Tuesday, July 29, 2014

Update on Ryan

As you might know, I was a little nervous about having this surgery done at this hospital because I had never been here before except for a clinic visit with the Geneticist and a modified barium swallow.  It felt like an old hospital and it's farther from home.  More than anything I just didn't have experience with it.  Change makes me nervous, especially when it comes to Ryan.

I can only think of one doctor that Ryan has seen that we did not like and he's no longer on our team. He might be a great doctor, but his style didn't work for us. We have had good experiences at both of the other hospitals we have stayed at.  We have had great experiences at the two other PICUs we have been in.  One even served me warm chocolate chip cookies before bed.  Who does that?  A great team at North Central Baptist Hospital that wasn't very busy one night.  It's comforting to recognize and be recognized by so many of the doctors when you arrive on the unit.  Obviously it's not preferred to be at the hospital, but if you're going to be there, it's nice to already know at least some of the team.

The team here, including the PICU doctor, Dr. Tong, and nurse Gina were simply amazing!  Dr. Tong spent more than 30 minutes with me when we first arrived in the PICU yesterday.  Dr. Tong took plenty of time double checking all of Ryan's meds and he was really appreciative that I brought a small bag of Ryan's meds with me to the hospital.  (It's actually a one day supply of meds that I take with me everywhere.  They are in prescription bottles and so the labels tell the doctors everything they need to know for ordering the correct meds for Ryan.)  I usually bring with me a list of his medical team, but in an effort to only bring one bag, I left that list yesterday. Oh, how I missed it!  Trying to remember everyone on his team is quite the challenge.  I won't forget it again.

The anesthesiologist also spent several minutes reviewing how things went in the OR.  Ryan needed assistance breathing following surgery yesterday but was able to move to room air fairly quickly. Talking was a lot of effort and seemed to be difficult for him yesterday.  This was probably due to the breathing tube they used during the surgery.  He was vocal very little compared to his usual level.

Ryan and I were able to get some rest last night.  However, he ran a fever of 101 something and his blood count percentages went from 36% to 27%.  His oxygen saturation levels also dropped into the 80's which isn't really that unusual for him.  The fever is not really an unexpected thing for someone who has had such a major surgery and they have started an antibiotic.   They have restarted iron for him due to the blood count changing.  They will be keeping an eye on these issues today.

They are also going to start introducing some foods.  They are going to start with 1/2 of his usual volume of food, but they are going to try Pedialyte first.  If he tolerates it well, then they will move to Neocate Jr, also just 1/2 of the usual volume.  By end of day, hopefully, we will be up to normal volume of food.

He is more alert today and seems comfortable until we rotate. Any movement of his lower body seems to make him nervous and a little uncomfortable.  We rotate him every 2 hours round the clock.  He is really enjoying listening to music from Pandora this morning and likes it when people wish him a Happy Birthday today.  When the Doctor asked if he could sing happy birthday to him, he said, "Yes!" (with his eyebrows) and smiled.  It's the only smile I've seen from him since Sunday.

So, happy 6th birthday to Ryan!  I cannot even imagine, nor would I want to imagine my life without him.  He has brought so many blessings and gifts to our family.  It is truly a joy to be his mom!

Monday, July 28, 2014

One Down

Ryan's surgery went better than expected today.  Thank you for all the love, good thoughts, support, and prayers!

They anticipated his surgery would take 4-5 hours, but they were done in just under 4 hours. They did not need to do the open reduction because their was no need to clean out the hip joint.  This is a great blessing.  Not only did it mean an easier surgery, but the open reduction is also what causes the stiffness post surgery so it should also mean an easier recovery.

Ryan felt frustrated by the anesthesia when he started to wake up and I suspect he probably felt a bit of frustration from having his arms contained by the spica cast and his left arm contained by the IV and his right arm contained by the blood pressure cuff.  But, ever since the disoriented feeling wore off, he has been resting quite comfortably, except for when we rotate him.

Every two hours, we have to rotate him a little to prevent swelling, skin issues, and blood from pooling.  I don't think he's really feeling pain from it, but he seems very nervous about us moving him.  I think I'd be nervous too.

He's talked to Daddy a few times today.  It is taking a lot of energy for him to make any sound at all.  The last time, after a few minutes, I told Dwight he was falling asleep cause he looked like he was, but he immediately started shaking his head no.  He just wanted Daddy to keep talking to him.

We will be spending the night in the Pediatric Intensive Care Unit (PICU) so they can keep Ryan monitored closely.   Please keep us in your prayers.  I have truly felt the strength of your love and support today.

Off to a Good Start

As an answer to prayers, everything has been going really well this morning.  Ryan woke up just before I needed to wake him.  Dropping David off at the airport for his competition this week went super smooth.  The van functioned well enough and we made it here.

It's always encouraging when the nursing staff is truly happy to hear that Dr. ____ is your doctor. This happened twice this morning in two different areas.  When the nurses were taking Ryan's vitals and history, the nurse Toija was so happy to hear that Dr. Benedict is Ryan's anesthesiologist.  She told me how good Dr. Benedict is and how well she takes care of her patients.  I could tell that it wasn't just a line she gave every Mom about every doctor.  It happened again when we went to the pediatric surgical holding area.  Our nurse Artie told us how skilled Dr. Magnabasco is.  Apparently, she treated her son about 12 years ago.

On the way up to the operating room, they took a quick set of x-rays.  Then in the holding area, Dr. Magnabasco came over and sat with me.  She showed me the x-rays and we discussed the plan.  She is hoping that she can do this surgery without the open reduction.  She said that it has a tendency to make kids stiff.

She does not anticipate needing any blood for this surgery, but will want to check for the next surgery.  (Did you know they no longer allow direct to donor transfusions?  She said they found it was detrimental.  Too many people were dishonest about their history just in order to be able to donate, or perhaps to hide their past from those who might ask why they weren't able to donate.   While I like the idea of a direct to donor transfusion, I certainly just want the very best for Ryan.  Hopefully, he won't need a transfusion at all, but if he does, we want it to be the healthiest option for him.)  Dr. Magnabasco and I also reviewed what she'll be doing today and, well, I just love the way she just treats me like a friend.  I love the way she sees Ryan's intelligence and talks to him.  I am 100% confident in her skills today, especially with the added strength and support of prayers.  :)

And, now the waiting begins... four to 5 hours.

Sunday, July 27, 2014

Ryan's Left Hip Surgery

Well, tomorrow is the day.  After a lot of prayers, a few delays, and several blessings, we are confident that even though this is going to be really hard, it is medically wise to do this surgery on Ryan.

They will be doing a femoral varus osteotomy with a hip open reduction and a salter osteotomy.  Ryan will then be put in a spica cast for 6-8 weeks.  What does all of that mean?

Well, the upper end of Ryan's thigh bone doesn't sit where it's supposed to be and thus he has a condition called, "hip dysplasia."  This can be a problem for several reasons:  hip dislocation, arthritis can develop, he can have severe pain, and if it stays out of place for a long time, it may become fixed and more difficult to move.

So, one part of the surgery, the femoral varus osteotomy will help by tipping the upper end of the thigh bone so that the ball points deeper into the socket.  According to the International Hip Dysplasia Institute, this will tip the hip into the socket and redirect the forces toward the middle of the socket instead of toward the outer edge of the socket.  In the picture below, you can see the before on the left and the after on the right.

Note the blue hardware.  Ouch.

The doctors will open up the hip joint and clear out any tissue that is keeping the head of Ryan's femur from going into the the hip socket, the acetabulum.  I believe this will be done through the anterior approach.  If you look at the picture below, the black dotted lines represent where they'll make the incisions.

The Salter Osteotomy means that Ryan's pelvic bone will be cut and the entire socket will be rotated into a better position on top of the femoral head after the hip is reduced into the socket.

Below, you can again see the before and after:

The "pins" that look more like really long nails to me make my heart just sink.  If you've ever had a bone drilled into, you'll know that this are not going to feel very good.

During all of this, it is common for children to need a blood transfusion due to blood loss.  And, it's my understanding the surgery will take about 2 hours.

Once they are all done and have him stitched back up, they will put Ryan in a spica cast.  If you want to see an interesting video about how they put on the spica cast, click here for a Spica Cast Video.   I hope they'll be more gentle with Ryan.

This has been a tough decision to make for Ryan.  It's hard to know how a typically developing child would respond to such a major surgery.  It's really scary to think about how Ryan will respond.  What if this slows his progress?  What if the pain is more than he can bear?  What if he just gets whiny because he has pain and doesn't know how to communicate it?  What if he can never ride a tricycle again?


But, the answer to the prayers has been that this is a medically wise decision.  We know that God has always taken care of us and anticipate He'll do the same for us.  We'd love to have your prayers for us, the surgeons, nurses, and especially Ryan.  We'll keep you posted on how things go in the morning.