Caden’s Page

The bleeding continued throughout the night.  The bleeding is very slow, but concerning enough for the doctor to want to keep Caden one  more day.  Caden’s attending ENT doctor will not be in the hospital until later today so he may change the plan once he sees Caden in person.  Right now I feel better about staying here until the bleeding stops.  I have messed up quite a few wash cloths cleaning Caden up in the past twelve hours.  Caden is really doing pretty well otherwise.  He got up at about 7am and have been playing and watching a video.

The doctor (resident) who saw Caden this morning did have me sign a consent form in the event they see the need to take Caden back into surgery in rapid fashion.  They course of action would be to find and stop the source of bleeding.  They don’t feel like a return to surgery will be needed, but they want all the formalities out of the way just in case.   This resident was in the OR with Caden yesterday so he is up to speed on Caden’s case.

Please pray that Caden will heal without any surgical intervention.  Also pray for his comfort and peace of mind.  I will continue to post updates and send emails as we move forward.

It was an eventfully day here at MUSC. I wrote a few emails today to those who subscribe to the email updates for Caden’s Page. I was unable to post directly to the blog for a while. Below is the majority of what I wrote today. Scroll to the bottom of this post for the latest new of the night.

Email sent at 2:24pm – Slow Progress

“Things are moving very slow. The surgery staff is very busy today. Caden was not taken back to the OR until 12:45. The surgery is expected to take up to 4 hours. I will post an update after the surgery is complete.

One of the doctors just came out to tell us that things are going good. The botox is complete and they are working on the sphincterplasty now.”

Email sent at 4:51pm – In Recovery

“We are with Caden in recovery. He came out of sugery at about 3:30. He is doing okay and sleeping right now with the help of some mophine.

He woke up for a little while and started coughing which caused him to bleed. This was scary. The nurse thought Sherry was going to pass out. I thought I was too. They called for the doctor while I used the suction to help clear the blood from Caden’s mouth. The doctor came to look Caden over and said everything was going to be okay. It was likely a small vessel that burst. Once it was over the amount of blood in the suction canister was less than what it looked like coming out of Caden’s mouth.

We are in a very sticky spot with the suctioning. We have to be very careful not to damage the work that was done today. At the same time Caden has to be able to breathe. The work done today is not expected to help swallowing for a couple weeks so the need for suctioning secretions will likely continue at least until then.

We will be transferred to a regular room soon. The doctor wants keep an eye on Caden a little while longer here in recovery. There is still a little bit of bleeding.

Your prayers are felt. Please continue to lift Caden up in your prayers.”

Email sent at 8:00pm – In a room

“We are settled into a room. We are in 834 of the Children’s Hospital. Caden is sleeping good. He woke up a played for a few minutes with one of his musical toys.

He is still on IV fluids and a little bit of blow by oxygen. The oxygen will probably go away soon since Caden’s O2 saturation is finally hanging in the low 90’s when he is off of it for trial periods. The IV will be shut down later tonight once we get through a full tube feed. We started doing the tube feed at 7pm.

The plan is for Caden to be discharged tomorrow morning. I will stay home Friday even if we do go home tomorrow just to help out with Caden. I expect him to be pretty clingy for a couple of days.

Please add the Patterson family to your prayer list. They have a one week old little girl who had heart surgery today. The dad served in the middle east with one of my sister’s friends. The little girl was flown to MUSC from Columbia shortly after birth this past week. I tried to locate the family earlier this evening to offer them prayer and encouragement to have hope in the Lord. They were not in the waiting area and must have been in the ICU with their little girl.

Thank you for your continued prayers for our family.”

6/28/2007 00:30 – Sleeping sound

Things ahve settled down, but not without a little more excitement. Caden went to sleep at about 8:00pm and slept sound until about 11:45pm. The nurse came in with a dose of pain medicine because I told them I wanted him to get the doses tonight as he was allowed. I did not want to wait until he cried from pain. They agreed so she was bringing the medicine as we had discussed. We turned on enough light so we could hook up his g-tube to the button. When the light came on we found blood on most of his bedding and his face. I was nowhere nearly as alarmed at the sight of blood this time. This is mainly because I noticed how well he was breathing before the light came on. His O2 saturations were hanging in the high 90’s and his heart rate was clipping along at about 120. I could tell from the sound of his breathing that he was not labored and his respirations were about probably around 40. This is all normal for him. The blood was mostly clumped up in the front of his mouth. He had probably coughed it up and some had got smeared on his face and blankets. The nurse was not too alarmed either, but did call the doctor to come in and take a look. He basically asked me what I thought based on what happened earlier in the day. Basically he was not concerned and wanted to make sure that I was not concerned before he left.

Within minutes after the doctor’s departure Caden was sound asleep. I sat on the couch and held him for about ten minutes until he fell asleep. I don’t see anything that will keep us in here past the morning at this point.

The rest of the gang

Sherry went and picked up Riley earlier this evening. They came back to bring me some food, a change of clothes, and a laptop. Walla, I get to post to the blog again. Riley had a fun day hanging with the Gollatz family. They ended the day at some kind family fun event at Crossroads Church in Summerville with a slip and slide thing coated with dish soap. Whatever it was it must have wore Riley out because he fell asleep on the way home. Sherry was able to get him coherent enough to walk up the stairs to his room.

Praise Report

I have only had to run on the suction hose twice tonight. Both times I only ahd to use it to clear the blood out from the front of Caden’s mouth. He has had almost no congestion and what little he has experienced has been pretty easy for him to cough up.

I’m going to catch some sleep while I have a break between the battles with the nurse assistant wanting to wake Caden up to take vital signs.

I will leave you with a rehash of what my friend CJ said today yesterday, “God is all over this. No worries.” Amen brother!

We have a time for the surgery tomorrow. The show time is 9am in the MUSC main (adult) hospital surgery check in. The surgery will actually begin somewhere around 10:30. The surgery procedure will require an inpatient stay. The procedure being performed is called a sphinterplasty. It is expected to improve speech and swallowing. The ENT will likely be injecting botox into Caden’s UES (upper esophagus schpincter) muscle as well as into his saliva glands. We do not have many mechanical details on the schpincterplasty since it is a change of plans since our last ENT visit. We do know enough to expect the hospital stay last no more than 24-48 hours after the surgery. Remember, this is the kid who was home pulling himself up into a standing position 72 hours after heart surgery last year. By the way, I forgot to mention this little fact. As of this week, Caden has gone a whole year without being admitted to the hospital. The last hospital visit was for the pacemaker install, artery being divided, and ear tube replacement in mid-June of 2006. Praise God!

Prayer Requests

We ask that you please pray for the following things by simply asking, “Lord God, we pray for:

• Every medical professional’s hands to be guided by you Lord
• Complete whole body healing for Caden
• Peace of mind and comfort for Caden (it has been a year since the last hospital stay)
• Caden to be transferred into his own room quickly
• Protection for Caden against any viruses, bacteria, or infections, etc
• Rapid recovery without complications
• Peace of mind for Big Brother Riley (he will be with the Gollatz family)
• Peace of mind for Sherry and Hank
• Discernment for all involved in Caden’s care

In Jesus’ name! Amen”

Check out the previous post for some more cool pictures of Caden enjoying the tastes of some foods. You will see that he takes after yours truly with the love for sweet and salty. The picture in this post was taken Sunday night. Caden was enjoying licking the salt off of a homemade French Fry.

I wanted to add a few pictures to show how much Caden wants to eat. The picture here on the right is from a therapy session just a few days after Caden turned 1 year old in November of 2005. This is to reassure those guys who hand Caden a sucker at church. Even though Caden has not swallowed much of the sucker juice in recent years, the suckers are being enjoyed. We are hoping and praying that the sucker juice will flow to Caden’s stomach instead of out his nose in the weeks to come. The larger copy of this picture shows how Caden has been eating through the g-tube for the past two and a half years. Just click the image for the larger view.

All of the following pictures were taken of Caden at the dinner(supper?) table over the past three days. Well, all are of Caden except for the one picture of Big Brother Riley.

6/24 – Caden licking a French fry.

6/25 – Caden licking a chip

6/26 – Caden licks a sucker while Mommy primes the feeding pump.

6/25 – Caden tasting a sucker

6/26 – He’s serious about this sucker

Riley making a silly face for the camera.

These are just a few pictures showing how much Caden wants to eat. He is ready to turn in the feeding pump and suction machine. Please join us in praying that Caden will be able to eat without a feeding pump very soon.

Read the next post for details on the surgery that we are hoping will lead to swallowing.

We are one week out from the sphincterplasty. I have been looking for some on line references that give a graphical illustration of what this surgery is supposed to do. I have not had any luck. Caden has been doing pretty good and we are praying that he remains illness free so that the surgery can proceed as scheduled. Sherry and the baby are both doing great. As you can see from the picture, Riley is especially excited about his new baby brother coming in about seven weeks from now.  We get to feel and even see this little guy move sometimes.  I will say it again, “I am glad I am a man because I have a hard time imagining what it must feel like to be carrying one of these little guys”.

We are in the process of moving Riley and Caden into the same room. Riley relocated to the new room about a week and a half ago. Caden will be moved in when the new window shade arrives. The current shade does not block enough of the afternoon sun to put Caden in there for nap. Riley has rarely napped in the afternoon for quite some time now so the afternoon light is not a factor for his afternoon rest time.

Physical Wonders

Caden has once again amazed his physical therapist. He now needs a new set of goals because he has blown right past the most recent goals. Caden can now jump without assistance. He has been going trough the motions for some time now, but he feet never actually left the floor. He is able to step up and down from a stool without assistance and without holding on to anything. The up part is still developing, but he can get the job done when he has plenty of energy and encouragement.

Communication

Caden continues to amaze us with his ability to communicate and understand our instructions. He must know near a hundred signs now. I catch myself forgetting how much he might be able to understand due to him not giving verbal feedback. He gives us little glimpses of how much he is actually understanding. A few days ago, he was getting a little excited and I told him he needed to sit down and get self control. He turned and walked to a chair where we have Riley sit from time to time. He climbed into the chair, sat down, and folded his little hands just like his big brother. Not a peep came out of his mouth. I was speechless. Riley must have saw the look on my face because all he could say was, “what is it daddy? What’s wrong?”

Prayer Requests

Please continue to lift Caden up in your prayers. We pray that the swallowing will be healed. Caden wants to eat so bad and he endues so much discomfort from the suctioning that has been required until now. I also want you to pray for Aunt Robin. She had surgery this week and needs prayer for her comfort and healing. Please keep my friend/mentor Rich and his dad in your prayers. Rich’s dad has been in the ICU for 10 weeks as a result of a surgery.

Also please remember the families of the fallen firefighters who lost their lives in the line of duty Monday night. Pastor Greg sent out and email earlier today saying that Seacoast is working with other churches in the local area to support the families with pastoral care as well as financially. Pastor Greg mentioned a note from the USA Today that said that this fire “dealt this city’s small, close-knit force a blow proportionately greater than the one suffered by New York’s department on 9/11.”

I apologize for the slow response in posting this praise report. My mom had the heart catheter done yesterday and the results were exactly what we asked you to pray for in the previous post.

My mom is doing REALLY well. God’s power has been shown once again. No stints and no balloons were required. The doctor said he was not sure why she was even referred for a cath. He said he hopes to have arteries in that good of condition when he is her age. While the doctor chalks this up to a wrong diagnoses, I will claim it for the Glory of God.

Thank you to all who have been praying for our family and especially for my mom this week.

We have a change of plans for Caden’s upcoming surgery date, and it looks like my suspicions about the manometry were valid. One of Caden’s speech therapists issued the following in an email to Caden’s ENT doctor.

“I have talked at great length to people in the know about manometry for assessing esophageal motility. When done, this is generally done to evaluate the LES. It is rarely done on children as it takes a good deal of cooperation. Furthermore, it is the opinion of those who do these studies that we will only learn what we know already – the UES does not relax.

Now, when I asked myself how the palate could influence the necessary pressures for swallow, myself was a bit mystified as children with huge clefts of the palate are able to swallow without difficulty. However, the palate is only one piece of the velopharyngeal sphincter with the role of the middle constrictor playing a major part. We know that individuals with 22q11.2 deletion have very poor lateral pharyngeal wall function, hence the better speech results with sphincterplasty than pharyngel flap. It is not a far stretch to think that, in Caden’s case, the tone of the middle constrictor is REALLY poor as all of his muscle tone is REALLY poor – even more so than generally found in this population. Sooooo, would we have a better chance to impact both Caden’s ability to establish oral pressures and, just maybe, his swallow function if we did a sphincterplasty (a good tight one at that) rather than a Z plasty?”

I realize there is a bunch of medical mumbo jumbo today that may not make much sense. What it boils down to is a different surgery. We (Sherry and I) agreed with the speech therapist. The ENT has also agreed with this line of thinking. Caden could have ended up getting a sphincterplasty in the future anyway. The thinking is that this surgery might have a better chance of aiding Caden with his swallowing in addition to correcting some speech issues. We are still planning to get some botox in Caden’s saliva glands and possibly get some botox in the UES (upper esophagus sphincter). By the way, the MBS (Modified barium swallow) done two weeks ago showed absolutely no improvement in swallowing functionality. For those of you who are new with Caden’s page, he has never taken a single meal by mouth. At two and a half year old, he gets all of his nutrition, medications, and hydration through a g-tube.

Caden has had a rough few days with secretions. There has been lots of suctioning and he has had some discomfort with tube feeds. He also had a little fever a couple of nights ago. Update…After posting this late Saturday night, Caden popped another fever in the middle of the night. He also required suctioning throughout most of the night due to excessive sections that would gag him.

Pray for Caden’s Nana

Caden’s Nana (my mom, Priscilla) will be going in for a heart cath on Monday morning in Columbia, SC. Her doctors say they have detected a need for a possible angioplasty and maybe stints. I will be in Columbia Monday along with my sister. Please keep her in your prayers. Pray that this cath will show that the healing has already occurred. Do you remember the cath that Caden had last year? That was an awesome display of God’s healing power. Pray for my safe travel to Columbia and back. Also pray that this procedure will remain an outpatient event for my mom as planned and pray for a rapid recovery of the wound created where the catheter is inserted.

Help Wanted Needed

As we near the delivery date for the newest member of the Osborne clan, we see a possible need in our circumstances. Caden still travels with some pretty unique pieces of equipment compared to the average kid his age. That equipment is not difficult to operate, but does require a little training. Riley would probably answer most questions to problems that might arise. Caden himself even knows how to perform basic operations of the feeding pump even though he does not have the freedom to use those skills just yet.

When the baby is born, my presence will be required in the operating room with Sherry. (planned c-section) In the event the need for delivery comes in rapid fashion, we may need someone to watch Caden for a few hours (3-6 hours) until family can get to town or until one of our regular caregivers can get off their day job. We are asking for a few people to work with us over the next two months to become knowledgeable on Caden’s care. The basic requirements are as follows:

• You know Caden
• You can tolerate a lot of snot and saliva secretions
• You don’t mind dealing with some medical equipment (i.e., feeding pump and suction machine)
• You have a fairly flexible schedule for responding on short notice
• You can spend a little time with us to learn Caden’s needs

There is a real good chance you will not even be needed to watch Caden if the pregnancy goes until the planned c-section date in mid August. Please contact us via the email at osbornefamily@hoei.com if you are interested. Sherry and I both receive these emails.

Your continued prayers for Caden and our family are felt and appreciated. May God bless you and your family!

[youtube]http://www.youtube.com/watch?v=ecPGv66Kuqo[/youtube]

I don’t know if there is anything that can be said to add to this video. Our entire family has enjoyed watching this video. This is the most Caden has ever laughed. I just wish I had the camera when he started laughing because this video does not even show half of the fun he had with the garden hose.

The kids you hear in the background are playing ball in the street. They nor I am encouraging Caden to laugh and play with the hose. You might be able to hear me snicker as I try not to laugh out loud while filming this video. I hope you enjoy this as much I did.

Blessings!!!

You can download a copy to view in Windows Media player by clicking HERE.

I hope all you moms had a great weekend. I want to wish my mom a Happy Mother’s Day before I get into all the news of the day. I Love You Mom!!!

We spent part of the morning at MUSC visiting Caden’s ENT (Ear, Nose, and Throat) doctor. The visit was scheduled to discuss the z-plasty or palette plasty as it was referred to today. Caden has shown some great progress in trying to speak. The diagnosis of a sub mucus cleft palette is known to hinder a child’s annunciation. We expect to get the surgery done during the last week of June. This will be an inpatient surgery in the main hospital at MUSC.

The ENT also recommended botox injections into Caden’s saliva glands. We have been seeking some help with secretions since Caden was an infant, but the choices are limited, especially with a cardiac patient. There are a couple of drugs that can be used to decrease secretions, but the don’t play nice with the heart. The most extreme option is to surgically disable the saliva glands. Since Caden has had botox in his cricopharyngeus (upper esophagus sphincter muscle), we know that he tolerates the botox.

Speaking of swallowing, there is an outside chance that this palette reconstruction could help Caden to swallow. He is still 100% tube fed, even for medication and hydration purposes. The ENT and speech therapist want to see Caden get another modified barium swallow before the surgery. This is two-fold. They want to see if there is a need for botox in the esophagus and they want to get a baseline for how much help the palette surgery helps the swallowing. One other test that has been requested is a manometry. This test is coming on a recommendation from from someone who has never examined Caden. We know very little about this test and still have some questions before we sign the bottom line to get this one performed. My biggest concern is that we were told that the test is supposed to require a probe be left in Caden’s esophagus for 24 hours. This information was relayed to us from the GI department and is contradictory to what I have been able to find on the Internet. The link above and a couple of other places like the National Institutes of Health say that this probe should be removed after approximately one hour of testing. The pediatric GI folks have been one of the less impressive departments in our two and a half years of interaction with MUSC, so we will proceed with caution.

I did get a glimpse of the blood test results ordered by the allergist. It looks like the numbers for egg whites, egg yokes, and dust mites were elevated. We still need to get the official word from the allergist though. I am interested to see if Caden will get prescribed an EpiPen since Epinephrine can cause a fast or irregular heartbeat.

The cold and flu season has ended and by the grace of God, Caden dodged the RSV bullet. We did end up in the pediatrician’s office today getting Synagis shots just to be on the safe side. The dose is so big, they have to split into two shots, one for each leg. Did you know that as of this week, we have gone eleven months without a hospitalization. PRAISE GOD!!! The last hospital stay was a planned visit for the pacemaker install in mid June 2006.

No news is good news as far as the new little boy goes. He is a very active little guy. I don’t know how these moms carry such movers and shakers around in their tummies.

Fun Stuff

I want to leave you with a few more pictures before I close this post. The boys and I have really been enjoying the weather. We played outside for quite a while on Saturday. Here are the pictures. You can click on them for larger copies.

Riley Climbing the Slide

Caden Throwing a Ball

Just a Swing’n

Hide n Seek

Caden

I hope you enjoyed the pictures. Thank you for continuing to keep and our family in your prayers.