Wrench

Well, if we hadn't already had enough wrenches along the way, we just got another one. Tonight one of the cardiovascular surgeons called us and told us they have to do a “procedure” on Caden tomorrow to remove a foreign object from him. Apparently, when they removed the line on Friday that went into his heart, a small piece of the catheter broke off and is still in his body. According to the x-ray, it is right beneath the surface of the skin and right above the insertion point where the line was. So, they have to reopen the small incision where they removed the line and dig out the object. The surgeon said that in his nine years of doing this, he has never seen this happen. And, Dr. Reddy said in his 20 years, he has never seen this. They believe it was a defect in the catheter and that a piece of it broke off or something. They don't actually know for sure until they get it out. But, it just seems like once again, our little Caden is proving that he isn't the standard patient. He is unique and wants everyone to remember him.

So, Sunday morning around 10 am, they are going to sedate him, thankfully no intubation necessary, and take the object out. The surgeon doesn't believe this will cause us any delay in our stay and as soon as the procedure is over, Caden is supposed to go right back to 3W where he currently is. He doesn't have to stay in CVICU so that is good. We are just shaking our heads over this though because what are the odds of this happening and of it happening to our baby??? Crazy things, I tell you!

Culture Shock

I have to say that going from an ICU unit to the unit we are currently on is causing a bit of culture shock. For the majority of Caden's time in CVICU, he had a one-to-one patient-nurse ratio. There were times when he was paired with another baby to be cared for by one nurse. But most of the time he had his own nurse. Now we are on 3W and Caden's nurse has three patients and she's not in the room with him at all times. The great thing about the room is that we share it with only one other patient and it is much quieter than the CVICU. We get room to spread out a bit and make ourselves at home. It is also a little easier with Kyler around because there is room for him to play and a large couch he can play on with his toys.

But the nurse comes in only periodically to check on things. Overall this is okay, but it's just a strange feeling. Greg and I are taking turns giving Caden his medications and starting his feedings. Basically we're just learning how to use the g-tube. The nurse gave us a video to watch but we haven't had a chance to do that yet.

Caden remained stable through the night. His roommate and her father said they never would have known there was a baby in the room because he was so quiet. And, it's not because he doesn't have a voice anymore. He definitely has his voice back and is wiling to use it to make himself heard. It's such a great sound! The nurse gave him a bath this morning and he wasn't all too impressed with it and made sure we knew it. He got bathed from head to toe, which is something he isn't used to in the ICU units. He had too many other things going on to have a full bath.

When the doctors rounded this morning, they decided to increase his blood pressure med in order to bring his pressures down even more. Caden had an EKG to make sure everything looked good there, which it did. And, they had an x-ray taken to see how his lungs looked. On further examination by a radiologist, it appears there is a pneumothorax in the right side of his chest. That just means there is some air or gas collected in the area outside the lung in the chest cavity. This can cause partial collapse of the lung which obviously is a problem for Caden. So, they are treating this right now by increasing his oxygen because can help resolve the problem. They will take another x-ray later today to see if there is any difference and will discuss how to proceed based on those results.

They are working on getting his medications scheduled so they are given at the same times of day so we aren't getting up every couple hours at night to give them. I guess the other thing they did was increase the volume of his feedings. He had been consistently waking up an hour or so before each feeding acting hungry. He would root around and be quite fussy. So, thankfully they moved up his feeds by 5 mls/feed. If he is still acting hungry between feedings and he seems to be tolerating them well, they will increase them again. He actually lost a little bit of weight between yesterday and today (very little, but still not a gain). So, they definitely want to make sure he is getting enough to eat. Otherwise, Caden is doing well. We are so grateful for his status right now and hope the pheumothorax resolves quickly so we can continue our quest to get home.

Caden smiling after his bath

Graduation Day!

Today, we graduated to the third floor into a regular pediatric unit, no ICU! This morning when we went into the CVICU, Caden had done really well overnight. The surgeons took out the line into his chest and he got his arterial line out. That left him with only one peripheral IV remaining in his left foot. Other than that, the only lines he still has on him are oxygen through the nasal cannula, an oxygen sensor, and respiration and heart monitors. It's amazing!

During rounds, one of the nurse practitioners from the third floor came in order to find out about Caden's history before he moved up. She said they didn't have any beds available, but maybe later today or possibly tomorrow. So we would just have to wait. He was ready, it was just a matter of bed space at this point. About 20-30 minutes later, we were told that he was moving “now.” I guess there was a patient on third floor who needed to be moved into the CVICU so they were going to trade places. The timing worked well for us. However, “now” really meant about three hours later.

Caden was temporarily moved into a treatment room (aka: storage closet) while a baby from another spot in CVICU was moved into Caden's old spot. Then the patient from third floor was moved into the newly vacated bed spot in CVICU, leaving the bed available on third floor. It was truly a game of musical beds. We were just happy it all worked out for him to get moved today. We really feel this last stretch won't last long and that he will be ready to go home in no time. The doctors are saying probably the end of next week. We are hoping for middle of the week, but we will see what Caden's timetable is.

Right now, they will be working on weaning him off the last little bit of oxygen he's on. And, they will be weighing him daily to make sure he is steadily gaining weight. And, the last thing they will be looking for is for him to be balanced on all of his meds, particularly his diuretics. So, once all those things are accomplished, he should be good to go. Of course, during his time in this unit, we will be educated on how to administer his meds and how to use/clean the g-tube. It really shouldn't be too difficult for us to master this, just a matter of being told how. We are so excited for the progress today. It truly won't be long now.

More Progress

Today, there continues to be more progress for our little man. He is up to 15 mls of milk per hour and this afternoon they were going to switch him from continuous feeds to bolus feeds. So, he will be getting 45 mls every three hours. This will help him get into a better eat-wake-sleep cycle. Right now he is pretty random at how he sleeps or is awake.

This is also the last day of his antibiotics so that is great news. And, they were stopping the Zantac and Reglan because those were to help with reflux and digestion. But with the nissen, he doesn't need anything for reflux and he seems to be digesting his feeds just fine which means he doesn't need meds to help him with that. They have also switched all his other medication to be administered through his g-tube instead of through the IV's. He will be receiving a blood pressure med, another med to help with pulmonary hypertension, and Lasix to keep the fluid level down in his body. The Lasix will probably be the trickiest to get balanced out as it is more potent via IV, so they might need to tweak the dosage through the g-tube in order to get it to where it suits him best.

The surgeons are still planning on removing the last line into his chest tomorrow. Once that is out, they will remove the arterial line as well. That will only leave one peripheral IV in his left foot for now. We have tried a couple more times to remove his nasal cannula with the last little bit of oxygen he is receiving through that. He is handling it pretty well, but isn't quite ready to give it up completely. So, we continue to “sprint” him on that to help get him ready. Hopefully he'll be able to be off of it before we go home. If not, it isn't something that would keep us at the hospital, he could go home on oxygen.

His voice continues to get stronger each and every day. You can even hear him if you're in the hall outside his room, so there is definitely marked improvement there. We are so happy because it will be less stressful for when we go home. We asked the doctors what that would mean in terms of being able to take food by mouth. They said it would definitely take some time and some work with OT & PT in order to get him to the point where they would feel comfortable removing his g-tube. So once he is taking food by mouth and showing he can gain weight, it would probably be a few weeks doing feedings by mouth and through the g-tube. As of today, he weighs 7 lb, 3 oz. That is up from his birth weight of 6 lb, 7 oz so we are very happy. Of course, most babies at almost 7 weeks old have gained much more weight than that. But we are happy that he has gained anything considering he hasn't been allowed to eat for most of his little life.

There is a chance they will move him out of the CVICU to the third floor tomorrow, but if not then, probably on Saturday for sure. We are so excited because this means we are definitely almost home! It's hard to believe we are within such close range now. On third floor, they will be educating us on how to feed him through the g-tube and how to administer his medications. It is mostly an educational process to help us get ready to take him home. We are more than ready and feel our time there will go quickly.

More Improvement

Today, Caden continued to improve. I think I forgot to mention that they started feeding him Pedialyte through his g-tube yesterday to see how he would tolerate feeds again. He remained on that overnight and handled them very well. So this morning during rounds, the doctors decided to start him on breast milk again which made me very happy. They started him at 3 mls/hour and as the day went on, he was handling that just fine. So, his nurse talked to the doctors and asked if she could go up on his feeds and if they would authorize a set schedule based on his tolerance. So, the doctors approved his feeds to go up to 6 mls/hour and every three hours he would go up three more if he was tolerating them. That way they can get him up to full feeds quickly. Once he is at full feeds, they will transition him from continuous feeds to bolus feeds. That will be a key element in getting him ready for us to take home!

And, the doctors decided today that all the antibiotics would be stopped on Thursday night at midnight because his skin infection is pretty much gone and they aren't worried about it anymore at all. In addition, he has had a line into his chest since his original surgery on January 24. They have been hesitant to pull it out based on all he has been through and they needed it to administer certain medications. However, it has been there over a month now and we keep asking them when they will remove it. This is really dependent on the surgeons and what they want to do. So, they talked to Dr. Reddy this morning to see what he would like to do about it and he agreed that the line could come out on Friday. This is a huge step in the right direction for us and we are really happy about it. Also, if everything goes well with the removal of that line, they will likely remove the arterial line later that day as well. So Friday could be anther big day for us.

Now that his feeds are established and so far he is doing really well with them, one of the next big steps is to transition his IV medications to oral medications so they can be administered through his g-tube. They will need to get him balanced out on all the medications before we can go home and he needs to be on the oral meds for us to do that. So the sooner he can get switched over to oral meds, the sooner they can get the dosages worked out so he is stable on them and the sooner we can go home. Caden's primary nurse was going to push toward that for tomorrow which would be great!

I can't even tell you how great Caden looks. He looks like a whole new baby. You can tell he feels better and is hungry, so it's good his feeds are going up. Also, his little voice is really trying to come back. It's still very quiet, but I can tell he is crying even if I'm not looking at him. Before, if he was crying, you would have no idea unless you were looking at him. But today when he cried, there was enough of a noise that would cause you to look at him even if it was quiet. This is so great because this will alleviate much of my anxiety over taking him home without a voice. I was so worried about how I would know if something was wrong during the night. But if he even has a little voice, I think I will be able to hear him if he is sleeping in our room. So I feel so relieved about that!

We are pushing the doctors to be a little more aggressive with Caden now. But they are a little nervous about it given his history. I understand where they are coming from, but Caden is completely different now and is handling everything much better. Today, his nurse turned his oxygen off completely to see how he would handle it. He had only been on ¼ liter. In the past when they tried to wean him off completely his oxygen saturation would drop immediately and stay down. But today when she turned it off, it did go down, but it didn't go below 91% and it didn't stay down, it bounced around anywhere from 99 to 91 and anything in between. Because he didn't remain above 95%, which is where the doctors want him, she ended up turning it back on. But this is still better than he ever handled it before. So I think there is a good chance we will be able to get him off the oxygen before going home. What great news that would be! Overall, another very good day. We truly feel the end is in sight.

It's a Good Day!

Sorry we missed a day of updates. I took Kyler and went home on Sunday night--the first time I've been home in over 2 months! It was fantastic, even if it was short-lived. I spent the night there and took Kyler to two of his therapy appointments on Monday morning before driving back to Palo Alto on Monday afternoon.

While I was gone, Greg said Caden did really well. The girth of his waist went down a lot and he continued to be weaned on the nitric oxide and ventilator settings. The plan was to get him completely off the nitric oxide and get the vent rate down very low so they could extubate him on Monday or Tuesday, depending on how he tolerated the changes. He did very well with all the changes so that was great. Unfortunately, one of his peripheral IVs went bad and they had to replace it. Because babies with cardiac problems are often "hard sticks", it took them over two hours of using him as a pincushion before they were able to get another line in. And, the sad part about this, is the only place they could get it was in his head which meant they had to shave the majority of his hair off the right side of his head. Poor baby!

He continued to do really well all day Monday and they also started reducing other medications he was on as well. So, by Tuesday morning, they extubated just before 8 am and he did great. His respiration rate is way down from what it was before surgery which is a good thing. And, his girth this afternoon was down to 33cm. That is down over 5cm from Saturday! Great news for him. And, his bowels were working well as he was moving stuff through and out. This is another very good thing.

The pediatric surgeon came by to look at him this morning and was very happy with what she saw. The skin infection around the g-tube is much improved as well with only a little redness remaining. So, instead of a 14-day round of antibiotics, she said she would be happy with a 7-day. So that means this Friday he will be done with those. And this afternoon they removed the stitches holding the g-tube in place.

Caden looks so good today. We are able to hold him again and did so for quite awhile this morning! Since the last of his chest stitches came out on Sunday, his chest looks really good. It's amazing the difference. He just looks really good all around. And, he was also happily sucking on his pacifier. We hope this sticks with him and he is able to keep sucking. The other thing is when he cried he was actually making a little bit of noise. I do mean a “little” bit. But it is more than he was making before surgery. So, we are hopeful he might get his voice back earlier as opposed to later. It sure would be a huge relief for me if he has a little bit of a voice when we go home. But if he doesn't, we will work with that.

We are so happy right now because it seems Caden has made a turn in the right direction and hope we it continues. If everything goes smoothly, we are hopeful we could be home by the end of next week. It just seems like he is more comfortable and is handling changes better than before. If it continues, we should be in good shape. We are so anxious to get home and get into some kind of normal routine for our family. Thank you for your prayers as Caden progresses. We want him to be stable enough to get completely off the oxygen nasal cannula and settled into the medications he will be on when we go home. Once everything is stable for a few days, we should be able to go home!

Sunday, February 22

Well Caden continues to be the comeback kid. This morning brought better news for our family. His abdomen swelling had gone down by another centimeter to 36.5 and the redness around the g-tube had subsided significantly. The pediatric surgeons came by and were happy with what they saw. They indicated the decline in size and redness pointed to a skin infection rather than a leak in the tube. This means he will not need any subsequent procedure to fix the leak. This is great news! In addition they thought there was no longer any need to have the rectal tube.

During rounds they were also very happy to see his progress. They plan to start weaning his ventilator today starting by reducing his nitric oxide. They will make one change at a time to see how he tolerates it, but they are hopeful he will make good progress. The plan is to extubate Monday or Tuesday depending on how fast he progresses.

His labs all looked really good today and his urine output is great, which also bodes well for his progress. They plan to keep him on his antibiotics given the indication of a skin infection, but this seems to be well under control. The other big thing that will be happening today is the removal of the rest of his chest stitches. Had he not had the g-tube surgery and the complications that followed they would have come out before now.

If all goes as planned Tuesday should be a big day for us. He will have his g-tube stitches removed, he will be extubated and they will start feeds. These will all be significant milestones on his road to going home. Please pray for his continued recovery and progress as we look forward to going home soon.

Saturday, February 21

Greg's entry for Saturday Morning:
I decided to go over to the hospital early this morning since the doctors mentioned yesterday that they would do rounds early. This way Carey and Kyler could sleep in and we would still be able to know what was going on with Caden.

Caden had a rough morning today. The swelling in his belly has increased and there is increased redness around the G tube entry site. The general pediatric surgeons came by to check on him and they made the same observations that I did. They indicated they were concerned about a skin infection and they were going to start him on another antibiotic specifically for the skin. They also wanted to disconnect the G tube to prevent any additional pulling because of all the swelling. In addition they wanted to put in a NG tube to prevent any more air from building up in the abdomen. The root cause of all the swelling is the air in the intestines and unfortunately that will just have to subside on its own. As a by product of all this they will have to discontinue the medication they are giving him for pulmonary hypertension since it was going through the G tube. This is not a problem since he is on nitric oxide which is a more effective way to open up the vessels anyway.

I had been keeping my eye on his blood pressure since that has been a problem and I noticed that it continued to spike. The pain medication they had put him on last night was supposed to help this, but I was seeing the same type of spikes that were happening all of yesterday. The nurse had decided to give him another type of pain medication to put in his NG tube. This had the immediate effect of lowering his blood pressure which then normalized a few minutes later. However, after a few more minutes he dropped too low and the doctors were called in to correct the situation. They immediately stopped the blood pressure medication he was on and gave him fluids. He responded quickly to this and was back to a safe level though on the high side of normal.

From here they had to come up with a plan to manage the blood pressure without jumping from one extreme to another. The attending doctor was very clear that they needed to make small changes to medication and observe their effect so they did not end up chasing their tail all day. I appreciated this since I do not want him getting endless amounts of medication.

After the doctors left the nurse put in the NG tube and they suctioned him, which helped bring his oxygen saturation back up. He is effectively 30 hours post surgery and has not made it over the hump yet. I know he will get better, but it will just take some time. This is the “difficult” waiting as we do not get to hold him and touching him actually irritates him and causes his blood pressure to go up. He continues to fight and he seems to need a good dose of rest.


Carey's entry for Saturday Afternoon:
Later in the afternoon I went back to the hospital to check on Caden. When I got there, the nurse told me they had decided to put in a rectal tube to see if they could help get rid of some of the air in his bowels. She said it looked like from the x-ray, that there was a lot of air in the bowels and then it stopped before getting to the rectum, so it appeared there was maybe something blocking its escape. As she was explaining this to me, the attending physician came in and told me they were doing this first of all to see if they could reduce the girth of his waist. It had gotten 1cm bigger since they measured him this morning, putting him at 38.5cm! That is MUCH larger than he was yesterday. That was their main concern.

Then, the next thing they were worried about was the redness around the g-tube. They believe it could be a cellulitis infection. But, they are also concerned that the g-tube might be leaking and there could potentially be fluid draining into the abdominal cavity, which obviously is a very bad thing. In order to determine whether this is the case or not, they would need to do a contrast test and see where the fluid goes. If it is draining into the abdominal cavity, this would require opening him back up again to drain it and correct the problem. Obviously we are hoping this is not the case. But all the doctors are working together, pediatric surgery, Dr. Redddy and the cardiovascular surgeons, and the CVICU doctors, in order to identify and correct what is wrong.

I was there when the nurse put in the rectal tube and suctioned. A huge plug came out followed by 20-30 mls of air. The plug got stuck in the syringe and they replaced it with another one and continued draining. It appeared more air, etc. was moving through. It seemed like his girth diminished immediately, but of course, until they measure him again, it's hard to say for sure. I can only imagine how much pain Caden must be in. He has definitely been more agitated after this surgery than he ever was following his heart/diaphragm surgery. He doesn't seem to want to be touched at all when he's awake.

They had started his antibiotics to treat the infection around the g-tube. And, they had put him on different medication for his pulmonary hyptertension. Also, because of his vitals dropping when he was suctioned, they were sedating him before suctioning. So, they had given him morphine before suctioning him and putting in the rectal tube. But when he is awake, his blood pressure can go up quite a bit because of his discomfort. He must be in a lot of pain with all that air in his bowels and not being able to get it out. The good thing was the nurse said he had good bowel sounds and yesterday they weren't as good. That means he was improving after surgery, but it was taking time. No surprise, with Caden.

That's where things are at for now. They were going to monitor him overnight and see how the redness around the g-tube looked in the morning and would discuss whether or not to do the contrast test. And, they would re-evaluate how to proceed if his distended belly hadn't gotten any better either.

Greg just got back from the hospital and found out that Caden's girth had gone down from 38.5cm to 37.5cm. So that is good news. That happened in a matter of a couple hours. Hopefully overnight things will improve even more. They are not making any ventilator changes until they can get the other issues resolved. So, Caden definitely has a bit of a rough road remaining. But we hope it will pass quickly and we'll get to hold him again soon.

Post G-Tube Surgery

Caden is still stable, however, he is having a harder time recovering from surgery than we would have liked. It's not terribly surprising though, considering his history. He is still on the ventilator. Apparently during the night on Thursday night, his oxygen saturation dropped really low at one point so they decided they didn't want to rush to extubate him. As much as I want him off the ventilator so we can get home, I am glad they didn't try to extubate him when he clearly wasn't ready. They also put him back on the nitric oxide because they want to prevent any kind of pulmonary hypertensive crisis and cardiac arrest like he experienced four days after his first surgery.

During the day on Friday, he was asleep most of the time. But he would get kind of agitated and wiggle his arms and legs around. It seemed like he was in pain so they were giving him morphine periodically. However, that didn't seem to be cutting it, so Amy, his primary nurse, got one of the doctors to write an order for an IV drip pain medication. It sounded like one of the doctors didn't really want to do this but would rather just give him a paralytic. I am glad that Amy was advocating for him because I would rather they manage his pain instead of just paralyzing him and masking it.

Last night when I was at the hospital after shift change, Caden was wide awake and looking around. I sat with him awhile and he started to get pretty agitated. When I looked at the monitor, it showed his blood pressure was pretty high. So I told the nurse and he gave him some medication to bring it down. Then when the doctor came around, the nurse told her about it and asked if he could increase the pain medication. The doctor authorized it so they went up on the meds so he would be more comfortable.

I am glad Caden got the g-tube and nissen because I think it will help us get home and will allow us to feed him without the worry of him aspirating. However, it is hard to see him now because he is extremely swollen from surgery and it just feels like we've taken a huge step back. I just have to remember that he had another major surgery and he has to recover from it. That is going to take some time, and with Caden, he has his own timetable with everything.

The doctors also decided to move Caden yet again. He is back in a room he was in previously just in a different spot. This is the fifth place he's been in the CVICU alone! We're not entirely sure why they moved him this time. His old spot is still empty. But there is one baby in the room he was in who is very sick and we think maybe they wanted to move Caden to another room in order to separate them. Since Caden is post-op he would be more susceptible to any germs or infection. We don't know this for sure, but we're just guessing.

Anyway, we appreciate your prayers and ask you to continue praying for Caden's recovery from this most recent surgery. Once he is off the ventilator, the doctors will need to work to get him balanced on all his medications that he will be on when we go home. Once he has been steady on those for a few days, they will move us to anther unit and we will learn how to administer his meds as well as how to feed him through the g-tube. And then we'll be able to go home! It seems like such a short time period, but in reality it could take awhile. Thank you for your prayers during this last leg of our journey to get home.

Surgery is Over

I just spoke with the pediatric surgeon. She said Caden is out of surgery and that he was stable throughout the procedure. She said they were able to do it laparoscopically even though they weren't sure they would be able to or not. She said he did have to have a small blood transfusion but it wasn't anything serious, he just had a little oozing. She did say he was still intubated and would remain so for now. Even though I am worried about how easily he will come off the ventilator, I want him to remain stable. So, if that means he needs to stay on the vent for now, I guess that's what he has to do. Hopefully he will be able to come off in the next couple days though. I am just praising God for being with Caden throughout his surgery and for keeping him safe. Thank you all for your prayers as well.

Surgery

The anesthesiologists came at 1 pm and took Caden to the operating room. They said the surgery can take anywhere from an hour and a half to three hours, or longer. They are supposed to call us when he's done. I walked with him all the way to the doors of the OR. This time, the OR is on the ground floor of the hospital, so now he has been on three floors of the hospital! He's really getting around now. : ) I kissed him goodbye and am now just waiting to hear when he's done. It as a little more emotional on me than I anticipated it to be, but I know they will take good care of him. And, God is watching over him and protecting him as well. I will post more when he gets out of surgery and I have an update on how he is doing. Thank you for your prayers!

Surgery Thursday at 12:00 pm

According to the pediatric surgeon, Caden is the third surgery scheduled tomorrow. He is supposed to be taken around noon. However, as most things are around here, it is subject to change. It is most likely he will go in a little later than that.

In the surgery, they will put in the g-tube for feeding and they will wrap the top of the stomach around (Nissen) to create folds which will prevent any reflux back up into the esophagus. This will prevent him from aspirating any milk into his lungs. He will be unable to have any food by mouth until his left vocal cord starts working again.

Thank you for your prayers as Caden has another surgery. We especially want prayers for him to come off the ventilator quickly so that doesn't delay us in the hospital for a much longer time period. We will keep everyone posted as we know more.

Surgery Scheduled

I just wanted to let everyone know that Caden's laparoscopic surgery for his g-tube and nissen will take place tomorrow. They haven't told us what time yet, but hopefully this afternoon they will let us know.

Please pray that everything will go smoothly and he will be able to come off the ventilator easily. His hypoplastic right lung is what caused him to have trouble with it before and I am really hoping it won't be a problem this time around. We'll post more information as we get it.

Waiting

Nothing too much happened today. We still haven't heard anything about date/time for Caden to have surgery to get his G tube. The nurse practitioner told me tonight we should hear something on Wednesday morning in regards to surgery date. Otherwise, he pretty much remained the same. Shortly after he gets his medications his heart rate jumps up and stays up for an hour or so. The doctors don't seem to be too concerned with it. However, last night after receiving his meds, he had an episode of PVC's along with the high heart rate. So, that concerned them but he hasn't repeated the episode.

We asked again about the results of the genetic screening they did to see if they had come back. This morning in rounds, they didn't know. But this evening, one of the doctors told me the tests had come back normal. So, at this point, there isn't a syndrome attached to Caden's defects. The nurse practitioner told me that 75% of incidents of defects are purely random and occur for no reason at all. 10% are genetic, and 15% are exposure to something in the early stages of pregnancy, usually some sort of medication taken by the mother in the first few weeks. So, the vast majority have no explanation as to why the defect occurred.

Kyler had another good day today. He had a great time at preschool and really didn't want to leave. I literally had to drag him out kicking and screaming. But the promise of taking him to the model train at the hospital calmed him down. He sat with us fairly quietly during doctor rounds and then went back to RMH with Greg and had lunch and took a nap. But most of the time he wants to play with the trains at RMH. He will spend hours there if we let him, he's just slightly obsessed.

We'll keep you all posted in regards to when Caden's surgery will be as soon as we find out. We want it to be very soon so we can continue forward progress and not just be waiting around. But we need to remember God's timing is perfect and this is in his hands.

More Surgery Ahead

On Saturday, I talked to the attending physician during rounds about how long he expected Caden to remain in CVICU. He said he expected it to be another week but of course everything is subject to change. I also talked to him about the reflux study they had scheduled as well as the swallow study another doctor had mentioned to us. The attending said that he thought both of these studies were irrelevant and that if it were his child, he would just want him to have a G tube (feeding tube) put directly into his stomach and a sphincter placed at the top of the stomach in order to prevent any reflux into the esophagus. The G tube would be the means by which Caden would receive all his food until his vocal cords begin moving again. Once that happens, the tube could be removed after Caden is able to eat food by mouth. The G tube eliminates the worry for aspiration and provides the nourishment he needs to grow and thrive.

The attending spoke with Dr. Reddy, the cardiothoracic surgeon, and he was in full agreement in regards to placing a G tube. So, the pediatric surgery team was contacted for a consultation on Sunday. They met with Greg on Sunday morning and Greg signed the consent for surgery. We are not sure when surgery will take place. They said it will be later this week or beginning of next week. When I talked to one of the surgeons later on Sunday, I told him we would like to have it done as soon as possible. He acknowledged we had been on a long road and he said he would see what he could do to get it done sooner rather than later. Who knows if that will happen or not. The surgery itself seems to be minimally invasive and shouldn't take too long. However, the part that concerns me the most is that he has to go back on the ventilator in order to have surgery. Since it took 12 days to come off the ventilator after the initial surgery, I am worried it is going to take some time.

I talked to one of the cardiologists Sunday night regarding the ventilator and my concerns. He said he doesn't believe it will be near the problem it was after the first surgery. He thought this one would be much quicker, much less invasive and less traumatic on the body. He said the ventilator would probably even be removed in the operating room and if not, shortly after returning to CVICU. I pray this is true because I don't know if I can handle another 2 weeks of not being able to hold my baby! After talking with the attending again, it may be more realistic it will be a couple days before the ventilator comes out. But Caden has been unique in so many situations already, it wouldn't surprise me if he has a harder time than they think.

Otherwise, most other things with Caden are stable. He received a little bit of blood Sunday morning due to a low hematocrit. The surgeons removed some of his stitches from his chest incision and the scab is coming off so it doesn't look quite so gross. Unfortunately Sunday night his NJ tube got clogged and it had to be removed and replaced. Poor Caden has had to deal with the tube going in and out of his nose so many times, I'm sure it doesn't feel good! But once the G tube is put in, that won't be a problem anymore. Hopefully the G tube won't clog as easily.

The only other new thing is that Kyler is here to stay with us until we go home. We missed him so much, we didn't want our family to be separated anymore. So, he will be with us until we can all go home together. The hospital has many services/activities for patients and siblings of patients which is great. There is a preschool we can take him to from 10 am – noon and drop him off. The nice thing about this is that is normally the times the doctors round. So Greg & I can both be there for rounds. Then at noon, we can pick Kyler up, have lunch and then he'll take a nap. It will just mean a little more juggling back and forth with me and Greg, but there are options. There are other activities at the hospital we can do with Kyler as well. So between that and the things offered here at the Ronald McDonald House, we should have a lot of fun things to do with Kyler. And, he also likes to see his brother. Sunday when I took him in, he wanted to hold Caden, so I held both of them for quite awhile before I got tired. It was so sweet how Kyler wanted to hold him. He smiled at him, stroked his head and kissed his head. Adorable! Then when he was done holding him, he played with some toys on the floor on a blanket the nurse put down for him. He was happy for almost an hour, just hanging out. It was wonderful! So, hopefully we can have more days like that. But if he only lasts five minutes, that's okay too. We will just take what we can.

Today, they took Caden down to radiology to do a GI follow-through to track how food moved through his system. This is on the first floor of Lucile Packard Children's Hospital. I realized on the way down there with him that this was the first time in his 5+ weeks of life that he has been off the second floor of the hospital! Labor and delivery, NICU, the operating room, and CVICU are all on second floor. So he had never been anywhere else. But today he had a big outing and visited the first floor! Normally I think only a nurse accompanies the patient, but because of Caden's history, they sent a nurse practitioner along as well. Just in case something happened. Thankfully it was an uneventful trip there and back. We don't have the results yet, but hopefully it will show that everything is working the way it should be. This is something the pediatric surgeons really wanted to have done before they do surgery to put the G tube in.

Kyler loved the preschool this morning and didn't want to leave. When I came to pick him up, I asked him if he was ready to leave and he said “no.” But when I told him he could come back tomorrow, he said, “okay” and readily left with me. What a sweetheart. I'm so glad he enjoyed it. I think it will be really nice for him to have that to go to.

The Latest

Yesterday, a couple ENT doctors came and evaluated Caden and did a video scope on him to see if they could identify what was going on with his vocal cords. When they did the scope, they verified that the left cord is paralyzed. I guess this is very common with coarctation repairs (although nobody mentioned it to us) as the nerve that goes to the left vocal cord wraps around the aortic arch where they do the repair. So, it is not uncommon during surgery for that nerve to get stretched, nicked or even severed. If Caden's nerve was stretched, it will likely take anywhere from 6 weeks to 6 months to heal. If it was nicked, it will be more like 6 months to 1 year. And, if it was cut, the left cord will never work. However, that being said, the right cord often compensates for the left cord not working. However, that will take time. For now, his voice isn't the main concern, the issue they are worried about is aspirating fluid into the lungs.

Caden has consistently had a high white blood cell count and the doctors don't like that. They can't find any real source of infection and he doesn't have a fever or anything like that. So, they are suspicious that Caden is having reflux up into the esophagus and then down into the lungs. If that was the case, there could be bacteria in his lungs causing infection and a high white blood cell count. So, they are planning on having a reflux study done on him where they put in a small probe down into his stomach and then monitor his feedings to see where the food goes and how it travels through the system. This is done over a 24-hour period and then the probe is removed. They only decided they wanted to do this Thursday night. So, on Friday when they went to order it, they discovered it isn't done on weekends because the technician isn't available on Saturday to remove the probe. So we have to wait until Monday.

In the meantime, because they have to wait anyway, they want to change the feeding tube that goes into his stomach to one that goes past the stomach. They are hoping to bypass any possible reflux issues and see if his lungs improve at all and if the white blood cell count goes down. When they put the NJ tube in, his feedings will go back to a continuous feed instead of a bolus feed. But for the reflux study, they will have to return him to the bolus feeds so they can see how the food moves through his body during a feeding. So we just have to wait until Monday and Tuesday to see what happens with that. Friday afternoon/evening, they were trying to get the feeding tube in the right place and were having trouble with it. They had tried three times and so far it hadn't gotten past the stomach like it needed to. The poor baby was starving because his last bolus feed was at 12:30 pm and he hadn't had any food by 9:30 pm. They ended up hanging a bag of fluids so at least he wouldn't get dehydrated. But it's not the same as getting nourishment. I hope they got it resolved after we left tonight.

Also on Thursday, the OT came to work with Caden on sucking some more. He's been doing fantastic with his pacifier and really likes it now. But she wanted to test him to see if he would swallow milk from a bottle. She thickened up the breast milk with a gel and put it in a very slow flow nipple and he actually drank some of it. Because of the concern of aspiration, she only let him drink a few mls of it. But it's a start and it's good to know he can do it when the time comes. However, based on all we know right now, we really think Caden will come home with a feeding tube and it will be awhile before he is really able to eat by mouth. We'll see... maybe he'll surprise us and his vocal cord will recover quickly. But he is taking his time with everything else, so we'll see.

The x-rays taken today show improvement in the fluid level in the left lung so that is good. The right lung has also been improving with volume The chest PT they've been doing as well as the lasix seem to be making a difference for him and that is a good thing.

Thursday night when I went to the hospital after shift change, I noticed that Caden's arterial line had really been leaking and his bandages were completely soaked with blood. I pointed this out to the nurse who called the doctor over to look. After some debate between the doctor and two nurses, they decided to change the dressings and try to “save the line” because they use it for all their lab draws. Because they're not doing the frequent blood-gases that they were doing, the doctor was less concerned about losing the line. But he was still scheduled for daily lab work. So, the doctor said to change out the dressings and they would reevaluate on Friday morning. When I came in Friday morning, it had definitely been bleeding but it wasn't nearly as bad as it had been the night before. But the doctor did bring it up during rounds and they decided it needed to be removed. And, they also decided to reduce the daily lab work to only two times/week so he won't need to be poked very often.

The nurse also removed another one of his lines so he is looking almost “normal”. Well, he still has more tubes and wires than a normal baby, but it sure is a far cry from where we were. I still can't get any of the doctors to tell me how much longer they expect to keep us in the CVICU. We are anxious to move to another unit because we feel it is a milestone and means we're just one step closer to going home. One doctor told me there was a difference of opinion between some of the doctors. She said some of them felt Caden was stable enough to move to another unit, and others felt he should remain in CVICU for closer monitoring. I guess right now the ones who want to keep him in CVICU are winning. In talking to a couple of the nurses, they seem to think he would be fine to go to another unit and are surprised he is still there. But what can we do? The doctors are the ones making the call and no matter how much we ask when we're moving out, they won't commit to anything. At this point, we know it won't be before Tuesday because that is when the reflux study will be over.

Caden had a big milestone today: he turned 5 weeks old. And, because his arterial line was removed (the dressing was HUGE), his arm was more free and I was able to put him in clothes for the first time. It's strange because he hasn't worn anything but blankets since the day he was born. He looks absolutely adorable and it makes it seem like he's just like all the other healthy babies because you can't see the stitches and incision down his chest and all the tubes and wires on his body. You can still see the two tubes in his nose, but they almost seem less noticeable when he's wearing clothes. Anyway, it was a milestone for us and it was fun. We will see what tomorrow holds.

Slight Setback

Today, Caden had a slight setback. Over the last couple days, his respiration rate has been on the high side. And, last night his lungs sounded a little course, so they ordered another x-ray (he gets them regularly every morning). His left lung appears to have pulmonary edema, meaning it has fluid in it. And, the right lung (the one affected by the diaphragm eventration) was slightly more compressed than it had been the day before. So, based on these things, the doctors decided he needed to spend a couple more days in CVICU until they could get him to be more consistent for a couple days. They increased his Lasix in order to dry out his lung. And, they started him with chest PT in order to help expand the right lung, in addition to increasing the volume of air flow into his nasal cannula. He is perfectly comfortable and the rest of his vitals look good. The doctors just aren't comfortable with what they are seeing on the x-rays. They had another ultrasound done in order to determine if there was fluid in the chest cavity. Thankfully that came back clean and there is no fluid there. So now they are just trying to resolve the other issues.

However, on the flip side, Caden's third day of OT was very successful. The last two days, if the OT put anything in his mouth he would just gag on it: her finger, the pacifier, etc. He would gag, choke and throw up. Last night when I was holding him, he was mostly sleeping but fussing a little bit and I was able to put the pacifier in his mouth and he started sucking it willingly. So that was good. Also, overnight, they changed his bolus feeds from 35 ml every 2 hours, to 50 ml every 3 hours. I think this change is helping him get hungrier between feedings also which is good. When the OT came to work with Caden this morning, she started by putting her finger in his mouth and he would suck on it. Then she would dip her finger in breast milk and put that in to see if he would suck on that and he would. So she started dipping the pacifier in milk and putting that in his mouth. He would suck on that so she followed that up by using a syringe to squirt milk in alongside the pacifier to help him initiate the suck, swallow, breathe sequence. He did okay with it, but not great. However, it was a HUGE success for him to be sucking the pacifier today. I was so excited about it because it means we're that much closer to feeding by mouth. Of course he still doesn't have a voice, so there is still the concern of aspiration. But the OT said she might try to do some bottle feeding tomorrow, but she would see how he did. Caden did really well the rest of the day today willingly taking the pacifier and sucking without gagging. So I am very happy about that.

The doctors are still concerned about making sure Caden is getting a lot of calories because they want to get him “big and beefy” (their words, not mine). So, they are adding some formula to the breastmilk to increase the calories. And, as of today, they are adding a couple mls of oil to increase them as well. I can't remember what it's called. But they don't want to increase the amount of fluids he is taking in because of the fluid in the lung. So, instead of doing that, they are increasing the calories in other ways.

This afternoon they took another x-ray to see if there was any change in Caden's lungs. It showed that the left lung looked even more wet but the right lung looked like it was more expanded. So, some good, some bad. We're just hoping he balances out quickly so we can get moved out of this unit. Not that we aren't happy with the people there, we just know that once he's well enough to leave CVICU, it means we are one step closer to going home and that is our goal!

Another day in CVICU

Another day passes and Caden is still in CVICU. It doesn't look like they are going to move him out of the unit all too soon. They will need to take the last line out of his chest before they will move him and they haven't done it yet. Dr. Reddy said he wanted Caden to have two peripheral IV's before they remove the one from the chest.

The OT worked with Caden again today and he is still having trouble gagging when anything is put in his mouth. She thinks it's going to take some time before he's ready for food by mouth. Also, the fact that his vocal cords still don't appear to be working is another concern. The biggest problem is the possibility of aspirating some of the fluids as they go down, or if he spits them up, it could get aspirated that way as well. He had a little bit of that today when he spit up and seemed to have trouble getting it all cleared from his mouth and throat. Based on all they are seeing, they are going to have an ENT come and evaluate Caden's vocal cords and see what they are doing, or not doing as it may be. And when the doctor examined him around lunchtime, he was a little raspy in the lungs so they took an x-ray. His lungs looked a little hazier than yesterday so they have some concerns about that.

One really nice thing is that the lactation consultant arranged for me to have one of the hospital breast pumps at Caden's bed. So, now I can pump by his bedside instead of having to leave him so often during the day in order to go pump. This is wonderful because it enables me to spend time with my baby while I pump. In the CVICU, there is room for me to do this. However, in the NICU that wasn't really an option. And, if Caden gets moved up to the third floor, I will be able to take the pump with me. But if he moves back to NICU, I won't. For now, it is really nice to be able to sit by his bed and pump.

The other thing they did Tuesday was weigh him – finally. I have been trying to get them to do that since they extubated him last Thursday. So, as of today, he weighed 6 lb, 9 oz. This is 2 ounces more than his birth weight, so that is good. I'm really surprised it was that much. I figured he would have dropped down into the 5 pound range. I guess the TPN and lipids at least helped him maintain his weight although going into surgery he weighed 6 lb, 11 oz so he's down a bit from a couple weeks ago. They are supposed to weigh him every day now so we will be able to track his weight gain.

Last night, Caden got moved to yet another room. This is his fourth home in the CVICU unit alone, not to count the two places he had in NICU. He's just moved around a lot.

One Month Birthday!

It's almost impossible to believe that Monday was Caden's one month birthday. It honestly feels like we are in some sort of time warp here. In a lot of ways it feels like time has been speeding by and our baby is growing up before our eyes. But on the other hand, if feels like we have been here forever and we are never going home. It's sad to think that for more than half of Caden's life, we were unable to even hold him.

Not too much changed for Caden yesterday. The doctors stopped the antibiotics he had been on since his emergency chest opening on January 28. But otherwise, medication stayed the same except for Lasix being given less often. They also ordered an ultrasound of the diaphragm to make sure it was moving properly and to see if there was any fluid around it.

Caden had a big day with appointments. Mid-morning, occupational therapy came and tried to assess his ability to suck and eat from a bottle. Although he had been sucking on his pacifier really well last Thursday and Friday, over the weekend, he developed a pretty strong gag reflex when it, or anything else, was put in his mouth. When th OT used her finger to try to get him to suck, he ended up gagging on that also. So, when she put a little milk in a syringe and pushed it to the back of his throat at the same time as the pacifier was in his mouth, he gagged and ended up throwing up a little. Most of the spit up was mucus and a little bit of milk from his last feeding. The OT decided Caden wasn't ready for bottle feeding yet. She outlined a “pre-feeding” plan for him in order to get him “de-sensitized” orally so he would be willing to suck. She said it really varies greatly between children as to how quickly they get that suck reflex back. Some kids get it back almost immediately and others struggle for a longer period of time. So if Caden follows his trend, he will probably take awhile to catch onto this concept and start to be able to eat by mouth.

The bolus feeds are going better than they were on Sunday. They started giving him 35 ml of milk over a half hour period, every two hours. But, he was having some spit up with each feed so they expanded the time frame of the feed to an hour. As he tolerated that well, they reduced the time to 45 minutes. In the morning on Monday, he was at a 45-minute feed. But, during the day, the nurse was able to reduce the time to 30 minutes and he handled it well. She thought his main issue with the spitting up had to do with mucus build-up more than his stomach not tolerating the milk. I think that is good because it seems like the mucus problem is more easily resolved than not tolerating milk.

A little while after OT left, the physical therapist came to work with Caden as well. She talked with me a lot about the importance of giving Caden positive touch. She said so much of the touch he gets is negative when the doctors or nurses come and poke and prod him and he starts to associate pain or discomfort with each encounter. So she talked about us needing to just touch him as much as possible while we were with him. This is something I think Greg and I have done a pretty good job of doing already. From the time he was in NICU, we have tried to touch him as much as possible, even if we couldn't hold him. We hold his hand, stroke his arms or legs or chest, or touch his head. We will try to be even more intentional about touching him so we can create some positive associations with touch. Now that we are able to hold him again, hopefully that will help. The other thing the PT talked about was working with him on opening up his arms from the tightly clenched position in order to keep him from getting too tight. His arms were clenched pretty tight, but he was more willing to let us stretch his legs out. As he matures a little bit, the clenching reflex in his arms should reduce also.

Once PT was done, the nurse helped me hold Caden again. It was wonderful! I held him for awhile and then traded places with Greg so he could hold him also. When he took over, I went and ate. Shortly after I came back, the ultrasound tech came to do the scan of Caden's diaphragm so Greg had to give him up. During the ultrasound, the tech said the diaphragm was moving pretty well but she had the radiologist to come and look at the images with her to make sure the images were what she wanted to see. When the radiologist came, she watched the screen for a few minutes and said the right side of the diaphragm where they did the eventration repair was looking pretty good. It was moving well but not quite as much as the left side but that was to be expected. She said the good thing is that it was moving and it was moving in the right direction (as opposed to pushing down). And, there wasn't any fluid around the diaphragm so that was good as well. We were glad to know the repair was still looking good.

The nurse tried a couple more times during the day to turn off his oxygen and his saturation immediately started dropping. So, for now, he is remaining with the oxygen on. I held Caden again for quite awhile after shift change and during that time, he was awake for a lot of it. So I worked with him on getting used to the pacifier in his mouth. He tolerated it pretty well but he didn't really suck on it. It would just sit in his mouth or he would chew on it. I guess this is normal for a baby who's been intubated for awhile. But the OT just wants us to continue to work on getting him used to the pacifier in his mouth and having positive associations with something in his mouth.

I am so happy I get to hold Caden again. I think it will help our bonding. I am also looking forward to the day when the last two lines come out so that it will be easier to hold him and not be quite as much of an effort. We're getting closer to that day, but we're not quite there yet.

Sunday, February 8

Caden started on bolus feeds yesterday. This just means that instead of receiving a continuous drip feeding through his tube, he now gets feedings every two hours for about 30 minutes at a time. This will help him get on a better feeding pattern and will help him transition to bottle feeds. They haven't weighed him since he had surgery so we have no idea how much he weighs right now. They said they're not as worried about it in CVICU as they are in NICU so they don't typically weigh the babies. But they are really wanting him to put on weight, so they are adding a small amount of formula to the breast milk he is receiving in order to add more calories. They are doing this instead of simply giving him a larger volume of breast milk because they only want him to have a certain amount of fluid input during the day and this is the easiest way to accomplish that.

They also adjusted his oxygen rate up to 100% and lowered his rate from 1 liter to .25 liter. They said wth the nasal cannula, if they're at 100% oxygen, they are really only getting about 30-40% through the tube. And, 21% is room oxygen level. So, they are working toward weaning him off it soon, maybe tomorrow, depending on how things go. Last night they tested him to see how he would handle taking it off completely and his oxygen saturation dropped right away. Not a huge drop, but enough of one that they didn't want him staying at that level.

Caden's voice still isn't back. We talked to one of the cardiologists last night and he said it is very likely that he is experiencing vocal cord paralysis. I guess this is very common with coarc repairs because the nerve associated with the vocal cords runs right through the area where they do the repair and it often gets stretched or nicked, causing paralysis. He said most of the time this is temporary and the voice will come back, but it can take up to several weeks, it all just depends on the child. And we know Caden takes things at his own pace.

Saturday, February 7

Overnight, Caden's blood pressure steadily began rising. By this afternoon, they had decided to give him some medication to lower it. Based on how he responded, they would decide if they would give it to him regularly or not. If they start regular doses, it is probably something he is going to end up being on for a couple months, even after discharge.

They lowered his oxygen rate to 30% and reduced the flow to 1 liter (down from 2 liters). He seemed to be handling that fine. So, they were planning on dropping it again later with the hope of weaning him off soon. His feedings had been going well. He was up to 17 mls/hour through the tube. However, he threw up some late morning, so they discontinued his feeds for a little while. When they started him back up, they put him back down to 15 mls/hour to see how he would tolerate that. So far, that was still going okay.

He has very few lines left. He still has a central line and an arterial line. The arterial line is starting to leak quite a bit, but they don't like to change the dressings or remove it before he's completely off the oxygen because they use it to pull the blood-gas easily. Once the arterial line is gone, they will have to poke him every time they needed to draw blood.

Caden's voice still hasn't come back. We've been asking the doctors about it, but they kept saying it was normal and not to worry about it. But this morning one of the nurse practitioners told me they were “very concerned” about his voice not being back yet. It's hard for me to know what is normal or not. But the fact that they had extubated and re-intubated last week certainly seems like it would have caused more trauma to the vocal chords. And, because he coded and they had to do CPR, it meant he had a lot more compressions on that area as well which could be contributing to it. Today, when he tried to cry, we could hear little noises, not much of a squeak, but more than yesterday. And, we can hear him when he coughs. So, hopefully his vocal chords will recover and he will be able to speak normally.

As the attending physician told Greg this morning, “the big picture” looks really good. It's just a matter of fine-tuning little things with Caden in order to get him well enough to move him out of CVICU and eventually home. Who knows how long that will take.

Another Good Day

Caden continued to do well all Thursday afternoon and throughout the night. His biggest challenge right now is the fact that his vocal chords are not working properly and he can't make any noise when he cries. It's so pathetic to watch him soundlessly cry. The doctors think it's just temporary and it will come back soon, just a result of having the ventilator tube down for so long.

His potassium levels were too high, so they stopped the TPN they were giving him. The TPN had additional potassium added to it because when he was on the lasix drip, it caused the body to lose a lot of potassium. But now that he's not on a lasix drip, he has too much of it. So now he is just receiving breast milk (via tube through the nose) and lipids.

The physical therapist came by Friday afternoon and went over a few things with me in regards to positioning and handling of a baby with a sternonomy. It will certainly be an adjustment when we take him home. It's not like being able to take care of a healthy newborn, more precautions are necessary. She also talked to our nurse and arranged for her to help me hold him in the afternoon. It was about a 10 minute ordeal to get him ready and moved into my lap, but it was wonderful! I got to hold him for about 20 minutes before a technician came in to do an echo. I was so excited to hold him again since it has been almost two weeks since I held him last. Then, after shift change, the night nurse helped Greg hold him for awhile also. I think it's going to take Caden some time to get used to it again. For one thing, he hasn't been held in awhile so it probably feels strange to him. And, I'm sure he has more discomfort with being moved around. Every once in awhile, he will cough or sneeze and that makes him cry. I feel so bad for him. But overall, he seems to be doing okay. Not a lot of secretions coming out so that is good.

Caden was moved into a new room in the CVICU during the afternoon also. Now that he is off the ventilator, he doesn't need one-on-one care so in the afternoon he had a nurse with two patients. But shortly after he moved into that room, the patient he was paired with was transferred to a different floor and was replaced by a baby coming out of surgery. So because the other baby needed one-on-one care, Caden ended up with his own nurse again. If they pair two patients with one nurse, they must be immediately next to each other and by virtue of where the beds were located, he couldn't be paired with another baby. He seems to be happy to have the tube out, but has a hard time settling down to sleep much. We started giving him a pacifier on Thursday and he took right to it. He sucks on it like there is no tomorrow. We are happy he is willing to take a pacifier because it shows he is still able to suck. Hopefully this will help when we are finally able to start feeding by mouth. We'll see. We're told it is common for babies to have oral aversions due to having a tube for so long. So the fact that he takes a pacifier could be a good sign. We won't know until we can begin feedings by mouth. Could be a couple more days before this happens though.

We're not sure how much longer Caden will remain in the CVICU. The doctors haven't said anything about moving him to another unit. But the nurse last night said it is usually not long after being extubated. However, she said they usually keep patients who have coded a little longer just to monitor them and be more comfortable about their readiness to move. Of course, as we have learned, things change quickly and we could arrive tomorrow only to be told he is moving.

Extubation Day

Today was the planned day for extubation. We missed doctor rounds this morning as they came by a little earlier than usual. But they did say they were still planning on extubating today. He had been sprinting again since 7 am and was doing well with it. The nurses changed all his dressings and got everything ready for extubation. In the meantime, one of the surgeons came in and took out the RA line which was put in during surgery and went directly into his heart. That came out without difficulty and no bleeding.

Then when they were ready to extubate him, they decided to put him on high-flow oxygen instead of CPAP and see how he handled it. They took the tube out and suctioned him and put the high-flow on and he did really well. After the initial increase in blood pressure and heart rate, he settled down and went to sleep. He would wake up occasionally and try to cry a little bit, but overall handled it quite well and was breathing well. The blood-gas they took after he'd been off the ventilator for half an hour was down from the last time it was checked so that was good news. They will take a chest x-ray around 3 pm to see how the lungs look at that point. But all indicators show that he is doing well and they should be able to leave him off the ventilator. We are so grateful!

The nurses said they would probably be able to move him into another room later today or tomorrow, depending on space. But the other two rooms they have are more quiet and also less brightly lit which is easier on the babies. And, hopefully he will get the remainder of the tubes out and we can hold him again soon. It's a good day! We are so happy with the progress he has made in the last three days. What a fighter Caden is. Thank you for your prayers.

Wednesday, February 4

When we got to the hospital this morning, Caden's nurse told us they had decided not to extubate him today because Dr. Reddy really didn't want it done yet. We are happy about that because we don't want him pushed faster than he is ready. They did wean him down on the nitric oxide overnight and this morning they took him off it completely. They are giving him another medication to keep the blood vessels open.

During the night they stopped his feeds because he threw up some of what they had been giving him. They didn't think it was anything to be concerned about because babies will often spit up food. But for the meantime, they put him back on TPN and will hold off on feeds for now.

In rounds the doctors decided to reduce his ventilator rate to zero and mimic a CPAP environment (which they refer to as sprinting) to see how he handled it. They started him on it mid morning and he tolerated it quite well. They even removed a drainage tube from his abdomen and suctioned him during the first hour he was on it and he still did okay. His blood-gas after he'd been on it for over an hour was pretty good. They left him in sprinting mode for about three hours before giving him a little more assistance to give him a break. Then, around 5 pm, they put him back on the sprinting mode. He seemed to tolerate it pretty well and his blood-gas afterward was good enough. I guess they're planning on having him do another sprint in the morning.

We talked to the doctors about the amount of secretions he is having and asking how he would get those out once he is extubated. It sounds like they feel the risk of leaving the tube in is greater than the risks of taking it out. They said the tube itself can create some of the mucus in the lungs and once it is out the secretions would probably be less. They also said he would be able to cough them up himself and if he needed assistance they would be able to help suction. When we asked about how much pain he might have from coughing after having his chest cut open, they said that studies in adults show that after day five after surgery, the pain is significantly reduced. So, that would mean tomorrow is five days after his chest closure. It's so hard to know what is best sometimes. Greg and I don't have medical backgrounds but are doing our best to advocate for Caden based on what seems logical to us and from what we learn from the medical staff. We try to ask lots of questions and try to be present during rounds so we can hear the discussions between the doctors in regards to Caden's treatment plan. It also sounds like the amount of secretions they are getting out have significantly decreased in the last day or two so they don't think it should be too much of a problem.

This evening the plan as we know it is to give Caden a couple steroid shots during the night to prepare him for extubation tomorrow morning. Both yesterday and today were very good days of progress for him and we are optimistic about tomorrow. Of course we'll keep you all posted.

Tuesday, February 3

This morning Caden made lots of forward progress. At shift change, the nurses removed both his chest tubes. The doctors didn't think there was much drainage coming from them so decided it was time for them to come out. They left the tube in the abdomen for now though.

During doctor rounds they decided to remove his catheter, his rectal temperature probe and his PICC line. His white blood cell count has been a little high and they want to remove any infection risks they can by taking out lines that are not necessary. With the removal of the PICC line, they had to adjust where they ran the remaining medications through. They stopped one of the pain medications as well. So, he is currently only on one pain medication, potassium, lasix, lipids, TPN and breast milk. That is a much reduced number of lines than he did have, so we are happy about that.

He was much more awake today and looking around. It's so nice to see him in this state again as opposed to being paralyzed with no movement or awareness. They are still trying to suction him regularly in order to get all the mucus out of his lungs. The nurses both in CVICU and NICU have all commented that he seems to handle all the tubes and everything very well. They say he is very mild. That would be nice since Kyler is very intense. It would be great to have a baby with a more mild temperament but we will love him regardless.

My mom's cousin came over to visit today. It was really nice for us to see her and it gave her and my mom a chance to catch up as well. It is always nice for us to see friends and family here since we are so isolated from most of them. She took us out to lunch which was a treat.

Overall, it was a good day for Caden and that relieves a lot of stress for us. They increased the amount of breast milk he was getting all day long. But they are planning on trying to extubate tomorrow so they will discontinue the feeds a few hours prior to doing that. Hopefully it goes smoothly and he will be able to tolerate it better than last time.

When we were at the hospital tonight after shift change, we saw Dr. Reddy and he talked to us briefly. He said he really felt they shouldn't try to extubate before Thursday because Caden had been paralyzed for so many days. He wanted him to have the rest he needed and allow his lungs to do a lot of the work on their own, not all controlled by the ventilator. So we'll see what happens.

Monday, February 2

Caden had another decent day of small steps of progress forward. During morning doctor rounds, they discontinued one of the blood pressure medications, reduced his nitric oxide and lowered his ventilator rates. They told us they were happy with how he was doing and were going to start feeding him breast milk through the tube in his nose. Yeah1 Finally! They were also giving him some blood because his red blood cell count was a little low. The drainage in his chest tubes and the tube in his abdomen were all putting out very little so they suggested the surgeons might be ready to remove the one in the abdomen.

It was nice to see the nurses turning Caden and repositioning him today. They had stopped doing that after he coded on Wednesday because he had his chest open and they wanted to make sure not to trigger another event. But, now that his chest was closed and had been for a couple days, they were moving him a little bit more. I was starting to worry about his head being in the same position for so long because I thought he would get some pressure sores. At first, Caden really resisted having his head and/or body turned toward the left. But by evening, he was tolerating it more. Now that he is able to move his muscles, he would turn his head slightly back to the right anytime the nurses tried to turn him the other direction.

After shift change, the nurse and respiratory therapist were suctioning him through his tube. They had been doing this fairly aggressively throughout the day in order to clear out all the mucus in the lungs. They had gotten some pretty significant plugs out and could still hear more. As they suctioned him, his oxygen saturation started to go down. This made them stop and the RT suggested they turn him. I said that is what happened right before he coded last week. So, they decided to leave him in his current position and watch his vitals for a few minutes. The RT hand bagged him briefly and his saturation went up. But once he stopped, it started dropping again. It wasn't dropping rapidly and his heart rate and blood pressure were remaining fine, but after about five minutes, the nurse called the doctor in and had her take a look. She ended up adjusting his ventilator settings up just a tiny bit in order to help give him a little more support. Because he was starting to take his own breaths, not just those given by the ventilator, they wanted to make sure those breaths were good and there volume were a little bigger.

The doctor assured us Caden was fine and that we weren't going to repeat the events of last Wednesday. This was my biggest fear because the same series of events took place prior to his pulmonary hyptertensive crisis. He was suctioned, and repositioned and he couldn't handle it. Last night turned out differently and we are grateful. We left after we felt comfortable he was stable. The attending physician on duty this week told us during evening rounds that they wouldn't try to extubate before Wednesday. We were glad to hear that because that would be four days after chest closure and Dr. Reddy said he thought it would be best to let his lungs rest for four-five days before trying to extubate. So, it looked like they were going to wait at least until Wednesday. Now let's just hope they don't change their mind. Greg and I also talked to them about the ventilator settings and asked if it was possible to set it to simulate being on CPAP or even just breathing room air before they tried to remove the tube. They said they could do that and is usually what they do anyway. I don't believe they did this before they tried to extubate last week, but I could be wrong. We will make sure that they do follow this procedure this time before they take the tube out only have to put it back in again. We don't want that to happen a second time!

Every day we keep praying for another smooth, quiet day without any excitement. So far, so good. Prayers are being answered!

My Birthday

Yesterday was a good birthday for me. A friend of ours from Adventist Health came over in the morning and brought such a wonderful supply of goodies, so sweet! My mom took us out to a nice lunch followed by Haagen Dazs for dessert. Overall it was a good day.

The best part of the day for me was the improvements Caden made. Saturday night they stopped his paralytic medication but it took almost 24 hours for that to start to work it's way out of his body. So it was Sunday night before he started to move or wake up. But it was so nice to see him start to wiggle his toes, feet, legs, hands and face. He would even try to open his eyes when we talked to him. But as the paralytic wore off, they were giving him more morphine in order to make sure he wasn't in pain. It was great to see some more movement from him after days of him being paralyzed.

Sunday evening they took him off the epinephrin which he had been on since he coded on Wednesday. It was just to help give his heart the additional squeeze that it needed. But he was doing so well, they had been weaning him off of it all day and he tolerated it quite well. So, once he was completely off of it, he had done okay. And throughout the day, they had been lowering the rates and amount of oxygen he received from the ventilator. Of course they continue to do blood-gas levels to make sure all the numbers still looked good. When we left later in the evening, they were pretty happy with how he was doing. The doctor told us it was possible that either Monday or Tuesday the cardiac surgeons might decide to take out the tube draining the abdomen or one of the chest tubes. He said the output from the tubes was so small that they didn't seem to be needed much anymore. And, once that happens they become more of an infection risk so they can think about taking them out. But it is the surgery team that makes the decision when those come out.

We are so happy for Caden's progress yesterday. He was tolerating many small changes to various medications and ventilator settings which is great! We are so grateful for the baby steps forward. That is all we are asking for right now. We will see what the doctors have to say tomorrow, but for now, everything looks pretty good.

Saturday, January 31

As always, there was a change of plans in regards to closing Caden's chest. When Greg went to the hospital late morning, Caden's nurse informed him that they were going to close his chest that day. Greg called me to let me know so that I could get over to see Caden before they did it. The nurse said they were going to do it between two other surgeries so they weren't exactly sure of the time. When I got there, she told me they had just gotten word that they were going to wait and do it after the second surgery. And, then it was possible that they still might wait until Sunday but she promised to call me when they were ready to do it.

At lunchtime, our good friends, Ryan & Suzanne and their children as well as Suzanne's parents and sister all came to visit for my birthday. We had a nice lunch with some good cake. In addition, our church sent me some delicious Shari's Berries (fancy chocolate dipped strawberries) and a beautiful bouquet of flowers.

In the afternoon I took Suzanne and her mom over to the hospital to see Caden. The nurse said she thought they would be doing the chest closure in another couple hours and said she would call me before they started. Not too long after returning to the Ronald McDonald House, the nurse called to let me know they were going to be starting the procedure in about 30-45 minutes. So, I went back over to the hospital but by the time I got there, they had already started. They turn the CVICU room into an operating room and close it all off instead of taking Caden to the OR. So I waited at the hospital until it was over. The nurse called me and put Dr. Reddy on the phone.

Dr. Reddy told me the chest closure went well and that Caden's vitals had stayed the same when they held the chest together. We were told they would hold the chest together for a few minutes to see how his body responded to the additional pressure. Apparently he handled it well because then they stitched him closed. We had been warned ahead of time that after closing the chest, he might deteriorate slightly and they expected that and were ready for it. But they expected him to recover from the initial setback fairly quickly. Dr. Reddy also told me that during the code on Wednesday, Caden's good lung had taken a bit of a beating and therefore wasn't as “pristine” as it had been prior to that. So, because of that, they were planning on letting him rest and recover for the next four-five days before even thinking about extubating. In the meantime, they would wean the ventilator rates down and work toward that goal, but they wouldn't push him too much.

After surgery today, Greg and I got to go in to see Caden for about five minutes before shift change and they kicked us out. We are so glad everything went smoothly and hope it continues to do so. Later in the evening, we went back and spent some more time with Caden before finally coming back to RMH and falling asleep from exhaustion. Thank you to all you prayer warriors who are fighting for our son. There are more people than we know praying for him and we are so appreciative. We'll keep you posted on his progress today. Hopefully he's taking some baby steps forward.