Well we are home again, but only for about five days. We go back for the G-tube revision surgery on Thursday and they are also going to do the repair in the trachea at the same time. They were able to coordinate the two doctors schedules so that they could combine the surgeries into one, so that is good news. There is no real accurate projection for recovery. From what we are piecing together the trachea repair would likely be the portion that may detain us longer. Much will depend on how much he ha to do and how. We can not wait to have this G-tube saga over with. By the time it is all finally completed it will have taken 3 weeks to orchestrate. Most of that delay was so the surgery team could get some tests that yielded very little result and more despairing of opinions between doctors, along with the insanely wacked GI doctor that devised the idea of adding Elias pull-thru surgery on top of those (remember a few weeks back?). That has become our running joke to get us through the days now. When they schedule a simple test we say, “you want to add on a pull-thru to that?” I guess you have to have been there. Anyway, Thursday, Elias goes in again for surgery. The recovery period is very vague. They told us it could be one day or two weeks. They just will not know until they get in and see what exactly has to be done. Then there is of course the Elias element and how he chooses to cooperate. So we are leaving our hospital bags packed. Our week is not full of rest though and that is unfortunate as we are both exhausted. Monday we have a VCUG scheduled. This is for his urologist. I will write a separate update about our urology visit we had on Friday. If they are unsuccessful in catheterizing him, which is very likely because of his hypospadias then they will try to tack that onto the surgery on Thursday while he is under anesthesia. This test checks on the Vesicoureteral Reflux (VUR) aka kidney reflux that Elias has. It will also identify any fistulas that may be in the GI tract that could potentially cause issues in conjunction with his planned pull-thru.
As you remember from our last update things were bizarre in the difficulty it took to have Elias admitted. While the FA BMT team took us on their service the irony is the two issues creating the reason for admission had to be consulted out to the very teams that rejected us. I wanted to ask the GI doctors especially why they rejected Elias on their service as this is the second time there has been an issue with Elias and the GI team. Remember the nurse that refused us on our initial admission? That was on the GI unit! So the two issues were the training for the central line care and then the finding of the NJ tubing coiling in the stomach. We got our training on Thursday afternoon with no problem. We learned the daily maintenance for the line which is basically flushing it every 24 hours with Heparin. There is a technique that is semi- sterile or clean as it is medically referred, but compared to the other things we have had to learn for Elias care it is very simple. We also had to learn emergency techniques as there is a high risk for infection if not managed properly. It is an open tract right into the blood stream near the heart so infections are fast, strong, and serious. Even though it is fairly simple protocol must be followed to the letter to prevent contamination. As for changing the dressings on the line, we will have a nurse from the hospital come out once a week to do this and we will eventually learn this care as well. This is a completely sterile technique and is one they will slowly induct us to. Late Thursday afternoon they took Elias to get the NJ placed. It took them many tries, several doctors and a phone call asking what plan B was if they failed. 1 1/2 hours they manipulated, pushed and pulled to get the coiling out of the stomach and into the Jejunum. They were only able to get it to the junction where the Duodenum and Jejunum meet. There is a little hook that leads into the Jejunum that they could not get the tube over. This happens most of the time in reviewing the history Elias has with NJ tubes. GI had to be consulted to see if this was acceptable. It had to be, but it isn’t the best scenario, not from a feeds aspect, but a dislodging point of view. Here it is easier to slip out of the desired feeding target area. By the time Elias returned to the room it was after 6pm. The decision was made to keep Elias overnight start his feeds at a slow rate and work up to full feeds to see that he tolerated them and there were no more issues with the NJ.
Earlier in the afternoon we had a leak of some kind from the G-tube stoma. Not exactly sure what is was but the color was darker than it should have been for someone who had been without fluid 10 hours the day before and only had clear liquids for 16 hrs. The doctors looked at Elias and the leakage which was soaking his bed at this point. It was a very large amount. The conclusion was that the coiling from the NJ in the stomach was causing a blockage. I could not understand that because he was not being fed he was getting IV fluid via the central line. However, that was the only explanation they could offer and we only saw residual afterwards. As if the admission nazi episode was not enough to go along with all the other follies from the previous weeks, but the orders for the feed rate increase I mentioned a few moments ago was botched. The orders were at 9pm start feeds at 5mL per hour increasing the rate by 5mL every three hours until we reached 40 mL. The nurse started them at 9 pm like she was suppose to, but then apparently never bothered to come back in until 7am the next morning. When Kat noticed the rate reading 10mL at 730am she asked the nurse, which was the new shift nurse for the day. The nurse explained that in report she was told the the nurse got behind. What? Behind? She could not ask for help then? Whatever, human error the only problem was this was why we were kept in the first place. They were not sure if it would impact our discharge. Fortunately it did not, but it was a human error/mistake that cost Elias nutrition and calories. For a child that is already having trouble growing and has weighed the same now since the end of April this was not the kind of error we needed. I understand she was human and entitled to make mistakes, but I have said it before mistakes in medicine can cost lives and that is why protocols exist to help mistakes from happening. She apparently did not review her orders after the beginning of her shift. I did report the oversight though to the clinical manager. This incident also caused us not to be discharged in time for our ultrasound we were scheduled for. We still made it there and had the testing done, but we had to go back up to the room and get the official discharge. We also had the urology appointment to make early afternoon. The whole day was rush rush rush. Finally around 2:30 we were on our way home. Then just before 5pm we started seeing blood in the G-tube. We called the BMT doctor and he told us to come back to the ER. UGH! Back in the car we went and traveled back to the hospital. They ran a series of tests and had some looks and determined it was probably irritation to the GI tract cause from the manipulation of the NJ over the last few weeks. I’ll be so glad when we can get that out of him. We were glad that it was nothing serious, but it reinforced our thoughts on how long this G-tube revision was taking and that Elias was being subjected to the NJ longer than we felt comfortable with, and now there was bleeding from the continuous placement and manipulation.
Needless to say the last three weeks have been interesting on several levels. While we have experienced some really bizarre and really unfortunate things, the folks at the hospital really do want to make them right. Many times we are approached before we bring it up and that shows a commitment to improving. As I told the many people I have spoken with on the matter there, despite the events the care Elias is getting is excellent. There has just been some real communication issues between disciplines, various levels of doctors that exist at a learning hospital, and Elias’ complexities that make an already difficult line to navigate that much harder. IT also does not help that the priorities keep shifting and with out some to step in and take control doctors only focus on their specific area with blinders on. They are genuinely embarrassed by the details they hear about some of the things we have been exposed to and many people are speaking up on our behalf without provocation from us. When people come to speak with us we never fly off the handle about things, we are always calm collect and professional. Someone asked us yesterday if we were interested in being on a family care board they have that focuses on quality of care and situations parents are exposed to. We told them that we would love to be a part of that. Hopefully things will flow smoother this week when we return and they should.
Elias himself has been his typical up and down self. He is taking everything in stride and is getting more aggressive with attempting to get the NJ out. This includes reaching his hands or toys as far back into his mouth as he can, thus gagging himself to try and get it out that way. Poor little guy. He was very happy to return home and has been enjoying time in the playpen being able to move around some. We have not been able to get a repeat of the sitting by himself yet, but I imagine it is from him being worn out and tired. Hopefully after he returns home this time we will have some time off before more surgery and/or hospital stays so that we can get some of the services started like physical therapy and others. Also I know I mentioned the ability to have broadcast of Elias via web cam on the blog. We have had a lot of people ask about this. First off Thank you for the interest, glad to hear it is a well received idea. We really have had to hold off on that for several reasons. First, we have been in the hospital so much and the internet connection in the rooms are kind of slow and are not really designed to handle that kind of load. Secondly ,when we have been home Elias has been needing so much suctioning and other care attention that it doesn’t make for very exciting viewing. Also Elias hasn’t always been doing his best and we did not feel that is what people really want to see. Once we get past this period of in/out admissions we should be able to get it up and showing more often. Once we do there is a final phase that I want to get working and that is the ability to record the live broadcasting so that if people missed it they can view it whenever they do visit. Ah the ambition and desire to provide entertainment. Thanks for your patience as well as the continued thoughts & prayers.