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Please remember our little Caden in your prayers today. Caden will visit with the orthopedic surgeon in the early morning for a six-month follow up on the scoliosis diagnosis. Then Caden will have a Modified Barium Swallow (MBS) to test is swallowing ability. We will then have a visit with Caden’s ENT (Ear Nose and Throat) surgeon in the afternoon to talk about the next step with feeding and swallowing.
Please pray for positive results from all of these appointments today.
It has been about 10 days since Caden got the cricopharyngeal myotomy. This surgery was preformed to divide (cut) the muscle that causes the UES (Upper Esophageal Sphincter) to squeeze closed. The surgery itself was completed as planned without any complications. Caden did experience some respiratory issues from being intabated (on the breathing machine) during the surgery. This required oxygen at night for about a week after the surgery. He also had a fever during a couple of nights after coming home. Sherry took him in to get some medication to treat the symptoms and he is now doing great. Caden is off oxygen and is now sleeping through most nights without even needing any suctioning.
Next Monday will be a big day for Caden. He will see the orthopedic surgeon for his six-month follow upon the scoliosis diagnosis. Later in the same day (Monday 22nd) Caden is scheduled to get a MBS (Modified Barium Swallow). We will go straight into see the ENT to get the results.
Today was the big day. Caden had a surgery called a cricopharyngeal myotomy. This surgery was preformed to divide (cut) the muscle that causes the UES (Upper Esophageal Sphincter) to squeeze closed. In Caden’s case the muscle has never relaxed enough to allow for him to pass food, drink, or even his own saliva into his esophagus. That is what has required him to have every single meal of his five years of life via a feeding tube. Once this surgery heals for a couple of weeks we I will take Caden in for a MBS (Modified Barium Swallow). Sherry being pregnant will not be able to be in the room with all of the radiation. The expected results should show that Caden is ready to learn to swallow. At that point we will begin to arrange for advance feeding and swallowing therapy. I am not 100% sure we will be able to get what we need locally so stay tuned for what the next step will be.
Lots of Blood and a Sedated Echo Cardiogram
While Caden was out for the surgery today the doctors pulled about 20 tubes of blood for his immunology workup and the MUSC pediatric cardiology team slide in for an echo cardiogram. They like for kids to be as still as possible and most five year olds can’t or won’t stay still long enough. They forget that Caden demonstrates very good self control for medical procedures.
I will give a shameless plug here for the lessons in Growing Kids God’s Way and other teachings by Gary and Anne Marie Ezzo that have taught us that parents have a much harder time with training things like self control than do the children. The kids will come along the way if parents have the conviction and dedication to maintain consistent character training. The cardiologist at MUSC obviously don’t meet enough kids whose parents have the conviction and dedication that I am talking about. None of our kids including Caden have perfect self control and never will, but we stay the course and strive to rise above the level of mediocrity as taught by Joey and Carla Link of Mom’s Notes.
Prayer Requests and Praises
Praises:
Requests for Caden and our family:
Snow tubing was the plan for the day. We were working on a trip to the western North Carolina mountains this weekend. I promised Riley some snow this winter and I was planning to deliver on my promise this weekend. Our day went horrible yesterday when I was woke up at about 4am with a tooth ache that ended with half of my day in the dentist chair. I was given some narcotics to help manage the pain so driving a mini van full of crumb crunchers in the snow and ice was not a good mix for the weekend. Never mind the fact that the cost of the emergency dental work and a broken car window completely drained our emergency fund. Sherry and I agreed that we would cancel/postpone the trip.
Then this evening Caden popped a fever of 102.3. This fever confirmed that staying home this weekend was the right decision. Caden has been tugging at his ears this week and has had lots of goobers. With him still not swallowing anything the excess goobers makes for some rough nights that can be especially uncomfortable if we are all crammed into a hotel room together.
Myotomy Scheduled
We have decided to move forward with the Cricopharyngeal Myotomy for Caden. This is the first step to get Caden some swallowing functionality. Caden has never swallowed anything since birth…not even his own saliva. After this surgery Caden can enter aggressive swallowing therapy. Up until this point no one has been willing to work with Caden due to the physiological blockage at the upper esophageal sphincter (UES). The surgery is scheduled for March 5th. The ENT will have to cut through the outside of Caden’s neck to gain access to his UES. The surgery will require at least one night in the hospital for observation since the procedure will take place int he main operating room area of MUSC. We may also try to get a sedated echo cardiogram and some immunology labs at the same time. Caden generally has very good self control and does not require sedation for an echo, but the number of vials of blood required for an immunology panel is very involved and drawing that much blood is tough on the little guy. More details to follow.
Caden has been slowly improving since the New Year’ Eve emergency room visit. He’s been going all day without using any oxygen during wake hours for nearly two weeks. However he still needs oxygen while sleeping to keep his SATs in the 90s. He is tugging at both ears and they are both draining via the tubes even though he in on an antibiotic that is supposed to target ear infections. He has popped a little fever three nights in row so it is time to go after a different antibiotic to treat the ear infection.
Even with all that I can’t believe how much it seems that Caden’s vocal responses have been improving in recent days. Maybe it is because his speech therapist is pushing him harder. I will capture some on video and share it with you soon. His voice is so precious and every little syllable is music to my ears. Caden seems to be initiating much more conversation using words without prompting. Our little Punkie is growing up.
We avoided a hospitalization by the skin of our teeth last night. We actually went to the MUSC Emergency Room and walked in just as the new year was being celebrated on the east coast of the US. It was exactly 11:59 when the nurse took Caden back for triage.
The week began with most everyone in our house having congestion. Riley and JJ seemed to be getting the worse of it and then it hit Caden. We took Caden to the pediatrician for the first time on Wednesday. They doctor gave Caden a rocephin shot and prescribed an oral antibiotic (Omniceph). The doctor ordered a chest x-ray to look for pneumonia and recommended that Caden be on oxygen when sleeping to keep his SATS in the 90s. He asked us to come back the following day to see how Caden was progressing. We went to MUSC to get a chest x-ray and then went home.
Caden did okay over night but did require lots of suctioning and did need 2 liters/minute of oxygen via a cannula to keep his SATs in the 90s. The next day (New Years Eve) we started off early with the follow up pediatrician visit. Caden’s SATs while awake wee a little worse and the doctor was concerned about a little noise he was hearing in Caden’s lungs. We did a couple of breathing treatments in the doctor’s office and gave Caden an oral steroid. The doctor gave Caden a second round of Rocephin shots and ordered a z-pak (Zithromicin) as a second oral antibiotic. He also recommended that we continue breathing treatments at home along with chest CPT which is a physical therapy treatment to help release secretions from the lungs. We spent nearly two hours in the pediatrician’s office and he flat out told us that if we were anyone else he would be sending us straight to the hospital. Given the fact that we have oxygen and a pulsoxometer sp?at home and a proven history of providing outstanding care for Caden he felt comfortable with sending Caden home with the stipulation that we agreed to take Caden to the ER if things did not begin to improve later in the day.
Things did improve later in the day. Caden played without oxygen and kept his sats well in the 90s. His energy level was great and even got his color back by mid afternoon. Sherry went out for a while with her niece Kat. When she returned she noticed how much better Caden looked and acted. The remainder of the evening was pretty non eventful up until Caden went to bed.
It wasn’t long after Caden went to bed that his O2 meter alarm started screaming. Sherry tried moving the probe to a different finger and we increased the oxygen. Nothing was helping as Caden’s SATs sank into the low to mid 80s. Keep in mind that even though Caden has had multiple heart surgeries his heart defects did not cause low O2 SATs. With his heart repairs his heart move blood as well as any of the rest of us and his SATs are normally 97-100.
After an hour plus of fighting the SATs Sherry and I realized that Caden’s nose was too clogged to let the oxygen get through. Caden was doing a lot of mouth breathing and even though the oxygen was cranked up pretty high we did not have a mask to replace the cannula. We both agreed that we would not be able to keep his SATs above 85 with the equipment we had. We called the pediatrician and asked them to call ahead to MUSC to give them a heads up that we were coming. We decided that we could transport Caden without an ambulance since his SATs stayed up when he was awake. We don;t have a nay portable oxygen tanks but rather only have one of those big bulky machines that makes oxygen and must be plugged in to work. It cdoes no good for a car ride. Once I told Caden we were going to the hospital he sprang up like a jack in the box. He loves the hospital because he generally gets to watch way more videos and TV there because there is absolutely nothing else to do.
I left the house between 11 and 11:30 with bags packed fully expecting to have Caden admitted to the hospital. The ER docs don’t know us like the pediatrician and are much less inclined to let a child go home on oxygen. We got there and Caden’s SATs on their equipment showed exactly what we saw at home. They went ahead and put him on oxygen and get him up to the mid 90s. I told them that once he went to sleep he would dip into the low to mid 80s so they asked that I try to get him to sleep which is no small task in a hospital ER room with all the monitors beeping and blinking. It was near 2AM when I got him to sleep and he started dipping into the low 80s just like at home. They switched him to a mask an his SATs came right back up into the mid 90s. However the mask by design requires twice the amount of oxygen flow to make it work properly. That concerned the ER docs since they don’t like a kid going home on O2 especially this amount. I asked them what else the would be don’t for Caden that we could not di at home with this mask. They agreed that nothing more would likey be done but they still did not feel comfortable making the call to let Caden go home so they called Caden’s pulmonologist. This did not excite me too much either as the pulmonologist have been fairly conservative with Caden.
It was about 5:30 am when the call came. The pulmonologist said that he was okay with Caden going home with a oxygem mask at the higher rate of flow. The mask is what requires the higher flow rate and not Caden’s condition. Had Caden’s nose no been clogged he would have probably been find on 1-2 liters of oxygen via a cannula. That said Caden and I headed home with a mask in hand. We arrive home at about 6am and immediately went back to bed.
Caden continues to do okay today and is able to play without oxygen and still keep his SATs in the 92-94 range. We are hoping and praying for this head cold to clear up very soon. Your continued prayers for Caden and our family are greatly appreciated.
Happy New Year!!!
The Thanksgiving weekend in the Osborne house was a good one. The Tuesday before Thanksgiving Caden was cleared to come off oxygen. Caden did have one pop-up fever of 103.5 but it went away with OTC meds and has not come back. Caden has tugged at his ears a little over the weekend but no drainage has appeared.
Monday we took Caden in for a visit with the MUSC pediatric pulmonary clinic. Caden’s lungs sounded clear and his oxygen saturation levels are holding at a solid 96%.
Didn’t we bust out of here in less than 5 days after a full open chest heart surgery last year? Thursday we will complete a 10 day stretch in the hospital on this round. I am so tired I can’t see straight. Oh wait, I don’t have my glasses on.
Caden should get out of here tomorrow evening. We are looking for him to be off oxygen with at least 94% on his oxygen saturation levels. We got to that this evening. The other thing the doctors want is to complete a full seven day course of IV antibiotics. We reach that at 5 pm tomorrow. So we can see the end of this hospital stay in sight.
Please keep our family in your prayers. Caden is still on the mend and will likely need oxygen when he sleeps for a few more days even when he gets home. Our other two boys are completedly out of shape with their behaviour but what should we expect aftr two weeks of passing each other in the night…and early morning. Thanks for following Caden’s progress. If you like Caden’s Page please vote for us on the Wellsphere People’s Health Blogger awards (Registration Required). Hint: My primary love language is Words of Encouragement and I sure could use some right now.
The big guns are antibiotics not antiaircraft. This is hospital night five that started Monday night due to dehydration. Caden starting having fevers above 103 in the early AM Wednesday. Today the fever showed up in the early evening. He has had enough fevers along with some noise (coarseness not wheezing) in his lungs to justify some high powered IV antibiotics. He was stated on vancomycon and rocephin tonight. The doctors ordered a chest xray that did show some areas in both lungs. They also ordered a second round of blood cultures. The ones pulled on Wednesday morning after the first fever have not grown anything. None of the stool samples have grown anything either. That all means that Caden does not show signs of an identifiable bacterial infection.
As for the dehydration and diarrhea we pushed for a change in the course of treatment today. The doctors were as puzzled as us and seemed to welcome our idea even though it does not fit with recent studies. Basically we took Caden off all tube feeds for the day including his normal hydration (water boluses). Sherry and I felt like it was time to give Caden a try on the same path taken by JJ, Riley and me. That was to go for a day without eating anything and then begin slowly reintroducing foods. Since the IV fluids are running fine the docs agreed even though recent research shows that we should actually be trying to get back on a normal diet as soon as possible after diarrehea. Who would have thunk it? I thought you were supposed to do the BRAT diet for a few days but evidently that is an old school and out of date. It still worked for me last week and I am not about to try and fix a process in my house that ain’t broke.
So the bottom line is that we are running the fever/lung issues separate from the stomach thing. There does not seem to be any reason to think that they are related except the fact that the same kid has both issues at the same time.
All is well otherwise. We got some help caring for Riley and JJ from our oh so gracious friend Mrs Young today. Yes, the same Mrs Young who has five of her own children with number six due in January. Read about their fun life adventures over at The Young Family blog. What I really want to hear more about is the trip she took to the store with ALL SEVEN KIDS today. That included two (2) two-year-olds. Now being seven months pregnant with seven kids in tow, you can only imagine how many strange looks probably she got today. Most people would need some ibuprofen just to think about that adventure but Mrs Young is no rookie and she has some of the best mannered little ones you will ever meet. Thanks Julie!!!
