.

We feel all of the prayer support… so keep it coming.  We have felt a peace going into this surgery, that I can honestly say, is beyond rationality.  It is the peace that comes from the Lord, and we know that he is wrapping and covering us and Rylie… at all times.  Keep the prayers a’ comin’!  Prayers of thankfulness for each of you, are coming your way, and a special prayer of thankfulness for my Aunt Rita, who has been holding down the fort at home with Griffyn, Campbelle, and Wesley!

I leave you with a pre-op picture of my smiling little girl in her rocket ship hospital gown, and a sleeping princess in her mother’s arms today, post-op!