Welcome to Joshua’s Journey, the first years, a testament of hope and resilience. I found this log in an older website that I built and is no longer around. I wanted to share this with you in hopes sharing Joshua’s journey, families facing similar challenges will find encouragement and a glimmer of hope. When we first learned that Joshua was born with HLHS, TAPVR, Pulmonary Atresia, and had suffered a stroke at just five days old, the future seemed uncertain and daunting. Yet, Joshua’s story is a beacon of light that shines brightly even today, as he has grown into a thriving and remarkable 22-year-old.
Through the trials and tribulations, we have witnessed the incredible strength of the human spirit and the profound impact of God’s blessings, along with love, faith, and medical care. May this space provide comfort and inspiration. God bless each of you—the brave little ones battling so courageously, the families supporting them, and the dedicated doctors and nurses who make miracles happen every day.
| Day | Journal |
| Monday, September 10, 2001 | On September 10, 2001 we went for an Amniocentesis to ensure all was okay and to see if the baby was a boy or a girl. We could only think of a boys name prior to finding out, Joshua (after the name in the bible), John (after Marys dad) and Francis (after my dad). To our delight, we found out that day that our baby was a boy. We were more elated than we had ever been. For the next fifteen minutes, we were ecstatic to know that we had a baby boy, then the doctor came in and looked at the screen for a few minutes without saying anything. My question to her was “Is there anything wrong?” and her response to me was “Yes, a major problem with his heart”. This was not something we wanted to hear, with that, our lives seemed to board an emotional roller coaster. We went to see Dr. Grady, a Pediatric Heart Specialist, in Willow Glenn that afternoon. He told us, after looking at our baby boys heart via an ultra sound, that Joshua appeared to have a condition called Hypo Plastic Left Heart Syndrome (HLHS). To put it mildly, we were in shock, blown away and completely distraught. For the next three days, we stayed home from work, paralyzed by our fears and sorrows and, further devastated by the terrible images of airplanes filled with innocent people crashing into the World Trade Center and the Pentagon. Our lives seemed to stop as we watched the peaceful and happy world we knew just days before be blown away. To make matters worse, we still had to wait another two weeks before we could find out the results of our amniocentesis. With all that was going on, the only thing we knew to do was to turn, redirect our focus and look to God. We began to search the web for information on HLHS, and learned that it resulted in the left side of the heart being very poorly formed and unable to support normal circulation throughout the body. The left ventricle and aorta are abnormally small (hypo plastic). We learned that HLHS was one of the most severe forms of heart defects a baby could have. |
| Tuesday, September 18, 2001 | On September 18th we had our normal OB appointment with our doctor in Los Gatos, she gave Mary and Joshua the usual check up, talked to us about the HLHS diagnosis and what it could mean for us as parents and for Rachel, our 8 year-old daughter. Before leaving her office, she called and found that the results of the amniocentesis came back “normal”. What a word to hear normal. We were so relieved to know that Joshua, along with all the other diagnosis, did not have Downs Syndrome. Now all we had to worry about was HLHS. |
| Thursday, October 04, 2001 | On October 4th we went to UCSF for a 1 hour echo fetal cardiogram. The echo ended up taking 2.5 hours because they had to look and look at every angle to see what was going on with Joshuas complex heart. He was moving continuously and they could not get a good picture. Finally, they gathered all the information they needed then informed us that Joshua not only had HLHS, but also had a condition called Right Dominant AV Canal. The result of this condition is a single valve in the heart, and the ventricle that the blood is flowing through is dangerously overworked. There is a high possibility of blood leaking backwards in the heart called Hydrops. The doctor said that if Joshua got Hydrops, fluid would build up around the heart, and he would not survive the pregnancy. We were told that we needed to come back every 4 weeks to keep checking on him, to make sure there was not leakage. We were crushed to find this out, and went home and cried out to God once again. We did not understand, however we knew that He did, and, He would give us strength to carry on. |
| Friday, November 02, 2001 | On November 2nd we went to UCSF again, this time with another doctor, who examined Joshua via echo fetal cardiogram again. As he had before, Joshua was moving constantly, making the doctors job of gathering vital information very time consuming. The appointment took about 1.5 hours. When the doctor was done, she told us that Joshua indeed had HLHS, an unbalanced canal, Right dominant AV canal, d-malposition of aorta, pulmonary atresia and asplenia syndrome (heterotaxy, right atrial isomerism), which was yet another new diagnosis for Joshua. Needless to say, we were crushed. We cried out to God again. We knew that He was looking after Joshua, however now Mary, Rachel and I needed to be looked after, too. For the next week, Mary and I discussed which hospital we would have Joshua at. We talked with the Dr. Thomas Karl (coming from Philadelphia to UCSF) and to Dr. Frank Hanley from Stanford. We also took a tour of the NICU (Neonatal Intensive Care Unit) at Stanford and at UCSF. After much discussion, and praying, we decided that we would have Joshua delviered at Stanford and have Dr. Hanley do the surgery if needed. I still believe in miracles of healing, however in case Joshua needs it, we will have Dr. Hanley there for us. |
| Friday, November 16, 2001 | On November 16 at 7:30am we had a meeting with Dr. Hanley at Stanford. We were there about 15 minutes early, and met Dr. Hanley in person for the first time. He had reviewed our information from UCSF with a number of other surgeons and specialists at Stanford. He discussed with us what he believed he saw on Joshuas fetal cardiograms. He told us that the fetal cardiogram was about 75% – 85% accurate. His findings were: 1. He believes that the Aorta was developed and that the Pulmonary Arteries appeared to be under developed. This means that a shunt will need to be surgically implanted into Joshuas heart to repair this condition. 2. He also believes that Joshua has Right Dominant AV Canal. 3. There was also a new complication that he saw called Total Anomalous Pulmonary Venous Return (TAPVR). Joshuas Pulmonary Arteries seem to be connected to the Aorta instead of to the left ventricle. The surgery to correct this problem has the same risks as a Three Stage Norwood operation (currently 75% success rate). Dr. Hanleys main concern was that a blockage of blood flow leading away from the heart could cause congestive heart failure. He was unable to determine if there was a minor blockage or major blockage. They will need to do another echo cardiogram immediately after Joshua is born to diagnose exactly which direction his blood flows. Dr. Hanley believes that Joshua has a rough road ahead of him, and that we will need to have him monitored very closely during the last trimester of pregnancy. He also believes that Mary needs to be induced for the birth. More details will be discussed as we get closer to the delivery date. Dr. Hanley stressed the need for us to get hooked up into the system at Stanford, which we are currently doing, to ensure that we have the best doctors and support staff to take care of Joshua. Our next appointment is 11/28 with a High Risk OB and then on 12/4 for an ultra sound. We will then get scheduled for birthing classes at Stanford. |
| Wednesday, November 28, 2001 | On 11/28/01 we met with the High Risk OB Doctor at Stanford. We discussed the different birthing options we had and which would be most advantageous for Joshua (vaginal or c-section). The doctor agreed with the recommendations of Dr. Hanley, suggesting that labor be induced so that the optimal team of surgeons, cardiologists, neonatologists and intensive care nurses could be on hand just incase Joshua requires surgery immediately after delivery. At this time, we are planning the induction somewhere around the 38th week (beginning of February). We have decided that we will discontinue seeing our OB in Los Gatos, and will be using Stanford doctors etc. from everything from now until Joshua is born. We will see the head doctor of the High Risk OB clinic next week at our appointment. |
| Tuesday, December 04, 2001 | On 12/4 we were at Stanford (Lucille Salter Packard Childrens Hospital) from 8am until 5pm. We had appointments at 8am (Ultra Sound), 9:30am (Genetic Counseling) , 10:30am (Glucose Test), 1:30pm (Fetal Echo) and 3:00pm (tour of the NICU). We left exhausted that night. At the Ultra Sound Appointment we met with the doctor in charge. We were told that Joshua was a healthy 3 lbs 5 oz. and is in the 53% for size and weight. That was a nice thing to hear. The doctor confirmed Joshuas new due date of 2/15/02. The technician and doctor both told us that besides his heart, Joshua looks great and appears to have healthy and normal organs, spine, brain, bones etc. We then went and met with the Genetic Counselor who gave us suggestions on books for us, and Rachel to read, and reassured us that we were now firmly hooked into Stanfords system and from now on it would not be quite so challenging to get appointments schedules, tests coordinated etc. Mary had her Glucose level checked and got to drink the orange kool-aid. We got the results back today and found that Marys blood sugar level was 142, two point above the acceptable level of 140. They want her to come back and take a 3-hour glucose test. We will discuss the importance of this test and schedule a time to take it within the next day or two. We had a Fetal Echo done at 1:30pm in the afternoon by the head of Pediatric Cardiology. He agreed with the diagnosis of TAPVR and Right Dominant AV. He told us that Joshua had something called heterotaxy (which can cause organs to not develop properly and end up on the wrong side of the body). Joshuas Pulmonary Arteries were unable connect to the left side of the heart (since it is only 10% of the size it should be). As a result, the Pulmonary Arteries went looking for something to hook up and found the Aorta the most convenient location. This left Joshua with only one viable ventricle to pump his blood throughout his body. His heart is in a difficult and complex condition to say the least. The doctor gave us some good news and said that there appears to be some extra tissue around Joshuas only heart valve, which in this case seems to be preventing any back flow or hydrops. We will have another Fetal Echo done in early January. Mary and I then went to talk with one of the lead Neonatology and got a tour of the NICU. We discussed the many scenarios that could occur during his birth and what to expect in the first couple hours and days of his life outside of Mary. We pray that Joshua will not have to have surgery immediately after he is born so he will have a chance to stabilize. They believe that since Joshua has been working the right ventricle from the beginning that the ductus will be large enough to allow blood to flow easily through the lungs and the body until his lungs are able to handle oxygen better. The doctors are concerned about the direction of the blood flow through the arteries and will do a fetal echo immediately after birth to confirm exactly which route his blood takes to get to the rest of his body. The optimum situation would be for him to stabilize for 3 – 5 days prior to surgery. Please keep Joshua in prayer for this. It looks like we will have approx 8-10 doctors, nurses and specialists in the room other than us for the delivery. |
| Thursday, January 10, 2002 | In early January, we returned to Stanford for more routine appointments, O.B., another Echo cardiogram, another ultrasound and a Fetal non-stress test. Much to our relief, Joshuas heart appeared to be holding up quite well. There were no signs of Hydrops (no fluid around the heart, lungs, head etc.) Although all the docs and specialists continued to confirm Joshuas previous diagnosis, they didn’t add anything to his list, which was a huge relief to us. The non-stress tests showed that Joshuas heart is strong, active and responds perfectly to both high activity levels and resting periods. Our O.B. was not quite so pleased with Marys situation. She apparently was spilling a lot of sugar in her urine and as a result, was diagnosed with gestational diabetes and put on a very strict diet. Mary was told that she would have to test her blood sugar 4 times a day, measure everything she ate, document it and walk at least 20-30 minutes after each meal. If she was not successful in controlling her blood sugar that way, she would have to take insulin injections up to 3 times per. The risk to Joshua was also substantial. This news was like the straw that broke the camels back. Mary was furious at her diet restriction, frustrated by the mandated times and amounts she could eat and hated pricking her finger for blood samples. She realized the importance of following all the doctor’s requirements, and with lots of support, accepted what needed to be done and did it. At the next couple of doctor visits, she lost weight, which did not make the doctors very happy. Her blood sugar levels were better but still had occasional counts of over 165 (normal is supposed to be between 110-135). After 3 weeks of close monitoring, regulated eating and tons of walking, Mary finally got her blood sugar levels under control and is gaining weight at a healthy normal rate once again. No insulin shots, YIPPPPEEE! |
| Thursday, January 10, 2002 | On the early morning of January 10th, Mary began to have very strong Braxton Hicks contractions and by late afternoon was admitted to labor and delivery for monitoring. Luckily the contractions weakened and Mary was told that she needed to drink water, a lot of water, every day in order to prevent premature labor. Considering the devastating impact that an early birth could have on Joshua, you can bet Mary is drinking a ton of water! Shortly after that, we were notified by Stanfords wonderful program called Homes with Hearts. They told us that they found a house for us to use while Joshua was at the hospital. This home would be available as of the 1st of February and was 10 minutes from the hospital, 4 bedroom, 3 bath, 2000 sq. foot home with all utilities but phone included for the bargain price of..FREE. This home would be available for us to use until the end of March if necessary and the incredible family donating wanted nothing but to help out families in need. This blessing was one of very few to fall upon us during this most challenging time. |
| Wednesday, February 13, 2002 | Mary was admitted into labor and delivery at Lucile Packard Childrens hospital on February 13, 2002. This was the date that we planned on inducing her so that Joshua would be born with time to stabilize a couple days prior to surgery with Dr. Hanley. She was given a cervical gel at 11:00am and was told that we would be waiting 12 hours prior to starting the pitoson. The gel worked well and Mary was having light contractions near the 12th hour mark. At 2:00am on February 14, 2002 she was given pitoson and we believed that we would be having a Valentine baby (how appropriate we felt to have a heart baby on Valentines Day). However, Joshua had other plans. The contractions were only pitoson induced and Marys labor did not progress into active labor. After 16 hours of pitoson, and no Joshua, we decided with the doctors to discontinue the pitoson and go back to square one with the cervical gel. At 9:00pm on 2/14/02 they did the cervical gel again for 12 hours. At 10:00am on 2/15/02 Mary was in labor and started pitson at which time she went into active labor. She was in labor until 5:53pm when Joshua was born. Joshua John Francis Goulart was born 7 lbs 1.8 ounces on 2/15/02 at 5:53pm. When he was born, face up by the way, there were 14 doctors and nurses in the room. It was an organized madhouse that we were in. They rushed him to the baby bed and performed the usual tests. Joshua was pink, crying and looking good (in fact he had a APGAR score of 9!!) This is truly a miracle with a heart baby we were told. He was rushed into the NICU being carried by the doctor in charge. When we got into the NICU it was even more of a organized madhouse. Numerous different doctors and nurses were trying to get their hands on Joshua for their tests and stabilization. Tony was there and followed him in as Mary was getting cleaned up. |
| Friday, February 15, 2002 | It was about 9:00pm on 2/15/02 when we received a knock at our recovery room door. It was one of the cardiovascular doctors that told us that Joshua would be going into surgery within the next 12 to 48 hours or sooner. We were not overly surprised but grateful that it was not be right that moment. About 30 minutes later we received another knock on the door, it was the head cardiovascular doctor who told us that Joshua would be going into surgery within the next hour. We were told to go down and see him prior to this surgery and that it would take about 2 hours to complete the two main objectives of the surgery. On our way to the NICU, we saw Dr. Hanley who had already been in surgery since 7am that morning ( 15 hours) without much of a break. He assured us that the surgery seemed quite straight forward and encouraged us to get some rest. We went down and saw Joshua, talked with him and prayed over him. Needless to say, we were crushed that our little boy who was only 3 hours old would be going into a 2 hour surgery, even though we knew it was the best thing for him. The doctors told us that they would update us when they got out of surgery. We went back into the room and tried to sleep, tough as it was we slept for a few hours. At 5am we were awakened when Dr. Hanley knocked at the door. Tony answered and let him in. Dr. Hanley told us that the surgery went well, however there was an added issue that was not seen prior to surgery in the echo. Joshuas pulmonary veins were not connected and he was able to connect them on the fly. This surprise condition caused the surgery to go an extra 4 hours. |
| Saturday, February 16, 2002 | We went to see Joshua in the Cardiovascular Intensive Care Unit (CVICU). We found that there were tubes coming out of him in every place imaginable. The knowledge that we had prior to the surgery helped us cope with what we saw. We prayed over Joshua and believed that with Gods help and the amazing skill of the surgeons, he would pull through this. We had our Pastors come over and say a prayer over Joshua in the unit. We had many family members there also who gave us moral support too. Mary was doing well after the delivery and was walking slowly by the next day. It was a long delivery, however she did an awesome job. Joshua was unconscious for 2/16 and 2/17 and we were by his side as much as possible praying and encouraging him that he would make it. |
| Monday, February 18, 2002 | On February 18 the CVICU nurses removed some of the tubes from Joshua tiny body (the right atrium tube, both chest tubes, the nasal gastral tube and the respiratory tube). It was a very good day for Joshua. We could actually see his little face and he looked good with all the tubes out of him (he was cute either way, but we loved seeing him without tubes). |
| Tuesday, February 19, 2002 | On February 19 we had a couple set backs. Joshua stopped breathing a couple times as a result of apnea. He had to have a breathing tube in his nose (C-PAK). He hated having little tubes shoved up his nose and became extremely agitated at times. We knew he would over come this, but it was difficult to see our baby go through the discomfort nonetheless. That night a good friend of ours came over and took us to dinner, the first good dinner wed had in a long time. We were so tired and stressed that we went back to the guest house and slept the night away. |
| Wednesday, February 20, 2002 | On February 20, we came into the hospital to find that Joshua was doing even better. They removed two IV lines, an IV splint from his right arm and the CPAK breathing tubes from his nose and replaced it with a small breathing strip. Later on in the day they removed the small breathing strip. We now could hold his right hand, left foot and leg. He was placed under billie lights for joundis and had patches place on his eyes to protect the from the necessary UV rays. We were told that this would help clear up the jaundus within a couple days. They also moved him into a new room where he had one nurse caring for him and another patients since he is improving so fast. |
| Thursday, February 21, 2002 | On February 21 we were told that Joshua was doing well. He was still in the CVICU, however he was improving and we were told that he would be the next baby to go to the NICU as soon as a space was available. We were ecstatic over this news. We were also told that he would be fed Marys breast milk later on in the day, that one more of the tubes from the umbilical cord would be taken out and that the jondas was getting better (from a 17 to a 16.3). At about 11am we were told that they were moving him ASAP to the NICU since he was doing well and they needed the room for another baby just out of cardiac surgery. We followed him to the NICU from the CVICU and when we got there we were told that we needed to wait to see him, so that they could get him settled. We got to see Joshua about 20 minutes later and what a joy it was to know that our baby boy was one step closer to coming home. We went to lunch with Tonys parents and when we returned we went to the NICU. Much to our dismay, we saw about 8 doctors around our babys bed. We were told that we could not go in, and that is when Mary asked if they were working on the Goulart baby. The answer was yes and the woman went in to get one of the doctors. Dr. Maxwell came out to speak with us and we were told that Joshuas heart had been beating very fast (called Atrial Fibrilation). He said they had to use the pace wires that were left in from the surgery to help jolt his heart back into a normal rhythm. It worked and although it scared us terribly, we were told that this was just another bump in Joshuas road to recovery and that there would be more. Needless to say, Mary and I were quite upset and stressed over these events. The rest of the afternoon continued to be stressful as Joshuas bouts with apnea continued at the rate of about 4 times per hour. Mary and I prayed for Joshua to get relief from the apnea and the doctors gave him digonxin to help slow down his heart beats and strengthen each contraction of the heart. We went back to the guest house and tried to have a quiet, stress free evening. Around 9:30 pm, we called the NICU and were told that Joshua was doing pretty well but was still have about 4 apnea attacks every hour. We continued to pray for our little boy and asked God to breath his breath of life and healing into our son so the follow day could be another filled with positive recovery for Joshua. |
| Friday, February 22, 2002 | On February 22nd we were told that the Neurology team would do a CT Scan, which would tell us if Joshuas brain was functioning normally. He was still having apnea attacks and we continued to pray that they would cease and the doctors would find the cause. Mary was sitting next to his bedside when a doctor came up to discuss the CT Scan. I was called in to hear that Joshua had a stroke some time within the last 2 weeks. Devastated, we discussed with the doctor all the issues relating to this. We were told that 60% of the left side of his brain was effected and that he may loose some functionality on the right side of his body. They could not tell us how much long term damage would result from this stroke but they did say that it was most certainly the cause of the apnea attacks. We were told that he would be left handed and although a stroke is never a good thing, having one in infancy is not as devastating as in an older person. It seems that babies that suffer strokes can usually recover quite well because some of the damaged brain cells can recover and the neuropathways that otherwise would have been established in the damaged portion of the brain can and usually are shifted to the undamaged areas of the brain. We were also told that they would do an EEG on Monday to get more information. We believe that many of his cells will regenerate and that the cells that cannot, the functions that they are used for will be transferred to the right side of the brain. Joshua is also starting to drink Marys breast milk that she is pumping and Joshua is drinking approximately 5 ccs (about a teaspoon). |
| Saturday, February 23, 2002 | On February 23rd, we came into the hospital with a prayer that Joshua would have a good day. Rachel, our daughter, was coming back from Seattle with Grammy Donna (they went there for the week), and we wanted to get our first family photo. Rachel was a pleasant site to see when they arrived at the airport. They were two hours late due to an issue with the plane, which made it impossible for us to bring Rachel to the hospital that evening. Rachel was finally home, she was safe and our family was back together. That evening, we were in constant contact with the hospital and found that Joshua was now drinking 10 ccs of breast milk every three hours. |
| Sunday, February 24, 2002 | On February 24th, we overslept, the stress was catching up with us. We did not get up until 9:30 am and went into the hospital with a prayer that Joshua would have a good day again and that we would finally get our family pictures. Rachel arrived at the hospital at 11:30am and we took many pictures. Rachel also made a picture for Joshua, which we hung above his bed. We felt so blessed to have our family back together. Mary fed Joshua was fed by bottle at 3pm. He drank 25 ccs of breast milk without any difficulty. In the next feeding he drank 30 ccs of milk and was doing well, still in the ICU, however we believe that God continues to look after our son. |
| Monday, February 25, 2002 | On February 25th, we called to find that Joshua is now on 40 ccs (1 ounce) of breast milk every three hours and that they took him off the IV for nutrients. All his nourishment was now coming from Marys breast milk and he was drinking it every three hours. They did not want him to get overly tired, so they have told us that he would have 30 minutes to drink and if he was not able to finish within that time frame, they would feed the rest to him via an NG tube. It seems that heart babies tend tire easily and they did not want him to use up all his energy drinking. The Neurology team did an EEG and told us that they would read it later in the day. Their main concern was that Joshua was have spells of very shallow breathing and that his saturation levels dropped in response to the erratic breathing episodes. The EEG also indicated that the electrical seizures in Joshuas brain were coming from the area damaged by the stroke and that the apnea and shallow breathing. The Neurology team decided to put him on a drug called Phenobarbital, which is used to quiet electrical impulses within the brain and therefore stop any seizure activity. They started this at 1pm and it seemed to stabilize his breathing/oxygen levels. |
| Tuesday, February 26, 2002 | On February 26th, we treated ourselves to massages that we had scheduled weeks ago. This was something that we needed and plan on doing this every three weeks or so. Since Mary took the earlier massage, Tony got to feed Joshua at the 12:00pm and was able to hold him until 1:30pm. Needless to say, Tony was in heaven being able to hold Joshua that long. In the afternoon Tony went to his massage and when he returned, Mary informed him that the doctors have given Joshua a drug called Ativan. Apparently the level of Phenobarbital had not reached a high enough level in Joshuas brain to stop the seizures. Once the levels were high enough, the Ativan would no longer be needed. |
| Thursday, March 21, 2002 | Joshua came home for the first time. |
| Saturday, August 10, 2002 | Joshua went in for his second open heart surgery (the Glenn). The surgery was successful and recovery looked good. |
| Wednesday, August 28, 2002 | Joshua went in for an emergency surgery (20 days post-op) after a major infection in his chest was discovered. Infected bone, muscle and tissue were removed. He was placed on intravenous antibiotics for 6 weeks. Joshua spent a total of 52 days at LPC Hospital before he was allowed to go home. |
| Friday, November 01, 2002 | Joshua began Physical and Occupational Therapy weekly |
| Wednesday, March 12, 2003 | Joshua had a G-tube place in his stomach. This enabled him to be fed through a tube directly into his stomach instead of a feeding tube through his nose. Although he still ate very little by mouth, his willingness to try more soft foods increased a little. |
| Tuesday, April 15, 2003 | Joshuas 2nd Birthday Party and his first big party at home. |
| Thursday, May 01, 2003 | Joshua began Early Intervention Therapy weekly, which introduced him to new skills and experiences regularly. |
| Friday, August 01, 2003 | Joshua learned how to scoot around on his bottom, using his left arm and hand to push himself from place to place. |
| Sunday, August 10, 2003 | Joshua learned to roll over, eventually learning how to roll in order to get to the many places he wanted to go. |
| Monday, November 10, 2003 | Joshua got braces on his feet, enabling him to stand better and learn to balance his weight while standing upright. |
| Monday, January 05, 2004 | Joshua learned to stand up by himself and gradually learned to side step holding onto furniture for support. |
| Tuesday, February 03, 2004 | Joshua began Speech Therapy weekly and progressed in his language development rapidly. |
| Monday, April 05, 2004 | Joshua began Feeding Therapy weekly and slowly improved his oral motor skills. Eventually he we were able to get a tooth brush in his mouth. |
| Monday, November 15, 2004 | Joshua started walking the day before Thanksgiving. |
| Saturday, February 05, 2005 | Joshua was accepted into a special Pre-School to begin after his Fontan Surgery |
| Saturday, March 05, 2005 | Joshua started Home Teaching Pre-School provided by the County of Education, incorporating Speech and Early Intervention Therapies together. |
| Tuesday, March 22, 2005 | Joshua went in for a Heart Catheterization in preparation for his final open heart surgery. Results were positive and numerous pre-op procedures such as an Echo, EEG and X-rays were preformed in prep for the Fontan. |
| Tuesday, March 29, 2005 | We were notified that Dr. Hanley (heart surgeon) was worried about some of the results he reviewed from the latest Echo. He requested that Joshua go in for a CT scan the day before his big surgery. He felt this was necessary in order for him to know exactly what to expect once he opens up Joshuas chest. There was evidence of narrowing of the Inferior Vena Cava which made Dr. Hanley think there may be another vein somewhere that is interfering with the blood flow through the IVC. Unfortunately, Joshua will have to go under full anesthesia for about 1 hour the day before his big surgery. Fortunately, Dr. Hanley caught this and will now know what to expect and how best to approach this unexpected condition. |
| Friday, April 01, 2005 | We had our pre-op meeting with Dr. Hanley today. Overall, it was very encouraging. Dr. Hanley said that he is not terribly worried about the IVC but that it could cause other complications if he cant get a better look at Joshuas heart and lung area before the April 7th surgery which should be at @7am PDT. He said that he and a large number of doctors and cardiac experts all agreed that a CT scan should be done the day prior to his surgery on April 6th @8am PDT. He also said that whenever Joshua is brought up in medical discussion, he creates much discussion and that people at LPCH who know of him are very amazed by how well he is doing. We asked Dr. Hanley of all the heart surgeries has done, what percentage of his cases were as complex as Joshuas. He said less that 1% of all his cases are as complicated and difficult as Joshuas. Then we asked of that less than 1%, where does Joshua rank in terms of how well he is doing overall and he said hes never seen a child do as well as Joshua, considering the complexity of his heart defect and repair and all the other things Joshua has gone through. That made us so happy and very proud of our little fighter. Dr. Hanley also had 2 pictures of Joshua in his office. Kinda cool! We left feeling reassured and more confident but still scared. Dr. Hanley is a calm, gentle, soft spoken, AMAZING MAN and we love him! |
| Tuesday, April 05, 2005 | Joshua has had a problem with constipation all of his life. We have given him prune juice for almost 2 years and recently started him on mineral oil daily to help. Since he is going in on 4/7 for his Fontan, we wanted to ensure that Joshuas constipation was not going to be an issue for him while in the hospital. Due to this we called his doctor and asked what could be prescribed. We received GlycoLax (POLYETHYLENE GLYCOL 3350 powder (MiraLax), which is a laxative for treating constipation. Polyethylene glycol helps increase the water content of the stool. Bowel movements become easier, softer and more frequent.). We gave him half a dose (since we did not want to give him 4 ounces of water) at bedtime on 4/4/05 and he went to sleep. At 10:30pm Joshua woke up and started screaming. He was not a happy camper. He vomited several times and was having major gut cramps, which kept us up until 12:30 am. The advice nurse and night doctor at LPCH told us what was going on inside of him and said to just try to ride it out, hopeful that the cramping would stop soon. We were told to go to ER at LPCH if it did not get better. Luckily he finally fell asleep. We will see if he has a bowel movement today and find out from the GI clinic what to do next. |
| Wednesday, April 06, 2005 | Joshua went in for his CT Scan a few minutes ago (8:35am PDT). He was a trooper when they gave him the anesthesia. Please keep him in prayer during this procedure and that they find everything that Dr. Hanley needs to see for the Fontan Heart Surgery tomorrow. We will update as soon as we can as to the results of the CT Scan. We have been informed that Joshua’s surgery has been delayed until approx 1pm PDT tomorrow instead of 7am PDT. This means a late night for all of us tomorrow. Needless to say we are relying heavily on all your strong prayers at the moment. Update 11:30am Thanks for the prayers and notes of support. We may not be able to answer each note yet each one makes us stronger and those thoughts and prayers are getting all of us through this. Joshua got out of the CT Scan at about 10am PDT. We are told the CT Scan went well and the IVC looks to be the correct size for the Fontan. We are still waiting word if there collateral veins or some other anomoly that has inpacted the size of the IVC. This procedure should help Dr. Hanley a great deal in preparing for tomorrows surgery. As soon as we hear anything regarding the IVC we will let all of you know (it may not be until tomorrow prior to the surgery). We found out today that there was a mix up on the scheduling and we are back to the 7am PDT surgery slot. It means that Joshua should come out of surgery about 4pm tomorrow. It will still be a long day tomorrow. Both Mary and I appreciate the thoughts and prayers and believe that they are getting us through this time. We just received a call from Dr. Hanley’s Physicain Assistant saying that there is a huge Cardiothorasic confrence in S.F. and because of Dr.Hanley’s outstanding reputation, there are many doctors from around the nation who want to watch him in action. They asked for our permission to have many of these doctors watch Joshua’s surgery. We said we were happy to have others learn from Joshua’s condition and somewhat jokingly, we added, as long as none of them touch him. They assured us no one else would touch Joshua except the planned surgical team. Joshua will have a much bigger audiance than we ever expected. |
| Thursday, April 07, 2005 | 6:30pm PDT Update Joshua is doing well and will be extubated (take his breathing tube out) tonight at approx 6:30pm PDT. There is a current concern regarding Joshua’s heart rhythm. Would you all please keep prayers for the following: 1. “Normal Sinus Rhythm” – this is his heart timing to be normal 2. Be calm through the night so that he can rest and get better 3. For the medical staff that they stay on top of Joshua’s condition 1:30pm update Joshua is now out of surgery (we will be able to see him around 2pm PDT). We just spoke with Dr. Hanley and he told us that Joshua did very well in surgery. Our next step is Post Op which is also very important. The following are the three items that we need prayer and good thoughts at the moment: 1. That Joshua’s body takes the Fontan surgerical procedure without rejection 2. That his kidneys and liver work correctly accept the new blood pressures as a result of the Fontan3. That the fluid does not build up in the lungs and chest area (Dr. Hanley only had to put a central drainage tube into Joshua, and anticipates other smaller lines (pigtails) maybe necessary if fluid builds up). 8:00am udpate Just a quick note that Joshua went into surgery at 7:45am today @ LPCH. Please keep good thoughts and prayers for the following: 1. Joshua – keep him strong through this surgery. 2. Dr. Hanley and the surgical team that they will be able to perform the Fontan Open Heart Surgery without complications today. 3. Mary, Rachel and myself -for strength during this time. |
| Friday, April 08, 2005 | 4/8/05 – 6:30am PDT Joshua is extubated and has been off the breathing tube since last night!! He was also calm throughout the night and is doing well this morning. After speaking with the nurse this morning we would like to have good thoughts and prayers for the following: 1. Breaking up of Secreetions (Fluid build up) in the lungs. The nurses will be doing the conventional method of CPT chest percussion (chest percussion is the manual clapping on the back to loosen and break up the secretions) and have Joshua cough this out or go through the chest tube 2. Temperature – The hospital staff literally has ice packs near Joshua to bring down his temperature and is currently at 37.6 (99.7). We would like to bring it down to 37 (98.6) without the use of ice packs 3. Continued prayers for the medical staff that they stay on top of Joshua’s condition update4/8/05 9pm PDT update Joshua had a difficult day today and was uneasy, we are praying for an easier night tonight. He continues to have fluid in the lungs, high fever and to much liquid in the body. This is all due to the Fontan surgery and needing to have his body accept the changes that were made. Tonight they are doing the following to help Joshua get through these Post Op issues: 1. Putting in “pigtails” (drainage tubes from both sides of the chest) to have the fluid in the chest drain. 2. By putting in the pigtails, this should also help the saturation levels (more oxegyn in the blood) since he will be able to breath easier which in turn should help the fever go down. 3. They are giving him diuretics to help him move the fluid out of his system (Lasix Drip and Diuril). |
| Saturday, April 09, 2005 | 4/9/05 5am udpate Here are the highlights of last night: 1. He only needed one pigtail (drainage tube from the chest) on the right side and 300cc’s of fluid came out when they put it in!!! Needless to say – Joshua was feeling alot better when that happened. His saturation levels rose and is now at 92 with a nasal canyla instead of the mask for getting oxegyn. His fever is still a bit high, however this is also starting to come down. 2. He is peeing now which is great news. They still have him on Lasix Drip and Diuril and we are hoping to get him off the Diuril later today and only have lasix drip. We are looking to the following to happen today: 1. Allow Joshua to drink a little through his mouth (He is getting liquid through the IV and this will continue) – if his body behaves in the way that it has last night, he should be able to have a little drink late today. 2. Fever – we still are working on getting the fever down. With getting him to drink a little later today this will help. 3. Get his medications under control. The docs will be looking today at his meds to get the right mix to help Joshua out with all his vital signs. |
| Sunday, April 10, 2005 | 8pm udpate – Highlights of today: 1. We found out that Joshua actually had more than the Fontan completed during surgery. a. He also had the second repair of his Pulmonary Atresia (to allow blood to be pumped to the lungs from the right ventricle through the pulmonary artery) b. He also had the second repair of the Total Anomolus Pulmanary Return (TAPVR -the vessels that bring oxygen-rich (red) blood back to the heart from the lungs needed to be re-connected due to the anatomy of the Fontan is different from the anatomy of Joshua’s second stage Glenn Heart Surgery). 2. He is now getting 60cc of Pediasure per hour 3. Still having an unusual amount of drainage 4. His SAT’s (level of oxygen in the blood) and HeartRate are good 5. He is sleeping alot, after we fully understood what was done to Joshua we now understand why he is sleeping so much so that he can heal his body We are looking for the following: 1. Joshua’s body needs to adjust to the increased blood flow pressure to prevent fluids from coming out of his veins into his tissues. This will help with the swelling and the fluid coming from his chest tubes when his body adjusts to the increased blood flow pressure due to the Fontan 2. Please keep good thoughts and prayers to guard against infection 3. Joshua needs strength to recover from the Fontan and 2nd Repair of the TAPVR and PA that was completed on 4/7 1am udpate We are still in the Cardio Vascular Intensive Care Unit (CVICU) and will be for the next few days. We appreciate the prayers and e-mails that we recieve from each of you (prayers and letters are great for Joshua and we feel keep us going). Highlights of yesterday: 1. Joshua continues to drain fluid out of his Right Pigtail – ~700 cc’s so far, which has helped his breathing and SAT level (oxygen level in the blood). 2. He did receive water on a swab to quench his thirst and his body tolerated it. 3. He had a bowel movement and is passing urine. These are both good things meaning that his body is slowly coming back to reality. We are looking for the following to happen today: 1. As of 1am PDT he is being given some Pedialite as a first step to see if his body can handle this via mouth. Please keep him in prayer that his body can handle this, the fluid exits correctly and does not produce more liquid in his lungs. 2. Eliminate the fluid in the lungs – as talked about earlier we need to have his body continue to eliminate the fluid in the lungs and at the same time, need to not build more fluid up (I hope that this makes sense) so that we can take the pigtails and chest tube out. Also he needs to tolerate the CPT (chest percussion is the manual clapping on the back to loosen and break up the secretions) that is being done. 3. We need to ensure that he avoids infection. This is a biggy for us. Our concern is that Joshua caught a major infection after the Glenn (second heart surgery) and we do not want to repeat that in any form. 4. For Joshua to be calm and restful, however during his CPT we need to get that fluid out of the chest cavities and he needs to tolerate this and prayer for the hospital staff. |
| Monday, April 11, 2005 | 4/11/05 5pm PDT Our thanks for your prayers and positive thoughts as we go through this Post Op period with Joshua. We had some good news and also had some bad news: The good news is: The doctor informed us today that Joshua only had minor repair to his pulmonary veins and not to the TAPVR during surgery. The bad news is: 1. The pigtail on the right side was showing a cloudy fluid. We found out that Joshua is now diagnosed with Chylothorax (accumulation of lymphatic fluid in the pleural space and he is not absorbing the fatty calories from his formula, instead it is draining out of his body through the chest tubes). The doctors are looking into treatment strategies at the moment. Currently they will change the formula he is given which has a different type of fat molecule which is absorbed by the stomach before it can enter into the lymph system and balance the amount of fluids that are given to him via IV and G-Tube. Unfortunately, they can not say how long this condition will last and it is up to Joshuas body to determine healing time. It can take anywhere between 3 to 4 weeks or much more to heal. This means we could be in the hospital for a long, long time. There are a number of things they can do to assist this healing process but he said because Joshua may have to be in the CVICU for an “extended” period of time. 2. We need to be extra careful about infection control. His lymph fluids, which carry the fat to different parts of the body also carry gamaglobin (used by the body to help fight infection). Currently this is pouring out of his chest tubes and ending up in that bubbling collection box at the foot of his bed. So, not only is he losing calories in the lymph, he is also losing his infection fighting ability in his blood and he is now considered immune suppressed! The staff is on high alert and will be regularly testing Joshua’s blood and body fluids for signs of infection or trouble. 3. They tried to put another pigtail to drain the fluid on his left chest area, however the doctors were unsuccessful. They are currently exaiming the x-rays for most current status and will get back to us later today. Joshua is currently resting with quite a bit of pain medicine on board. We appreciate all of you keeping good thoughts and prayers for our above concerns. 4/11/05 7am PDT update First of again, thanks for the prayers and positive thoughts for Joshua. He is still in the CVICU at LPCH. Here are some highlights of last night: 1. He did well and slept through the night. He woke up at about 4am today and was alert for about an hour or so until he needed more pain medicine due to the severe trama that his body is going through. 2. He is tolerating the Pediasure and they increased to 65cc per hour 3. They slowed down on the liquids via the IV’s to adjust the intake in hopes that this will help lessen the fluid that is coming out of the chest tubes and ease the swelling of his body. We are looking for the following today: 1. Joshua’s body still needs to adjust to the increase blood flow from the surgery. By his body adjusting to the flow it will also help with the swelling and fluid coming for the chest tubes. He needs the stregnth to adjust to this new pressure. 2. The doctors are discussing adjusting down his medications today – this is another step in getting him out of the CVICU 3. We need good thoughts and prayers to guard against infection. Your positive thoughts and prayers are truly appreciated by Mary and I and as said in earlier e-mails we feel that these positive thoughts and prayers are getting us (Joshua, Rachel, Mary and myself) through this. |
| Tuesday, April 12, 2005 | 4/12 7pm PDT Update Joshua had a good day today and our family appreciates your good thoughts and prayers during this time that we are going through. We talk about the prayers that we are receiving constantly that are coming to our family and believe that they are helping a great deal. Highlights of today: 1. Joshua had a bowel movement today – this was fantastic since he had not had one for 5 days. I know that he feels a heck of lot better!! 2. The fluid output from his chest tubes are still high, however the fluid is clear which means that the fat molecules from the new milk formula are being absorbed by the stomach and not being lost in the fluid output 3. Pressures in the heart are down due to the medications that are given to Joshua We are looking for the following tonight: 1. Get the fluid output from his chest tubes to stay clear and slow down. Now that we have a clear fluid coming out, Joshua’s body needs to heal and the fluid needs to stop. 2. Keep infection away from Joshua, the staff are still checking his blood regularly to ensure there is no infection – as in previous e-mails, the staff is on high alert 3. Restful sleep for Joshua tonight 4/12 7am PDT Update Joshua is still in the CVICU and had a restful night last night. His vital signs all looked good and we are hoping for a positive day. Highlights of last night: 1. Restful night – he slept through the night and only had one does Morphine and Adavane to help him rest 2. He slowed down on the output of the fluid coming out of his chest tubes We are looking for the following for today: 1. Continue to slow down on the output of fluid coming out of Joshua’s chest tubes. They changed the formula he was given and need to ensure that the fat molecule is absorbed by the stomach and is not being lost in the fluid output. 2. Keep infection away from Joshua, the staff are checking his blood regularly to ensure there is no infection – as in the e-mail from yesterday the staff is on high alert here 3. Joshua has been on milk for two days and is constipated – he needs to have a bowel movement to help him feel better 4. In order to have his “lymph system heal” and decrease the output from his chest tubes they need to keep him somewhat dehydrated without impacting his kidneys or causing a drop in his blood pressure. |
| Wednesday, April 13, 2005 | 4/13 – 7am Update Joshua is still in the CVICU. All of his vital signs look good. Highlights of last night: 1. He had a restful night last night and slept well. He did not need medication (Morphine) until 12:30am (this is great since we do not want to drug him up constantly, yet not have him in pain). 2. At 4:30 this morning Joshua woke up and vomited all over his bed. It was a huge. We cleaned his bed and he went back to sleep and was peaceful, not really sure why he vomitted and the doctors are looking into this. 3. He slowed down on the output of fluid from his chest tubes until the 4:30am vomit session, if you take the next two hours after the this happened he is at the same pace as yesterday. The fluid that came out throughout the night has remained clear. We are looking for the following today: 1. Find out why he vomited. We will be talking with the doctors to work through this today. 2. Keep infection away from Joshua, the staff are checking his blood regularly to ensure there is no infection – as we have already discussed, the staff is on high alert here 3. Continue to slow down on the output of fluid coming out of Joshua’s chest tubes and keep the fluid clear. 4. Continue to monitor and keep his vital signs normal/looking good. |
| Thursday, April 14, 2005 | Post Op Day 7 8pm update Joshua had a good day today. Good News of the day: 1. He was alert and was interacting with both mommy and daddy for many hours today. He smiled and talked a little to us. 2. The doctors continued to fine tune Joshua’s meds, fluid intake and output. Not so good news of the day 1. The doctors did not place a chest tube in the right side of Joshua today. We have a scheduled procedure at 8am PDT tomorrow. 2. The staff has moved Joshua to a 4 bed room. This is not an ideal situation, but one that we must accept at the moment. We are asking for prayer in the following: 1. For the procedure to take place on time and for the doctors to be successful in placing the left side pigtail chest tube tomorrow morning in the correct location. That the fluid drains from that area. After the initial draining, the fluid needs to stop and flow normally throughout his body 2. That the Lymph Fluid stops draining from his chest. and begins flowing normally throughout his body. 3. Keep infection away from Joshua, the staff are checking his blood regularly to ensure there is no infection – as we have already discussed, the staff is on high alert here 4. Continue to keep his vital signs normal and have a restful/pain free night in his new environment. Post Op Day 7 6am udpate Joshua had a very restful night last night. He was able to sleep through the night and woke up at 6am this morning. Here are the highlights of the night: 1. The doctors did the CT Scan yesterday to see where the pockets of fluid on his left side are. They reviewed these last night and found that there is a pocket of fluid and it needs to be drained today. 2. They temporarily stopped his milk last night in preparation of Joshua going in and getting the chest tube placed on the left side. 3. Fluid from his chest tubes (center and right) have decreased last night and the fluid is clear which is a good thing. We are asking for prayer in the following: 1. That the Lymph Fluid stops draining from his chest. and begins flowing normally throughout his body. 2. For the doctors to be successful in placing the left side pigtail chest tube today in the correct location. That the fluid drains from that area. After the initial draining, the fluid needs to stop and flow normally throughout his body 3. Keep infection away from Joshua, the staff are checking his blood regularly to ensure there is no infection – as we have already discussed, the staff is on high alert here 4. Continue to keep his vital signs normal and have a restful/pain free day Thanks so much for all of your support, emails and notes |
| Friday, April 15, 2005 | Update 7pm 4/15 Joshua had a good day today and is a bit groggy at the moment from the medication today. Highlights of the day: 1. Per the earlier e-mail this morning – he had his chest tube inserted into the left side. Fluid has been coming out of this today and the doctors are pleased. 2. The Arterial Line was removed from Joshua today 3. His vital signs were stable for the day and the hospital staff was pleased with this. 4. Joshua was moved again – in the same room, but to a quieter corner. We believe that this will help Joshua recover faster. We are asking for prayer in the following: 1. That the fluid drains as needed from the chest tubes. After the initial draining, the fluid needs to stop and flow normally throughout his body. 2. That the Lymph Fluid stops draining from his chest, and begins flowing normally throughout his body. 3.Keep infection away from Joshua, the staff are checking his blood regularly to ensure there is no infection – as we have already discussed, the staff is on high alert here 4. Continue to keep his vital signs normal and have a restful/pain free night in his new environment. |
| Saturday, April 16, 2005 | 4/16/05 11am Joshua had another great night. Highlights: 1. He is asking for Mama, Ray-Ray, Dah-Dah and most importantly wah-wah (water) 🙂 2. His left side chest tube that was placed yesterday is draining fluid and the fluid is decreasing – this is great. 3. The right side chest tube is also decreasing in fluid output. 4. His vital signs have been stable for a couple days now. 5. He likes his new space in the corner and feels comfortable as he listens to Norah Jones (his favorite musician and the nurses don’t mind either). We are asking for continued prayer in the following: 1. That the fluid continues to drain as needed from the chest tubes and then stop and flow normally throughout his body. 2. That the Lymph Fluid stops draining from his chest, and begins flowing normally throughout his body. 3. Keep infection away from Joshua, the staff are still checking his blood regularly to ensure there is no infection. 4. Continue to keep his vital signs normal as Joshua continues to get better. We appreciate all the prayers, e-mails, phonecalls, etc from everyone. We will continue to update his web page daily so that you know what is going on. The doctors think we still have a number of weeks to go in the hospital, but as you can see from the notes above, we feel Joshua is going in the right direction. |
| Sunday, April 17, 2005 | 4/17/05 7pm Dear Family and Friends, Joshua had another great day! Highlights for today: 1. They removed the Arterial Line – since Joshua’s blood pressure has stabilized 2. They removed the pacer wires from his heart 3. They removed the Foley Catheter 4. His chest tubes are starting to slow down on draining. In fact the left chest tube that they put in has stopped draining and should be removed tomorrow. We are asking for continued prayer in the following: 1. That Joshua remains calm and continues to rest to help his body get better with minimum amount of drugs. 2. That the fluid continues to drain (and is not Lymph Fluid) as needed from the chest tubes and then stop and flow normally throughout his body. 3. Keep infection away from Joshua, the staff are still checking his blood regularly to ensure there is no infection. 4. Continue to keep his vital signs normal as Joshua continues to get better. Thanks so much to each of you for your prayers and good thoughts during this time. As we go through this chapter we appreciate each of you helping us. |
| Monday, April 18, 2005 | Dear Family and Friends, Joshua had another great day! Highlights below: 1. Joshua had his IJ (Internal Jugular) line removed from his neck. 2. Since the Left Chest Tube stopped producing fluid (which is a great thing) it was removed. 3. Joshua was taken out of the CVICU and is now in the 3 West Ward of the hospital – he is one step closer to coming home in a few weeks 🙂 We are asking for continued prayer in the following: 1. That Joshua remains calm and continues to rest to help his body get better and wean him off the drugs that he has been taking. 2. That the fluid continues to drain (and is not Lymph Fluid) as needed from the last two chest tubes and then stop and flow normally throughout his body. 3. Keep infection away from Joshua, the staff are still checking his blood regularly to ensure there is no infection. 4. Continue to keep his vital signs normal as Joshua continues to get better. Thanks so much to each of you for your prayers, good thoughts, e-mails and phonecalls during this time. As we go through this chapter we appreciate each of you helping us. |
| Tuesday, April 19, 2005 | 4/19/05 3pm Dear Family and Friends, Here are the good news and not so good news today on Joshua: Good News 1. The Right and Center Chest tubes are producing less fluid. 2. This is Joshua’s second day out of the CVICU and went for a walk in a wagon today 3. Joshua’s oxygen level has been turned down to 1 liter today 4. Joshua’s X-Ray of his chest looks good with minimal fluid being seen Not so Good News 1. Joshua’s White Blood count is high. The doctors are concerned with this. We are asking for continued prayer in the following: 1. Keep infection away from Joshua, the staff are checking his blood regularly and found that the white count is high today and have ordered another blood draw to check other indicators of infection. 2. That Joshua remains calm and continues to rest to help his body get better and wean him off the drugs that he has been taking. 3. That the fluid continues to drain (and is not Lymph Fluid) as needed from the last two chest tubes and then stop and flow normally throughout his body. 4. Continue to keep his vital signs normal as Joshua continues to get better. |
| Wednesday, April 20, 2005 | Dear Family and Friends, Here is the highlights of today: 1. Joshua’s White Blood Count is decreasing!! 2. The Right and Center Chest tubes continue to produce less fluid and the doctors are discussing taking them out when fluid is at 20 ml or less in a 24 hour period. 3. This is Joshua’s third day out of the CVICU and we were told to get him sitting straight and start to get pressure on his feet. 4. Joshua’s oxygen level has been turned off, nasal cannula removed and his oxygen saturation level is between 94% and 96%. 5. Joshua’s X-Ray of his chest today looks good with minimal fluid being seen We are asking for continued prayer in the following: 1. Keep infection away from Joshua, his white blood count needs to decrease to normal and ensure that he does not catch a fever. 2. That Joshua remains calm and continues to rest to help his body get better and wean him off the drugs that he has been taking. 3. That the fluid continues to drain (and is not Lymph Fluid) as needed from the last two chest tubes and then stop and flow normally throughout his body. 4. Continue to keep his vital signs normal as Joshua continues to get better. |
| Thursday, April 21, 2005 | Dear Family and Friends, Here is another good news, not so good news day First the not so good news: 1. Joshua’s White Blood Count is increasing again Now the good news: 1. Joshua’s X-Ray of his chest today looked good 2. There was hardly any output from his chest tubes in the last 12 hours 3. The Right and Center Chest tubes have been removed from his chest (he is tube free excpet for an IV in the left ankle area)!! 4. This is Joshua’s fourth day out of the CVICU and we are getting him on his feet and sitting up in bed. 5. Joshua’s has been breathing on his own for two days now and his oxygen saturation level is still between 94% and 96% We are asking for continued prayer in the following: 1. Keep infection away from Joshua, his white blood count needs to decrease to normal and ensure that he does not catch a fever. 2. Joshua’s CR Protein count needs to decrease to a normal level. 3. That Joshua remains calm and continues to rest to help his body get better |
| Friday, April 22, 2005 | 2pm PDT Family and Friends,Joshua’s white blood count is rising and we have just been told that there is a build up of fluid around the heart (called Peracardial Effusion), they are going into the Cath Lab today 4/22 at about 2:45pm PDT to put a pigtail into this area next to the heart. We are asking for prayer for the doctor and staff to ensure that the placement of this pigtail is correct and does not damage the heart. We are also asking for prayer for Joshua to remain calm during this time. Also we are asking for this to be the cause of the elevated White Blood Count and CRP count. 4:30pm PDT Family and Friends, Thanks to each of you for the prayers, e-mailsand phonecalls regarding our request for urgentprayer. The doctors were successful in removing thefluid around Joshua’s heart (115 cc of fluid!). He isresting now.Please continue to keep him in prayer for healing. |
  Saturday, April 23, 2005 | 5:30am PDT Update Family and Friends, This morning around 5:30am Joshua began behaving in an abnormal manner. Throughout the morning he became more agitated, his body grew rigid, was not able to make very good eye contact (continually kept looking to the left) and he began tongue thrusting and arching his back. Joshua was given the drug “Adavan” and the doctors were pleased to see that he fell asleep as a result of the drug. This means that it is unlikely that he had another stroke (as he did when we was 5 days old) but more probable that he was having some sort of seizure or abnormal neurological activity. We are unable to do a MRI on him because of the stents are to new and will react to the magnetic forces of the MRI. We will be doing a CT Scan within the next hour or two and hopefully will be able to find out what is going on. We are waiting for the neurologist to come and examine Joshua and when we get the results from the Neurologist and the CT Scan we will update all of you. We appreciate the continued prayers and good thoughts for our son, doctors and staff that are looking after him. 6:00pm PDT Update Dear Family and Friends, Thanks again for the immediate prayers we requested for Joshua in the last couple of days.Joshua woke up 4 hours after his double dose of Adavan and was interactive and very exhausted. He even smiled at his rainbow book and patted the butterflies on the pages. We just received word back from the CT Lab that there was no blood on the brain and no additional brain damage (Joshua did have a stroke when he was 10 days old where there was brain damage) The doctors conclusion is that it was an unusually long seizure. We are now in a private room which will help Joshua’s agitation. Updates for today: 1. Joshua had a seizure today with no apparent long term brain damage 2. White Blood Count has decreased 3. 150 cc total fluid has drained from around his heart 4. We were moved into a private room 5. The doctors would like the potassium level in his blood to decrease to normal levels Please continue to pray for rest and recovery for |
| Sunday, April 24, 2005 | Family and Friends, Joshua woke up this morning at 4:30am after a great night sleep. He was alert, played and watched TV. At 8am this morning he had another mild seizure. The good news is that the doctor saw Joshua about 5 minutes prior to the seizure. We were then able to track him down and he was able to see Joshua in the first stage of the seizure and issue medication to help him. Joshua was given another dose of Adavan and will be on Depakote (an anticonvulsants) in hopes to control/eliminate the seizures. We are thankful to God that the doctor, mommy, grammy and daddy were able to see the first stages of the seizure and were able to act quickly. We also found out that Joshua’s White Blood Count and his potassium levels have decreased and are in the normal level. Joshua also had an echo done today and found that the fluid level around his heart has deceased substantially and we will find out when the last pigtail (tube) will be removed later today. Please continue to pray for rest and recovery for Joshua and for the seizures to cease. |
| Monday, April 25, 2005 | Family and Friends, Joshua woke up this morning at 8:ooam after a great night sleep. He was alert, played and watched TV. He is able to sit up with minimal assistance. He has not had any seizure activity today. The neurologists do not think that there is any permanent damage due to the seizures he has had in the last couple days. They are monitoring his blood to ensure that he is on the right amount anti-seizure medication. He will also have an EEG tomorrow to ensure everything is okay. Joshua is also having an Echo done today to check the level of fluid around the heart. The pigtail did not come out yesterday and we are hopeful, depending on the Echo it will come out tomorrow -we will let you all know. One last note, Joshua’s White Blood Count is back to normal. Please continue to pray for rest and recovery for Joshua. |
| Tuesday, April 26, 2005 | Dear Family and Friends, Joshua had another great night sleep and woke up around 7am this morning. He was alert, played and had a couple books read to him. He is able to sit up with minimal assistance. He has not had any seizure activity in the last two days. Joshua’s last pigtail was taken out last night. He did well during the procedure and looks like he is feeling better today without the tube in him (the only tubes left are the IV and his G-Tube). Joshua has an EEG scheduled for today, we are asking for prayer to keep Joshua calm during this procedure and for the doctors to get a good read of the EEG. We will let you know the outcome of this procedure later today/tomorrow morning. Our family appreciates each of your prayers, good thoughts, e-mails, phonecalls and visits during this time. |
| Wednesday, April 27, 2005 | Dear Family and Friends, Our family thanks each of you for your continued support during this time with Joshua’s Fontan and extended stay in the hospital. Joshua slept great again last night and woke up around 6am this morning. We read books, played and listened to Norah. He is sitting up better each day in bed. He has not had any seizure activity in three days. Joshua had the EEG yesterday and the doctors got a good read from it (Joshua kept still with his eyes closed the entire time for the EEG). The doctors told us today that the EEG came back normal and they now have a baseline to compare future EEG’s to. Joshua is now working with PT (Physical Therapy) and they are having him sit up and want him to start to walk again (difficult with an IV in his foot, but he is trying). One last note, May 2nd is the tentative date that we have to bring him home. As we close this letter we are asking for continued prayer for Joshua’s recovery. We appreciate each of you for your support during this time. |
| Thursday, April 28, 2005 | We thank God for looking after our son and bringing him back to our home safely. We also thank each of you for all of your thoughts, prayers and loving support during this challenging time. We have closed this chapter of Joshua at the hospital. Our new chapter is post-Fontan with Joshua healing at home in a healthy loving environment. |
| Thursday, May 05, 2005 | Dear Family and Friends, Joshua has been home for one week today. We have received many calls and e-mails from family and friends, asking how he is doing. Due to this we decided to send an e-mail out to all of you that continue to keep him in your thoughts and prayers. Joshuas first few days at home were tense. He was very lethargic and cried a lot. He sat on our large green recliner in the living room and did not move. He came home on 13 medications which needed to be given 3 times per day and then 2 medications at 3am. Mary and I did the best we could on keeping each other spirits up as we waited for Joshuas cheerful disposition and smile to come back (he tolerated me and was even less interactive with Mary and Rachel). On Monday 5/2 we were blessed with a visit from a couple that brought us dinner. Prior to them leaving Dennis prayed over Joshua, Mary, Rachel, myself and our home. It was a true blessing and we believe that God heard his prayer. About fifteen minutes after Dennis and Linda left, Joshua looked at mommy and asked for lovins. Needless to say, Mary was touched; Joshua was coming back. It is amazing what the power of prayer, positive thoughts, lots of love, family/home life and time can do as they work together to bring forth healing. On Tuesday 5/3 Joshua woke up and asked for daddy. As he was getting up he asked that we put on his shoes. That morning he started walking around the house with assistance (wobbly, but walking nonetheless). He really wanted to move around and see the inside and outside of our home as he held on to our finger and laughed. He was interested in playing with Rachel again too. We knew that Joshua was coming back even stronger. That night another friend came over to bring us dinner (what a blessing). As we sat at the table with Cindy, Joshua sat in his high chair holding Cindys finger, smiling and interacting with her (The first couple days he had stranger anxiety and it showed he was pulling himself out of it with the interaction with Cindy). On Wednesday 5/4 we had another great day with Joshua. He is getting stronger and we are getting more optimistic each day. Our primary concerns are the number of medications he is taking (he is still on the 13 meds) and the shakiness that he has. We have 3 appointments on Friday 5/6; a blood draw (to check for appropriate levels of various meds, clotting factors, white cell count etc.), Neurology (to inquire about neurological status and possible damage caused by the seizures) and Cardiology (will have an echo to check that there is no fluid build up around the heart and to check the function of the heart). We will be at the hospital for the day and will update all of you with the results of these appointments and the progress of Joshuas ongoing recovery as soon as possible. Our deepest thanks go out to each of you for all your love, support, positive thoughts and prayers. You have helped us get through this very difficult time. Blessings, Tony, Mary, Rachel and Joshua |
| Wednesday, February 15, 2006 | Joshua turned 4 today!!! Happy Birthday to our miracle boy!! |
| Wednesday, February 15, 2007 | Joshua turned 5 today!!! Happy Birthday to our miracle boy!! |
| Wednesday, June 25, 2007 | Joshua met Norah Jones tonight in Saratoga – what a wonderful meeting it was for our special boy. He sat 2 hours in the second row with daddy watching Norah sing and then got the oppurtinity to meet her in person. Our thanks to everyone on Norah’s team that made this happen – you made a special boy very happy! |
| Wednesday, July 9, 2007 | Joshua went off the night time pump today. We are looking at his weight closely and hopping that he will eat enough to keep his weight up, helathy and give this tube to soemone else that needs it 😉 |
| Wednesday, July 13, 2007 | This was the first night that JJ slept without a tube in him – You go dude!! |
| Wednesday, August 27, 2007 | This was Joshua’s first day of school. |
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