Friday, February 26, 2010

Week 10 and 11 Update

These pictures are a progression
1st- Family pic before surgery 2nd- Picture of Harrison immediately after surgery 3rd- A picture of all the pumps needed to sustain and monitor Harrison after surgery..AMAZING 4th- Harrison on day 4 post operation- A true miracle!

Week 10 and 11 I have squeezed together since the two weeks had lots of things going on in preparation for Harrison's Heart Surgery. Harrison had his heart surgery on Monday February 22, 2010. It was his 11 week birthday. Harrison was supposed to have his heart surgery on Friday Feb 19th, but due to elevated white blood cell count it was postponed. So to back up and get to where we are today, I will break events down by my usual categories.

GI/Feeding- Due to Harrison's vomiting episodes a formula change was made and they got him to full feeds, but he was having diarrhea. They decided to cut his feeds in half to see if it was a volume issue causing it. This reduced his stool output but it was still watery. At this point, GI decided to start a medicine for overgrowth of bacteria in the intestines to see if it would help. They started the medicine and within a day his stools started to firm up. He still was only at half feeds but they decided to leave him there since he was to have surgery on Friday. Even though surgery was cancelled for Friday, they kept him on half feeds since it was rescheduled for Monday.

Liver- Several liver function tests were performed since he was getting ready for surgery. On Thursday before surgery, his bilirubin was 14 and liver enzymes elevated from the previous week. They did another liver function test the morning of surgery and his bilirubin was 11. So the had gone down. This seems to be a pattern with his numbers that they fluctuate. Right after surgery Harrison's bilirubin was 7 and 48hrs after surgery it was 9 and liver enzymes were way down. Now, it should be mentioned that Harrison was on the bypass machine which also cleanses the blood and could explain the lower numbers. The heart surgeon is very interested in seeing if this surgery does help his liver function which is what the article I showed them said happened for that baby, but as you can see by the 2nd day post op numbers,they are rising which is not a good sign. Today, Harrison looks very jaundiced again, so it still tells me that it is not functioning well. His urine is very dark which also shows poor liver function. But at one point, Harrison's g-tube drain had yellow colored secretions which is a first for him. That means that there is some bile flow but it appears that it is not constant. Please pray for Harrison in this. He needs good bile flow in order to prolong a future liver transplant along with the complications of liver failure which can also take his life.

Heart- Before Heart surgery, Harrison had to always be on nasal cannulas to help with oxygen. If he cried he turned a nice shade of deep blue or purple and his oxygen levels dropped immediately to alarming levels. He also hardly cried for long periods of time because it was so tiring and it made the mere act of eating by mouth exhausting. After heart surgery and removal of breathing tube, Harrison cried, or I should say squeaked for a least 20 mins and remained pink the entire time. He has never had these high levels of oxygen and it is amazing to see the difference. Harrison had 3 repairs to his heart and all were a success and totally repaired according to the surgeon.An echocardiogram done following surgery did show that his right ventricle is not squeezing like they would like to see, but this is also the side that has not had to work as hard due to the defect. As with any surgery, there can always be complications. Harrison had some colored mucous when on the ventilator which made them suspect lung infection. Tests were done and today they revealed that it was bacteria that was normally found in esophagus and lungs which is good. He still has a very wet cough and due to his being sore from surgery he doesn't want to cough hard enough to get it out and it can affect his oxygen. Please pray that Harrison will continue to make progress in his healing from the surgery and his lungs will fully recover.

Praise- Praise for a successful surgery and minimal time on the bypass machine. Praise for skilled doctors and nurses who are able to care and treat Harrison. Praise for the miracle of his life.

Prayer- Pray that Harrison will continue to make great strides in this recovery process. Pray for his feeding to be successful because according to those in the medical field, cardiac babies tend to have difficulties feeding after surgery. Pray for Harrison's liver to thrive now that it has a repaired heart to supply it with new blood and more oxygen. Pray for Harrison's heart that it will only grow stronger with time.

A little side note: Harrison has now been in the hospital for 11 weeks which is just shy of 3 months. Since this time, he has been moved to different areas in the NICU and has had many "neighbors" who are also there fighting for his/her own life. In every pod that Harrison has been in, he has had a neighbor that has lost his/her life. Having spent so much time in the NICU you come to know the families that are there and it is heartbreaking to see and hear when their little one did not make it. I share this with you not to bring sadness or gloom, but to help point out the miracle that life really is. I feel so blessed for each day that I wake up and my son is still here. I also share this to show all those prayer warriors out there, that when you pray for Harrison, he has truly been blessed with the gift of life and we should remember to praise God and give him the glory for all the ways in which he has blessed Harrison's life.

Tuesday, February 16, 2010

Week 9

My Valentine! :)

Once again, I am running behind on the updates but again I was waiting on some test results to come in and confirmation of surgery dates.

Overall the week for Harrison has been ok. There were some bumps but we have been hanging in there trying to determine what needs to be done.

Heart- Heart still doing well despite the defect, but he is scheduled for his open heart surgery this Friday, February 19th. This is the biggest surgery yet and is technically dangerous since Harrison's liver is not in the best state. Liver function plays a major role in blood clotting and during surgery they pump the body full of Heparin in order for the blood NOT to clot so he has to be able to help them out by clotting in order to survive the surgery. Please pray for his clotting factors to be at a good level for surgery.

Liver- His liver enzymes came back really elevated again. It is frustrating, but at this point they are focusing on the heart surgery and will revisit the liver after surgery. There are still many factors playing into these numbers since Harrison has had to be on and off the TPN mix for feedings due to his trouble with feeding, illness, etc. and this TPN can affect liver enzymes and bilirubin.

Feeding/Digesting/GI- After some battling with doctors about Harrison vomiting with his feeds, they finally decided to start from scratch to determine the cause. He had an abdominal ultrasound done and all came back normal so nothing there that would be contributing to his vomiting or diarrhea. They started him on another formula and moved slowly in progression and he made it to full volume without any vomiting. But the diarrhea continued. After some further testing, they feel that he has an overgrowth of bacteria in his intestines that could be contributing to this so they are treating it with an antibiotic. Hopefully this will improve his stools and digestion and he will be able to break down these nutrients.
Due to his dumping of feeds he was put back on TPN and may remain on it until surgery.

Therapy- It is baby steps but therapists are working on head control at this point. He is trying every day but it is baby steps. I definitely see overall improvement of movement, but we still have a long way to go. Heart surgery will create another setback in this journey, but his ability to heal and time of recovery will dictate how much. Please pray for him in this area.

Unexpected events- Harrison did show signs of another fever over the weekend and they immediately began treating him while testing and ruling out bacterial infections. All tests came back negative and he showed no further signs of illness..Praise God!

Prayer- Please pray for Harrison's upcoming heart surgery. Pray for the doctors' and surgeons' wisdom, knowledge, and skill as this procedure is completed. Pray for a complication free surgery and recovery. Pray for God's divine plan in it all and that it be revealed. Pray for our family as we prepare for this surgery. Pray for strength, courage, and peace.

Praise- For Harrison's overall good week. Praise for a disappearing illness. Praise for allowing us another week with our precious son. He has touched the hearts and lives of many and I am thankful for that.

Monday, February 8, 2010

Week 8

Well I am a little late on the week 8 update but lots of things were taking place at the end of the week. The overall status of the week was good, but Harrison did come down with a fever, diarrhea, and vomiting. He is now doing much better but please read on for the amazing turn of events that took place.

Heart- So if you remember in one of my earlier posts, I mentioned I found an article regarding how the TAPVR defect caused problems with the KASAI procedure in a baby who also had biliary atresia. I have been showing this to doctors since before Christmas to no avail. Well I decided to ask the cardiologist who diagnosed Harrison with the defect in utero some questions I had about the article. He mentioned there were some other issues with Harrison's heart that made them want to wait til he was bigger to do the surgery. So I began asking about future plans if the KASAI didn't work and we would be faced with the same dilemma as this baby in the article. He looked over the abstract and said that he could see where it had some good theory and he would like to look over it. I explained to him my concerns about waiting to do the surgery especially after seeing that the boy in the article was very similar to Harrison and his KASAI was failing but suddenly started working after having his heart repaired. So the dr wrote down the article and came back the next day to say that what he saw in the article had some validity and he would like to discuss it with the surgeon. I couldn't believe it. My Googling finally was being of some use. I also couldn't believe that doctors were finally listening to me.Too me this was true evidence of God's divine plan..I found this article which is now hopefully and prayerfully going to only help little Harrison in his journey. A couple of days later I was informed that after review of the article both cardiology and surgery felt it would be of benefit to go ahead and do Harrison's surgery sooner rather than later. On Friday I was told that he would have his surgery on Monday..with that being got cancelled due to Emily getting sick which I will discuss later. So we are waiting now to see when Harrison's surgery will be rescheduled to.

Liver- On Monday, they ran his weekly liver function tests. His bilirubin had gone from 8 to 12 and his liver enzymes were elevated. His stool was still a pale yellow and he looked very jaundiced. I almost expected these type of results. I was even more disheartened because he was now off the TPN which can affect these numbers and he was still elevated and of course GI drs were still saying you have to give it time. Well..on Tues I noticed that Harrison's heart rate was higher than normal and he felt warm. I took his temp and it was higher than normal for him, but still in the normal range so no one else was concerned. But of course I knew something was is God given mother's instinct. I also noticed his stool was watery and they said they would watch it. Later that evening, I kept calling and the nurse said he had spit up a couple of times and they were having to turn up his oxygen levels to a higher % just to keep his numbers good. Needless to say I was anxious to get there in the morning and push the doctors to investigate this further. When I got there, I touched him and he was warm..I took his temp and he was 99.9 so I told the nurse. She said that he got to 100 over nite so now I was waiting for the doctors to round because something was going on. The nurse went to a meeting and I went to pick Harrison up and he was burning up..I checked his temp again and it was 101.1. I immediately got another nurse who called the doctors. They came by and ordered all kinds of tests including ones for sepsis. It was quite nerve wracking. He was now dumping (diarrhea) almost half of his food at every feed which was not good. He was sucking on his pacifier like it was going out of style which was also unusual and of course no one was concerned. One of the tests ordered was another liver function test. It came back as elevated again..his bilirubin was 12 and now was 13 but his liver enzymes had come down some..I had already mentioned the possibility of cholangitis which can result from the KASAI and they called GI who had him started on an antibiotic just in case. Throughout the rest of the week the results for bacteria type infections were turning up negative which was good, but it meant probably cholangitis but maybe also a virus of some sort. There is no test for cholangitis. Since Harrison was dumping most of his food,they had to put in an IV to give him fluids (and after 12 hrs of this he stopped sucking on his pacifier like a crazy person..I tried to tell them it wasn't normal.) They also had to stop his feeds to try and help him get his bowels to stop dumping. So he went back on TPN. The most interesting part of this ordeal was when he started dumping his stool color was not a yellow brown..much closer to the color it should be. It changed so much that the cardiologist even mentioned it looked more like normal stool. Over the next couple of days the color of his stool remained the dark color and I was amazed but in wonder. NO one,not even GI had an explanation for the sudden change..well if you remember they were also looking at doing his heart surgery on Monday so they were running liver function tests for surgery so he got another one on Saturday. That makes three..Monday- Bilirubin was 12 and liver enzymes elevated, Wed- Bili was 13 and liver enzymes slightly lower, Saturday- Bili was..HOLD ON TO YOUR HATS..9 and liver enzymes were much lower than Wed....AND..his stool was starting to become more formed was still staying DARK.. NO one has an explanation other than that there has to be some bile flowing. Praise God!

Oxygen- Harrison's oxygen had to be increased while he was sick, but he is now doing better and is able to have lower levels.

Therapy- Harrison has started to receive speech (for feeding), occupational therapy, and physical therapy. I was very excited to see all of these because they are so important to his growth and development. He struggles with tiring easily and feeding is quite the chore. It is hard to say what is the cause of any and all of these because there are so many factors.

Emily- Emily saw the endocrinologist and GI doctors this week. Her appts went well and endocrinology wants to do an ultrasound on her thyroid just to rule out any possible issues. Regarding the canceling of Harrison's surgery..Emily came down with an awful intestinal virus on Saturday evening that eventually led us to the ER for fear of dehydration. She had a fever of 103 and was sick for over 8hrs straight. Today she is doing much better, but we were concerned that with Harrison having such a big surgery that we could not give her the care she needed and the possibility of infecting him was also a concern so we called and told them the situation and they were very understanding and postponed surgery.

Today..Harrison is doing well, he no longer is on the TPN, he is back up to full feeds and he looks and feels much better. Emily is also doing much better. Praise God for all of these.

Prayer- Pray for Harrison that he will continue to thrive and develop. Pray for his strength in the face of the biggest surgery yet. Pray for wisdom and guidance in the doctors and nurses who care from him. Pray for the Emily as we continue to look into the thyroid issue. Pray that it is simply nothing as they suspect. Pray for our family that we will remain healthy and strong physically, spiritually, and mentally, as we prepare for Harrison's surgery in the upcoming weeks.

I also wanted to share some amazing insights on Harrison. These are just a reminders of the incredible aspects of life that only God could provide.

1. 75% of babies with chromosome disorders never make it to birth..Harrison did..Praise God!

2. I was told that 99.5% of people who have polysplenia have what they call an interrupted inferior vena cava. This can complicate liver transplants. Harrison has an intact inferior vena cava. He is the .5%. Praise God!

3. The article that led doctors to revisit the timing of Harrison's heart surgery states that there were only 3 cases documented of patients who have both biliary atresia and TAPVR. OF these 3 cases no patients lived past the age 3 due to complications of these issues. In the case of the boy being reported, doing his heart repair saved his life and was thriving a year later after having his heart repair. This piece of literature is now being used to educate doctors in Harrison's case. Harrison is rare, his condition his rare, but in God's eyes he knows every intricate path of his tiny body and he is beautifully and wonderfully made. Amazing how these small things have come together to have such importance. Truly the hand of God.

There are many more and I could go on..but I was just reminded of these this week.

So praise God for the miracle of Harrison's life. Praise for Emily's quick recovery in her illness, and praise for the care of the nurses in the NICU.

Again- Thank you to everyone who continues to share your support love and we are entering the 9th week of this journey. May you each be blessed for your kindness and grace you have shown to our family.