Thursday, July 26, 2012

The clipping of tendons pt. 2

Well where we last left off was Rylan, Steven and I were waiting for Dr. Valencia to arrive. Around 1145 he did!

He went over the entire surgery with us as far as what he will be looking for and what he is going to do, then what to expect. Basically they were clipping the main tendons in Rylan's legs, starting in the quads then behind the knees and finishing at the ankles.
Dr. Valencia's marks on where he's starting

Once everything was made clear , the Anesthesia docs came in and told us what they decided was the best process for Rylan.

 Our big concern with Rylan is every time he receives general anesthesia there is ALWAYS an issue with his breathing afterward. He has a high dependency on oxygen and has atelectasis.

Being school is starting around the corner I REALLY didnt want to weaken his lungs anymore then they already are, we opted to take a different route for the surgery.

What we all decided on what giving Rylan a drug called ketamine through his g-tube. apparently the affect from this was going to give him a loopy dreamy feel. I felt bad because when this started to kick in Rylan was hilarious and I couldn't stop laughing at him.
Rylan on his drugs
Once the ketamine has kicked in they let us know they will be sticking a catheter in,

putting the epidural in his back and sticking the IV in. They were not going to turn the epidural on until after the surgery so they went ahead and gave him a spinal on top of everything else.

Off they went with my little boy.

Now this is the first time we have been at UMC for a surgery. I have to say they were phenomenal. There was a nurse assisting with the surgery and would call periodically while Rylan was in there to let us know how he was doing and where he was at, then they called to let us know he was finished and how he did. I dont wanna bad mouth TMC but honestly this is something that Steven and I loved, yet never had at TMC.

After a couple hours we were called back to see Rylan. I personally thought he was going to be awake and was a little surprised he wasnt. The nurse tending to Rylan told us it was because they gave him enough drugs to last for a 4 hour surgery , the surgery went quicker then expected. So we sat and waited for everything to wear off.

As he was resting they started to notice that his blood pressure was low. The nurse was concerned that as the spinal started to wear off he was going to need the epidural which was going to lower his blood pressure even more. So she called the anesthesia doc back over. He wasnt liking the blood pressure either so they gave him a shot of ephedrine. Which worked instantly.

at about the 2 and a half hour mark he was slowly starting to wake up. To help him out Steven suggested that we use the one thing that is GUARANTEED  to wake him from ANY rest no matter how deep....goofy goober rock. Which was a success.

When we finally got those big blue eyes opened we went ahead and gave him all the Spongebob his little heart desired. 

His recovery nurse (who was by his side the ENTIRE time....another plus of UMC) kept checking his toes  for movement. We had to be sure the spinal was wearing off. When we finally did get movement in his toes they started the epidural.  By this time we were nearing hour 4 in recovery and still had to be there 45 mins to make sure it was going to work.

It was starting to get super late by this time so Steven and I ran home, I stayed home while Steven ran back up to stay with Rylan.  My mom was there sitting with him during this time.

Flash forward to this morning.

I arrive at the hospital early so Steven and I could have breakfast together, Rylan was laying in bed fussing and dripping sweat.

Needless to say my mommy instincts kicked in.

I asked to see the nurse and figure out why he is in pain and then I ask for a sponge bath for him.

The nurse and the doctor both came in and repositioned Rylan. He seemed to be content.

which leaves us to where we are now....and I honestly have to say this is gonna be a tough recovery for the both of us!

Wednesday, July 25, 2012

The clipping of tendons part 1

5 am the buzzing of an alarm rings in Steven and my ears. So we dreadfully get up and get moving being Rylan had to be at the hospital in a couple hours.

We run through the motions, I shower, he makes coffee and smokes. Then I bathe Rylan and Steven gets himself ready, We finish up with Rylan and get ready to leave.

We arrive at The University of Arizona Medical Center around 7:15. We were confirmed his surgery was at 9 am. I go to the desk sign him in and then we get taken to registeration.

Then a fire alarm goes off.....So out the door we go to just turn around and go back in. Apparently security cleared we could stay. This is our first time at UMC for surgery so we were not sure what to expect.

The PCT pulls us back to the bed waiting for him. At first glance it was a touching set up. They had it ready for him with alittle award on the pillow.  We put Rylan on the bed and start going through the motions.

Steven gets Rylan in his hospital gown and I answer the nurses questions. We wait and Dr. Valencia's surgical assistant comes and talks to us, then the anesthesia docs talk to us. Everyone seemed to be on track.

Thats when the nurse walked in. Dr. Valencia wasn't going to be in till 12. Here we are at 900 and the doctor wasnt going to be until 12. I instantly became infuriated. Thank goodness Steven was there to calm me down.

I call Dr. Valencias office to find out what is going on....and they were clueless and rude to say the least. So I asked Dr. Valencia to call me.

When he did we all came to the conclusion that there was some "miscommunication". Seriously is it too much to ask to have ONE of Rylan's surgeries go on time? As you remember his mickey button surgery went the same way

Rylan starts to become fussy. So I call the clinic Dr. Valencia is at and ask if he is running on time. Of course nobody could give me a straight answer so I finally had it.

Now here we are still waiting. My temper is getting worse with each passing min.

Thursday, July 19, 2012

Tendon clipping

7 days and counting......7 long days.

My little boy is going under the knife AGAIN! Even though I know its a long term investment having him go through this, I cant shake away my nerves.

  Rylan's lungs have been sooo good. I guess alot of the nervousness comes from the fact I feel like we are weakening his lungs with this surgery and then he starts school.  I shouldn't lie and say nervousness.......Im flat out SCARED.

Your probably wondering what he is going into surgery for..... He is going in to get his tendons clipped in his legs. Due to his CP he has developed contractors in his leg muscles. meaning he cannot stretch his leg out straight due to the muscles being so tight. As Rylan's bones grow......his muscles wont. Which doesn't give his bones a lot of room to stretch out. As this happens the bones are at a high risk of becoming contracted themselves. Once this happens....there is nothing that can be done.

So I opted to have this surgery done sooner then later.

I have really bad anxiety which got worse when I was told we needed to come up with a game plan for Rylan because they weren't to confident how many more respiratory viruses his lungs can handle. 

So here I am trying not to stress.......and hitting my E-cigarette like crazy....and now realizing I am going to need more juice......

So if I could get some prayers out there that his lungs will stay strong and he will power through everything like a champ and that he will breeze through the respiratory season with ease. Never in my life Have i dreaded the upcoming holiday season as much as I do now.