This will be a status update and it will include the story behind events that happened earlier in the week that I mentioned on Facebook concerning Caden’s treatment.
First the status. Caden was put on room air for most of the day today. He is still dipping into the low 90s and high 80s on his oxygen saturation levels at the end of a tube feed. We will see if we can get through the night without oxygen and may…JUST MAYBE we will get to go home tomorrow.
We did have some issues earlier in the week that I mentioned on Facebook. I will give the scoop here as promised. We found out throughout the week that there were some communication problems between doctors, residents, and nurses. Most could have been easily caught and corrected if we had been fully informed about the care plan. Tuesday evening we were basically offered a chance to go home but we just weren’t comfortable with Caden’s numbers on the pulsoximeter. The over night and early morning of Wednesday confirmed that our parental gut instincts were working well. Caden had taken a turn for the worse that would have ended up with a trip back to the hospital due to worsening pneumonia. The doctors said he sounded worse and the chest xray confirmed. The plan as a result was to start a new IV and then begin running a course of Vancomycin in addition to the Rocephin.  I stayed around until the IV was in place because Sherry and needles don’t mix very well. Later Wednesday evening I was home trying to get a nap when Sherry called the house pretty upset. First Sherry said that the IV meds had not been set up properly and the saline mixture (needed for dilution) had actually pumped into the bag of medicine rather than into Caden’s IV. The IV was no longer working unless it was held at just the right angle to his skin. On top of that the on duty doctor had come into tell Sherry that some needed labs (blood draw) had not been completed earlier and that this had to be done before the Vancomycin was given to get accurate results. The results would be skewed during the culture if the Vancomycin was given first. She had not been able to determine why the order to start the meds was given before the order for the culture, but the good news was that the failed IV (caused bya nurse’s mistake) had given an opportunity to get the blood culture after all. That meant that Sherry would have to see a needle after all. She put on her big girl pants and they gave it a try…and they were unsuccessfully at getting the needed blood. I finally arrived to find Sherry holding Caden down while a couple of nurses tried to get blood from a vein in the side of Caden’s right foot. They were fishing pretty hard and not getting any blood so I called them off. As you might imagine Sherry was pretty upset and frustrated so she gathered her stuff and headed home. It was nearing 11PM anyway so I took over. The nurses gave me a few minutes to talk to the doctor and gather my thoughts before asking if I wanted them to give it another try at gathering a blood sample. I agreed and showed them a good vein in Caden’s left foot where IVs had been run successfully on numerous occasions in the past. They went for it and got the blood they needed. Unfortunately one of the tubes clotted and they were not able to get a blood gas. The doctor and I agreed that he looked pretty good and that a blood gas could wait until later if his vitals got worse. The IV meds were almost immediately started after the blood draw. This was about 11 hours after the chest xray led to the decision to go this direction.
We also learned that at the beginning of the week (Monday morning) while Caden still had his original IV he was given some Vancomycin without our knowledge. We knew he was give Rocephin. The Vancomycin was abandoned when the IV failed and they just went to Rocephin injections. It is now believed that the Vancomycin is what Caden needed to be on all along, but was put on and taken off without our knowledge. At another point the round-the-clock Tylenol and Motrin was stopped without notifying us and Caden’s temperature almost immediately started back up. The original reason for these meds was to keep the fever down so that Caden’s breathing would not be affected by fever. He is characterized by rapid shallow breathing when he has a fever so we were trying to prevent any extra work on his lungs with the round-the-clock meds. One of the doctors along the way got the bright idea that because he was not having fevers he no longer needed these meds. The doctor simply wrote an order to stop the meds rather than asking why the meds were originally given or even mentioning that she thought the meds should be stopped due to the lack of fevers. I realized about five hours after the last dose of Tylenol that I had not seen any lately and asked if it had been overlooked. The nurse said that the order was written in the middle of the night to stop the meds. I asked the doctors about it during morning rounds and one resident tried to throw the nurse under the bus by saying it was the nurse who stopped the meds. I was quick to inform this whipper snapper resident that I knew that the nurse could not make these decisions and that it required a doctor’s order.
After all this, on Thursday morning I had a good conversation with the attending doctor and a couple of the residents who had been involved in writing these orders in the day before and earlier in the week. I gave them a good little speech and told them that I realized that they probably saw the full range of parents come through here in terms of involvement in the care of their children. I have seen these parents run the full spectrum. You see those who drop their kid off and tell the hospital to call when the child is fixed. To their defense some parents do this out of necessity. They have 6 or 8 other kids at home and no one to help care for the others. Then there are those parents that want nothing to do with the care decisions for one reason or another..they just completely turn care over to the doctors even for the simplest issues. We are at the other end of the spectrum. We are fully involved in aspects of Caden’s care. It is almost required due to the fact that there is no one else to sort through the combination of issues unique to Caden. We don’t pretend to have training in medicine but we are specialists in field of Caden care. I asked them to simply look at how complicated of a child Caden is in terms of swallowing issues, immune posture, tube feeds, heart repairs, scoliosis, speech development, physical development and so on.  He is 4 1/2 years old, has been exclusively tube fed since birth and weighs 44 pounds. Caden has not been hospitalized in nearly a year due to illness. This doesn’t just happen by chance with a kid who has dealt with as many issues as Caden. This is the same child whose cardiology team debated over whether he could live through his first heart surgery at six days old. This is the same kid that some prenatal doctors tried to convince us to abort due to the difficulties involved in raising a child with serious health problems. This child did not get to where he is at because we sit on the sidelines and watch other people care for him even when he is in the hospital.
After my lecture I went on to recommend that they bring us completely into all the care decisions moving forward. I told them that we can and will maintain consistency between shifts as long as we know what needs to be done and why. I asked that they move their morning pow-wow into Caden’s room or allow us to join them in the hallway. Normally most of the observations discussed and decisions are made in the hallway and then they step in and tell us. They agreed to move the meeting into the room and that happened for the first time today. This immediately brought light to misinformation again today form one residents who did rounds earlier to gather information for input into this pow-wow between the attending, other residents, students, nurse practitioners, pharmacists, etc. One resident said during the pow-wow that Caden had been off oxygen and on room air since yesterday evening and had slept all night on room air. Sherry corrected this statement and said that the oxygen had been on all night and had just been turned off at 5:50am this morning just a couple of hours earlier. The resident proceeded to argue with Sherry over this issue. They settled it by going to the nurse and CA notes to confirm than Caden had in fact been on oxygen all night.
This has been one heck of a week. We have been blessed to have such an awesome place to take our child, but it is full of humans that are capable of mistakes as we are ourselves. I will leave you with a short note about the nurse that made mistake with the IV pump that sent saline into the bag of Vancomycin rather than sending the mixture into Caden’s arm. She was on shift the next day and requested to be our nurse. She did not yet realize the mistake that she had made from the end of her previous shift. Once she found out she came and ask us to forgive her. Of course we did and I told her that we don’t believe in luck. Everything happens for a reason and obviously we needed to draw that blood before beginning the IV antibiotics. I told her that her mistake helped cover the mistake of the doctor who wrote the order for blood work after the IV was ordered to begin. Later a nurse manager came and asked me if we wanted the nurse removed from Caden’s care. I told her that we were forgiving people and actually preferred to have the same nurse again. She had been on Caden’s case for two previous day shifts and she had worked well with him and us. The nurse stayed on Caden’s care team for the day and we were all happy for it.
Riley, JJ and Nana came to visit Caden today while I was home recovering from my 0-dark-thirty root canal. Nana said that Caden just grinned from ear to ear when they came through the door. Nana (my mom) has been taking care of Riley and JJ all week while Sherry and I have played leap from on Caden’s care. My mom and the other boys also brought Sherry some lunch since she had to be here at 6am to allow me to go get my root canal. Yes…I was able to get the tooth fixed. God put it on a couple of people’s hearts to help us out financially. This has happened a handful of times in five years and every time it has been right on time. We began working on getting our finances straightened out in 2005 by taking a Crowne Finacial course through our church. We followed that up by reading and listening to some of Dave Ramsey’s stuff which has blessed us. We have a peace of mind with what God has given us stewardship over. The enemy trys hard to discourage us in our efforts to pay off these lenders as we have seen in recent weeks. I just laugh and trust that God will provide us a way through these silly games that we face from time to time. You can read more about our financial testimony in a post I wrote titled Tithing in A Financial Storm. To summarize I will steal the words of our pastor, “if you want God to help you with your finacnces then you have to get him involved in your fincacnes.” Have you ever been tempted to forgo tithing because you knew your budget was going to come up short before you even started? I can’t tell you how many time that thought has crossed my mind in recent years. If it had not been for these blessings that these people shared with us this week I would not have been able to get my tooth repaired until mid September due to my work travel schedule and availability of funds in our budget. The notes from the different people said almost the exact same thing and yet I am almost certain that they have no idea the other was given the same words to say to us. It wil not be too long before God will be able to use us in the eact same way to bless others and I can’t wait.
My little car is still in the shop. Yes it has been a full two weeks now just to repair the A/C. The repair shop is now waiting on a replacement part for a defective one that got put on earlier in the week. They assured me that they will not charge more for the replacement of the defective part. The shop let me borrow a nice loaner car (2006 Honda) that has a for sale sign on it. The shop said they have had three calls this week as a result of me driving it around. I am just glad the potential buyers were not calling to complain about my driving. The shop has been patient with me driving their car around and I am sure they have been amazed at how calm I have been over the fact that they have not got my car A/C repaired after two weeks. I have dependable loaner wheels and they are getting advertisement for the car. Hey it works out for both of us.
Grandma and Grandpa (Sherry’s mom and dad) are scheduled to come into town tomorrow. Sherry’s mom is going to stay the week while I am in Washington DC….assuming Caden is discharged and doing good as of Monday morning. I will not be going anywhere if Caden is not home and doing better.
We continue to be blessed in so many ways. We have great family and friends. Thank you all for praying for Caden and our family.
Final note of the night…it is 11:45pm Friday night and Caden’s sats are 96 on room air while he sleeps. PRAISE GOD!!!