End of Week 4 Update!

Wow! It is hard to believe Harrison is a month old. I feel like I have missed so much of his life trying to absorb all that it is happening. So much happens so fast and this past week's events are a true testament of this.

Harrison was diagnosed starting last weekend with an "infection in his blood." After realizing that this was also called sepsis, I quickly understood the seriousness of this type of infection. These infections are often seen in preemies, babies, or patients that spend a long time in hospitals. These types of infections can take the life of a patient quickly because they start attacking all the organs. High Dose antibiotics were immediately started and given intravenously but these also have side effects such as hearing loss if amounts get too high. Well Harrison was on three antibiotics but they had to hold off on one because the levels got too high. Harrison went immediately from looking like a healthy baby recovering from surgery to fighting for his life. On Saturday while my step dad and I were visiting with him,the nurse and I were turning Harrison from one side to the other, changing his diaper, and taking care of his other needs as we always do every 4 hours. As I was changing his diaper, I looked up and he was blue in the face. I immediately looked at his levels on the monitor and they were in the 30's (they should be at least 70 or above)The nurse immediately asks the respiratory therapist to start bagging him (breathing for him with the pump)and then another nurse steps in to help. I step back and watch and so does my step dad. We watch the monitors as his heart rate drops into the 20's his respirations drop into the teens and sometimes lower, and his oxygen levels drop into the teens. It seemed like an eternity but in reality was about 5 minutes but he slowly recovers and stabilizes. My step dad and I stay until we see he has stabilized and we both leave the nursery somewhat numb. We took a few minutes to debrief ourselves from such a traumatic site. It was a realization of how quickly the infection took over his body and how sick he really was. Jamie and I decide to stay the night since things were so shaky.
The next day (Sunday)brought on an entirely new set of worries I pray that no parent ever has to deal with. We were approached by drs to discuss all of Harrison's issues. They asked Jamie and I to essentially look at the big picture and Harrison's quality of life. They were unsure if he would be a liver transplant candidate and were unsure of his neurological development. They said we needed to discuss this as a couple and decide what we felt was the best route for Harrison. I knew what they were saying without saying it, but I was also a little confused. I knew that Cat Eye Syndrome doesn't always present with neurological issues, it actually says that most fall in the normal to mild mental function, and Harrison's cranial ultrasound showed no abnormalities. But my next thought was why would the GI doctors offer to do the KASAI procedure which is only a temporary procedure to buy time for a liver transplant if he wasn't a candidate and based on what I had read, nothing would eliminate Harrison from a liver transplant.So I just sat back and thought was there something I wasn't being told? Shortly after this conversation, low and behold the GI doctor comes into to discuss the KASAI procedure which was to be done this past Wednesday. Again, I was confused, but he then told me that Harrison would qualify as a liver candidate but they didn't discuss this yet because it was not an issue at the time. I realized then that we needed to get a meeting with all the doctors so they could communicate with each other and we could get all the facts. So I requested that this meeting take place before Wed's surgery.

Meanwhile, I ask the GI doctor to review this information with Jamie. As he is doing this, I look up at Harrison's monitor and his respirations were below 10. They should at least be in the 20's. I looked at him and he looked so peaceful but then his heartrate dropped and I quickly called the nurse who called the respiratory therapist. I looked at him again and he was blue from the chest up. I had this eery peace over me during this whole process. I really felt that God was going to give me an answer through this so I asked the nurse what could I do. She said, tap his feet and rub his chest. AND I did..they suctioned his lungs and they were full of fluid from the infection..and so again Harrison recovered but more quickly than the day before. I knew then that Harrison's journey was not over, and I was to keep fighting for him. No doctors words could tell me differently.

That night my mom and I decided to stay overnight just to be close to him. Again, we were visited by another nurse who began to question me on the same issue discussed earlier that morning. She gave a grim picture of liver disease and wanted to know where I stood with Harrison. I reminded myself that these doctors and nurses are human and so I responded with "right now, we are dealing with the infection and I can only do this one step at a time." I told her that through this whole process my gut instinct had always been right and she wanted to know what my gut was saying now. I told her that all I knew was that "right now he is fighting this infection and that we would take it one step at a time." At this point I really felt that these doctors and nurses were losing hope in my son so now I was nervous to meet with everyone on Tuesday to discuss him. I was not scared of them, just the news they might bring.

On Monday, Harrison had a much better day and he was showing signs of recovering. By Tuesday, his blood culture was negative for infection and I knew we were on the upswing.
Tuesday afternoon Jamie and I met with all of Harrison's doctors and nurses which took up an entire conference room. I expected to hear what I had been feeling all weekend.
But I was wrong..the neonatologist began by discussing how all of Harrison's issues could be surgically corrected except the liver issue. And that it was a process that would eventually lead to a liver transplant. I knew then that maybe they had hope that Harrison could do this. Then the surgeon and GI doctors reiterated the surgery of the KASAI and gave its prognosis and we discussed our questions about prognosis of liver transplant recipients. I was quickly told that the information I had received from others was not the standard and that outcomes were actually better than what I had been told. I gave them every piece of information that I had read, heard, seen, or dreamed, and nothing I gave them even gave them the slightest doubt that we shouldn't go through with the KASAI. They told me I was right in taking it one day at a time. I was so relieved that I couldn't believe my own ears. I really couldn't believe how things took such a turn. My mom had been saying that this meeting was God driven and that it would provide answers for someone and it would help someone. I thought nothing they could say would change my mind that I was going to keep fighting for Harrison and the funny thing is that what they said didn't change my mind, but it reassured me that God's hand was definitely in this and I already knew it. His surgery was postponed til Monday to give him time to heal a little more.

Throughout the week Harrison continued to get better, and as of today Harrison is now on room air. He even acts different than before the surgery but in a good way. Something took place in Harrison throughout all of this and all I can say is it definitely the power of prayer. So please continue to pray for him and this upcoming surgery. We will not fully know how well this procedure works for about 3 months after. As the surgeon said, it is like watching grass grow.

Praise- I started this blog so that others who might have a child with Cat Eye Syndrome might find help, peace, comfort, or friendship in Harrison's story. I was contacted by someone whose child is 6 wks old and has CES. I am elated to be able to help in any way I can. I have also been contacted by others who have children with similar anomalies and I am comforted in knowing that I am not alone in this. Praise for Harrison's recovery of the infection as he will be treated for 21 days.

Pray for the upcoming surgery as it will last between 4-6 hours. Pray that the doctors hands will be guided by God for they are creating a way for bile to flow with their hands, but connecting it to something that is seen only at the microscopic level. Pray for Harrison's recovery and that it is uncomplicated. Pray for Jamie and I as we enter into this next stage of Harrison's journey. The answers will not be known immediately and patience and understanding is all that we can offer.

Thank you to everyone for your kind words, prayers, support, meals, cards, and emails. They mean a lot to my family and I.