As I type this update, I do so with hesitation..and that is because it seems that when I finish and hit the post button, something changes. I am going ahead and updating because I am determined not to be superstitious because I believe in God's will and not luck. So I will begin where I left off..
Last Saturday as soon as I updated Week 5, I was on my way to see Harrison. While on the road, my phone rang and I immediately recognized the number as the one to the NICU. My stomach dropped. I had never received a call from them and it was the weekend. Sure enough, it was the nurse practicioner calling to say Harrison had what appeared to be seizure like spells. He was dropping his oxygen levels, doing some stiffening, heart rate was dropping, etc. He had already had 4 episodes about 30-45 min apart. So they were giving him seizure meds, and waiting on the neurologist to come. Weird, but the night before this I couldn't sleep well and I found that I was nervous and more anxious to go see Harrison Saturday than I usually was. I attributed it to things going well and scared to get more bad news which seems to have been the case in the past. But now I know it was my instinct telling me something wasn't right. So after arriving at the hospital, I went in and began questioning the nurse in detail about these episodes. Immediately they reminded me of the episodes I had seen when Harrison was sick with sepsis and on the ventilator. I expressed this to everyone, but most seemed to shrug it off. Later this week, the nurse who was with me when Harrison had similar spells while sick said she agreed that they seemed very similar if not the same. So the neurologist ordered an eeg and she then ordered a 24 hr eeg with video and then extended it for 48hrs. So for 2 days he was hooked up and videoed for seizure activity. His results of the eeg were normal. So they stopped the seizure meds but still had a MRI ordered. The MRI was done on Friday (I just love how all these important tests are always run at the end of the week when there is no one here to read them..I think it is God's way of teaching me patience and playing games with my head ..just kidding God..I know there is a reason) Anyways, the MRI says no abnormal findings but says benign hydrocephalus and something about a large head circumference which Harrison does not have. SO the nurse practitioner is going to have a pediatric radiologist read it on Monday to be sure it was read correctly.
So that was the major focus for the week and so far no other spells have occurred. Praise God..I pray that they will never return even once the seizure meds are completely out of his body which could take weeks for Harrison.
As for other updates:
Heart- The cardiologist wondered if maybe the spells were related to pulmonary hypertension so they had them up his oxygen level to get his saturations higher. They feel that this is beneficial to him so right now they are leaving it. Everything was looking good until today when all of the sudden his saturation levels were dropping and staying low. As of right now, we don't know why..Please pray that this will resolve itself..
Weight- Harrison weighs 8lbs 13oz which is the highest he has been. Please continue to pray that he grows healthy and strong.
Feeding- Harrison started being fed this week. He started off doing well, but once they increased his feeds, he began to have trouble. He seems to gag and vomit if he sits upright and sometimes even when he is fed through a tube. He also doesn't seem to want to feed by mouth. He struggles with the suck swallow breathe concept and it is hard to say what is the root cause of any of these feeding issues. I am concerned about it to say the least, but there are so many reasons this could be happening. It is overwhelming and of course the people I really need to see are not here to answer so I am frustrated to say the least. Please pray that Harrison's feeding issues resolve themselves with time and that this will not be a setback. Pray for knowledge of doctors to help in this area.
Liver- Well this part is the hardest part. At the beginning of the week Harrison was starting to produce stool that was dark and green. Surgeon said that it was exactly what he expected. He had this for a few days and even after the 1st day of feeds. Well by the 3rd day of feeds, Harrison's stools have turned to an extremely pale yellow if not white color. His latest lab results show that his liver enzymes are elevated and bilirubin is up. All of these are signs of poor liver function. So of course, I am thinking the worst that the KASAI is already failing and of course no one has been here to answer my questions. If the KASAI fails, I do not know what this means for Harrison's future. No one has gone that far, so of course I worry. Can his heart be fixed if it is failing? Will they be willing to fix it? I have read once article of a baby who had TAPVR and biliary atresia. The KASAI failed and they decided to do the heart repair only if liver transplant was considered. As soon as they repaired the heart, the KASAI all of the sudden started working.Click here for abstract of article Of course the surgery to repair is extremely risky but it is interesting to say the least. I have mentioned this to every cardiologist who will listen, I even brought it up before he had the KASAI. But please pray for Harrison's liver function. It has to be working in order for the heart surgery to be done. His life depends on this..
Praise- Again, I thank God every day for the wonderful support of the community. There are many of you out there who have never met me in person but you are praying for my son. It means the world to my family and I, and I just can't express my gratitude for all of you. Praise God for Harrison's weight gain and for wonderful caring nurses.
Prayer- Pray for Harrison's stability in all aspects of vital organ function. These are his life lines and so important to his overall prognosis. Pray for my family that we will continue to seek God's guidance and see his will in all of this. Pray for the doctor's who care for Harrison that their eyes will be opened to his most vital needs.
Thank you to all of you who lift up Harrison to the Lord in prayer. I know he hears our cries and prayers. Keep'em comin...