Tuesday, November 30, 2010

Things look promising...

Noah had an ECHO and a CT scan this morning. So far the CT results came back with no big concerns.. PRAISE GOD!!!!! It did show very small calcification but nothing that would have shown up from the cardiac arrest. It could be from as far back as when Noah was still in my womb. It is not concerning though. In Dr. Niebler's words,"I have no reason to believe that we should have any problems waking him up and retuning to the same 'Noah'." It will take some time though.
It is very reassuring but we will not know for certain until we do wake him up so please keep this a top priority in your prayers for Noah.
I will update once we hear results from the ECHO.
Today they are going to start lowering the Atavan dose.
Monday, November 29, 2010

Round 1....

They tried to extubate Noah today. He had the breathing tube out for an hour and a half before they re-intubated him. I knew he wasn't ready after 5 minutes but we all wanted to give him a chance. He has a lot of thick secretions and aspirated some causing him to struggle for each breath. Thanking God that they were able to re-intubate without any difficulty and he is now resting and breathing comfortably.
Just before they extubated him, they turned off his Ketamine drip (a sedation drug) so he would be a little more awake. Even though they had to put the breathing tube back in, they left the Ketamine off. I am happy about this! Ketamine can cause hallucinations and cause secretions.
They took another BNP (the blood test that measures heart failure... how sick his heart is) and it is extremely high... 2200! They will be doing an ECHO sometime in the next couple of days. They will also try waking him up more to see if he will interact with us... the status of his brain is still unknown and a little concerning... and will be going down for a CT scan in a few days. He has been opening his eyes wide today but doesn't really look AT us or move his eyes to follow movement. He is also still on a fair amount of sedation so this could also be the reason. PLEASE PLEASE PLEASE pray that Noah is still there!! It is going to take some time but I have faith that God will restore him 100%!
His liver is still large... most likely because of his BNP being so high.

Lord, please watch over the care of Noah. Guide the nurses and doctors working with him. PLEASE deliver the SAME Noah I had the day before his surgery... the only change I want is his heart to be healthy! Please continue to heal Noah. I pray that the next time they try extubating him, it will be YOUR timing! And that he will not require any more airway intervention. Please comfort Aaron and I and let us feel Your presence and Your hand working in our lives. Give us peace and patience with eachother. In Your loving and gracious Name. Amen.
Sunday, November 28, 2010

Things are speeding up a little...

The power of God and prayer is AMAZING!!!! Please don't stop!!!!

Noah's progress is starting to quicken a little day by day. Today, they are turning off the Fentanyl!!!! He is doing very well with the weening method... has not required any PRN's in the past 3 days now! They are weening the vent support today as well, in hopes of taking the breathing tube OUT TOMORROW MORNING!!!
Last night, we had to turn off his feeds again as he kept throwing up. But we all believe it is just because he is more awake and is gagging on the breathing tube. So they will leave him on full IV nutrition until we take the breathing tube out.
This is surreal. I know everyone has prayed for this... for his health to return quickly. And it is starting to... it just is starting to make me nervous about how quickly it is happening... something I can't really explain to you all... but I know Noah is on the right path!
Please keep praying for the specifics I posted yesterday. With extra focus on his respiratory status... I will let everyone know tomorrow morning if they do indeed, plan on extubating him... We need all the prayers possible for success!!!! And a MIRACLE!!!!!
Saturday, November 27, 2010
Happy Thanksgiving (a couple days late) EVERYONE!!! Noah is doing pretty good.

Yesterday, Noah had his pacing wires removed... seeing as he was only paced for half a day after his cardiac arrest. Less and less wires and tubes!!! LOVE IT!
The past couple of days, Noah has not required any PRNs, we have been able to keep him happy. We are getting closer to getting him off the Fentanyl and as of today, he is totally off the epinephrine!! His renals are looking better... still on the low-ish side but he doesn't dip to the low 30's anymore. He is still having high temp spikes as high as 39.7*C (103.5*F). When he reaches 39*C we turn on his cooling mat until he is 38*C. Tylenol is not doing ANYTHING, so we have to resort to the cooling mat. I HATE the cooling mat... if he is not watched closely enough, he gets too cold and starts to shiver... but thankfully he has not had any of those episode in the past two days. I think we have got a 'rhythm' going. His vent settings are really low now... Low enough that were he awake enough, they could extubate him! Which, BTW, they are talking about later this coming week! We have started feeding him again. Just 3cc's an hour this time. He has still been retching and throwing up a lot but wee need his gut to move!

Prayer requests:
The continuing progress of weening his off all his sedation meds with no problems.
For Noah to wake up more and be alert and to actually focus on us.
For the unknown health status of his brain... will know more when he is more awake and interacting with us.
For his liver to decrease in size more.
For his toleration of the feeds and that the retching and throwing up will cease.
When it comes time to extubate him, that he will have success and not need re-intubation! AND that extubation time will be SOON!!
For Aaron and I (mostly me!! LOL) to be able to hold Noah again SOON!!!!!!!!
For a miracle on Noah's airways (REALLY focus your prayers on this one specifically as well as the brain function)
Also, that Noah will not require additional closing of the residual VSD's.

I know there are a lot of medical terms in this and you may not know what you are praying for... but God does :) LOL!
Love you all!! And thank you!!!!!!!!!
Wednesday, November 24, 2010
Right this moment, Noah is getting an ultrasound done on his thigh. His thigh has been getting firmer and larger over the past couple of days so they are having the US done to see if there are any blood clots. It looks and feels like he has a huge charlie horse. Come on, Noah! Seriously... are you going to add this to the mix?!? (Noah is just being Noah.. always has to be a puzzle. I sure wish he came with an instruction manual though!)
We woke up this morning to Noah's eyes WIDE open and responding to our voices! You can tell he is actually recognizing our voices and trying to turn his face towards us and trying hard to focus. He looks more comfortable today. It seems we found a good balance of the drugs he has on board... for now.. *sigh*. His BNP is still high, although I didn't quite catch where it stands today, whether it is higher or lower than yesterday. He pooped twice today!! His belly is a lot less bloated, but his liver is still large. They have gone down on his vent settings (giving him less vent breaths, letting him breathe at his own pace.. just leaving the pressure support the same.). We have stopped his feeds last night due to the vomiting. They are going to leave it off until they hear more bowel sounds.
Ok... so now the ultra sound is done.. just waiting and praying for good results but I want to find out what is going on with his leg!
Over all, today is a little less stressful. Aaron and I will not be going home tomorrow for Thanksgiving. We don't feel comfortable being that far away from Noah when he is so sick. Thankful to the many friends that have offered their closer homes for us. Thank you Erin and Robin for taking us in as your own family tomorrow and letting a couple bums celebrate the Holiday with you! :) We love you!!!
Tuesday, November 23, 2010

Rough seas ahead...

Today was just as, if not, more difficult than last night. Noah's blood pressure has been above 100 diastolic ALL DAY LONG. He has only gotten about an hours worth of sleep and has been extremely agitated with a fever as high as 103.5. We have tried PRNs and Tylenol all day and nothing helped.
Aaron left around 5:30 pm to go to his Men's Bible study group and since then Noah had gotten MUCH worse. So bad to the point that I called and asked Aaron to come back. We have tried a new drug called droperidal (I know I did not spell that right! lol) and it seemed to help him. However, about 45 minutes later, his blood pressure came back up. His color is not good... he looks very gray and sickly. That is the best I can describe it. He has been clenching and grinding his teeth and has also started biting his tongue. This concerns me that he may be having seizures but it also can be another sign of withdrawal. I will be asking that they do a head study tomorrow to ease my worry. They have also done a KUB (finally!) and it showed a lot of gas in his intestines and something about his left lower quadrant having a thickening of the intestinal wall. We will know for sure by the morning rounds. Noah's BNP is high... the highest I think it has ever been. This is the blood test that shows heart failure.
This is very scary for Aaron and I. We don't know what to make of this. It is extremely difficult to sleep tonight because we both want to be by Noah's side and make sure he is comfortable and well.
Thank you Lord for Nurse Jaci today. It is nice when you get a nurse that advocates for and with you.
I don't know if I have expressed well enough how critical Noah seems to be right now, but PLEASE PLEASE PLEASE.... pray ... I don't even know exactly what to have everyone pray for, but just pray for comfort all around and restful sleep and safety for Noah.
Yesterday had been a great day, but towards the evening and all through the night was really rough. Noah is going through withdrawal and it is making him extremely uncomfortable. His renals were low and his blood pressure and heart rate were high. We also had to turn off his feeds for a few hours because he started backing up and had bilious coming out of his g-tube. He had pooped a lot yesterday but was having a hard time with it because he kept bearing down a lot during the night. Then around 5 this morning, we had given him a dose of Benadryl because itchiness is a side effect of all the narcotics he is on. After that dose he calmed down and slept for about 2 1/2 hours.
So... During rounds this morning, they talked about his night and all the things they tried to help him. He now has Benadryl as a PRN and they are starting methadone to help with coming off the other sedation meds. His feeds are back on but still at a rate of 6cc's an hour. He seems a little better this morning than last night so please pray that this continues in the right direction. His lipids are going to be run in a 12 hour period so he can get the fats he needs.
Prayer list:
Noah's withdrawals to subside.
His renal function to improve and his blood pressure to normalize.
His fever to go away.
His liver to go down and his belly to become less bloated.
His gut to wake up more and start digesting his feeds.
That he can come off the sedation drugs quicker without being uncomfortable.
For Aaron and I to feel confident in Noah's care from the nurses and doctors. And for us to feel comfortable going home this Thursday for Thanksgiving with the family.
For our family, that they will be comforted when they can not be here with us everyday.
Thank you
Sunday, November 21, 2010
Noah has pooped TWICE today!!!!!!!!!!!!!! This is such AWESOME news!!! His belly is still distended but not as much as it was yesterday!
Today we have gone back up a smidgen on the epinephrine to help with his renal saturation. So far so good.
We are now starting feeds with Noah. Just 5cc's an hour through his g-tube. This should also help stimulate bowel activity as he wakes up and eventually help with his renals.
He still has the constant fever and it is now resistant to Tylenol. But nothing has grown from the cultures which is a good thing but also frustrating at the same time.
They were thinking that he was hallucinating earlier which can be a side effect from some of the sedation drugs. They gave him a one time dose of some kind of drug that helps with this kind of thing. Pray that these hallucinations (if that is even what he is having) will go away.
Please add the rest of my family to your list of prayers... it is hard for them to see Noah in this condition. Who can blame them?? I certainly can not! But this hospital stay is taking a HUGE toll on all of us! But with God's comfort and perfect plan, I KNOW Noah will be fine! I have had a strong feeling that Noah will grow up to be an inspirational speaker!
Saturday, November 20, 2010
Today, they are not going to change much on his drips. I heard they will add some sort of monitor to the ventilator... it goes down his nose and into his esophagus and measures his diaphragm activity.
Yesterday was an AWESOME day! Noah opened his eyes for us!!!!! He even tried to lift his hand to touch my face. PRAISE GOD!!!!
Noah's belly is still distended and he has no bowel sounds. But as they ween down his drips, we should start hearing movement. His kidneys are improving and he is putting out a lot of urine! Yesterday he ended up being negative in his fluid balance because he had been urinating a lot.
Later today, they might ween down his fentanyl again. He is starting to breath over the vent which is what they want him to do.
So please continue to pray for his kidneys. For his belly to go down in size and for his bowels to wake up and start moving again so we can start feeding him. For his brain function, him waking up and opening his eyes and reaching for us are all good signs, but we are not out of the woods yet. pray for whatever infection is in his body, to leave... he has had an almost constant fever for the past few days.
The swelling on his eyeball has returned to normal! Thank you for this answered prayer! The swelling on his arms, hands and legs and feet have gone down significantly! He looks a lot more like himself :D
Thursday, November 18, 2010

Extra, extra!! Read all about it!! There's GOOD NEWS!!!

I have been MIA for the past 2 nights. Got a nice break and spent time with my mom and sisters. I love hanging out with them!
While I was away, Noah behaved himself! Yesterday, he had his RA lines pulled. Then, this morning, he got his chest tubes taken out!!!!!! A couple steps closer to me being able to hold him again!!!!! I am SOOOOO EXCITED!!!!!!!!!!!!
They have added clonodine to the mix of sedation drugs. This, I think, is a good sign because it means they will begin weening him off the other more extreme ones! So tonight, they have weened down the Fentanyl (sedation) and his epinephrine (heart function med) and he is doing great. He has had a REALLY good day today! He is a super wiggle worm too... he has been squeezing my fingers and lifting his arms. He has been trying to open his eyes all day too :) He does have some swelling on his eyeball, so please put that on your prayer list. It is nothing too concerning, just looks a little uncomfortable. Another thing added to the list of prayers is his belly. He has gotten extremely bloated in his abdomen and his liver is super huge. His skin is very tight to the point that it hardly has any give when you try to press on it. Poor buddy :/ They have given him 2 glycerin suppositories to help with passing gas, but so far nothing has been happening.
Thank you Jesus for this AWESOME day you have given us!
Tuesday, November 16, 2010
Noah's chest has been closed for 24 hours now! PRAISE GOD!! He is having some issues with his renal sats and blood pressure. The swelling has gone down a lot in his face! He looks more like himself :) He is becoming VERY tolerant to his sedation meds, requiring even more to keep him asleep. I can't wait until we can start weening him off! He had a couple extra doses of lasix (his diuretic) had put off a lot of extra fluid. He has been spiking fevers over night, but I think it is mainly due to his agitation so he has been getting Tylenol.
Over all he is doing good! We just need to keep praying for the usual. Another request added to the prayer list is to get him weened off the epinephrin (the heart function med). That is our next 'moving forward' goal.
Monday, November 15, 2010
Noah's chest is closed!!!!
They took him down to the cath lab for the procedure. They did a picture study on his PA's before they closed his chest. The study showed the pressure in his left lung was higher than they would like. But nothing concerning about the new PA plasty. Things looked good for the most part. They cleaned out his chest and have closed him up. Dr Mitchell did NOT redo the airway pexy. It is possible that he will have to go back in later down the road to re-suspend the airways because of his underlying malasia. This is something that we (Aaron and I) are concerned about and would love prayers for a miracle healing oh his narrowed airways. Please pray that his airways will become much stronger so that he will not require any additional intervention. We NEED a miracle!! PLEASE GOD!!
Keep up the prayers for his kidneys!! He is producing a LOT more urine these past 2 days and has since then, gone down in swelling!!! Praise God!!!!!
Continue to pray for his brain... I have FAITH that God is going to give me My Noah back when he is awake!!!!!
Please continue to pray for the infection that is camping out somewhere in his body. It seems as though we have found the right antibiotic and his white blood cell count is decreasing! YAY!

Alright.. Thank you!! Can't wait to go back to Noah's room and see my baby with his chest closed!!!!! Pictures to come soon!!! :D
Sunday, November 14, 2010

The Silver Lining....

Noah has been off the paralytic for 24 hours now. Last night, around midnight, he finally had some movement. It started with his tongue and fingers and toes. Small, subtle movements but moving none the less. GREAT signs!!! He is still under a LOT of sedation so he won't be waking up and doing jumping jacks anytime soon :)
His white blood cell count has started going up over the past few days, so they are concerned with infection. So now they are putting him on additional antibiotics. This morning, I noticed that his urine output is increasing.. PRAISE GOD!! But please continue to pray for the kidneys!!! Noah's lungs and airways have a LOT of secretions, so there is a possibility that he may have an infection there.
Dr Michell came by to take a look at him. He is concerned about infections so he will be closing Noah's chest tomorrow. He will not be redoing the pexy, though, as he is concerned that the pexy had something to do with Noah's arrest last week. But this will be readdressed a little ways down the road. So for now, while Noah is still intubated, having the pexy down will not hinder his airways at the moment. When it comes time to extubate Noah, that is when the REAL test on Noah's airway will be.
Specifics to pray for today: Focused prayers for the kidneys to continue producing more and more urine. The closing of his chest tomorrow, that it will go smoothly and will not put extra strain on his heart and kidneys. Noah's movement to improve (this will help with moving the extra fluid around so the swelling can go down). Noah's airway situation to heal so that he will not require additional intervention when he is extubated. And for Noah's lungs, that any infections that may reside there, that it will be gone!

Yesterday was a 'bad day' for me. Very emotional. Thank you to everyone for your prayers and encouragement. A SUPER awesome friend took me out last night to see Life As We Know it and then to dinner. We had a GREAT time and laughed so hard. I really needed that laugh and girl time! She is such a blessing to me! :) Looking forward to another girls night with her sometime. Later this week I am going out with another equally awesome woman!! Can't wait!!!

Side note: The hospital is STILL under water restriction, so pray that they can get the water cleaned and running again!!! Thanks!!!
Saturday, November 13, 2010
Still need focused prayers on Noah's kidneys and brain function. This is getting EXTREMELY hard to watch my baby just lay here with no real changes.
Today they have, once again, turned off his paralytic in hopes to see if he can tolerate moving a little. Last night we struggled even more with sedation and getting him comfortable. However, I think who he had for a nurse last night has something to do with it. :/
I am getting so frustrated with everything. I cried during rounds because my emotional cup is extremely full now and I can no longer keep it in. I just feel like we are not actively helping Noah recover. I am worried about his character... I really miss my baby boy who plays with my eyelashes and gives me random kisses and likes to shake his butt. It is harder to look at him this time around because he was not sick going into surgery. And because of that, recovery time feels like forever. It is a gloomy day outside this morning... a reflection of my heart right now. Maybe it is God's way of showing me that He is sad with me and that I am not alone in this moment. Today I just need and want to cry. I don't want to be strong today, and it is time for it to take a back seat. Praying tomorrow will be a better day and that I can once again be 'strong'.
PLEASE pray for Noah's kidneys... this seems to be the problem we need to get fixed before we can actively help Noah.
Thursday, November 11, 2010
There was no update yesterday because things are pretty much the same.
Noah is starting to have sedation issues from being on the narcotics for a while now. His body is requiring even more to keep him comfortable and asleep. His pupils enlarge, his BP and heart rate go up, and his renals go down, and his skin becomes very modeled or blotchy looking. Today, they have gone up on his atavan and will possibly go up on his fentnal. All his organs are improving and functioning except his kidneys. His kidney function is low however, he is still producing urine.
So, a couple specific things I would like us all to focus on in prayer, are his kidney function to improve like the rest of his organs and his brain to show no signs of stroke or bleeding when we eventually wake him up. Thank you :)

I would also like to thank all the visitors we have had these past few days. It means a LOT to Aaron and I to experience the support and love. Thank you to those who have brought their little ones along with them so that I may have a little "mommy therapy" and hold your precious child as I can not do with Noah just yet. It warms my heart to feel a little normalcy in that small moment :) Thank you to everyone who have provided meals and goodies. Thank you to everyone for your quick response on sending me lotion... I now have a good variety of scents to choose from :)
And as always, thank you for holding my little family in prayer and love.
Tuesday, November 9, 2010
Psalm 41:1 The LORD sustains him on his sickbed; in his illness you restore him to full health. --- They should be setting up a sterile field in about 45 mins to prep for the trial. Pray for Noah's heart, body, and mind.
No surgical procedure has started yet, but the ECMO cannulas are clamped so he is doing things on his own. His CVP went up a little so they are going to watch him for like 5 minutes before they continue with the procedure. So far things look good. They have also turned the paralytic back on so that when he is off ECMO ...completely, his heart doesn't have to work so hard.
They have started nitrous to help dilate his PA's. They are prepping his chest and Dr Michell is scrubbing in. He is also being paced to help transition from ECMO. Things are going well.
They have decided to do an echo before they open his chest. Still going smoothly.
NOW they are scrubbing him. They were trying to figure out why his PA pressure was so high, this is what the echo was done for. They have also recently stopped pacing him and his heart rate is in the 150s. They will be opening him up in a moment, clean out his chest, and remove the ECMO cannulas. PTL things are going well!!!!!!!
They are finishing up and working on getting the ECMO cannulas out!! Thank you Jesus, for answering prayers around the world this morning. Please keep praying!!

They are done!! The cannulas are out. They had some rhythm issues that were resolved after they had suctioned his airways. His chest is being left open so they would have a fast and easy access if the situation called for intervention and they have 'purse strings' (which are sutures that are the 'plug outlets' for the ECMO cannulas). Dr Michell said that he was concerned that the pexy had something to contribute to his cardiac arrest, so he will be re-evaluating his airway later this week to see if it is something that still needs to be done. But we will "cross that bridge when we get to it". He is being left on the paralytic and sedation and in a couple days, they will wake him up a little to determine his neurological state. Dr Michell is going out of town for the night but the other CV surgeon knows Noah's case so he is in good hands tonight.
So, right now they are cleaning him up. They are keeping a VERY close eye on him for the next couple of hours. In a couple days, if... no, WHEN Noah shows signs of recovery, they will close up the purse strings and close his chest.
Ok.. I am exhausted! Zzzzzzzzzzzzzzzzz............
Monday, November 8, 2010
Today, they did a short trial run of turning down the ECMO. Noah did kind of 'okay'. His renal saturation's dropped to the high 40s but slowly started to go into the 50's. And this was done with him NOT on milrinon (the medicine that helps his heart function). So that is a good sign. The paralytic was turned off earlier this morning. He has not started moving yet, but he is still under a lot of sedation. About an hour or 2 ago, the machine was showing signs that there was a lot less volume in it so they gave him more blood. They also tried turning down the flow on ECMO to see if that would help, and it has. And this is actually a GREAT sign because that means we are closer to having him come off the ECMO tomorrow! Keep praying!!

Thank you to all who have visited today and for the gifts and meals! Can't wait to dig into them! :)
Sunday, November 7, 2010

For those who have been asking.....

If you want to send packages, get well cards or anything, you can send them to his room

Childrens Hospital of Wisconsin
c/o Noah Solomon room #W317
9000 West Wisconsin Ave
Wauwatosa, WI 53226

The day of Noah's heart surgery, I went to parent art therapy and had painted heart shaped box that has a lid. I would LOVE to fill it with little messages from all who are praying for Noah so, when he is older, he can read them and know how many lives he has blessed. Please send all messages to the address above! And please pass the info on to your friends. Thank you, Noah's Mommy :)
Noah had a relatively good day today. His ECMO dressing had started pooling around the seams and seeping out the edges a little more today, so they actually went back in his chest to explore. They cleaned out a LOT of clots in the chest and chest tubes and now his chest tubes are draining more efficiently. His chest is now a little more closed after the cleaning. They have started slowly warming him about an hour and a half ago. The goal is for tomorrow morning, to turn off his paralytic. He is still on a lot of pain and sedation control, so he should not move as much. They are also going to try weening down his support tomorrow afternoon some time. He has behaved nicely today :)

Good night! New update will be later in the afternoon tomorrow. There will most likely NOT be a morning update.
No real changes in his recovery plan. He is doing good though. His kidney function is getting better. His heart rate is coming down and is in a nice steady rhythm. So overall, his body is making a nice slow recovery from the trauma just 2 days ago. They will begin to warm his body up slowly starting tonight at 8pm. His paralytic will be turned off tomorrow morning and try weening down the ECMO just to see how he will do. He is still on a really good dose of Fentanyl and Ativan, so he still won't be moving much but he will still be comfortable. Last night, I noticed that he is starting to retain a little fluid which I am surprised it took this long to show up! His ECMO dressing may be cleaned out and changed later today.
As always, thank you for your continued prayers. Love from the Solomon's :)

SN: I REALLY can't wait to get my baby back!!
Saturday, November 6, 2010
The excessive bleeding has slowed, if not, stopped, so they will not be going back in his chest today. They are leaving him on the ECMO for a few days, at least. His pressures are better and so is his urine output. Overall he is more stable than last night. He is responsive (with his BP) when they do cares, so that is a great sign! His pupils are really small and that means he is nicely sedated and comfortable. The echo last night showed that his heart function has decreased but that is expected with the episodes he had yesterday. His Grandpa Solomon arrived earlier this morning!!!! This is the first (but NOT last) time that Noah gets to 'meet' his grandpa. We are so grateful for the Lord allowing him to be here. Noah's Mimi and Aunt Ami and Uncle Chad are driving up here as well. Can't wait to see them. I was a little bummed when I heard they will be leaving CJ and Lorali at their grandmas ... I was looking forward to getting to hold them :/ But I understand. So if anyone would like to donate their babies for Mommy Therapy so I can hold and love on them, I would love it :D

Thank you, as always, for following us on this God led journey and for continuing the prayers for Noah's recovery.
Friday, November 5, 2010


UPDATE: One person is doing compressions directly on his heart, one is bagging him to give him O2 to his body and his brain, and Dr. Mitchel is hooking up the canulas from the ECMO to his heart. **I am udating my status for now. when everything is done, I will do one big update on the blog** Please share this info.

UPDATE: One person is doing compressions directly on his heart, one is bagging him to give him O2 to his body and his brain, and Dr. Mitchel is hooking up the canulas from the ECMO to his heart. **I am udating my status for now. when everything is done, I will do one big update on the blog** Please share this info. ALSO: They will not know how his brain was effected until a day or 2 from now. So please pray that we still have the same Noah when he is healed!

UPDATE: Noah is now on ECMO, and is stabilized. The ECMO is doing most of the pumping, allowing his heart to relax, and they have added a pacer to establish the proper rhythm so that the muscle gets used to contracting. Noah received compressions and bagging for over an hour. Because of this, there is a risk of stroke and organ deprivation. They are doing an echo now to confirm the VSD is still intact, and will do tests tomorrow to verify the brain function. We wont know for certain until Noah wakes up whether brain function is ok, but Dr. Mitchell spoke with us, and was extremely optimistic about Noah's prognosis. Please pray that Noah's brain and organs are ok. We are belieiving that God wants Noah to tell us his story some day! Tonight there will be a nurse in the room constantly to monitor Noah's condition, and there will be a constant rotation of techs for the ECMO machine until he is off it. Dr. Mitchell's opinion was that when they were doing suction to clear Noah's lungs the new pulmonary artery clamped down, making the back pressure on his right ventricle very high. Since up to this point the right ventricle has not had to function on its own (due to the VSD) it was a shock, and the RV slowed and lost pressure.

A BIG scare........

We just had a scare about 30 minutes ago. After they had turned off his paralytic, his temperature started climbing, his heart rate climbed, and his blood pressure started dropping. They a whole bunch of doctors came rushing in. They had restarted the paralytic and gave him a bolus of a blood product to help lower his heart rate which was in the 190's. They stood around him to watch how his numbers reacted. His blood pressure kept falling (40s/30s) and his heart rate started dropping quickly. A crash cart was brought in and a whole lot of other doctors and nurses. They had to do chest compressions for about 45 seconds. They turned his milrinon (a heart function med) back up and then he became stable again. They are keeping a close watch on him today. They are letting him recover from this traumatic episode and will not be weening anything today, so he is back to his original med settings and his cooling blanket has been turned back on. If he does good over night, they may possible turn off his paralytic tomorrow. Please continue to pray for Noah's recovery. Even though Noah did extremely well during his surgery, his repair was very complicated and is going to need more time to recover. Needless to say, Aaron and I will not be venturing out anytime soon. Noah is proving, once again, that he likes to do things on his own timing and does not like to be pushed.

12 hours post-op

Noah is doing great! He had a little bleeding last night when he came back from surgery... there are some small residual holes around the VSD patch that will eventually close on their own in a couple of days. The bleeding has slowed down and is starting to clear up. I am amazed at how well he looks this morning... For being in the OR for 12 hours yesterday, he should be VERY swollen, but he is not. Just a little puffy is all. They have already turned off his paralytic drip so by the end of today he should be able to move a little bit. He is on all the heart function meds until they are for certain his heart is doing well on its own. He has a fever but that is expected so they are giving him Tylenol and they have him on a cooling blanket.
Aaron and I did not go to sleep until around 1am and then had to wake up at 4am for x-ray. We are still tired and are trying to sleep but it is hard to. The hospital air is so dry that both Aaron and I woke up with dry lungs. We are going to go to the mall later after lunch to go to Build-A-Bear to make Noah the Heart Patch Bear! We are going to call him patches and give him a "stuff-day" of November 4, 2010! :)
Thursday, November 4, 2010

8:15pm CT

We just got to kiss Noah!! He was on his way to his ICU room and them stopped for a quick second so we could catch a glimpse of him. He looks GREAT!!!! Now they are hooking him up to his room monitors and ventilation machines so it will be another hour before we can go back to his room to settle for the night.

7:30pm CT

The pexy is done. The heart is done. Heart is beating on its own. Chest is CLOSED! No pacemakers. A little bit of bleeding that should seal in a couple days. He is being monitored on the OR still. He is stable! Surgery is DONE!!!!!!!!!!!!! Praise God!!!!! 12 hours in the OR so far! But my baby is strong!!!! Please continue to pray for his recovery. Noah is amazing his doctors!!!

updates 5:30pm AND 6:30pm CT

Sorry this update is a little late, I had went to art therapy for an hour while Aaron continued to wait for updates from the nurse.

5:30pm: The echo showed some bleeding so they are getting it under control. He is off bypass and no heart-block (where the electrical system of the heart is not functioning correctly causing the upper and lower chambers of the heart to beat at their own rhythms). They are warming his body.

6:30pm: The bleeding is under control and they are starting the last broncoscopy to look at the airways. Noah is stable and doing very well!

4:30pm CT

The heart repair is done! He is still on the bypass but being warmed up and then they will start his heart and do an echo to make sure there are no leaks or and additional holes they need to patch. Everything has gone super smooth so far! A BIG answer to our prayers!!!! Dr. Mitchel even said that his trachea malasia was not as bad as they were expecting! Another answered prayer!!!! So now we are waiting to hear back after the echo is done if they will need to go back in the heart to make any adjustments. Then if he is not too swollen, they will re-do the airway pexy.

I am filled with JOY!!! God is in this place and He is working through the surgeons and nurses. Thank you Jesus, for giving Dr. Mitchel the talent and knowledge to perform such a complex surgery!

Stay tuned!! :D

3:30pm CT

Still on bypass and they are now closing the VSD. He is still being a good boy. Things are going smoothly. There are about 5 or 6 more things Dr. Mitchel needs to do with his heart.
I still feel pretty peaceful. I have a lot of friendly distractions... Thank you for the friends that are chatting with me and making me laugh. It is good therapy! :)

2:30pm CT

On bypass for the past hour and 25 minutes. His body temperature is 18 degrees Celsius which is 64.4 degrees Fahrenheit. This body cooling is done to help his body function under less oxygen while his heart is asleep and being worked on. He is "being a very good boy" and his vitals are great.

Next update to come in an hour.

1:30pm CT

Noah, for the past 20 minutes, is now on bypass and his heart is now "asleep" and the repair is now started. The room is cooled and Noah is "vacationing in the Arctic" lol. Vitals are stable. We are possibly looking at 2 - 3 hours on bypass. He is doing very well!!

The waiting room is starting to empty a bit. Maybe 6 families in here now. I am feeling exhausted and really miss my pillow right now! lol

Stay tuned.

12:30pm CT

Noah's chest is open and they are still working on getting all the important lines and tubes put it. Dr. Mitchell is exploring his chest/heart before he hooks him up to the bypass machine. The room is still warm so we have a while before they have him on bypass. Once he is on bypass, Dr. Mitchell will begin working on his heart. His vitals are stable and he is doing well.

And now it is all a waiting game.

Noah has been in the OR since 8:30 am CT. The last update we got, they are still working on getting all the lines in and prepping for the initial broncoscopy. It was strange handing him off. I thought for sure I would break down and cry. Instead I gave him lots of kisses and hugs and smiled. It was almost like I was TRYING to feel emotional and cry but something in me was not letting me do that... It is God who is holding me together and giving me peace. Satan has no grip on me today, and what a day he would have had if God was not in control. Because of the peace I am feeling, I KNOW Noah is going to do fabulous! No worrying needed! Thank you Jesus!
I am sitting on the floor in the surgery family waiting room... It is a huge brand new room and there are MANY families in here waiting just like I am. I pray the the peace I feel right now, that these families feel it also. Will you all reading this please pray for us all here as well?? Thank you once again for following us on our God led journey. Stay tuned for more updates throughout the day. And if you have not already, add this blog to your email list so you can get notification of any new posts I have.
Wednesday, November 3, 2010

How is THAT for some shock value?!?!

We just signed papers for consent for Noah's open heart surgery. Which by the way will be TOMORROW MORNING! A spot on the surgery schedule JUST opened up and Noah got first dibs. This is great because we were worried that he would catch something between now and Monday. He is at his prime health right now and this gives him a SUPER advantage!

He is now getting all the blood work, EKG, and other pre-op testing done tonight. They will try for an IV later and give him some IV steroids in preparation.

He is first surgical case tomorrow and it will be the longest surgery for him yet. Most likely being all day.

Please pray for Aaron and I to sleep as peacefully as we can tonight. We are going to need our rest. Pray for them to get an IV with as few pokes as possible. And last but CERTAINLY not least, please pray for God's hand in this to be the most evident! Thank you.
Debi Aaron and Baby Noah
Monday, November 1, 2010
Welcome back to Noah's blog! Thank you for following us through our journey and for your continued thoughts and prayers!

I know it has been a long time since we have updated Noah's blog. We will be updating on a more regular basis for a while from here on out.

A week from today, our sweet baby boy will be undergoing his 4th major surgery. This one being the most complex surgery thus far. His heart surgeon came to talk with me the other day about the procedures will be done. It is a TON of information and I will do my best to write as much information about it as I can.

The main and most important step with his heart repair is closing the VSD (the whole between his right and left ventricles). The way he described that procedure is he will kind of make it a tunnel to Noah's pulmonary artery instead of patching the hole and rerouting his PA. He said that in Noah's case, the VSD location makes it easier to do that then in other DORV patients. His next step, he will do a left PA plasty. Basically, manipulating his left PA to open it up, with either a stent or ballooning it open. (There was something else... kind of lost track of my thought... umm....)

He also talked about his right PA and whether or not he will be doing anything with it, seeing as Noah's right lung is so small. Changing the right PA would be extremely extensive and would change the amount of blood flow significantly. He said that he may just leave his right lung alone and focus more on his left 'good' lung and make it as strong as possible. The only thing, he said later down the road, his right lung may start to cause problems, in which case, he would take part of his lung out.

The last step to Noah's repair is his airways. Back in January, Noah had his airway pexy surgery. For his heart repair, Dr. Mitchel will be cutting down the old sutures in order to get to his heart. After the heart is done, they will do a broncoscopy and he will redo the pexy and make adjustments so his trachea and left bronchus are more open. But, if his chest cavity is too swollen after they are done with the heart, Dr. Mitchel will have to leave his chest open and do the pexy and close him up a few days later.

I think that is all the info... that I can remember anyway :)

Noah is the first surgical case that day. And his surgery will pretty much be all day. Dr Mitchel said the heart will be asleep for approximately 3 hours and he will be on bypass until they restart his heart. That is after the 2 to 3 hour prepping of the heart (i.e. cutting the pexy down and opening his chest). Then even longer work on the PA and then the redo of the pexy.

This past week, Noah has been super happy and wanting to play and go on walks ALL day long! It is going to be VERY difficult to "hand him over" to the surgical team and get him back sedated and intubated with a fresh cut down his chest and bed ridden for a while. But I know this must be done so we can continue to have our happy sweet boy running circles around us!

About Me

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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...

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He is getting so BIG!!!!

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

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Me and my boy :)

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Dec. 6, 2010

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


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