Caden got home in record time. He was home well before noon on Thursday. I am sorry I missed doing and update last night due to plain old exhaustion on my part.
I will keep you posted as things progress with Caden’s swallowing.
Drakes
Amy has been transferred to MUSC. Her water broke last night. She is at 31 weeks 4 days. She is doing okay other than being stuck in the hospital now. The babies are looking good and the doctors are just going to let her body decide when it is time to deliver.
Caden got home in record time. He was home well before noon on Thursday. I am sorry I missed doing and update last night due to plain old exhaustion on my part.
I will keep you posted as things progress with Caden’s swallowing.
Drakes
Amy has been transferred to MUSC. Her water broke last night. She is at 31 weeks 4 days. She is doing okay other than being stuck in the hospital now. The babies are looking good and the doctors are just going to let her body decide when it is time to deliver.
Caden is in his own room in the MUSC children’s hospital. Well, his own shared room. This placed is packed. Caden had to wait for several extra hours in the recovery room until they discharged someone to free up a bed. This is Caden’s first stay at MUSC where he did not get put in a unit for cardiac babies. We expect to be out of here by late morning. Caden was back on partial tube feedings before he even left the recovery room this morning. He was back up to a full tube feed by the afternoon and they pulled his IV.
I have a picture of Caden’s esophagus that was taken by the doctor today during the procedure. I don’t have my picture scanner here at the hospital or I would share it with you. The doctor said that she knew that Caden’s muscle at the top of his esophagus would be big, but she said a better word to describe his muscle is gargantuan. She injected botox into it in two separate places. She expects the botox to take effect in 48 to 72 hours.
In other big news today, Sherry got our blood test results back from the genetics screening. This was to check to see if Sherry or I gave Caden DiGeorge Syndrome. Neither of us has DiGeorge and the geneticist said there is no reason to test anyone else in the family. Caden seems to have got DiGeorge the same way over 90% of DiGeorge kids get it which is an anomaly during the first trimester that causes the micro deletion on the 22nd chromosome.
Thank you for praying for Caden today. God has answered and protected this little boy as you have asked. To God be the glory for the work done here today. Caden came through this procedure without any complications. Please continue to pray that this botox treatment will take affect in just a perfect way. We want to put away that suction machine this weekend for good.
Caden will get another MBS (Modified Barium Swallow) next Wednesday. This will document the new swallowing skills that Caden will gain from this botox and clear Caden to start working with speech and occupational therapy to take food by mouth for the first time ever.
Thanks a bunch for keeping up with Caden’s progress and continuing to pray for him and our family.
Happy nine months to Caden on August 2nd. This picture was taken this evening. As you can see, Caden is in a great mode.
Caden is doing great! Off breating machine. No complications. More later. Hank
We were notified late this afternoon that Caden is the first case tomorrow morning. We have to be at MUSC at 6am. They will begin with him around 7am and the botox procedure should take approximately two hours. I will try to get a posting up when he is in his room and settled in. Look for another short update in the afternoon on Wednesday to learn the details of Caden’s condition.
I would have posted this earlier this evening, but I just got home from my first night on my new part-time job as an instructor at a local college. Things went great there. I believe this will be one of the most rewarding part-time jobs I have ever had.
Please continue to pray for Caden especially in the morning.
Thanks a bunch…God Bless…Hank
It appears that Caden’s g-tube was malfunctioning and causing him some discomfort. I got home today and Sherry asked me to look at it because it just did not look right. Per the instruction manual I tried deflating the balloon that holds the tube in place. This would tell me if the balloon had the correct amount of filler (sterile water). What I got in the syringe was not sterile water. It appears that the balloon failed(burst) and it was irritating Caden since it was not being held in the correct position by the balloon. I replaced the button style g-tube fitting with his old g-tube that we have as a spare. Sherry, bless her heart, was in about as much discomfort as Caden. She’s not a big fan of the tube changing process. It was all she could do to hold Caden’s hands out of my way (eyes closed) while I changed the tube.
I called MUSC to make sure I knew what to look for to verify the tube was placed correctly. The lady that works these issues gave me some concrete things to look for and then she said it sounded like I had done things just fine. Caden just finished his 8pm feeding a little while ago and did not blink from his sleep while getting fed. I will pick up a new button on Wednesday while at MUSC. The button style g-tube is a cool device and we like it much better than the old tube.
There have been no more signs of fever. It looks like we are on for Wednesday’s botox treatment. We do not have a time for the procedure yet, but we did not expect to get the show time until tomorrow anyway.
Please keep Sherry and me in your prayers in the next two days. We both tend to get very nervous when it comes to having invasive tests, surgeries, or procedures done. This botox thing is no different. They will be basically injecting a poison into Caden’s upper esophagus sphincter. (AES) This is very near to the vocal cords and muscles that are used to close off and protect the airway. Sherry openly admitted that the fear factor is sneaking in again. As many of you know this has been our toughest battle over the past year. Please pray for us to remember my favorite verse in the next few days.
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 1:7 (KJV)
Drakes
Please keep the Drakes in your prayers tonight as well. Mom is in the hospital again and having contractions. She is also dilating a little this time. A normal OB visit landed her in the hospital today for observation. She is at approximately 31 weeks in her pregnancy carrying twins. The Dad and I are going to Promise Keepers this weekend in North Charleston. God willing and the creek don’t rise.
God bless you all. Thank you again for your prayer and support.
Caden may have caught the bug that has been going around our house. He has been fussy, congested, and running a low-grade fever. We are keeping an eye on him and will keep you posted. We pray that the fever goes away quickly so it does not impact the botox treatment on Wednesday. The botox could really help with the congestion since we are having to suction Caden more frequently because of the congestion and runny nose.
I added new pictures tonight. I have not found a new gallery software package that does what I want so I am playing with what I have a little. Click the image below to go to the new picture page.
Thank you for your prayers and support. Don’t forget to check out the previous two postings below that have been added since the last email notice.
Caden
Caden has been really picking up on his interactions with everyone around him. His personality is starting to show and he is such a joy to interact with. Caden rolled over from his back to his belly twice on Saturday afternoon. He is becoming more mobile by rolling back and forth while pushing himself with his feet. We can put him on his blanket in the floor and he will be off of it in minutes. He smiles a bunch, except when we go at him with that mean old suction machine. He knows when it is coming too. He will start shaking his head back and forth and banging his hand on his leg to tell us he does not like that thing. The only exception to this is when he goes a little too long without being suctioned gets to gagging. This normally comes during or right after a feeding when he has one of the retching spells. Praise God, the retching spells are getting less frequent over all.
Thank You
I want to thank all of you faithful visitors to this web site. I also want to thank you for taking time to visit my other blogs The Land of Ozz, Grill’n Time, and The Tech Land of Ozz. I encourage you to visit these sites if you have not already. I have posted just about as much content on my other sites as I have this one. I work pretty hard to find content for the other sites to attract visitors that might generate a little revenue from the ads.
I appreciate those of you who have used the ads on the side bars of my sites. I even make a little off of the use of the Google and Amazon search bars. Amazon.com
More
I have one other note to share. Today I got my first story published on a very popular geek site. You can read the details and find a link the article on The Land of Ozz page by clicking here.
Don’t forget to check out the update below concerning the Medicaid Waiver.
Thanks again.
God bless.
It has been a long road with the Medicaid Waiver application. We are not exactly sure whether we have been approved for the Medicaid Waiver, but we were contacted by CLTC (Community Long Term Care) on Friday. The lady who called said that we have been funded for 35 hours per week of in-home nursing care for Caden through CLTC. That said, the lady also told Sherry that this is a different program than the Medicaid Waiver. She told Sherry that CLTC is part of the same agency that handles the Medicaid Waiver applications, but her office is not part of that process.
Regardless of how we got approved for this funding we still have staffing issues. We have not had a nurse come to us through a staffing agency in weeks.
I continue to pursue the Medicaid Waiver diligently for couple of reasons. There is always a chance that the staffing issues will sort out and we will be able to use the current CLTC funds and the Medicaid Waiver when approved. The other reason I continue to pursue the waiver is because I am so dumbfounded by the lack of coordination between the state agencies who deal with the Medicaid Waiver application process. Sherry told me the other day that I should run for state office just to get in there and work on cleaning up this mess. Maybe later, but in the meantime I am going to learn the process the best that I can and then help educate others on how it actually works. Below is a copy of a letter that I sent out Friday to appeal the most recent hurdle in the Medicaid Waiver application process.
I know all of this sounds very confusing. I wonder sometimes if the confusion is built into the process on purpose to try and weed out those who are not persistent enough to actually endure this bureaucratic nightmare. I would guess that many people would have given up by now. While we have not given up, we have taken steps to deal with the 24/7 care that Caden requires even without nurses.
Caden’s MBS (Modified Barium Swallow) showed no significant change in his ability to swallow. The botox treatment is on for next Wednesday 8/3. The time is yet to be determined.
Riley was still very ill all day Thursday with a stomach virus. We have cancelled our weekend trip to the upstate due to his illness. Please read below about the tickets that we are making available if anyone wants to make the three hour trip to Greenville on Saturday.