January 10th,2010- Hi everyone. It's been a rough year for Tj and I as well as the family. Tomorrow the 11th will mark a year since the day Nathan was ushered into Heaven by angels. The pain that we feel is still great but God has been comforting us through His promises, family and friends. We thank you for keeping Nathan's memories alive by visiting his website, getting involved in the AVM/Aneurysm walk and watching his videos online. Despite his young tender age, he has shown us God's intended purpose of life which is to serve and glorify His name. Nathan showed Tj and I that everyday is a gift, and each moment is precious. We must not let the hardships and obstacles of everyday life discourage us. Instead we should draw our strength from the Lord and trust in His name. We will never truly understand God's will but because we know who holds tomorrow, we entrust our lives in Him.
Nathan thank you for being such a blessing to Mommy and Daddy. You have made us so very proud.We love you and miss you very much.
January 8th,2008 (11 months)- Hello! I know it's been awhile since I updated our blog. Nathan still has been having seizures (about 3 a day) but we will be having a follow up appointment tomorrow in San Francisco with Dr.Fullerton. Hopefully tomorrow we will have a better idea on how to treat these seizures whether it's increasing the dose or even changing the medication. Nathan was also seen by his pediatrician Dr.Foreman last week and Nathan is 21lbs!!! We will be meeting with a dietician sometime this week to figure out if whether or not we should decrease his formula intake. Last night was a rough night for us at home. We noticed yesterday that his heart rate was consistently low compared to his regular baseline. Nathan's heart rate would usually be in the 140's but yesterday his range was from 90's to 115. Around 3am Tj and I noticed that his heart rate was dropping even as low as 64. We contacted neurology and I spoke with one of the neurologists on-call. She wasn't sure if Nathan was developing increased pressure if it was just an effect of his brain injury. Tomorrow we will have a better sense of why Nathan has been having seizures,his little twitches and his irregular heart rate.
On a happier note, Nathan will be turning one soon!!!!! Our little boy will be turning one on the 25th of this month. It's amazing how time flies. Even though it has been a rough year, it was still a year full of so many blessings.
I will be sure to update this sometime tomorrow after his appointment. God bless
December 28th,2008 (11 months)-
Merry Christmas!!!!!!!
We have been home for a little over a week now and it feels great to be home. We were discharged under the services of Pathways which provides home care. Our nurse Sandy will be coming over at least once a week to assess Nathan and provide any type of medical equipment we need. Nathan has been pretty stable other than the little seizures he had a couple of days ago. We will be going to the clinic sometime this week to do a level check to make sure he's receiving the correct dose of his anti-seizure medication. We met with his primary pediatrician Dr.Foreman last week and found out Nathan is now 19 pounds 11 ounces! No wonder our arms have been hurting! Due to Nathan's poor ability to suck, we have been feeding Nathan his formula via NG-tube. Hopefully in time with God's grace he will be able to suck and eat orally again. It has been a little tough sleeping through the night due to Nathan stiffening up and seizures, but we're still completely filled with joy with him being home. Mama Kit and Papa Jim comes and steals Nathan in the morning so Tj and I can sleep for a couple of hours.
One prayer request that the Lord granted us was to be able to take Nathan home for Christmas! Christmas Eve we spent the day with my side and then Christmas day with Tj's side. It was such a blessing being able to celebrate Christmas with family. At one point when we were in the hospital,taking Nathan home for Christmas was completely out of the question. Yet the Lord continues to be merciful and faithful to us. The Lord truly blessed us with the greatest Christmas gift this year and that gift is Nathan. He really is our miracle baby.
Thank you to all of you who have been praying for Nathan and have been asking others, people who we do not even know, to pray for Nathan. I ask that you all continue to pray for Nathan's full recovery and restoration. He still cannot smile or cry but I have faith that in time we will all see that smile again. It's been really hard these past 9 months but I still feel honored that the Lord entrusted our family to take care of Nathan.
"Before I formed you in the womb I knew you" Jeremiah 1:5
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life". John 9:1-3
We will continue to walk in faith and just completely put our trust in the Lord. I cannot thank you all enough for your prayers,gifts,encouraging words, and visits. May the Lord bless you all for your kindness. Have a happy new year! (and I promise to update this soon!)
December 18th,2008 (10.5 months)- We're sorry we haven't updated this in awhile! Jaimee and I just finished our finals today and we're so glad it's finally over. Nathan has been pretty stable these past two weeks. He has had a couple of episodes where he would have an irregular heart beat and increased blood pressure, but it would only last a short period of time. The doctors are amazed at Nathan's current condition. His fontanel feels nice and soft. Dr. Auguste, a pediatric neurosurgeon, says "He looks fantastic". One week after we were told that Nathan would die, Dr. Auguste explained to us that somehow his brain was able to redirect the blood using different veins and arteries which helped reduce the intracranial pressures. "Usually this isn't the case," Dr. Auguste says. "It is a hard task to ask of the brain, this usually doesn't happen." On that note we'll be home for Christmas! Nathan's first Christmas! He will be discharged sometime tomorrow. He will be going home with a feeding tube and will continue his physical and occupational therapies. God is good!! God continues to answer our prayers!! Thank you for praying and we urge you to continue praying because God is listening! Please continue to pray for full restoration and healing. We are praying and looking forward to seeing Nathan's smile again someday. God bless!
In Christ,
Nathan's Dad
December 10th,2008 (10 months)- After the craniotomy, I thought our battle was over and that we have shifted onto the road of recovery. Little did I know that a week later, Nathan would suffer his biggest set back. Friday afternoon Tj & I noticed that his head felt fuller and his eyes were starting to deviate more to the right again. A CT scan showed that his ventricles had dramatically increased in size and that his VP shunt was most likely no longer working. He was rushed to the OR and they inserted an external shunt to relieve the intracranial pressures. Well early Saturday morning, his pressures were only increasing and yet it he was still draining extra fluid out of the external shunt. After three scans that Saturday, my fear had become a reality. We always knew that one of the two of Nathan's main veins were already clotted and that only one vein was draining the blood away from his brain. Unfortunately the other main vein had clotted and so ultimately the blood had nowhere to go. This caused the brain to severely swell resulting in additional severe brain injuries and strokes. Dr.Fullerton sat us down and told
s she thought because of the increasing pressures Nathan would not survive and if he did it would only be no longer than a week. We were told to just enjoy him, make him as comfortable as possible and that she was glad Nathan was able to enjoy a "quality life" for the months he was with us.
Well Sunday came and Nathan's vital signs were still going strong, if anything it looked better. His intracranial pressures were starting to drop and stabilize. It even seemed as if he was starting to drain the blood on his own. Well that was confirmed Monday morning when Dr.Fullerton came to see Nathan. She agreed that the pressures had dropped and that most likely his veins had found a new way to drain the blood. She also felt that he was no longer in imminent danger of dying on us like she originally thought. Even our nurse felt suprised and confessed that he initially thought Nathan wouldn't even make it through the night. Monday afternoon we were told discouraging and heart breaking news. Dr. Fullerton felt that because of the severe brain injuries and strokes Nathan had suffered from Saturday, she felt that he will never recover and that Nathan will just remain in a vegetative state. She felt that he will never be able to communicate like he used to,he will never learn to walk or talk and they were also doubting his vision and hearing.
Looking back..Saturday night when they told us that we were going to lose our son..I honestly no longer knew what to pray for. I didn't know whether or not to continue pleading for Nathan's healing or to just accept the fact that maybe it was time for the Lord to call him home. Tj and I prayed to the Lord and said "Lord if you are going to perform a miracle..please heal Nathan and restore him 100%..but if you plan on calling him home..then please grant us the comfort and strength that we will need..either way..we want to be obedient no matter what You have in store for Nathan". Well Monday came and they told us that even if he were to survive all of this..he would be in a vegetative state. Immediately I got scared..confused..and hurt..and I asked.."God, if you're going to let him live..why are you going to let him live as a "vegetable"?..has he not suffered enough.." I thank God He blessed me with such a wonderful encouraging man of God to be my husband. Tj stopped, held my hands and looked into my eyes. He said "Jaimee, you need to be thankful. Maybe God does want to restore Nathan..and maybe he doesn't want to do it now. Maybe it will take years but at least Nathan is here..the prognosis has changed..so let's be thankful." He then reminded me of the story of the Israelites and how they wanted out of Egypt. Well the Lord did deliver them but they only ended up complaining of being tired and hungry. God was hurt and felt disrespected because even though he gave them what they wanted they were still ungrateful.
I stopped and asked God to forgive me. I realized that I was becoming impatient and that I needed to just let God be God. I have come to realize that as long as Nathan is still here..the Lord still has a plan for him. "For I know the plans I have for you,” declares the LORD , “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11). I was wrong for almost giving up so soon Saturday night. My little boy has opened my eyes..it seemed as if he was trying to tell me.." mom and dad.. I'm still here..don't give up on me". We will not give up praying for full restoration of Nathan's health as long as he is here. He has already proved the doctors wrong so many times. Why? that is because medical science does not determine the prognosis. The Lord does. Yes we have been blessed with such wonderful educated doctors who have dedicated their lives to saving children like Nathan..but like us they are only human. We can read so many books and educate ourselves as much as we can but our knowledge and power will never ever compare to the Lord's. One doctor even said, " Well..it's hard to answer that question because Nathan is so unpredictable". Again, science is not everything and when the doctors give up, the Lord takes over.
Maybe the Lord didn't want to glorify his name with just an embolization, or even a procedure as big as a craniotomy..I don't know.Here my son is being diagnosed as a "vegetable" and doctors believe that he will never recover..miracles are real and my God is healing miracle working God. "Behold, I will bring to it health and healing, and I will heal them; and I will reveal to them an abundance of peace and truth." Jeremiah 33:6, “Looking upon them, Jesus said, ‘With men it is impossible, but not with God; for all things are possible with God.
" Mark 10:27
It isn't over until God says so. Would you please join our family in praying for Nathan's full restoration and healing
December 5th,2008 (10 months)-This morning we noticed that Nathan's eyes were a little more deviated to the right and his fontanel felt a little fuller than yesterday. They ordered a CT scan and it revealed that his ventricles had gotten a little bigger again. This was most likely due to the re-absorbing blood from the previous bleeds. The blood mixed with the CSF fluid makes the CSF fluid a little thicker thus causing a clog in the shunt. With the clog there, the CSF fluid has no way of draining into his abdomen which eventually results in increased cranial pressure.It is 1:07 PM and he is currently in the operating room. They are going to insert an external shunt to drain the excess fluid. We will be transferred sometime later in the day back to PICU. The plan is to leave in the external shunt for a few days and then replace the shunt with a new one.
Please pray for a successful operation and for strength as he endures another procedure.
Please include Tj and I as well. Thank you
December 2nd,2008 (10 months)- Yesterday evening Nathan was transferred to the regular pediatric floor. He no longer has the head wrap, the JP draining tube,and the art line. Most importantly, on Friday they removed the breathing tube because he was able to breathe on his own! Although he is still receiving his feeds through a feeding tube, an occupational therapist is scheduled to come and evaluate his suck. Hopefully with practice he will soon be able to drink from a bottle again. His blood pressure is still a little high but the doctors are not too concerned. Dr. Gupta told us that it is most likely due to post surgery pain. He is being given tylenol, phenobarbital and morphine. Nathan is a little more alert and can stay awake for even as long as three hours at a time! His fontanel feels nice and soft and so the doctors feel that either the shunt is working properly or Nathan could even be draining the CSF fluid on his own. Nathan's eyes still deviate to the right but we have noticed him trying to bring them to the center. The doctors feel that in time as the blood re-absorbs the eyes should slowly heal and hopefully function normally. He still doesn't express any type of emotion such as pain, discomfort or even happiness but hopefully again in time this will resolve. Dr.Fullerton and Dr.Gupta said it would be best to just let him recover for the next 6 weeks (considering all that he has been through) and from there he will evaluated. By that time Dr.Fullerton will be able to determine if Nathan suffered from permanent brain injuries from the bleeds and if so, to what extent. For now, we are just letting Nathan recover and by sometime this week along with the doctors we will come up with a plan for rehab (PT/OT) and homecare.
mini praise report: Nathan has been keeping his mouth shut a majority of the time but I decided to take a peek at his gums.. lo and behold! I saw white! One white spot within the center of his bottom gum. I washed my hands and felt his gums and it was confirmed: Nathan is growing his first tooth =)
"Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him" John 5:14-15
Thank you everyone for praying for Nathan and his recovery. God bless
November 27th,2008 (10 months)- First and foremost I would like to thank the Lord for what he has done. Not only did he sustain Nathan's little body during the 8 hour procedure but it was obvious that the Lord took control over the surgery. Nathan was wheeled down into the children's operating room around 7:45am. Around 9am they sedated him with anesthesia and inserted the external catheter (extra iv incase he were to need a blood transfusion). Around 10am Tj and I received a call from the nurse in the OR and she let us know that they were about to start the craniotomy. About every 2 hours until 8pm we received calls assuring us that Nathan was stable and his vital signs were fine. Finally around 8pm Dr.Gupta met Tj and I along with the family in the waiting room.
Dr.Gupta was very pleased with the results of the craniotomy!!! The goal was to eliminate all visible AVMs and praise God they were successful in doing so. Nathan did need blood transfusions because he lost 1 1/2 to 2 times his blood volume but thanks to God he bled slowly and as a result they were able to transfuse the blood back into his body in time.
The next step is to pray for Nathan's recovery..we're not sure on how he will be after all of this..but we're praying that he will eventually be back to the same smiley baby we all know. Please also pray for Nathan's future angriogram. Dr.Gupta stated, "we cannot surely say that all AVMs are completely gone so only time will tell". Please pray that the angiogram will reveal no evidence of any AVMs and it will be officially the end of it! The Lord has already gotten us this far and we're filled with joy because we never imagined we would even get this close to complete healing. This morning they also performed a CT scan and thanks to God everything looked fine. There wasn't a new bleed and the blood from the previous hemorrhages are in the process of draining.
Nathan is currently sedated and intubated (he has a breathing ventilator). The doctors have prescribed him sedatives, antibiotics for pain and steroids to decrease the swelling of the brain. He is closely being monitored and hopefully everything will be better later in the day. They plan on slowly weaning of the sedatives and hopefully later in the day if all goes well they will also remove the breathing tube. I want you all to know that God heard all of your prayers. We have read every single e-mail and comment word for word and we were so amazed and so grateful. Thank you again for your prayers,encouraging words,hospital visits, phone calls and everything else. We are very blessed to have such a big support network. God has performed so many miracles in just within the past 2 weeks. The Vp shunt insertion was a success, even with the bleeds Nathan was reactive (Dr.Fullerton said most people usually go into a coma with the kind of hemorrhages Nathan suffered), the angioplasty helped relieve a lot of the pressure, and Nathan's craniotomy was a success! We serve a great powerful merciful and loving God!
I hope you all have a great and happy Thanksgiving! Despite the hospital environment, this is the best Thanksgiving for us because the Lord has answered all of our prayers. We have so much to be thankful for and we are so happy that we will get to spend it together as a family. God bless you all.
"Shout for joy to the LORD, all the earth. Worship the LORD with gladness; come before him with joyful songs. Know that the LORD is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the LORD is good and his love endures forever; his faithfulness continues through all generations." Psalm 100
November 25th,2008 (happy 10 months nathan!)- We're already one day away from Nathan's craniotomy. First of all I just wanted to say thank you to everyone who signed our guest books,e-mailed us words of encouragement and forwarded our prayer request to others. The e-mail was sent out only 2 days ago and it has already gone around the world! It's amazing how the Lord has blessed us with technology to recruit prayer warriors. We're just overwhelmed by all the support and encouragement you have all given us. We thank you by standing by us in this battle.
praise report: Nathan opened his eyes!!!! His eyes have been barely open for a week and a half. Yesterday mama Kit and grandpa Jim were giving Nathan a bath as they were singing hyms. Slowly Nathan started to open his eyes more and more. Grandpa Jim called me from the laundry room and as soon I saw Nathan my eyes were filled with tears of joy. Thank you Lord for all that you have done so far and what you will do in the future. His neurologist Dr.Fullerton came in today and said that he "looked great!" Dr.Fullerton also mentioned that usually people who suffer from bleeds as bad as Nathan's go into a coma. Suprisingly Nathan has been reactive to touch and sounds. God is so good!!!!
They will be taking Nathan down to the operation room tomorrow around 7:45 in the morning and surgery should begin around 8:30. The surgery could take at least 3 hours but for how long we don't know. That will depend on how well it goes and whether or not he will be needing a blood transfusion (Tj,mama Kit and I have already donated and so he should be set). I spoke with the neurologists and neurosurgeons yesterday morning and they said that it will be a risky procedure. The chances of him not making it during or after were quoted "10-20%" & the chances of him having additional injury or stroke from the surgery is "30%". That may be high but it is actually lower than the percentages they gave us when they were supposed to do his craniotomy last July (mortality: 40%-50%). Also in April, they even said that they doubt they could even treat the AVMs at all. I really do feel the Lord has been preparing Nathan for tomorrow. I pray that tomorrow the Lord will reveal his power and love through the healing of Nathan James.
November 24th,2008 (almost 10 months)-To our dear prayer warriors, we need your prayers now more than ever. The doctors were giving us a grim assessment of Nathan's condition the other (Saturday, Nov. 22). They said he took a turn for the worse and prognosis is poor. He suffered another bleeding inspite of all the procedures done to him. They were almost giving up on our precious gift.
We are still hopeful because only the Lord can truly touch and heal Nathan. Please pray for our specific requests attached (located in the homepage). We are hoping for whole army of prayer warriors to intercede for our little Nathan. This is not our battle but the Lord's. He is our stronghold, our shelter, our rock and our deliverer. Likewise, you had been our encouragement; thank you for visiting him in the hospital; for all the email, phone calls and most of all for diligently praying for him.
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." Hebrews 4:16.
praise report: Supposedly Nathan's gag relfex has been on and off. The gag reflex is what protects you from choking and aspirating fluids into the lungs. The doctors felt that it would be best to advance the feeding tube lower into the stomach in the jejunum. Last night the nurses tried to advance the tube but after the x-ray it supposedly wasn't in place. The plan was to wait for the morning to possibly take out the tube and do it over again. We just found out that they will be starting Nathan's feeds because overnight it positioned itself and it is now in place. Thank you Lord!!!
November 22nd,2008 (9.5 months)-Nov. 20th, Nathan was taken down to OR/angiogram suite around 10:00 am and was brought back up around 7:30 pm. They found that the veins in the back of his head were narrowing, almost obstructed causing a lot of pressure inside. The pressure had built up inside his head that was causing the bleeds. The doctor said if the normal pressure is around 30mm, his was about 100mm, no wonder he was in such pain/headaches. They performed "angioplasty" to open up the major veins and it helped so much to release the pressure that caused the bleeding. It helped his circulation by 70%, praise God!!!
They said he needs surgical procedure to correct the remaining fistulas/malformation in his head. They couldn't do embolization because of the location of the fistulas, and his case is very complex and "challenging". They want to do the surgery (craniotomy-open up the back of his head) on Wednesday November 26 at 8:30am with Dr.Lawton & Dr. Gupta.They're a little optimistic because compared from last July, he is bigger, has more blood volume, and even the blood vessels are a little bigger.
He is stable right now, slowly opening his eyes and moving his extremities. He is still not fully awake and alert as before. They placed an "NG" tube (naso-gastric) through his nose to the stomach to feed him since he hasn't eaten since Sunday. Pray that he will regain his strength for the surgery. I will be sending the prayer list again and would most appreciate your continued prayer for our little gift
November 20th,2008 (9.5 months)-We met with neurologist Dr.Fullerton today and she told us that Nathan has been scheduled for an angiogram tomorrow to better understand the cause of the bleed on Sunday. He will also be under general anesthesia. The doctors are concerned about Nathan's AVM. They are not sure if the AVM has gotten larger or if new connections have formed which could have caused the bleed. If that is the case tomorrow, they will do an embolization to treat the remaining AVMs. The embolization is the same procedure that Nathan had last April and July where they coiled and glued the malformed connections. We pray that the Lord will intervene in tomorrow's surgery and that he will heal Nathan by getting rid of all of the AVMs for good. Please pray for the anesthesiologist that he or she will give the correct amount of anesthesia into Nathan's precious little body. Pray that the interventional radiologists will be alert, awake and precise with what they want to accomplish. Pray that the Lord will guide the neurosurgeons/neurologists every step of the way including the decisions they make and the nurses who will be assigned to take care of Nathan after the procedure.
Dr.Fullerton wasn't too sure if the bleed had caused additional permanent brain injury but once the blood re-absorbs they will have a better picture on how well they think Nathan will recover and if he will be completely be back to normal or not. She did mention though that she felt optomistic and that she really does think Nathan in time will to be back to normal.
Please pray that Nathan will be back to the same smiley baby we all know.
Around 10:30pm last night Nathan had a 30 minute seizure. He wasn't responding, his heart rate was dropping but the rest of his vital signs were fine. They ordered a CT scan and unfortunately it revealed a new bleed within the same area of the previous bleed. The doctors believe that it was the new bleed had that triggered the seizure. They are still not completely sure what the cause of the new bleed is but now they are starting to think that it could possibly be the AVM. Nathan will be transferred to PICU south where it will be one patient to one nurse instead of two patients to one nurse. They will just monitor him throughout the night till the angiogram. Hopefully tomorrow we will have a better understanding what has been causing the bleeds.
November 17th,2008 (9.5 months)- We were transferred back to PICU last night around 1am. Nathan was just being very very sleepy yesterday and started to lose his appetite. Around 9pm as I was holding him I noticed his right eye was deviated all the way to the right..and it stayed there. His vital signs were good but he wasn't responding to our voices and it seemed as if he couldn't even see Tj & I. They ordered a CT scan and they found that Nathan suffered from a new bleed. It was a moderate bleed within the ventricles. Neurologist Dr. Heather Fullerton told us that it was most likely due to the decrease in pressure within the head which caused a shift. As of right now Nathan has a slight right side weakness, his right eye is deviated all the way to the right but he is alert and awake. The doctors said that usually in these cases, the symptoms go away as the blood re-absorbs. Also, Dr. Fullerton told us that there would be a good chance that the blood could clog the shunt. If that does happen, Nathan will need to undergo another surgery where they will place a shunt from the inside out and the blood will just drain into a bag. Once the blood is gone, he will undergo the same surgery and they will place a new shunt in (like what he has now). They ordered an ultrasound for tomorrow to check the ventricles to see whether it stayed the same or if it increased in size.
November 12th,2008 (9.5 months)- On 11/10 Nathan was being very fussy, crying with tears and did not want to eat. That night we decided to take him to the urgent care at the Valley Health Clinic. Due to his medical history, the doctors decided to admit him into the hospital just to make sure he didn't have another bleed. A CT scan was ordered and we later found out that he is accumulating fluids in the brain which is called hydrocephalus. The hydrocephalus is now considered moderate and so because of that VMC transferred us to UC San Francisco. I spoke with a neurosurgeon this morning and he told me most likely Nathan will undergo surgery where they will insert a shunt into the brain to drain the extra fluids. The surgery will be scheduled for either tomorrow or friday. Nathan is doing fine now..he's been a little fussy but he still manages so smile every now and then.
September 18th,2008 (7.5 months)- Nathan is doing great! He's been seizure free for 3 months going on 4! He has physical therapy twice a week and has been improving a whole lot. He loves to roll and he we just started him on rice cereal. He is also lifting his head a whole lot better now. He's been a happy baby and we as a family have been so blessed with his improvements.
August 12th,2008 (6.5 months)- Hi everyone! It's been about a month since Nathan was discharged from UCSF. August 7th Nathan had a CT scan and on August 8th we had a follow up with Dr. Fullerton. Great news! the CT scan showed that there hasn't been any ongoing injury to the brain since the embolization! praise God! She was glad to hear that Nathan had been seizure free for a little more than 2 months now. She was also suprised by his development since she was expecting Nathan to be the same since he was discharged. Dr. Fullerton stated " He looks so good" and " He seems like a completely different baby!" Another great report! Prior to Nathan's last embolization, it was easy to hear the high pressured abnormal blood flow in Nathan's head even with a stethescope. At the appointment, Dr.Fullerton stated that she couldn't hear it anymore. Yay! God is good. The family has been doing great and every milestone Nathan reaches just fills our hearts with pure joy and excitement. He's an official thumbsucker, likes to talk and laugh, a professional at tracking, can now hold up is head at 45 degrees with no help and is on his way to rolling. Nathan is truly a miracle baby. Thank you all for all of your prayers.
July 15th,2008 (5.5 months)- Today Nathan was evaluated by a physical therapist and a nurse of Early Start..Nathan qualifies and he will be starting in a month and is scheduled to meet with a physical therapist once a week. Fortunately with this service, they will actually be travelling to our home. Nathan is currently under another physical therapy program located near VMC. He also meets with his physical therapist once a week. We know Nathan is in good hands and we have been blessed with many resources. Also as of yesterday Nathan has found his voice!! he's been constantly cooing!! I posted a new video of him and it is located on the photos/vids page.
July 6th,2008 (5 months)- Last night, Saturday, July 5th at around 10:30 pm, our home was again filled with excitement. Nathan is home!!!! He had a hard time feeding after those long procedures but he finally got the hang of things. After being hooked up in an EEG machine for 5 hours, the doctors determined that he was stable to go home since the study revealed no seizure activity, praise God. The broviac cath on his chest was pulled out (Grampa Jim almost passed out! of course, with Nathan crying so hard). After a few more hours, he was discharged home; still on phenobarbital & Iron and with the addition of baby Aspirin to prevent any clotting in his head.
The three weeks we expected to be at the hospital--turned to 6 days!!
The hundreds of arteriovenous malformations in his head--turned to one connection!!!
The delicate, risky brain surgery did not even have to happen!!!
God is so good.
"Prove me now...." Malachi 3:10, J.H. Jowett wrote, " The ability of God is beyond our prayers, beyond our largest prayers! I have been thinking of some of the petitions that have entered into my supplication innumerable times. What have I asked for? I have asked for a cupful, and the ocean remains! I have asked for a sunbeam, and the sun abides! My best asking falls immeasurable short of my Father's giving; it is beyond what we can ask."
July 4th,2008 (5months)- so they decided to hook up nathan to a video EEG because he hasn't really been eating as well as he used to due to a poor latch and weak suck..so he was monitored for about 2 hours..today july 5th they took of the wires since he did not have any seizures the previous day..we might be able to go home today but that'll just depend on how well he eats later on
July 3rd,2008 (5 months old)-After a grueling 13 hours of angiogram and embolization yesterday, Wednesday, July 2nd, Nathan was finally brought back up to PICU at around 10:30 pm (he was taken in at 9:00 am) with a breathing tube and sedated.
Dr. English, part of the interventional neuroradiology team spoke to us regarding the procedure. Praise the Lord! they were able to treat a majority of the malformations eliminating all but one abnormal connection. They worked really long and hard to embolize the malformations and was pleased with the result. They still had to meet with Dr. Fullerton and Dr. Gupta to discuss their final decision.
Dr. Fullerton and her vascular neuro team came and talked to Jaimee & TJ this morning. Initially they said he had "hundreds" of these abnormal connections but now only one remains. They were amazed and surprised to see how well Nathan did and that they did not expect this to happen. One of the doctors said she was really shocked since she was there when Nathan was first diagnosed with AVM in April. Also, instead of 3 pouches, they found 4! making it much easier to treat! They were able to decrease the pressure in his head by 80% and MOST OF ALL, HE DOES NOT NEED SURGERY anymore!!!!!! Praise and Glory to God!!!!
How can one explain this? there is no other explanation but the divine intervention of our merciful God!!! He answered all our prayers and even more!!! This is a miracle and you are all part of it....thank you for pleading with us. He is truly amazing and such a wonderful God.
The doctors still think we are not "out of the woods"; there are still uncertainties ahead, he could still have seizures and they are not sure of his development. They still have to work on that "one" connection later on when he is a bit older but we will continue to trust in Him. We will also continue to tell of His wondrous grace because Nathan is a testimony of His healing power. We still believe for complete and pray for TOTAL healing.
We appreciate the outpouring of love through e-mail, cards, calls, bringing food to the hosp, the generous gifts, even just the thoughts and silent prayers you have shared....they are all very uplifting to our souls. God bless you all!
July 1st,2008 (5 months old)- Nathan was taken down for angiogram and embolization at around 9:30 am. Daddy Tj escorted him down and was able to be the last person Nathan saw before he was put to sleep. They didn't bring him up until around 3:30 pm. He was under general anesthesia and he came up with an airway device. He was sedated with Morphine so he won't move too much since they went in his left groin for the angiogram and don't want the risk of him bleeding. We were a bit concerned because when he came up, they couldn't feel the pulses on his left foot. They even used a doppler to listen but they can't seem to get it. It worried us a little bit but they reassured us that the doctors are not worried since he was moving his left leg. He would open his eyes briefly and goes back to sleep.
Dr. Fullerton then spoke to us and relayed some good news. They found that Nathan had developed what she called was "pouches". She said each "pouch" feeds into about 50 of those arterial malformation/fistulas. They didn't see these when he had his first angiogram/embolization in April when he was about 2 mos. old. She said embolizing or coiling each "pouch" will treat about 50 of those arterial fistulas, instead of treating each individual fistulas!!!! This is so good! that means there's less to do because when they first did the angiogram, they were pessimistic because they said he has "hundreds" of those fistulas and it's almost impossible to treat all of them. Dr. Fullerton was happy to say that maybe his case is after all, curable, praise the Lord!!! She even said he might not need the surgery at this time if they can coil these "pouches".
We truly believe that God had intervened with Nathan. He is our creator and we believe He put those "pouches" miraculously. We couldn't contain our joy when we heard this. God is so good to us. We believe that He is in total control of everything!!!! I'm so glad we're serving and believing in a living, compassionate and merciful God.
Tomorrow Nathan will be wheeled down to the operating room again to undergo another embolization.
June 30th,2008 (5 months old)- Nathan was taken down to the operating room at 9:30am so that the doctors can insert a broviac into his chest. The procedure itself took about half an hour and another hour to recovery in the recovery room. They performed a chest x-ray and praise God everything looked great! Nathan was frustrated and ready to eat and so he was able to nurse until 12am again. Poor Nathan was sore and fussy the entire day and so tylenol was given to him to ease the pain.
June 29th,2008 (5 months old)- We were admitted into the pediatric floor at 4:30. Nathan's IV was inserted around 11pm and thank God it only took them two tries! (compared 23 tries he had to go through the first time we were admitted). He was able to nurse only until 12am. He slept throughout the night.
June ??, 2008- Nathan was scheduled for an appointment with a cardiologist Dr.Soyfer to do an echocardiogram to make sure his heart was stable enough to endure surgery. We were told that most babies with Nathan's condition present in heart failure and fortunately Nathan's heart is in good condition and that he doubts Nathan will develop heart failure from the malformation in the future (amen!). After, Nathan had a 20 minute heart ultrasound and again thanks to God we found out that his heart is in perfect condition!
June 19th,2008 (4.5 months old)- We drove again to UCSF for an appointment with the pediatric neurosurgeon Dr.Gupta and Vascular neurosurgeon Dr. Lawton. A team of 30 medical experts reviewed Nathan's case and also felt that surgery would be the best option now that Nathan's brain had been injured. The doctors explained to us the risks of the surgery which were: 25% chance Nathan will lose too much blood at a fast rate and not making it, 25-40% chance Nathan will have additional brain injury from the surgery itself and a little less than 50% that everything will go smoothly and as planned. There will be three steps leading to the craniotomy which are: broviac insertion, possibly 2 embolizations and then the craniotomy. That day Tj's mom, Tj and I decided to walk to UCSF's blood bank to donate for Nathan. Nathan's type is A+.
June 6th, 2008 (4.5 months old)- We drove to UCSF at 7:30 in the morning for a head ultrasound and a follow up appointment with Dr. Heather Fullerton. We were told that when they compared his first CT scan to his latest CT scan which was in May, his malformation had caused moderate brain damage. We were given two options which were: 1) leave the malformation alone and let Nathan grow knowing that his brain will be severely injured and he will most likely develop cerebral palsy or 2) push for surgery to cure the malformation with a high risk of Nathan losing too much blood and not making it. Tj and I felt that despite the high risk of Nathan not making it during surgery, we felt that it would be better to take the risk rather than watch our son's brain deteriorate.
May 14th,2008 (3.5 months old)- Around 4am Nathan had another seizure at home. This time his lips started to turn blue and so we called 911 and was sent to ER at Valley Med. They felt that his Phenobarbital level was the reason to his seizure. They raised the medicine level and later around 11am we were sent home. Around 12:30pm Nathan began to show signs of an oncoming seizure which included lip smacking and a blank stare. He began to seize and this time his whole body started to turn blue. We were back at Valley Med and they decided to do a CT scan. Praise God there wasn't any new bleeding. We were then transferred to UCSF where Nathan had a video EEG. He continued to have sub-clinical seizures over the night and so they decided to raise his Phenobarbital level again. After another 24 hours of monitoring, Nathan was ready to go home
April 7th,2008 (2.5 months old)- Nathan had his first angiogram and embolization. The doctors found that Nathan had hundreds of malformations and they felt they couldn't completely cure it at the time. If anything they doubted that it would even be curable. With the embolization, they tried to glue/coil as many veins & arteries as they could to relieve the pressure in his head. With hundreds of malformations still left untouched, they decided that it would be best to wait for Nathan to become bigger so that his body would be able to handle a craniotomy by the age of one. After recovering, Nathan was discharged with an anti-seizure medication Phenobarbital
April 3rd, 2008 (2.5 months old)- Nathan had his first seizure and was taken to Santa Clara Valley Medical Hospital. After CT scans and MRIs it showed that Nathan had a bleed in the head which later lead to the discovery of his AVM (arterio-venous fistula malformation) which occurs in 1/14 million. Nathan was then transferred to UCSF
