Caden has been out of the hospital for three days following his scoliosis surgery and we are finally getting back to “normal”. Life is a somewhat new normal for our family for at least a season, but normal none the less. Caden has come out of this scoliosis surgery with a much slower recovery than from previous surgeries. His mobility is much more limited than we expected. His center of gravity is off even when trying to sit, particularly obvious when sitting without anything to lean on. He is walking now (assisted). We are staying close and holding on firmly to at least one of his arms. This morning was Caden’s first trip down the stairs. He was VERY guarded as I held one arm and he held the handrail with the other hand. Caden is spending the majority of his day laying on an air mattress in the living room floor. He does roll over on his own, but has not yet taken the initiative to sit up or stand on his own. I showed him how to move himself to a sitting position so he has an idea how to make the transition, but is not interested in exercising this new skill.
Caden was discharged from the hospital while still requiring oxygen. The resident for orthopedics did not initially want to discharge Caden on oxygen. He said that “He [Caden] didn’t come in on oxygen so he’s not leaving on oxygen”. My response was that he came in on an antibiotic that was prescribed due to low sats and the antibiotic was not restarted immediately after surgery per our request. Then Caden began to improve once Rocphin does started a few days after surgery at the order of the general peds folks. The conversation ended and the orthopedics attending physician came in a couple of hours later to tell us we could leave as long as the chest xray showed improvement….and cardiology and general pediatrics agreed with us managing Caden’s oxygen at home. The xray came back looking better and everyone agreed with our departure.
Caden is requiring less pain medication. He is still waking at night a couple of times, but he is also getting by with only Tylenol and Motrin during parts of the day.
About two months ago I explained some medical concerns that I had. Yesterday I went in for an EGD with dilation and botox. Yes…I got botox injected in the lower stomach opening that leads to the intestines. I showed abnormal results on a gastric empty study that led to this procedure. It seems that my stomach has been taking nearly twice as long to empty as normal. The doc also took a biopsy of my esophagus. I think I have had a biopsy done during a past EGD with negative results, but hearing from they doctor that he felt a biopsy was warranted rattled Sherry none the less. The logistics of getting the procedure done was a bit interesting when factoring Caden’s condition in. Sherry and I worked it our where Sherry’s dad would take me to the procedure, but that would leave Sherry’s mom unattended. Dara has not been left alone for more than a few minutes since her hospitalization back in August. Some days she does not even get out of bed and yesterday was one of those days. To prevent me from having to reschedule my procedure we decided to relocate our gang over to Sherry’s parent’s house while Joe took me to Roper St. Francis Hospital. Once my procedure was over Joe took me back to their house. Sherry took me by Wedndys for a frosty. It all worked out even though it was a very hectic and chaotic morning.
Today Sherry took Caden in for a follow up with his pediatrician. They had not concerns other than what looked like a some infection trying to flare up around the stitches used to close the hole in Caden’s leg caused by the arterial line. A little antibiotic cream was prescribed to treat that. Sherry asked the pediatrician to sign off on a temporary disabled parking placard. We both agree that Sherry needs all the help she can get with moving Caden form the vehicle into buildings. The pediatrician agreed and signed the form. Sherry went the extra mile and went to the DMV with all four boys to try and get this done as soon as possible. We thought form reading the SCDMV form that they would want to take Caden’s picture for the placard as shown in the example on the SCDMV web site. The new pictured placards are intended to keep people from abusing disabled/handicap parking spaces when the vehicle is not being used to transport the disabled person. Unfortunately what Sherry learned form her visit to the DMV was that they not only want a signature form the doctor on the form, but they also require a prescription written by the doctor for the disabled placard. So her trip to the DMV was not as productive as hoped. In addition to the wasted DMV trip she got to the gas station and realized she was missing her debit card. We tracked it back down at the Wendys from yesterday where she used it to pay for my frosty and fries. 😉 Needless to say this week has been interesting.
The new norm seems to be a much less mobile Caden for a season. In addition to being less mobile we will be changing Caden’s feeding regiment to the new formula that arrived today. It is less concentrated but supposedly more healthy. It is made from pureed chicken, vegetables, and fruits. The new less concentrated formula will require more frequent boluses of formula. His additional water intake for hydration will decrease so the total number of tube feeding events per day will be near the same.
Oh..one last thing. We did finally get to measure Caden and compare it to his height to what it was the night before surgery. The net gain in height was approximately 1 3/4 inches gained as a result of the VEPTR Rod scoliosis surgery. The decrease n curve is estimated to have gone from 73 degrees down to the 30-40 degree range. I will get specifics once I pull a copy of Caden’s records and images from the past week. I like to read the doctor notes to see what they did share with us after a visit or surgery. 😉
Prayer Requests
- Caden’s rapid and full recovery
- Caden’s comfort
- Negative results for the biopsy taken of my esophagus
- Strength for Sherry! as I have returned to work and Nana has returned home