Friday, December 31, 2010

Last update for 2010!! Where has this year gone?!?

Noah's fevers have gone up a little and he was cultured again this morning. Already, his blood has grown bacteria as well as his breathing tube. He has been on antibiotics for a couple days now and will continue to be until the infection is gone. We are still waiting for the meeting about Noah on Monday. His pancreatic enzymes have doubled again today so they have stopped his feeds. We were doing so well with his tolerating the slow drip! I am so frustrated! I know the doctors are too. We have no idea as to what is causing his elevation. But I am going to give it to God.
Last night, Noah had been having a hard time settling for the night. We had tried his PRN's but nothing was really helping much. I am having an even harder time watching him like this. I feel like I can't help him. Sometimes I feel as if I have triggered his agitation is I brush his arm with my hand. Sometimes I avoid kissing him good night because I fear waking him and him being restless all night because of it. I wish I could crawl into his crib with him and snuggle. Maybe I should ask them for a big kid bed so that I CAN. I can dream!

Anyway.. Aaron and I are going out on a date tonight. Aaron has spent his birthday money to take me to see the Harlem Globe Trotters!!! I am SUPER excited!!!!!! Then we will be coming back to the hospital to watch 2011 drop in with my boys and get my New Year's kisses! Happy New Year everyone!
Thursday, December 30, 2010
Noah had another echo done today, the reason being that he was started on epinephrine again. The results showed high pressure in the right side of his heart. So they will be discussing him on Monday in the cardiac meeting. He could need another cath done to determine just how high the pressures are or they could start him on a new medication.
His withdrawals are getting a little worse. It is like he is hyped up on caffeine and is restless. We are having a really hard time balancing this out... but we have been down this road before and we know it will end.. just difficult to live in the moment. His nights seem to be worse than his days. We just need a lot of prayers this week. Aaron is going back to work on Monday and it is making me nervous with Noah's condition right now. But we both need him to go back... he needs to have a bit of normalcy to get his mind of things here and then there is the financial end of things. But we are leaning and trusting God for ALL things and He has been faithful.

I can not wait till we are done with this stay! SO many things going on right now and it is all tearing me down emotionally.

Please continue to pray for Noah's pancreas... there was an increase in his enzymes this morning. Pray for his heart pressures to normalize. For his withdrawals to start getting better and NOT worse! Pray for our [future] living situation... We have decided to NOT go with the apartment complex. They had been giving us too many problems for us to be comfortable with signing a year lease with them. We need to have a home for Noah to come home to where we have the space. Please pray for me, as after this Sunday, I will once again, be here with Noah on my own for the most part. I will not have transportation once Aaron goes back to work so the only time I can get out of the hospital is when he or other family members visit. Thank you.
Tuesday, December 28, 2010

Not today...

Noah did not really pass the trial yesterday so today they will not be extubating him. We are not sure if he exactly failed because there was a lot going on when the respiratory therapist turned down his settings. Once when they were suctioning him yesterday, his heart rate dropped and his color was really pale. He did recover but it took a lot of reserve for him to get his color back. Yesterday was a really rough day as far as withdrawals go. The doctors are trying to come up with a good sedation regime so that he is still comfortable but not totally knocked out. So far, today, he is doing great. He woke up for me and was actually playful and smiled for me. :) And he actually tried to reach up and touch my face... it looked like he wanted to kiss me because he was touching my cheek and trying to pull my face toward him with his mouth open. So cute! But the stinking breathing tube was in our way so I had to settle with kissing him on his hand.
Noah's pancreatic and liver enzymes are coming down. MUCH better than last week! His belly is smaller and less firm. Nice and soft and squishy. We are actually going to try small feeds today. They are also going to try a different formula that is broken down already so it will be easier to digest. Just until he is tolerating his feeds again. His kidneys are doing MUCH better! I love answered prayers!
So, as far as the trials go, we just did a half hour worth and he seemed to tolerate it well. They may try an hour worth later this evening. This is going to help get his respiratory strength back up so that he will do better with extubation. They are also switching his breathing treatments from Albuteral to Atravent, to see if this will work better as far as his malasia. He still has a lot of secretions but it seems to be better. He is just weak still.
This is Aaron's last week with us up here, then he will be going back to work. It has been really nice having him with us this whole time. Pray that all three of us will be together at home very soon!

Prayer requests:
For the withdrawals to subside and for him to be awake and comfortable.
For his airways and lungs to strengthen so we can get the breathing tube out.
For his overall strength and healing to continue to improve.
For his toleration of the new formula and feedings so we can get him back on normal nutrition.
That his recovery quickens even more.
Monday, December 27, 2010

Big plans for tomorrow

Tomorrow they plan on extubating Noah. This will be second time they try so please pray that his lungs and airways are ready and strong. Today, they are doing a trial with the tube still in, they just turn down the vent settings and let him do all the work. They have been doing a lot of weaning of his sedation drugs over the weekend and he is having withdrawals again. But we need to get this over with so we will push through this rough time and rely on God for our endurance, comfort, and strength.
One thing that I discovered yesterday when we got back to the hospital was that Noah had 3 blisters on his neck and a little yeast. I was very upset! But it is not being taken care of and we are trying to keep the area dry and exposed to air.
Noah's fever curve has been trending down. AMEN! He has been more awake in a little interactive with us... yesterday morning, I was snuggling up to his cheek and he tried to reach up and touch my face. I put my cheek in his hand and he petted my face and then tried to grab my eyelashes! So sweet. I fall more in love with this sweet boy with every second that passes! I can't wait to hold him again.

Aaron and I were able to go to my mom's for Christmas Eve and day. It was really hard watching all my nephews and niece open their gifts and play together. Noah was missing for that picture. I kept remembering moments of Noah's first Christmas last year. I cried quite a few times thinking about it. I missed not having Noah on my lap wanting to get down and roll around in all the wrapping paper. He would have really enjoyed himself. But it's okay... when he DOES come home, I don't care what month it is, we will celebrate with Noah.

Prayer requests:
For tomorrows planned extubation to go smoothly and for his to PASS!
For his pancreatic enzymes and liver enzymes to keep going down.
His overall healing to improve.
For his withdrawals to GO AWAY!

Thank you. I pray everyone had a GREAT Christmas! And a great New Year!
Thursday, December 23, 2010
Noah's labs from early this morning show an increase in his pancreatic enzymes so they will be doing an ultra sound sometime today. Please pray for answers.


Chest tubes, heart lines and pacer wires ALL got pulled this morning! YAY!! They are even saying that they are going to turn off his Fentanyl!!!!

When Aaron and I got to the hospital this morning, Noah looked really comfortable despite having a distended belly again. He was sleeping peacefully. I kissed him on his face and he opened his eyes and sleepily looked at me. Even though he did not smile, I knew he was happy to see me.

All of his other numbers are looking really good. Praise God! So please pray for continued healing. Pray for his liver and pancreas to heal. Please pray for his lungs to be healthy and strong enough for extubation and for him to PASS extubation!

*** Mommy and Daddy know of a special visitor that will be coming to visit Noah tomorrow morning!!!*** I will post video and pictures tomorrow :)
Tuesday, December 21, 2010

4 days post-op...

Noah is doing good as far as numbers go. He is still one of the sickest kids on the unit but he is making slow progress. Today they have weaned his Fentanyl and Versed a little. I don't know if he is liking the change though, he has been thrashing around and grinding his teeth a lot today. I hurts to watch him like this. I feel helpless. I can not wait until this is all in the past and I can look back at it with distant memories. Right now, in the moment, this seams surreal to think about. Some days I feel like it is never going to end... like the pain is always going to be there. It is hard to picture him being a normal toddler getting into things and being naughty. I can't wait for that!
Lately I have been feeling like this hospital stay is going to be our longest one yet. Only 20 more days and this WILL be the longest stay. ::sigh:: :/ WE WILL GET THROUGH THIS!
I think I need to end the update for now... otherwise it will end up as a rambling.
Sunday, December 19, 2010
Noah had a rough start to the night last night. His temperature peaked at 42 degrees Celsius which is about 107.6 degrees Fahrenheit. VERY scary! They put him on a cooling mat and cooled him down as quickly as they could. He was awake and looking at the doctors and nurses around him, so they were not too concerned about him having seizures but it is not certain. Since then, he has blood work done every 4 hours and they are keeping a close eye on his numbers. Some other things that they are concerned with his temp being that high, is muscle break down. This is also measure in his blood. It is elevated to 3,000's (which is really high) but it is not as high as kids who have severe muscle break down... theirs would be in the 20,000's. They are checking this number every 4 hours or so. Something that showed in the blood work, that they were not looking for, was a HUGE escalation in his liver enzymes. This is bad! It could be from his temp being so high, but once again, this is also a number they are watching VERY closely.
Some positive outcomes of the night include his Fentanyl being weaned from 15 to 8! This is a HUGE answer to prayers! This is a drug we ALWAYS have trouble coming off and he is doing so well! PRAISE GOD!!!!!!!!!!!!!!!!!!!

I feel like there is some information I have forgotten to mention... but please continue to pray for strength for Aaron and I as well as Noah. My brain is to scrambled to even try to come up with a prayer request, but God knows His plan so just continue to pray for His will!
Saturday, December 18, 2010

Almost 24 hours post-op!

Noah is doing very well. His urine output is not doing as good as they would want but they are keeping an eye on that. They have turned off his paralytic about an hour ago and so far he is started to move his tongue and a little eye movement. His sedation meds are even higher than the last operation. He has not gotten swollen yet but we should see some swelling in the next few days. His heart rate is still high but given the lengthy procedure yesterday, his heart is just a little mad. His blood pressure is stable. However, post-op his pressures were on the low side. During surgery, he had a moment of hypertension but that was the only time that his numbers were not good.
The second VSD was left open. Dr Mitchel was unable to close it safely enough. The position of the VSD was in such a spot that he was unable to see. But he is hopeful and optimistic that Noah should not have any trouble having a more "normal" active life... it will just be a short term struggle with recovery.

Things to focus on in your prayers:
Noah's overall recovery to be quicker this time around.
Urine output to improve.
Noah's pain control and sedation to be balanced well and no struggles.
His airways and lungs to heal and be strong enough for when it comes time to extubate him.
That the second VSD to close on it's own/not cause any problems and not require any additional operations or procedures.
For his strength to return.
Easier time getting him back off the sedation drugs.
When it comes time to try feeding him, that his gut will work and will not cause him any discomfort.

Thank you everyone!
Friday, December 17, 2010

Sugery updates!!!!

******** Today's updates during surgery will be added to this post!!! So please keep scrolling down for the additional updates. I will be updating this post EVERY HOUR! ***********

First update 8:30am CT:
They came and got Noah at 7:30 this morning. It is now 8:40, Dr Mitchell just came in and explained everything that will be done during surgery and that he is very optimistic that closing these residual VSD's will help him improve with his recovery. They had just completed an ECHO done through his esophagus and it showed just 2 holes... on at the top of the patch and one at the bottom. Before they open him up, they will be doing a bronchial scope to look at his airways. Stay tuned!

Second update 10:00am CT:
Dr Mitchell has made made the incision into Noah's chest and has started dissecting through the scar tissue. Prepping for the transition onto bypass is starting. Vitals are stable. Dissection is going to take a while.

Third update 11:00am CT
Noah has been on partial bypass for about 50 minutes and complete bypass for 25 minutes and Dr Mitchell is now working on finding/closing the first VSD. Noah is doing well and surprisingly, the dissection has gone a lot quicker than expected. PRAISE GOD! **** My mom is helping me keep busy... she is cutting out fabric so I can make some crayon rolls. I have my own little sweatshop going on here ;) LOL! ****

Forth update 12:00pm CT:
BOTH VSD's are now CLOSED! They are now warming him back up. His heart is beating on it's own!!!!! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!! They will now do an ECHO to make sure there are no more residual holes and then start to take him off the bypass machine. Things are going really smoothly!

Fifth update 1:00pm CT:
Prayers please!!! Noah is going back on bypass. They had taken him off bypass and had done the ECHO... the hole on the bottom did not close properly. They did blood work and determined that they needed to go in and try to close that hole again. So once again they are cooling him back down and will once again put his heart to sleep and try again. Noah is still stable and doing well but with every bypass run there is always risks.

Sixth update 2:00pm CT:
Still working on the VSD... still stable. It is just a little more difficult working on this hole.

Seventh update 3:00pm CT:
Patching is done and now they are doing another ECHO to see if it is now closed... Please pray that this time was successful! When it is done and everything looks good they will do the broncoscopy to check his airway stability... Please pray for an airway miracle that he will not need any further airway reconstruction!

Eighth update 4:00pm CT
They are unable to close the second VSD. It is too risky and dangerous for them to continue to try. Noah is no longer on bypass and is doing well. The cardiologist that came to update us this time said that it will be a short term struggle but in the long hall he will be able to live a "normal" life with this hole. I asked him what he means about short term struggle and he said that we will struggle with getting him off the ventilator for a little while. Please pray that his lungs will be strong enough and not too much fluid over loaded. They are now doing the broncoscopy. Noah is doing well.

Ninth Update 5:00pm CT:
They are now closing Noah's chest. Everything is going well. Coming off bypass was a good transition again and his heart is beating on it's own very nicely. For some reason, unknown to us still, they have decided against doing the bronc. We are now waiting for Dr Mitchel to come out and talk to us.

LAST update!!!!! 6:00pm CT:
Noah is done with surgery and is already being wheeled back to his room. we got to see him in the hall and he looks great! During surgery he did have one episode of hypertension but besides that and the unsuccessful closure of the second VSD, everything went great. Now we are just waiting to go back to his room, which should be in about an hour. Thank you all for praying for us today. Please continue to pray for a quicker recovery and a successful extubation when the time comes.
Wednesday, December 15, 2010

Surgery plans...

Noah's re-operation on his heart has been moved from today to Friday morning. Dr. Nancy did not want him to be second case of the day, she wants him to be first or only case. It is going to be another lengthy surgery. Most likely all day. So with these extra few days, we are holding Noah at least once a day. Yesterday was the second time I have gotten to hold him. I had Aaron take pictures and some video. During one of the times Aaron was recording us, he got close up to Noah's face. Noah was just looking at the camera and all of the sudden the corners of his mouth turned up..... NOAH SMILED FOR ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My Christmas prayer was answered!!!! AND God made it so that we could capture it on VIDEO!!!!!!!!!!!!! Thank you Jesus for this Christmas miracle!!

Please pray for Noah's surgery this Friday. Praise Jesus for my Christmas miracle smile!!
Monday, December 13, 2010
Morning rounds, we discussed Noah's surgery. It is in the schedule for Wednesday still, we just don't know exactly what time yet. But it will be an all day event again. They are deciding whether or not to do a heart cath at the same time as the surgery... again, something that will be decided that morning. Noah is in pretty significant heart failure. It is causing his organs to work extra hard. They are pretty much just going to work on keeping him comfortable until Wednesday... no real big changes.
Today, we are struggling with keeping him comfortable, though. He looks like he is in pain or something... cries almost every hour. Poor buddy. His temperature goes up as he gets agitated too but nothing has grown from the cultures, so no sign of infection.
They have been having to suction him a lot as well.. and he has been throwing up a lot of mucus. His liver is extremely large and almost rock hard. This could be because his heart is sick.
Pray that the surgery on Wednesday will go without bumps and that this recovery time will go a lot quicker and more smoothly. Pray for Aaron and I... it is putting a strain on us as individuals. We just need a break from life for a little bit, but that is difficult when we worry about our baby boy.
Friday, December 10, 2010

Heart cath update... We have somewhat heavy hearts today...

Noah did very well during his heart cath today. Thank you for praying for his safety and for us. The news we got is not what we were "wanting" to hear but at least we now have some answers. This whole time they were seeing just 2 residual VSD's but during the cath, they found a third hole. Dr. Mitchell said it was not ideal to repair with the cath procedure. He has a 2 to 1 shunt, meaning that the blood is going to his lungs twice the amount that is going to the rest of his body, creating high pressures in his lungs and making the right side of his heart work twice as much as the left. So this means, that Noah is going to need another open heart surgery to close those holes. He is now scheduled to this surgery on Wednesday next week. It will be another all-day surgery. They believe that these VSD's are what are contributing to his liver and pancreas enzymes being elevated. So we are now on the third floor again.. the Cardiac ICU.
I think I am going to end this update for now... I need to process this and pray.

So... Noah's new mailing address will be:

Chilrdrens Hospital of Wisconsin
c/o Noah Solomon room # W322
9000 W. Wisconsin Ave
Wauwatosa, WI 53226
Thursday, December 9, 2010

Nervous anticipation for tomorrow morning...

Noah is going to the cath lab tomorrow around 10:30am. Heart caths ALWAYS make me nervous! Please pray for safety and peace. Please also pray that whatever they find that needs work, that it can be done in the cath. Pray that he will not require any surgery to close the residual VSD's.
Depending on how Noah does during the procedure and if they need to do some extra work, Noah may be moved back to the cardiac floor.
Noah has been on his anti-seizure medicine for 24 hours so far. It is making him sleepy, but so far we have not seen any more activity.

Short update, I know... but I will do a more detailed one tomorrow after the cath is done. Night!
Wednesday, December 8, 2010

Noah likes to be a mystery :/

This morning, around 6am, Noah's nurse noted that she saw what looked like seizure activity. And for about a week, he has been having some crying spells that always end with him urinating. Today we had urology come and take a look at him. He doesn't have an answer as to why he is crying right before urinating but he said that he is thinking it might be that his body is seizing and the urinating is just an after effect. Noah is now on an anti-seizing medicine. We shall see how this goes. Dr MacArthur doesn't believe that, if it IS seizures, that it is NOT harmful to his brain and that it should not be a long term thing.
They are starting to wean his methadone little by little. Today they had an ultrasound done on his IVS and his SVC to check for the clots, their size, position,etc. They will need this information for Friday when they do his heart cath.
Noah is doing great with his eye focus. He is also starting to get some motor strength and coordination back... he is trying to put his binky in his mouth and also the mouth care sticks. This is AWESOME!! He knows what they are and where they go! I have been trying to get video of him trying but by the time I push recod on the camera, he has gotten tired and doesn't have anymore energy or strength to keep doing it. It is so sweet to watch him.

I feel like this update is kind of scattered! LOL!

My mom, sisters, and nephew came up to visit us today. It was the first time that Jonas got to come in to Noah's room and see him. They have not played with each other since October 15th :( Jonas had a huge smile on his face when he saw "his baby"! He did not show any signs of being scared of Noah's appearance... like it didn't even faze him, he was just so happy to see him. I wish Noah was awake during the visit... it would have been good for him to see his big cousin. Next time!
Tuesday, December 7, 2010
Yesterday, Noah had a new nurse every few hours it seemed like. It gets a little frustrating when this happens but I will forever be grateful to his last day nurse... She asked the best question in the world... She asked me if I wanted to hold Noah!! I said "ABSOLUTELY!" So she called in another nurse to help with the transition... passing a baby who has a breathing tube down his throat, an arterial line in his groin, and a central line in his neck, and leads and monitors all over, is a huge process! While I waited, my heart swelled as I anticipated the weight of my child in my arms again. I was very near to tears and SO ecstatic! As soon as Noah was in my arms and settled, his heart rate and blood pressure came down and took one little look at me and fell asleep. :) *Sigh* MY. HEART. MELTED. I held him for two hours before my arm started to fall asleep! LOL

The rest of the evening went ok... he did require some morphine a couple times, but for the most part he was comfortable.

THEN, at 4 o'clock in the MORNING, Noah's nurse wakes us up. At first, Aaron and I thought it was time for x-ray... that is the normal wake up time. Then she said, "I have some good news and some bad news..... Noah is getting transferred... back upstairs.... right now" :::SHOCK::: So.. Aaron and I both jumped up and tried to organize our brains and started packing. We had about 8 nurses helping us pack and carry things. When you have lived at the hospital for over a month and a half, you tend to accumulate a lot of things... So we packed up are whole "home" withing 25 minutes! That was fun. <~~ Do you sense the sarcasm?!? LOL

Noah is settled in his new room back up on the 5th floor... room W504!

Nothing significant showed up on his latest abdominal ultrasound. Their next plan is to talk with the surgery team about his pancreas. Get some ideas from them and possible come up with a plan. He is also requiring a heart cath, that will most likely be scheduled for this Friday. Heart caths always make me nervous, so please pray for this procedure to be done safely and that we can get some answers. We were also warned that he could possible get put back on the cardiac floor right after his heart cath. :/ Nice. ::sigh:: So, we will not be unpacking his room just yet. I wish the cardiac doctors would have thought about this before they decided to move us! Oh well!

Noah received a cute little Christmas Tree and a BEAUTIFUL heart shaped ornament for The Mended Little Hearts of Milwaukee today. It is now sitting in front of his glass door. We would love for family/friends/visitors/nurses/doctors etc. to help us fill it up!!

Please continue to pray for our endurance. Aaron goes back to work in a week. I am going to miss having him up here with us everyday! Please pray for Noah's heart cath to go smoothly. Pray for his physical therapy sessions to keep improving and that he gets his strength back quickly. Please pray that we can have him extubated soon and that he will not need anymore airway intervention! Pray for his withdrawals to subside so that I can have my Happy Noah back! And last, but not least, please pray that I can get at least ONE smile by Christmas!!! :)
Monday, December 6, 2010
There have been no real big changes in Noah's care these past few days, except they have taken away the scheduled Atavan (sedation drug) and boosted his methadone and clonodine. He is going through some fierce withdrawals... poor buddy :(

Today, he received yet ANOTHER ultrasound on his liver and pancreas. His liver enzymes have gone up again. Still trying to figure out what is contributing to these elevated numbers. The previous ultrasound from 2 days ago, they just HAPPENED to discover a blood clot in his IVC (inferior vena cava... caries de-oxygenated blood from his lower body to the right atrium). We are praising God for this discovery, as they were not purposely looking for this. So his heparin drip has gone up to prevent the clot from getting any bigger.
Foot splits are still in use... it's going to take a while before his legs and feet muscles are loose again.
Yesterday, Noah had begun to focus a little and start tracking movement! He is doing great with left to right eye movements, but has yet to move them up and down.. SOON though!
Withdrawals are the pits! Have I mentioned that yet?!???! Poor Noah... It is one thing to hear your baby cry and watch them squirm, but to NOT hear them cry intensifies the visual experience... you can see ALL their pain and discomfort in their eyes and body. I just wish I could hear him... gotta get that breathing tube out first though!

I was passed a message from someone I do not know but they are constantly praying for Noah and sharing our story with others, and was told, "Stand in Faith, and when all else fails....... Stand some more! You never know when your miracle is going to come!" So... I am going to KEEP on praying for that miracle! And ONE of those miracle I would LOVE to receive for Christmas is for Noah to give me at least ONE smile for Christmas! Sure, I would LOVE to have him whole and healed and all that jazz, but I would be more than happy and content with just one smile... I have not seen his breath taking, contagious, gorgeous, silly, heart melting, soul warming, smile for 32 days! Please, God, I would LOVE to receive ONE!!!
Friday, December 3, 2010

::Rock:: *Noah* ::Hard Place::

These last few days have been extremely hard. Noah is not doing so well. We have weaned down his Atavan over the past 3 days and his withdrawals are getting worse. We are working to help him get comfortable but it is very difficult to watch him suffer. NO child should EVER have to go through narcotic withdrawals! Unfortunately, Noah does. My heart breaks every minute of every day that we struggle to help him. It is a slow and excruciating process. I have to confess to you all, because I need prayers... My Faith breaks a little from time to time... just pray the God continues to give me the ability to make it through day by day. It is easier to ask God "WHY?!" then to fully give it to Him and to trust Him. I am being VERY honest when I say, "I am NOT as strong as you all think"! I faulter... sometimes on a daily basis... sometimes I feel like I can't hang on any more, but that is when God tightens his grip even more. He allows me to be sad and in the pits but He NEVER leaves! He is there in the pits with me... crying with me... showing me signs here and there that His Love is GREAT and He is working! He always gives me a glimmer of Hope... even when I am too down to notice it. But once I am out of my 'funk' I realize that He was ALWAYS there! He ALWAYS is giving us signs that He is there... we are just too absorbed in the moment to realize. Many have asked me how I have stayed so strong in my faith when treading through these murky, treacherous, painful moments... how they don't know how I do it... how they can't imagine being in our shoes or KNOWING they could NEVER do it! That is NOT true! God is the only one who is able to do it... and He shares his ability with me and Aaron. If it was in His plan for YOU to walk the same path, He would share it with you also. So it is NOT that I am able to do this... it is that God has chosen us for whatever reason and he is giving us the tools to make it through. He is pouring out His blessings... we just need to make sure to catch and use them. He is doing the same for you!!! He is giving you abilities left and right... different ones than what Aaron and I are given but to me it is all the same. We KNOW God has His perfect plan for ALL of us. We just don't always know what exactly it is. I pray that God will give you strength and determination to follow!
With that being said... here is an update on Noah....
Last night, Noah kept showing movement that was concerning. He was showing signs of seizure activity last night and the doctor ordered an EEG test. The test was run for 45 minutes but during that time, Noah was not doing any of the movements he was showing prior to the test... SO... no seizure activity was detected. If he still continues to show those signs, another test will be ordered. So far, he has not done the same movements as last night. Dr. Hoffman just came in because we thought he was starting to have one of those episodes... although not nearly as close to the ones last night. Dr H looked in his eyes, moved his arms in a coordinating motion, and lifted his jaw, etc. He said this is not a seizure but it is like he does not have the right balance of drugs (i.e. he could be under too much and his body is just having a reverse effect). He said he wants the nurses to avoid giving him PRNs as much as safely possible but instead to try doing the coordinating movements as kind of like a brain distraction. He also said that when he gets in these agitated states that MORE stimulus could actually help him rather than giving him PRNs. His explanation is that when you create more stimulus, we are telling his brain to stop focusing on flailing his body or the agitation but to focus on something else. It makes a lot of sense and I am praying that it helps! He said he knows it is and will be hard to watch but it might just be what his body and mind need. I like this plan.
Noah's BNP is starting to come down... 1600! Still high, but Praise God it looks like it is slowly getting better. His liver and pancreas enzymes are elevated so an ultrasound was done to look for stones or sludge... no results have been posted yet.
His renal and cerebral saturation levels have also been down for reasons still unknown.
Noah has yet to focus his eyes... still stares and doesn't really follow movement yet. Please pray that this improves.
While I was taking a break away from the hospital, Noah was started on foot splint therapy. From being in the bed for 4 weeks, his feet have begone to drop causing his muscles to tighten. So he now wears foot splints throughout the night and on/off in 2 hour increments during the day.

::Sigh:: I think I am done with my update for now. I am emotionally, physically, mentally, spiritually exhausted. Until next blog!
Wednesday, December 1, 2010

Results from the ECHO

Hello everyone! I am writing this from the comfort of my home. It is nice and refreshing to get a couple days break from the hospital. Aaron stayed with Noah so i wouldn't worry about him too much :) Thank you babe!! I love you so much!!

The results from the ECHO showed 2 residual VSD's in "moderate size". Don't really know what that means.. I know it is not a good thing but I don't really know what they plan on doing. Possibly a heart cath.. that is all I know.
From what Aaron told me today, they have gone down on the Atavan dose again. He was doing great but about an hour ago he got really fidgety and his blood pressure started to rise so they gave him a PRN of Ketamine. They are also going to try feeds tomorrow. Please pray that he starts tolerating the feeds so we can get him back on his healthy normal nutrition. Aaron said that he had a pretty good day today considering him going through a little withdrawal from the Atavan.
I miss my boys!!! Can't wait to see them tomorrow!!

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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My handsome men!

My handsome men!
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Me and my boy :)

Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!


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