Sunday, January 31, 2010

Week 7 Update

So week 7 has come to an end and I can say that is overall has been a good week. There have been some hurdles but overall we have made major steps. First, I finally was able to tag down the GI doctor to ask about levels. Of course they will not say the KASAI has failed even though his levels went up the past 2 weeks because he was receiving IV feeds that affect his liver as well as he was still healing. They said he would need to be on full feeds for a while to really get a good look at what his liver is doing. So here are the latest updates

Liver- Liver panels will not be ran until Monday so I dont know what they are yet. Please pray that they will have come down. His stools still show acholic color (pale) but hopefully we will see a turn around on this too.

Heart- Cardiology says his heart is still doing good and there are no changes at this point.

Feeding-Harrison's reflux really reared its head this week. After I inquired about something they kept saying Harrison had done surgically that wouldn't allow him to reflux, they realized they made a mistake and Harrison actually never had this procedure done and that is why he was able to reflux. So meds were started to help relieve the acid from the reflux. The first didn't do much, but the second med seems to help much better. Also my breast milk finally came to an end which meant he had to go to formula. Well the formula GI doctors recommended made him vomit everytime so they switched formula to a hypoallergenic kind and so far his reflux and vomiting seem to have disappeared (makes me wonder if he was allergic to something I was eating)He was able to come off of all IV feeds and they removed his IV line that he has had since being born. Tomorrow he will be at his full feeding level.

Breathing- Harrison is down to 1 liter on his oxygen and he may be able to come off of it all together.

So with all of this being said, Harrison has made great progress. He is gaining weight, acting better every day and they have even mentioned moving him to progressive care which is the step down unit before going home.

Prayer- Pray that Harrison will continue to make progress. Pray especially for the function of his liver. Having his native liver is the best possible scenario at this point. Pray for his development that he will continue to get stronger and not have to rely so much on tube feedings.

Praise- For a good week overall and that he is making progress to being able to come home.

Special Prayer Request- Pray for Emily as we have her thyroid investigated further. Her thyroid levels came back as normal, but we will be going to an endocrinologist to have it looked into. Please pray for the doctor's wisdom in treating her.

Thank you to everyone again for your love and support. Those of you who help prepare meals are angels and you even delivered admist the winter wonderland. It has been wonderful. Thank you to everyone who sends comments, emails, cards, etc that are so loving and supportive and most of all thank you for all of your prayers. You all have been a blessing to our family.

Sunday, January 24, 2010

Week 6- Waiting for many warm days so I can say for sure it is Spring

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...

Saturday, January 16, 2010

Week 5 Update

This week began with Harrison's KASAI surgery. In this procedure, the surgeon attempts to create a way for bile to flow by taking a piece of intestine and connecting it to the liver where there are hopefully microscopic internal ducts that will secrete bile.

Harrison's surgery began around 8am Monday. The surgeon had told me they would give hourly updates but they would be very vague. He said if anything was to go differently from what was discussed that he would personally come out and talk. The procedure could take anywhere from 4-6 hours. Well at about 10:50 the surgeon came out. My stomach dropped because it was so early. He then said he was done..Whew! then he sat down to explain that the surgery itself went well and that they were able to do what they needed to do, but he also would have liked to have seen more 100 micron ducts (this is the size needed to create good bile flow.)So now it would be up to lab results and Harrison's stool color for the next 3 months to determine how well and if surgery was successful. In some ways this is a good thing to know I can look at his stool color and know what color it should change to, but in some ways it is bad because it can easily become an obsessive assessment tool. One that could drain the joy out of today if I am not seeing what I think I should see.
When we went back up to see Harrison the nursery was closed. The nurse said two different things were going on and she couldn't tell us when it would reopen. I could tell that there were lots of nurses, doctors, hurrying in and out of the nursery. When the nursery finally reopened, there was a white rose on the nursery door indicating a baby has passed away. I later learned that this was Harrison's old neighbor who had passed. My heart was saddened for this family but it also reminded me of the reality of the babies in these nurseries. Every day that they/we are here is a miracle and blessing from God and it should not be taken for granted. When we finally got to see him he was doing really well and looked really good. I stayed over night with my partner in crime (my mom :))to be close in case things took a turn. The following morning we went to visit and he was still doing well, but they were keeping him heavily sedated to keep him from moving. They encouraged us to not talk or touch him so that he would not startle or move. His incision was only be held closed by steri strips instead of stitches. This was because when they went in they found what they thought was a pocket of pus that could be possibly and infection and so they sent it to the lab for a culture and closed the area with steri strips so they easily open it back up if it became abscessed. Of course this wasn't what I wanted to hear, the possibility of another infection. Harrison continued to do well throughout the day.
The following day, Wednesday, I returned to find that Harrison was struggling a bit with the respirator and they had to turn it back up..He was more swollen than the day before and that the culture had grown something and it was now being sent to determine what type. I was disheartened to say the least. Throughout the day Harrison remained fairly stable. The surgeon came in an looked at his wound and said that everything looked good but that he didn't want his feeding for several more days. He also looked at his stool and said he thought he saw bile but would have to wait and see. Then he said that his bilirubin and liver enzymes were down from his pre surgery labs but he also didn't want to "call it spring based on one warm day." So really only time would tell.
On Thursday, Harrison was even more swollen than the day before. He had gained almost 14oz of fluid. His head had a pocket of fluid at the back and his eyes were almost swollen shut. They were using diuretics to help flush the fluid but it would take a while. Even though he was swollen, he was doing well otherwise. They even mentioned feeding him that afternoon, but I told them the surgeon said no. They called the surgeon to find out I was right..Ugh! Again another lack of communication. Come to find out, the surgeon never wrote this in his post operative notes. Thank God I was there to catch this.
On Friday, I came in to find Harrison looking completely different. He was barely swollen and they were actually getting ready to take him off the ventilator. They were weaning him off his pain meds and he was awake and alert. They removed the ventilator and he did really well. He was looking around and staring at his mirror in his bed (one of his toys he has :)) It really was amazing to see the difference today from yesterday. I also read him a book about going to the doctor that Emily gave him. He liked it. He now was producing more stool, and again I found myself obsessing over the color. I am trying to force myself not to do this, but it is really hard. It is in God's control and not mine so I try to remind myself of this.
So overall, the week is good. The infection at the incision site was found to be the same infection that made him septic, ecoli. So he was already being treated for it. They will watch it for the next 7-10 days. But it was really nice to be able to touch him, kiss his head and face, and talk to him.

Please pray that Harrison's lab results will continue to reveal the KASAI is working. Pray for his continued recovery from the surgery and that we will be able to bring him home soon.

Praise for a good recovery and that there are some signs that this surgery may be working.

Thank you again to everyone who has provided meals, called to say they were praying for us, watched Emily, and were there in any way to show support and love. We really appreciate it and it has been wonderful.

Saturday, January 9, 2010

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.

Friday, January 1, 2010

Week 4- And Yes I can say HAPPY NEW YEAR!

Well- this week has brought a new year and some news that is not what we wanted but in the end is obviously what God has planned for Harrison.

After Harrison's second surgery, Doctors felt pretty sure Harrison had biliary atresia. It was found that he had no gall bladder and his liver looked like it had the beginning stages of scarring. But a liver biopsy would confirm. So on New Year's Day, the liver biopsy results came in and confirmed what I already knew and most of us already expected, but definitely not what we wanted..biliary atresia. Harrison is now scheduled for a procedure called the KASAI procedure where doctors will attempt to create a way for bile to flow. This procedure is not a cure nor is it guaranteed to work it really just buys Harrison time before a liver transplant has to take place. If you know anything about liver transplants, they are one of the most expensive medical procedures done in medical science and outcomes and prognosis are not superb, but we will take one day at time. Harrison is currently trying to recover from his last surgery and things are looking better, but they are having to start very strong antibiotics because blood results show a possible infection. We should know more about this in two days.

With all this being said, you might wonder why I can even utter the words "Happy New Year." And so my response is: It is only by God's grace. But I would like to share with you what he has revealed to me in all of this:

1. Every day that Harrison is here is a blessing, and it is ordained by God. There is a reason and purpose and I try to find it.

2. Every day that Harrison is here is one more day that more knowledge is gained about Cat Eye Syndrome, biliary atresia, and liver disease all of which are new and highly researched fields that are needed to save lives.

3. Every day that Harrison is here another doctor, nurse, family member, or friend, learns of his rare situation and can grow from it.
Ex: Today Harrison had a new nurse Andrea. She said she fell in love with him as soon as she saw him. I could tell by the questions she asked me and the tone of voice she used she really understood the seriousness of Harrison's condition but wasn't sure how I was taking it all in. By the end of the night, she finally stated she couldn't believe how well I was doing, but was concerned I was trying to hold it all in. I told her I was at the point of taking every day for what it was and that I was definitely aware of how serious this all was, but it was not in my control. She told me she was there for me and that is exactly what I should do is love Harrison right now and today and cherish it. She was so sweet and she hugged me and said she immediately felt connected to Harrison and that she was there for both of us to cry and cheer on. She is another angel sent by God to help me another day.

4. Throughout this whole process I have felt the need to research out and hunt for as much information as I can on Harrison's condition, symptoms, anomalies, etc. I did all of this because I had to know what could be done to "fix" it but I also had to know what I might be facing before it was said. If I saw it couldn't be fixed, then I panicked and then I would relinquish my fear to God and come to terms with what lies ahead. But I have also been faced with the most serious of all anomalies,biliary atresia. What Harrison has isn't curable, and no research will ever tell me how long my son will live or what the outcome of any this will be. For the first time in my life, I can't run from this news nor can I push it away. I can't control the outcomes, but I also can't let what I know swallow the joy that Harrison brings to me today. This has been a HUGE step for me.

5. I have also seen how much family, friends, and prayers are exactly what I needed. I have loved being surrounded by prayers and family members. It seems strange, but being in a crowd of people I know care and love my family has been very uplifting and help me see that I can do this, no matter what. So if I have sat in your living room or at your dinner table for Christmas this year, or you have sat in the NICU waiting room scrubbing for 2 minutes followed by the donning of the infamous yellow thermal suit, know I am thankful for those moments where your back rubs, hugs, tears, prayers, food, jokes, and laughter helped me see the light at the end of the tunnel.

6. I have also seen that some of the people that God has placed in my life such as those who also have children with special needs we now share a common bond that I never realized would connect us. I now understand so many of things I did not before, and I believe there is a reason we met. I am thankful for their support and understanding.

7. God placed me at a hospital that is fairly close to home, it is the top hospital for liver disease in the Carolina's, it is the largest hospital that does pediatric liver transplants in the Carolina's, because of this the surgeons have operated on biliary atresia more than Duke, Wake, and other big name hospitals in the region. He has placed a surgeon in the care of Harrison who says that he treats every patient as if it was his child he was operating on. He is thorough, wonderful, and hopefully optimistic. And this hospital has only been in place for 2 years..amazing.

So this New Year will be great because God is in control and not me. My New Year Resolution is live life for today for God has blessed me with it. I promise to not dwell on what the future may hold, because I want to enjoy the glory that God has brought today.

Please continue to pray for Harrison and our family. Praise God for what he has given us today.