Here is a video all about Ryker's story up to the day we did our Family
pictures on July 11th. I have been working this video for over a month
now & I am SO excited to finally get to share it with everyone!
EnJoY! :)
Tuesday, August 14, 2012
Sunday, August 12, 2012
Long busy week for Ryker
The last week has been an extremely eventful & sad week for my sweet little Ryker! He has been through so much!
Starting Monday we found out that he had been in & out of flutter for days, which causes him a lot of pain & stress, along with hypo-tension & low O2 saturations. So needless to say this took a tole on my sweet baby's body.
Then Tuesday while doing a sedated echo they found that he had an efusion (a pocket of fluid) under his left lung, so from there they had to heavily sedate, paralyze & intubate him to be able to insert a cest tube to drain the fluid, this procedure went very well & has drained quite a bit of fluid. They have tested the fluid & still have no reason as to why the fluid was there, thank goodness it is not cylis (fatty fluid caused by the body rejecting the intake of fats in the digestion) they think it may have something to do with him being in flutter so much over the last few days.
So, from there while he was already intubated the Doctors decided to do a CT Scan on his abdomen to get a closer look at his intestines one last time to be absolutely sure that he didn't have any problems that needed fixing before they really tried feeding him again. They found what they felt was something called "Intermitten Volvulous" of the GI Tract, which basically means that his intestines will randomly without any warning turn on themselves & cause him extreme pain. So needless to say we met with Dr. Smithers (The General Surgeon that has followed Ryker for awhile) once again about possibly doing a procedure on his tummy.
On Wednesday- Dr. Smither's decided he needed another "Upper GI" test done done to help him to make a final decision on what Ryker needs. Then with the help of Dr. DelNido, Dr. Marx, Dr. Keir (One of Ryker's ICU Attendings), General Surgery, Jason & I we came to a decision of it being best to put Ryker back into the Operating Room to make sure any belly problems he was having are taken care of.
Thursday at noon they came & took Ryker to go back to the Operating Room. I was sick...the anxiety & tears hit me so hard! Although I knew that intestinal surgery couldn't compare to any of the 4 other procedures he has already had done, I just hated the idea of him going back there AGAIN! Within an hour & a half the Liazon nurse (the nurse that is in charge of keeping the parents updated during surgery) called and asked that Jason & I hurry back to the hospital (We had just gone across the street to get some lunch) So we rushed back & for reasons that are still unknown Ryker was not staying stable in the O.R his O2 sats & blood pressure had been dropping & he spiked a fever. So needless to say they were unable to operate. At this time they kept him completely paralyzed so they were able to get an arterial line placed to hopefully better prepare him for surgery tomorrow.
On Friday morning Ryker was doing great, so they felt comfortable enough to take him back to the O.R When they came to get him I was greeted by an Anesthesiologist named Al, apparently he is one of the top Cardiac Anesthesiologist in the hospital & Dr. DelNido himself requested that not only Al be the one that takes Ryker down for his surgery, but that he stays with Ryker & monitors him for the entire operation. I love to hear how much Dr. DelNido cares about my baby boy!
The procedure only took a little over two hours, then we met with Dr. Smithers. He said that surprisingly enough Ryker's intestines were malrotated but the malrotation that Ryker has works for him & his body & needs no cutting or adjusting. He has no intermittent volvulous like they had thought & no risk of having it happen either. All Ryker's intestines are held up & supported by the correct muscles & he has no problem there. However they did do a biopsy of his colon to check for any motility issues he might be having, which we haven't heard back about yet. They removed Ryker's appendix & placed a G-Tube, but they couldn't place a regular G-Tube because they found that Ryker has an extremely small stomach (& I mean small!) They couldn't even put a small balloon on the inside to support the tube because they were worried if they did it would take up the majority of his stomach. So my thoughts are that his itty-bitty stomach could be the source for some of his pain & intolerance for feeds.
When we came back up to see him he looked great!! By far better than he has ever looked after any of his 5 surgeries, this operation obviously wasn't cardiac surgery like the others, but still a very serious operation! I am so proud of my tough baby boy!
Starting Monday we found out that he had been in & out of flutter for days, which causes him a lot of pain & stress, along with hypo-tension & low O2 saturations. So needless to say this took a tole on my sweet baby's body.
Then Tuesday while doing a sedated echo they found that he had an efusion (a pocket of fluid) under his left lung, so from there they had to heavily sedate, paralyze & intubate him to be able to insert a cest tube to drain the fluid, this procedure went very well & has drained quite a bit of fluid. They have tested the fluid & still have no reason as to why the fluid was there, thank goodness it is not cylis (fatty fluid caused by the body rejecting the intake of fats in the digestion) they think it may have something to do with him being in flutter so much over the last few days.
So, from there while he was already intubated the Doctors decided to do a CT Scan on his abdomen to get a closer look at his intestines one last time to be absolutely sure that he didn't have any problems that needed fixing before they really tried feeding him again. They found what they felt was something called "Intermitten Volvulous" of the GI Tract, which basically means that his intestines will randomly without any warning turn on themselves & cause him extreme pain. So needless to say we met with Dr. Smithers (The General Surgeon that has followed Ryker for awhile) once again about possibly doing a procedure on his tummy.
On Wednesday- Dr. Smither's decided he needed another "Upper GI" test done done to help him to make a final decision on what Ryker needs. Then with the help of Dr. DelNido, Dr. Marx, Dr. Keir (One of Ryker's ICU Attendings), General Surgery, Jason & I we came to a decision of it being best to put Ryker back into the Operating Room to make sure any belly problems he was having are taken care of.
Thursday at noon they came & took Ryker to go back to the Operating Room. I was sick...the anxiety & tears hit me so hard! Although I knew that intestinal surgery couldn't compare to any of the 4 other procedures he has already had done, I just hated the idea of him going back there AGAIN! Within an hour & a half the Liazon nurse (the nurse that is in charge of keeping the parents updated during surgery) called and asked that Jason & I hurry back to the hospital (We had just gone across the street to get some lunch) So we rushed back & for reasons that are still unknown Ryker was not staying stable in the O.R his O2 sats & blood pressure had been dropping & he spiked a fever. So needless to say they were unable to operate. At this time they kept him completely paralyzed so they were able to get an arterial line placed to hopefully better prepare him for surgery tomorrow.
On Friday morning Ryker was doing great, so they felt comfortable enough to take him back to the O.R When they came to get him I was greeted by an Anesthesiologist named Al, apparently he is one of the top Cardiac Anesthesiologist in the hospital & Dr. DelNido himself requested that not only Al be the one that takes Ryker down for his surgery, but that he stays with Ryker & monitors him for the entire operation. I love to hear how much Dr. DelNido cares about my baby boy!
The procedure only took a little over two hours, then we met with Dr. Smithers. He said that surprisingly enough Ryker's intestines were malrotated but the malrotation that Ryker has works for him & his body & needs no cutting or adjusting. He has no intermittent volvulous like they had thought & no risk of having it happen either. All Ryker's intestines are held up & supported by the correct muscles & he has no problem there. However they did do a biopsy of his colon to check for any motility issues he might be having, which we haven't heard back about yet. They removed Ryker's appendix & placed a G-Tube, but they couldn't place a regular G-Tube because they found that Ryker has an extremely small stomach (& I mean small!) They couldn't even put a small balloon on the inside to support the tube because they were worried if they did it would take up the majority of his stomach. So my thoughts are that his itty-bitty stomach could be the source for some of his pain & intolerance for feeds.
When we came back up to see him he looked great!! By far better than he has ever looked after any of his 5 surgeries, this operation obviously wasn't cardiac surgery like the others, but still a very serious operation! I am so proud of my tough baby boy!
 |
| 8/8/2012- My beautiful boy sleeping peacefully before another big surgery day tomorrow....I sit here at almost 3am just watching him breathe & can't help but become overwhelmed with emotions over how unbelievably grateful I am for all I have!! |
 |
| 8/11/2012- My beautiful boy with no tubes or tape on his face!! :) This is very temporary, but I had to share because I love it so much! First time since he was only 2 weeks old that I get to see his whole face. They are just changing the tape for his ventilator tube before they wake him up from his paralytic. Beautiful boy!!! |
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