Jonathans version of Had a Bad Day
(I just found this and I love his perspective. We had the same, yet very different experience 7 years ago.)
Hey everyone,
Thanks for all your prayers and concern. I just got back from the Hospital to take a shower and change my clothes and thought I’d drop you a line. I was going to do this yesterday, and actually started an email to you all, but I had to rush back to the hospital, but I’ll get into that later. I know most of you know the story, but I’ll give you my version
Ben had been sick for the last 2 weeks with a cold. He hadn’t been gaining weight and he had been spitting up most of his food. On Saturday night, I was holding him on my stomach for about 2 hours and I noticed that his arms and legs were dusky colored (more red-purple than pink) and that they were cold. I mentioned this to Beth and we noted that he had been fairly lethargic that day. On Sunday, I watched Ben during Church and again he was lethargic and had dusky colored and cold extremities. He also wouldn’t fall asleep even though he normally took a mid morning nap. On Saturday, I changed a fairly poopy diaper, but on Sunday his diaper was pretty dry. When Beth got home, she was concerned about him for the above reasons. We had an appointment for later in the week, but Beth felt like she should do something sooner. His G-Tube had been a little leaky, meaning that food would come out where the tube went into his stomach. She started calling some people. She called our in-home nurse, our pediatrician and our nurse from the NICU and they all agreed that we should take him to the ER. We finished a second feed for the day, loaded up all the kids and I dropped her off at the ER at UC Davis. This is where he spent 7 weeks in the NICU and where they had a Pediatric Intensive Care Unit. We were a little concerned about a ER visit – you can often have to wait a while to see a doctor, but when they saw that Ben had a trach, they got him right in. They began to try to get a IV line in him and tried for quite some time. I called Beth and she couldn’t talk, but explained that they were trying to get an IV in. Beth and I thought Ben was sick and that he might have to stay in the ER for observation for a little while. Not in anyway, did we possibly think that Ben’s condition was life threatening.
Here, Beth and my experience diverge. I will give you my point of view first. At about 5pm, I got a phone call. The woman identified herself as a UC Davis Social worker and confirmed who I was. She then stated, “You need to come down to the Hospital, your son Ben isn’t doing very well.” I was very surprised and asked. “He’s not doing very well?” she replied, “No he isn’t doing very well at all”. I told her I’d be right there and hung up. I called to the kids that they needed to get their shoes on and that I was taking them to the neighbors. I grabbed my keys, an extra set and the kids and went next door. Luckily the neighbors were home. I handed the keys, the kids and said. “We had to take Ben to the hospital today, and he isn’t doing well and I have to go back to the hospital. As I drove to the Hospital, I called both my Dad and Courtney and asked them to pray for Ben. I wasn’t sure about what state Ben was in, but I considered the possibilities. The hospital is about 25 miles away, and I had good 30 minute drive to think about it. For Beth’s point of view, she watched as each nurse tried unsuccessfully to get a needle into Ben. At one point they tried to get a special IV into his Bone marrow. They have a needle that goes into the bone, and quite frankly it’s like putting a small nail into you. In Ben’s weakened condition and with the added stress of being poked and impaled he went into cardiac arrest. His heart rate dropped dramatically and the medical staff began doing chest compressions. In addition to compressions he needed meds to help restart his heart rate. Without an IV, he could not get those meds. They finally got a line into a vein near his right clavicle and were able to bring his heart back to normal beating. They were doing compressions for about 4 minutes. During this ordeal, they asked Beth to hold Ben’s hand and if she wanted anyone notified. She told them to call me and that was when I got my phone call. After they got him “back”, they prepared to move him upstairs to the Pediatric Intensive Care Unit (PICU). Beth called my and told me what had happened. I was just about to turn into the hospital parking lot.
We went up to the PICU and spoke with the doctors. The original line in the vein by the shoulder wasn’t in properly, so they needed another line. They kept trying to get a line in anywhere they could. Ankles, hip, wrists, shoulders, elbows, skull, and leg joints. Multiple people could not get an access line in. They realized he was very dehydrated and this was contributing to smaller than normal veins. The finally got another bone IV into his hip and started giving him more meds. They continued to try to get a regular IV in. I asked the doctor for a moment with him and anointed him and gave his a blessing. They continued to try to get a good line and were still unsuccessful. A short while later, the hip bone IV came out. Ben was so weak and dehydrated that he had a very low blood pressure. Only the meds were able to keep it high enough and without the IV providing those meds, he went into Cardiac Arrest again. Beth was on the phone in the hallway and I quickly got her and told her that Ben had crashed. We ran back to his room and watched as they began chest compressions again. His room filled with people and they all began to help out. Some were writing down what was happening, others were trying to get a line so that they could administer meds. The hallway filled with people as interested Med students came to learn how this situation would be handled. I put my arm around Beth as we helplessly watched the minutes go on. We both began to question whether they would be able to bring Ben back. After 9 minutes of compressions, his heart beat had resumed. They had succeeded in getting two additional bone IV’s in his right leg and were able to give him the meds he needed. They had brought him back once again.
They again continued to try to get a good line and finally had a cardio thoracic Surgeon drive in from his home and he was going to surgically try to insert an IV. He successfully got a line into his left femoral vein (leg – hip joint) and we all breathed a sign of relief. The doctor informed us that Ben was still very sick and that he was still very critical but that they could now begin to treat his problem. Beth’s sister Sarah and heard about Ben and had driven her family up to Sacramento to help out. Sarah came up to the ER and remained for a little while. Once she got there, I decided to go home to retrieve some clothes for Beth and I to stay the night. I had been home for about 2 minutes and began to write this email to you. I got about 2 sentences down and Sarah called and told me that Ben was in Cardiac Arrest again and that I needed to return. I immediately jumped into my car and raced back to the hospital. Sarah left her phone on and I listened in as I drove the 25 miles back to hospital. I knew the situation would be resolved before I arrived one way or another, but I didn’t really feel like they wouldn’t bring him back. I made the trip in 20 minutes and returned to his side. Needless to say, Beth and Sarah were fairly stressed. This time the probable cause was air in his lung cavity. They think that when they attempted to get a line in his chest, they may have introduced air into the space behind the lung. This compression on the lung and heart is what likely sent him into cardiac arrest. Once they brought him back, they made a small incision in is side to and released the air via a tube.
During the x-rays to determine if there really was air in the lung cavity, they noticed some very troubling details about his bowel. They had already seen some x-rays and they were worried. The x-rays indicated that the intestines were inflated with air and this lead them to think that part of the intestines may have died. The called in a GI surgeon but he was at another hospital. Additionally, Ben wasn’t stable enough for a trip to the OR. At about 2 am, the GI Surgeon arrived and Ben was a bit more stable. After a couple of x-rays and comparisons with other x-rays of Ben on file, we spoke with the surgeon. He felt that something must be blocking the intestines. Either they were kinked on themselves are something else was the problem. The doctors felt that a bowel problem could be the answer to his problem and wanted to take a look at his intestines. A dead gut can be quite serious and they decided that an exploratory surgery was absolutely necessary. Had they found any dead gut, they were going to remove it and rejoin the intestines. The called down and freed up the OR and is surgery was planned for about 4 am. I went with Ben down to the OR and spoke with the staff just prior to the surgery. I remember the anesthesiologist say to me. “You need to know that this is an incredibly high risk surgery, but necessary or he could get even sicker. The risks of complications and death are even higher”. I said yes and kissed Ben before I left. Beth and I waited up in his room and napped until the surgery was over. At about 5:45 am they woke us up and said he was returning to his room. I was relieved that he had made it through surgery. About 5 minutes later, a nurse came in and said that he was unstable and there would likely be a lot of activity when he would return. After another 5 minutes, the charge nurse came in a said that we needed to come down to the OR right away. I could tell that she was visibly shaken, and felt this didn’t bode well. A moment later, as we were at the elevators, she informed us that Ben was in Cardiac arrest. This was the 4th time. We went straight to the OR where we met a nurse. She apologized but insisted that we don an apron and hat. Then she instructed us to “run” to his room. As soon as we arrived, the main doctor we had been working with was there and told us they had brought him back already. It all happened so fast that Beth and I really didn’t have a chance to react.
They brought him back up to his room and we spoke with the doctors. It turned out that his intestines were fine, but not working due to lack of blood pressure and the dehydration. I asked our doctor if the fact that they didn’t find anything wrong with his bowel was good news. He said this was fabulous news. They checked his entire intestines and stomach and took out his appendix. The anesthesiologist was able to put in another IV line into an artery. This would be extremely useful as now they could constantly measure his blood pressure. Once he returned to his room they began the slow process of stabilizing him. The rest of Monday and all of Tuesday have been relatively uneventful. They have been able to control his blood pressure and are no longer giving meds to control it. They were giving him tons of fluid, which caused two things. One, he has swelled to 150% of his normal body weight and two, he urinated a ton. More than an adult would urinate. Starting early Tuesday morning, he regained consciousness and they have been giving him sedatives and pain medicine to compensate. He is still on a breathing machine and the fact that he has a trach doesn’t really help. He gets irritated by fluids in his throat and this gets him agitated. Most of his blood work is coming back very good and I think some of his swelling has come down just a bit.
There is some concern that he may have a problem with his adrenal glands, but there is another theory that the root cause is just a very serious infection. There is no doubt he has an infection, but whether or not his adrenal, pituitary or hypothalamus glands are functioning correctly is still questionable. The infection theory goes something like this…When Ben was sick with his cold, he had a weakened immune system. All people carry staff infection on their skin, but the skin protects you. When Ben had a cold, the seal his body created around his G-tube broke down. Either, the staff infection came in though his G-Tube open sore, his trach stoma, or some other open wound”. This will remain a mystery. Suffice to say, in his weakened condition his body couldn’t fight off the staff infection. The infection went septic, meaning it entered the blood stream and pretty much had free roam over his entire body. It spread quickly and caused his blood pressure to decrease and this in turn affected the functions of many organs. His cold hands and dusky color were symptoms of the low blood pressure as was his lethargy. Had Beth not brought him in soon, he would have eventually gone into cardiac arrest at home, which would have been very, very bad. Often times, this sort of infection won’t show signs of a fever, but may be noticed in a decreased appetite. Because Ben was fed though the G-tube, (whether he wants to or not), we didn’t have this luxury. I am thankful Beth was finally inspired to bring him in on Sunday.
There exists a possibility of brain damage from the multiple arrests, but his activity since he regained consciousness his very positive. He also might experience liver failure and even kidney failure. The effects of an arrest can be fairly damaging. They did a sonogram of his heart and didn’t find anything wrong there. His lungs are still very sick and he can’t breathe on his own. He has about 90 needle pokes and probably 8 – 10 bone IV pokes, he has a 3 inch incision across his belly, no appendix, a small incision on his left breast and is very swollen, He has a catheter, one IV in his right hand and one in his right leg. He has a tube down his mouth and rectal thermometer, not to mention his existing trach and g-tube. Other than all of this, he is doing rather well considering.
It’s a little therapeutic to write this all down and his great for personal history. I thank all of you for your constant support and prayers.
Jonathan
