Finally a follow-up :)

So many people have asked me to write what is going on with AJ since his last heart surgery in Michigan. I finally was able to take the time to do so. I also figured that this would be a good opportunity to look back on the last year since AJ just celebrated his birthday!

I can't believe it has already been a year. A crazy year to say the least. I still remember June 20, 2010 like it was yesterday. Literally. Tom and I were at the Baum lake house for the weekend. I laid out in the lake the entire day before so I had a nice tan with a minor sunburn. That morning Kim asked Tom and I if we wanted to go out on the boat and watch them ski. We declined the invitation to get a few more minutes of sleep, so we thought. I had some back pain but I just figured it was from sleeping on a bunk bed and not my pillow-top mattress. Haha was I wrong. I started to get cramping in my abdominals. This may be too much information, but I thought I had some gas and was constipated. Wrong again. I went to the bathroom. It all came rushing down. Amniotic fluid. Everywhere. I knew I was not peeing my pants. I yelled for Tom. He came in and looked scared. I told him to get Aunt Lynn. She came to the bathroom. I showed her the fluid and then my mucous plug broke. I'm pretty sure she said "that's not good." Soon after, I began to freak out. Tom called the OB-GYN who was on call. Grandma Baum and Aunt Lori gave me some towels to help absorb the fluid. I ate a chocolate donut while waiting for the doctor to call back. Since we were almost 2 hours away from the hospital, he advised that we leave as soon as possible. We packed our bags, Aunt Lynn gave Tom some coffee and me some more donut holes, and we were on our way to Carmel.

It was the longest car ride of my life. I was crying the entire time. Tom kept telling me to wipe my face but the tears would not stop. I knew it was too early. I saw babies in the NICU before and I did not want my baby to be a "NICU baby." Tom called the moms and they both were on their way to the hospital. I, being obsessed with work, texted my supervisor so she would know I was not going to be at work the next day. Tom kept track of my contractions. They were getting strong very quickly. Looking back, I wish we would have stopped at McDonald's for some food. I was pretty hungry but was too worried to think about eating until we got to the hospital.

We walked in the hospital and went to the maternity ward. We went straight to triage. When the nurse saw my amniotic fluid leaking through a hand towel AND my shorts, she said we could just skip triage and go to a room because this baby was coming. We got into my room. They hooked me up to everything and told me to relax. An echo was completed. Dr. Dupler said AJ was in the right position and looked well. He said to plan for a long labor. He guessed that AJ would not come until the next day. Was he wrong!

I was eating my ice chips, trying to take a nap, and trying to get through the contractions as best as I could. Tom was letting everyone know what was going on. The moms finally arrived. They took turns at my bedside. My contractions were getting to the point of complete pain. I was having a lot of back pain and could not get comfortable. Everyone was rubbing my back but nothing helped. My nurse, Amy, came in. I told her that I think I needed some pain medication soon. She said she would get them. I began crying again, almost hysterically. It felt as though I was being stabbed in the back. Amy said that is not a good sign. She looked at AJ's and my monitors. The next thing I know, there are about 15 people running into my room. I can barely breathe at this point. Amy put some oxygen on me. The nurses were talking about AJ's heart rate dropping rapidly. Then they called the on-call hospital OB-GYN over the speaker system. He comes running into my room. I remember him because his glasses looked like coke bottles. He looks at the monitors and says that I need to have an emergency cesarean section. Amy tells Tom that he cannot come with me because there's not enough time for him to scrub in. I can only imagine how he felt at that time.  

The OR was very bright but it was hard to see because of the tears in my eyes. The anesthesiologist asked my weight and asked the doctor if there was time for an epidural. He said there was no time. Next thing I know, I'm in recovery. I still wasn't able to grasp what had happen and what the future was going to be. The nurses said they would take me passed AJ in the NICU on the way to my room. I was so drugged up, I barely remember seeing him. I couldn't even touch his hand. My worst nightmare had become my reality.

After 30 long, emotional, and stressful days in the NICU, AJ was finally able to come home with us. It was not what we anticipated at all. Every day was a challenge to get AJ to eat. We had doctor appointments every week. Eventually, AJ stopped eating and continued turning more blue. He had his first heart surgery on August 31, 2010. His second heart surgery was September 13, 2010. We finally left the hospital on October 5, 2010. AJ came home with a NG tube in his nose and was fed only from that. On December 13, 2010, AJ had surgery to place a Mic-key button via G-tube in his stomach. December 31, 2010, AJ's G-tube was clogged by his medications. He had to get a new button inserted. January 3, 2011, AJ had a heart catheterization. February 4, 2010, AJ had another open heart surgery at the University of Michigan. I would define that as a crazy year.  

AJ is almost 13 months old now. He still has the G-tube and will for awhile. He eats more food orally but we are still cautious because he still has aspiration issues. He is crawling all over the place. He cruises on the furniture and will hopefully be taking his first steps in the next few months. Thankfully, we have some of the most amazing and dedicated therapists, which have helped AJ reach the majority of his developmental milestones. Everyone says that if they didn't see AJ's scar on his chest, they would have no idea that such a happy baby could have experienced what he has. He truly is our miracle baby. We've made it this far, so we can make it through anything. Thank you to everyone who has prayed for us, supported us, and helped us in any way. We could not have done it without all of you! Love and peace always :)        

Such a good day! AJ had his sedated echo, EKG, and chest x-ray this morning. His heart is functioning like it should. There still is some fluid around his heart, which will have to be monitored. His pulmonary arteries also have some narrowing, which we knew about. Those will also have to be closely monitored. In addition, the echo showed that there is fluid around the patch of his VSD. That is normal. Hopefully, tissue will grow around the patch and close the holes. Other than that, he looks great!

So with all that great news-we are ready for discharge!! The plan is to be discharged sometime tomorrow. I'm hoping we can get a feed in and then hit the road! I also pray that the weather will not be too bad and the roads clear.

We will follow-up with his pediatrician this week and cardiologist within a week or two. And then by next week he should be able to resume OT and PT! We can make plans for him to have another swallow study down the road, after he is off Enfaport.

Due to a conduit being placed this surgery, he will have to have lifelong surgeries as he grows. Right now they hope that he can make it to 5 years old before his next surgery. But that does not mean that it will not be sooner. It depends on AJ and we all know that he has his own agenda! I pray that he will be able to start eating orally again and will catch up on his milestones. We're just taking it one day at a time and enjoying every last minute that we have together.

Thank you all so much for sharing this journey with us. Your words of encouragement, prayers, monetary gifts, and support have truly helped us get this far. We are so grateful to have so many wonderful people in our lives.

There are many families that have left the Ronald McDonald House without their child. I cannot fathom how that would feel. We are very blessed and fortunate to be able to take AJ home. Without a doubt, he was put here for a reason. His angels continue to stay close and watch over him. :)  

I cannot believe that 8 months ago today, my water broke while we were at the lake and we rushed to the hospital. Unexpectedly, baby AJ, our miracle baby, was born. What a journey it has been. Through the ups and downs, we are so grateful to have made it this far.  

Today was a great day! AJ is so much more happier! They moved him to the general PEDS floor! They took him off of his monitors and only did spot check vitals every 4 hours. It was so nice to be able to pick him up without worrying about tripping over all the wires.

His labs today looked great. His sodium levels are just a little low but that should regulate as we decrease his diuretics. They continue to ween him off his other medications. They still plan on having the sedated echo and EKG in the morning. If they look well, then we will start planning for discharge! Possibly, this week! I really hope so. I'm ready to sleep in my own bed and I think AJ feels the same way. I'm keeping my fingers crossed :)  

Today was a good day. Tom was able to spend some time with AJ. He was super excited to see his daddy. He just kept looking at him in awe. It was so funny. Overall, today was better than I expected. The x-ray this morning showed good results. There is no air in his lungs anymore and no major drainage to be concerned about. They saw a very small amount of fluid on the side but it is nothing that they are worried about right now. So as of right now, no more chest drainage tubes!

He is still vomiting after feeds and has runny stools. They decided to start him on a probiotic. So, hopefully, that will help him within the next few days. Labs will be taken tomorrow to see where his levels are at. They will also try to ween him off of the Valium soon.

They plan to complete a sedated echo and EKG on Monday morning at 8am. Depending upon those results, we will either be near a discharge date or will still be here for awhile. I am hopeful that all will be well and we can go home sooner rather than later. :)  

Today was a much better day than yesterday. He did not show any symptoms of trouble breathing over night. He is still on oxygen. They said that it has really helped with lifting his lung back up. They are going to complete another x-ray tomorrow morning. If that shows more accumulation of fluid then they will have to insert another drainage tube. I pray that there is not accumulation and that he will be closer to going home.

Regarding his vomiting and loose stools, he still has them frequently. They have formed a new hypothesis. At first they thought it was withdrawal but now they are thinking that it was from the antibiotic that he was on. So they stopped the antibiotic and started him on Valium. They cannot and will not change his formula. So let's hope that it was from the antibiotic and nothing else. Or else I will just have to put up with it for the next 5 weeks.

I have also come to the conclusion that he probably will not have a swallow study while here. When I try to feed him 1) it's difficult for us to get comfortable (not many seating options) 2) there are so many people around that he cannot focus 3) there's just so much going on with him right now that I think he needs time to adjust and get situated before introducing it in order to be successful. Fortunately, OT said that is not a problem and can include the study in our discharge follow-ups.

Overall, today was good. He was happy and getting back to his normal self. I really hope that his drainage has subsided and he does not need a tube.  I'm not sure what he is going to do when he does not have dozens of people to look at all day. But I know he will not be missing the nurses. He has figured out who they are and screams when they even get close to his crib. He's a smart little baby.:)

 Can you tell that he is teething?? haha

He was happy that he just finished the chest x-ray and went for a ride in the stroller!

There's no easy way to say this other than today sucked. This morning they took out AJ's pigtail and right pleural drainage tubes. The only reason why they took out his right pleural was because a suture came loose and air was able to pass through it. The air could actually be heard from his chest. Thus, this morning he was the happiest baby ever because he did not have any tubes in! We snuggled, played, and just had a good time. His demeanor completely changed without them. I was loving it!

Due to the tubes being removed, they wanted to complete an x-ray to see if there was still an excessive amount of drainage since they initially did not plan on taking out the right pleural. The x-ray did not have any good news. There still is drainage on the right side. That means they will place another drainage tube on his right side tomorrow.

Also, the x-ray showed that his left lung is beginning to collapse where the tubes were removed. That means that he is back on a full liter of oxygen. They are trying to "blow" up his other lung back to normal. The plan is that they will watch him closely tonight. If they see that he is having trouble breathing or stops breathing-they are ready to perform an emergency procedure. This is just one of those "bad" side-effects of the drainage tubes. It pretty much freaks me out.  

More negative news: he is still vomiting chunks of formula. The new idea is that he may be withdrawing from Ativan. So they started him on some Valium. They do not want to change his formula just yet. They will reevaluate it sometime tomorrow. The dietician recommends changing from bolus feedings to continuous. I'm not sure how I feel about that but if it will stop him from vomiting-I'm all for it!

It's been a long and draining day. I feel like an emotional wreck. I don't know how or what to think. I guess we will just see what tomorrow brings.

So today was definitely a rough day. AJ's pigtail tube was not able to be taken out. When they prepped him they unseal the drainage and let it suction. Well it suctioned more than what was supposed to be there. So his left side is still in a great deal of pain. They also took off the dressing from his previous tube that was on the left side. It was moist but was forming a scab. So that is good.

So, of course, before every feeding was the time that he decided to take a quick nap. Thus, I only was able to introduce a bottle to him once. The bottle had apple juice in it because Enfaport is just disgusting. He really was not in the mood for anything. OT also brought up some baby food. Pears (she must have randomly chose them). He liked them but it was so difficult to try to get him comfortable with the tubes and wires. And I know that in order for him to eat, his positioning needs to be perfect so all he has to worry about is suck, swallow, breathe. Unfortunately, OT is delaying the swallow study until he has a few more successful attempts.

He also has been projectile vomiting in large volumes. He did not spit up at all with Neosure so I am going to blame it on the Enfaport. They insist that he really needs Enfaport. I plan on discussing it in detail with the nurse practitioner tomorrow.    

Throughout the entire day, AJ was super tired and fussy. There are just too many things going on around him and he does not want to miss a thing. In addition, I think the tubes are continually forcing him to be in pain so he would probably benefit from a higher dosage/frequency of pain medications. When he cries, nothing can soothe him. It hurts him to be picked up. It just breaks my heart to see him like that. I plan on going to bed early and trying to start fresh tomorrow...    

Today was a successful day! An x-ray this morning showed that there is no longer an air pocket in his lungs. Finally, a nurse decided that there is no need for him to be on oxygen and took it off. He was so happy about that! His cheeks, of course, are blistered red but at least now he does not have to try to rip it out all the time. He also decided that he did not need the peripheral IV that was in his foot. Somehow he pulled that out. But thankfully they do not think that they will need to put another one in.

They also decided that if all goes well, he will have his pigtail tube taken out tomorrow morning. Then only 1 more left! The right pleural one that is left is still draining quite a bit. So I'm not sure how much longer he will need that one.

PT finally came in today too. They were so pleased and surprised at how well he is doing. They did not think that he would sit up by himself as much as he does. He also is grabbing for toys in midline which typically does not happen so soon after surgery. He does have a lot of tightness in his neck, shoulders, and hips, which is expected. They plan to see him every day until discharge! I was happy with the way that they interacted with him and the gentleness that they used.

OT (occupational therapy) came by, as well. The swallow study is scheduled for the 17th at 2pm. I offered him a bottle with only 5ml of Enfaport through a normal flow nipple. Enfaport is much more bitter tasting than Neosure, so I was apprehensive at first (and yes, I tried it). He took a few sips but was not enjoying it. He played with the nipple like it was a toy. But for being the first bottle in a long time, I think he did very well. OT wants me to offer a 5ml bottle at every feeding that he is awake and alert for. This will help him to get ready for the swallow study. My only concern is that he is already accustomed to Neosure and I want to put him back on that. I just don't want to create a negative connotation towards feeding because of the taste of Enfaport. I guess we will just see what happens...

Overall, he looks great, is laughing, playing, and starting to talk again. I can tell that he is feeling much better. Once the pain from the tubes is gone, he will be very close to discharge!          

And no he is not sucking on that pacifier. He still doesn't like them. He's just playing with it.

AJ was able to have his left pleural chest tube removed this morning. The X-ray showed that he still has an air pocket in his lungs. Even though he does not need oxygen, the nurse practitioner felt that it will help push the air out. So who knows how long he will continue to be on oxygen. He has 2 tubes left and he is ready for them to be gone! It really is so difficult to hold him and enjoy it without worrying if you're going to step on a tube.  

He finally sat in his Bumbo chair and played with his toys. He definitely enjoys sitting up rather than laying down, as usual. I also requested for him to start receiving PT (physical therapy). The same nurse practitioner seemed to be apprehensive of it because she did not think that he was receiving PT at home. Apparently, she must not have looked at his chart. Thankfully, she has worked for the last 4 days and will not be around for the next few. Regardless of where you go, there are always people that give off bad/negative vibes. She is one of them. But that is okay. I continue to be positive and will not let the small stuff get to me.

On the bright side, AJ's digestive system is working very well. They finally stopped giving him Miralax because he has been leaving multiple stinky presents for the nurses on a daily basis. Apparently, they thought that we gave it to him regularly, not just as a PRN. Now they know. :)

The opening where the tube was removed started to drain out today because the suture was no longer on it. The nurse covered it with gauze and hopefully it will not drain as much. These tubes have caused a great deal of chaos for the little guy. Yet, it barely phases him. He acts like himself minus the fun baby talk. He still does not have his voice back so he moans and groans. And he is always itching at his chest-trying to rip everything off-typical AJ behavior. :)

I just can't wait for discharge day. It will be a relief to be at home, close to our friends. I miss our normal routine and I'm sure he misses it too. Soon enough though. Soon enough.    

    

This is a good color on him! He scratched his forehead though...

So AJ has had a minor setback. His new "pigtail" tube seems to be working and the air pocket has decreased but is not gone. Since the pigtail tube has been placed his other tubes have decreased the amount of drainage. They plan to remove one more chest tube sometime tomorrow morning. Also, he is still on oxygen. They state that the oxygen is helping push the air. However, Tom and I do have our concerns that continued use will just make it more difficult to ween him. The nurses do not feel that it will be a problem.

They tested the blood from his chest tubes and found that he is losing a significant amount of healthy fats. Thus, now he is on Enfaport formula to help absorb fat easier. He will have to be on it for at least 6 weeks. This is one of the negative side effects of having chest tubes in for a long period of time. So we are hoping that he will not have to have the other ones in for much longer.

I guess I should have expected that there would be this kind of setback because things seemed to be going too smooth to be true. We will just try to keep our trust and faith in them and continue to pray that there will be no major flaws during the rest of his recovery.  

So today was interesting. AJ received 4 x-rays because they noticed pockets of air in his lungs. One of his chest tubes was leaking and possibly could have caused the air. They put him on half a liter of oxygen in order to try to blow out the air. However, that did not work. This evening they decided to take out 1 chest tube and place a smaller tube in the same place. They sedated him and completed the procedure bedside. The cardiologist stated that she noticed a significant difference in his x-ray after the procedure. Hopefully, his other 2 chest tubes will decrease in drainage so those can also be removed. Otherwise, he is doing well. They stopped his Ativan today and he seemed to be much more comfortable without it. We hope that these tubes will not cause him more harm than benefit. Only time will tell.

So he is still in moderate care. They took out only one drainage tube today. He has an extremely high amount of drainage! They also tested his blood that was draining because it was looking thick and cloudy. Luckily, nothing came back but they will keep a close eye on it. He also has his days and nights mixed up. He was up charming the nurses all night and wanted to sleep all day today. So I held him the majority of the day until my arms were numb and he was in a deep sleep.
The last arterial line that he has in is leaking. However, they need to draw blood tomorrow for labs. Hopefully, they can draw and then they will take that one out. They put another IV in his foot for Ativan. But hopefully his last dose of that will be tonight. He's still on oxygen. The nurse practitioner believes that he will be on it until all of the chest tubes are out because the tubes make it difficult for him to take large breaths.
I met with the speech pathologist today regarding his feedings. She was very nice but still wasn't our Wendy. :) She wants to have another swallow study completed-sometime next week-to see where he is at. Then we will slowly start oral feedings. I'm really hoping that he will like the bottle again! We will just wait and see what he decides.
Oh and he's finally pooping again! I told them that Miralax will work very well for him. They found out on their own when he left many big special presents!
Other than that, he is still slowly progressing. I keep telling myself to just take one day at a time.

Today was an awesome day! AJ was moved to moderate care this morning!! We are just one step closer to going home! They stopped many of his medications today. They took out one arterial line and took out the IV that was in his left hand. They did not take out any chest tubes as anticipated because he still has quite a lot of drainage. They have to sedate him and he has to fast for 6 hours before they can remove them. So they will try for tomorrow but that is not guaranteed.
His eyes are still puffy though but he is able to open them. The morphine is really making his face itch so now it's red from him scratching. He also decided that he does not want to have anymore oxygen so he kept pulling it off and putting it in his mouth. They said that they will try to ween his oxygen tonight. They ended up giving him some Benadryl, Tylenol, and Motrin interchangeably throughout the day. Hopefully, that will allow him to be comfortable and then they can stop the morphine. His fever is also gone so that's great.  I was able to hold him again today. It was still difficult but he liked it more than yesterday. He is tolerating his feedings very well. I asked for OT to come in and help with oral feedings so hopefully that will happen tomorrow or by Monday.
He is finally getting back to his normal self: kicking all over the place and trying to laugh and scream but still doesn't have his voice yet.  I think that confuses him. We do not know how long he will be in moderate care before he can be moved to regular PEDS. Everyone continues to go at his pace. He will know when he's ready.        

This is from today

This picture is from yesterday.

AJ is still on a small amount of oxygen. His eyes are still puffy so it is difficult for him to completely open them. His oxygen saturations have gone down a little but are still in the low to mid 90's. His color is great but when he cries his lips do turn blue again. He doesn't have his voice back yet. They decided to not take out his chest drainage tubes just yet. They plan on taking out 2 sometime tomorrow. Hopefully, he will be stable enough to breathe without oxygen, as well. The best news of the day is that I was finally able to hold him!! Although, it was quite an ordeal to get him out of the bed and into my arms. It took 2 nurses and myself to hold all the tubes and wires. To say the least, it was very uncomfortable for me but was amazing to be able to hold him again. It was almost like the first time that I held him all over again! :)

He also was running a fever today. He was given Tylenol to try to reduce it. They stated that since he had so much mucous sitting in and near his lungs, occasionally that can lead to a fever. They place a vibrator under his back and pat his chest and back to try to loosen the mucous. If he still has a fever tomorrow, they will run cultures to see if it is an infection. I really hope not, though.

If possible, they will take out his arterial line tomorrow too. Thus far, he has been tolerating his feedings very well. They are only giving him 20 cal formula and only a little over 2 ounces. Within a day or two, he should be back to normal feedings every four hours. The nurses were saying that if he continues in this direction, that he should be on the general PEDS floor in the next few days!

It is so funny how all of the nurses keep saying that even though he cannot talk, they know exactly what he likes and dislikes. His loud and strong personality are what has kept him here with us this long. He truly is our miracle baby and his angels are always by his side.

And just so everyone knows, I actually have been eating (not just snacks or junk food) and sleeping very well this visit. My confidence and reassurance from this medical staff has allowed me to do so.  :)

So far today has been a good day. He was finally taken off the ventilator. He is on about a quarter of a liter of oxygen but they plan to ween that sometime tonight. His oxygen saturations are currently at 100%. AJ was taken off the Lasix drip and now receives it every 6 hours. His catheter was removed and he is soaking up the diapers. He finally opened up his eyes when he heard me talking. However, they are still very swollen and puffy so it was more of him squinting. But he did get super excited and starting kicking his legs up like he always does. He tried to reach his arms out but he still has one IV line on his left hand. His incision looks very good. It's a little swollen but nothing major.  
They plan to feed him sometime tonight. He will start on 12ml an hour for 12 hours then increase as he tolerates. His skin color is just amazing! He still turns a little blue when he gets upset but not nearly as dark blue as it was before. They are hoping to ween him off some of the medications tonight or tomorrow. The plan for tomorrow is to take out 2 of the 4 drainage tubes. Dr. Bove came by to see him and was quite pleased with how he is recovering. He thinks that we will be out of the hospital sooner than we expect. I was very happy when I heard that. This has definitely, by far, been his best recovery yet!    

Well there wasn't any internet service yesterday but overall yesterday and today were very similar for AJ. They finally put him on a Lasix drip yesterday to get his swelling down. There is a noticeable difference. His temperature has also been more regular and he is no longer cold to the touch. His heart rhythm has been normal, as well. Today, they took off his bandage on his incision. It looks much better than it did after his previous surgeries. Last night he got a little restless and they had to give him an extra sedation medication. They all agree that he has attitude and let's them know what he wants. The nurses are doing a great job at keeping him comfortable but not completely doped up (unlike St. Vincent if I don't mind saying so). The goal for tonight is to keep him comfortable and stable. If the nurses feel that he is strong enough, they will try to ween him off of the ventilator sometime tomorrow. If he does, that's great but if not then that's fine too. No need to rush him if he's not completely ready. I appreciate that they are going at his pace and not their own. So far, all of his nurses have been wonderful. And I am finally finding my way around the place without getting lost! I pray that he will continue to be strong and will heal well.    

Today was a good day. Nothing new really. They took out his Atrial line that was in his heart. Finally got him back on some diuretics and we are hoping his swelling will go down soon. He's doing well on the ventilator right now. We are trying to make sure that he gets enough rest so he can get strong as soon as possible. I have a good feeling that this recovery will be better than any others! Just keep your fingers crossed and keep those prayers coming!

Pictures of AJ-somewhat graphic...

Surgery Day

Oh what a day!
We had to be at the hospital by 6:15am. They took him in to pre-op exactly at 6:15am. They decided to give him some happy meds to relax him before he went back because he was getting anxious. Tom, his mom, and my mom were all able to be in the pre-op area. It never gets any easier to let them take him back to the OR. The unknown is frightful. Of course, they took him back and I completely lost it. I knew he was in very good hands but the general thought of surgery scares me every single time. They then directed us to the ICU waiting room.

It seemed as though we waited for someone to give us an update forever. They finally began surgery after 8am. They gave us an update approximately every two hours. It was reassuring but I was still concerned because time seemed as if it was standing still.

Eventually, around 2:30pm, the nurse practitioner came and told us that the surgery was complete. His ASD was closed, the clotted shunt was removed, a conduit was placed, and the VSD was enlarged with a synthetic patch. So "complex" is an understatement. They were taking him to recover in the ICU.

We were finally able to see him in the ICU around 4:30pm. For the first time ever, he has PINK lips, hands, and feet! It was crazy to see him look "normal." Even though he is completely covered in wires, tubes, etc. he looks so good. The incision that he already had is now longer due to needing more space for Dr. Bove to work. Also, for the first time ever his oxygen saturations were 98!! No more 65 for AJ! I just could not believe how quickly he has improved. In some aspects, I wish we would have came to Michigan sooner but I guess everything happens for a reason.

We did not stay long because when he heard my voice, he began to get upset and tried to wake up. I hate seeing him in such pain and just wanted him to rest. We are praying that he has a good night and are optimistic about his recovery.

Lastly, we were also able to get into the Ronald McDonald House! Through every obstacle and challenge that we have faced, we still are truly blessed for what we have. We are so grateful for the love and support that everyone has given us. The encouragement and optimism has kept us strong. Thank you all!          

Testing Day

Today included an x-ray, sedated echo, EKG, a physical, talking with numerous doctors and medical staff, and 2 sets of blood tests due to some staff members not knowing how to do their jobs. So it was stressful to say the least. However, AJ did surprisingly well the entire day. We were running around all day. I don't think I have ever been in such a huge hospital. The place was like a zoo!

Tonight will be a rough night. He won't be able to eat after 1am. Praying that all goes well and we can get some sleep!

We finally made it!

We finally made it to Ann Arbor through the ice, snow, rain, wind, lack of plowing, reckless drivers, you name it! Hopefully, we can get some sleep tonight since tomorrow is going to be a very long day of testing for AJ. This is the beginning to another long journey.

Hello

Hello everyone!

I decided to create this blog for AJ's upcoming heart surgery. I will posts updates of AJ on here, hopefully, on a daily basis. This will make it easier for me to communicate to everyone about what is going on rather than telling the same story multiple times.

We appreciate everyone's support and prayers during this stressful time.

Love always,

Heidi