Heart Catheterization

Today has been a long day! I am not a morning person and I had to be up at 4:30 in order to be ready to leave the house at 5 am to get Caden to UC Davis Medical Center for his heart catheterization. I had gotten up several times during the night in order to give him as much food as possible before he wasn't allowed to eat anymore. So I was really tired this morning!

We got to the hospital a little before 5:30. This was our first time at this hospital and didn't really know what to expect. It is certainly a different experience than the other facilities we have been in. You can tell from the admitting process that this is definitely a county hospital. But once we were up on the floor and waiting for Caden's cath, it was a totally different environment and was great.

We were brought to the 7th floor and put in a quiet room at the end of the hall on the unit. The nurse tried once to get an IV and when she was unsuccessful, she said the anesthesiologists could do it in the cath lab. I was grateful she didn't poke him again. Thankfully, Caden took a nap before his procedure which gave me and Greg a chance to eat our breakfast. And the poor baby was so tired from getting up so early.

A little before 8:30, the nurses from the cath lab came and took us all downstairs for the procedure. We met the anesthesiologists and talked to them before they took Caden in the room. Then they put us in a small waiting room until they were done with the cath. Right around 11 am, Dr. Van Gundy came in to talk to us and give us the update. Everything went smoothly. He was looking at two things primarily: checking the anatomy and verifying the pulmonary pressures. He said the anatomy looked good and there were no problems there. As for the pulmonary pressures, he said they were slightly elevated. Normal is less than 30, and his were between 40-45. So he does have pulmonary hypertension. During the cath, he did a test to see if treatment helped the pressures and they did not. So, at this point, the only thing we can do is wait, there are no treatments to help him. We just have to wait for Caden to grow and get bigger because the lung tissue continues to grow and develop until around the age of 7 or 8. But at least he won't have to be on any medication for it anymore.

After talking to Dr. Van Gundy, we waited a few more minutes for a nurse to come and take us to see Caden in the recovery room. That place was a zoo! It was crowded and noisy. There was a small baby screaming nonstop for almost an hour. Not fun. It was also frustrating because Caden's nurse really didn't seem to understand about his conditions. We asked her when we could feed him and she was talking about that he needed to be fully awake and in a more upright position, etc. I told her he was fed exclusively through his feeding tube and that shouldn't be an issue. She finally agreed to let me feed him and then was blown away when I pulled out the portable feeding pump and milk. She told me I had to do clear liquids first to see if that would cause him to throw up. I told her he couldn't throw up due to the Nissen in his stomach. She didn't know what to do with that information. Anyway, we survived our two hours in recovery and were sent back to the floor to hang out until Dr. Van Gundy thought we were “safe” to go home. We are pretty much on our own in the room on 7th floor. The nurse has come in a couple times to check on us during our time here. We are still waiting on discharge. Apparently Dr. Van Gundy isn't near a computer where he can input the discharge orders. So we wait... :(

Caden has done amazingly well today. He has been extremely mellow and laid back through the whole experience. That has made it way less stressful on me which was nice. The nurses were all talking about how easy he was and how adorable. Of course we think he's sweet and adorable, but it's always nice when someone else tells us that too. :) We are so blessed to have such a good-natured baby who has handled everything he has been through so well. God is good! Thank you for your continued prayers, love and support.

Here are some photos of our day:

Caden in the car on our way to the hospital (just a little sleepy)

Daytime nurse Kelly

Transport nurse

Transport nurse

A drugged Caden (Benadryl & Versed) with Anesthesia Fellow

In recovery

Caden with Greg in recovery

Sleeping in his room on 7th floor

Caden's room on 7th floor

Dr. Van Gundy with Caden in the afternoon

Kyler's week with Grandma & Grandpa McCulloch

Kyler spent July 11 - 19 with Greg's parents in Oregon. They took him to campmeeting in Portland and did lots of fun things with him. He had a blast. Here are some photos of their week.

Endoscopy, Bronchoscopy and PH Probe

Today was a bit stressful on me as we took Caden in to Sutter Memorial Hospital to have a bronchoscopy, endoscopy (upper GI) and ph probe. We arrived at 6 am and they started preparing him and us for the procedure at 8. When I spoke with one of the nurses earlier in the week I told them I wanted the best person available to do his IV because he is a hard stick. We learned while at Stanford to advocate and make sure we had the best person doing it because he is so hard to get a line in. That was one of my biggest concerns today was worrying about him being a pin cushion while they tried to get the IV in. I told our nurse this morning that we wanted the best person and she said that she was the best which must be why they assigned her to Caden. She spent quite a bit of time looking for good veins and found three options. The first one she got right in but it wouldn't go in far enough; she thought it was being blocked by scar tissue or a valve in the vein. Either way, it wouldn't work. Caden was screaming the whole time. She had to poke him a second time but hankfully it went in and worked great. He only had to be poked twice, I just wish it was only once.

Caden did so well waiting for his tests. Aside from screaming during the needle sticks, he was very content and happy. He played with some toys and was in a good mood. I am so grateful for that! Almost exactly at 8 am, they came to get Caden for his procedure. They allowed me to carry him into the room and hold him while they got everything in place. Then I laid him on the table and he was out really quickly. It was so sad to see. The sedation they use works really fast. As soon as he was asleep, we left the room and went back to the patient room to wait.

Dr. Davies, Caden's GI doctor, came in pretty soon to give us her update. The endoscopy (upper GI scope) showed the Nissen fundoplication was still intact (I almost wish it wasn't!) and didn't appear to be too tight. She thought this might be part of the problem contributing to his retching but after looking at it she didn't think it was. The placement and location of the g-tube balloon (the balloon of water which holds the feeding tube in place) looked good also and didn't seem to be causing any irritation anywhere in the stomach or esophagus. So, still no real answers as to what causing all the retching. She took cultures from several places and will let us know when she gets the results from those tests.

They placed the ph probe during this time as well. The ph probe is a tube that goes in through the nose and down the back of the throat down into the esophagus. It stays in for 24 hours and monitors to see if there is any gastroesophageal reflux. It is attached to a small machine that records all the data. It has several buttons on it which I am supposed to use when he starts sleeping, stops sleeping, starts a feeding, stops a feeding, receives medication, retches, is irritable/fussy, or any other event. In addition, I have a “journal” in which I have to record all the same information and add comments about them. And, I need to write comments next to any of these to clarify what was going on at that time. This helps clarify the results of the ph probe when they look at the data if they can see what was going on in that time frame so it helps them understand how his body is acting. It's kind of a pain because he's attached to this thing at all times and because he has the tube in his nose, we have to keep his hands away from his face. In order to accomplish this, we had to put “No-Nos” on his arms in order to keep them straight and unable to touch his face or grab the tube. Let me just say he HATES them! He loves to sleep on his side and because of the no-nos, it is really hard to get in that position. It's very sad!

The last thing he had done was the bronchoscopy which was done by Dr. Perez, the pulmonologist. She looked at the vocal cords first. The left cord (the one which had been paralyzed during the repair of the coarctation) is now fully functioning. That is good news. However the bad news is that although the cords come together in the middle like they are supposed to, the right cord has a “cleft” in it. A small notch which leaves a hole in the middle of the cords when they are together. This means he is not fully protecting his airway and could cause more problems with eating. It could also influence how loud or clearly he can talk. Right now he has a cute little raspy voice and this is probably why. He might not ever be able to have a strong voice but at this point we just don't know. Dr. Perez said the cleft in the right cord is likely damage from the ventilator tube. Bummer!

She also saw a couple more things of concern. The trachea which should normally be c-shaped, was more flat, a condition called tracheomalacia. He also had unusually large adenoids and tonsils which could be because of the cold he is just getting over or it's possible something more is going on. There are also a couple granulomas below the vocal cords. Dr. Perez thought this was most likely scar tissue from the ventilator tube and said they were small and probably wouldn't cause a problem. She took cultures from several places and we should have those results in a couple weeks. Anyway, now we have a few new issues to worry about.

Caden had a hard time coming off the sedative. He was really irritable which they said is common. And, since he had the no-nos on his arms, he couldn't get into his favorite position, on his side, to sleep very easily. He ended up crying almost nonstop for about 45 minutes before we left the hospital. Once we got in the car, he fell asleep and slept all the way home. I put him right to bed and he has slept pretty well since then. We have to go back into the hospital tomorrow morning and have the ph probe removed and return the equipment along with it. Hopefully we can keep Caden from yanking it out on his own before then.

It was a completely exhausting morning for me. I feel so drained. Getting the IV and seeing him after the procedure was the hardest for me. It just hurts to see my baby so unhappy. I know if I thought today was bad, I can only imagine how much worse the heart cath is going to be on the 27th. :( Thank you all for your continued prayers. We still need them as we wait for more answers as to what is going on with Caden. Not a fun time for us!

Here are some pictures of our morning:



Caden trying to remove his gown


Having his pulse-ox and blood pressure checked

The nurse listening to his respirations

Calming down after getting the IV in his arm

Mommy holding him in the procedure room

Asleep

Recovering

Waiting for Caden to wake up


Trying to sleep with the no-no's on

Baby Massage

On Tuesday, Caden received his first massage. Our incredible friend, Sharon, is a massage therapist and has been working with essential oils in her massages. They help with many different things and one of those is respiratory issues. So she asked if she could give Caden a massage to see if it would help his respiratory issues. It was so sweet to watch Caden as she gently massaged his body. He was so relaxed and alert; just taking it all in. He often holds his arms tightly to his body if you try to extend them. But for Sharon, he was completely relaxed and let her move his arms and legs without any complaint. What a treat for him and me. :)




Sharon and her husband, JB, have been such a wonderful blessing to us throughout our ordeal with Caden. They supported us through a difficult pregnancy and came to visit us while we were at the hospital at Stanford. Since we came home, they were eager to learn how to use the feeding tube so they could help us out and give us breaks with Caden. They have been such an invaluable part of our lives and I don't know what we would do without them. They are willing to watch both our boys when I have appointments or just have a mommy meltdown. We are so blessed and I wanted to acknowledge them to everyone.
Here are some pictures of when Sharon & JB came to visit us at Stanford:




I also want to acknowledge all our wonderful friends and church family here in the Sacramento area. We are so lucky to have you all in our lives. We are so grateful for the meals provided after we got home in March, the prayers, the phone calls, the visits. We have been touched by so many people and have made some new friends through the experience as well. It is amazing what people are willing to do for others when given the opportunity. I tend to be the kind of person who tries to do it all myself. This experience has taught me I need to accept the help when it is offered. There are wonderful people out there who are willing to help in any way they can. So, thank you to all our friends, family, and church family. We wouldn't get through this without you!

Hearts of Hope Meeting

Last night, we had our monthly Hearts of Hope support group meeting. Before the meeting a few of us went to dinner and socialized. I had such a good time talking with other heart moms. Listening to some of the things they are going through with their kids help me be more prepared for what we might face in a few years as Caden gets older. This group is going to be very important to me over time.

At the meeting, Dr. Teimour Nasirov, came to meet the group and answer any questions we might have. Teimour is a pediatric cardiovascular surgeon who just started working at Sutter Memorial Hospital in Sacramento. We got to know him while we were at Stanford. He did his training there under Dr. Reddy who did Caden's surgery. Teimour is also the doctor who came to our house to remove the stitches from Caden after we returned home. Some of you may remember me writing about that a few months ago. Anyway, it was so great to see him again and we were so excited for him to get to see Caden.

It was great to have him at the meeting. He really wants to support Hearts of Hope in any way he can and said he loved the group's blog. He is such a nice guy! He wanted a chance to hold Caden before he left for the night and had us take a picture on his phone so that he could show Dr. Reddy. He heard that Caden was having his bronchoscopy/endoscopy/ph probe done at Sutter Memorial on Friday and wanted to know what time so he could stop by and see us. That is so sweet of him to want to take time out of his busy schedule to come see us.
Teimour holding Caden

The closer it gets to Friday, the more nervous I get. We got a call from the hospital today letting us know Caden's procedures are scheduled for 8 am with us needing to arrive at 6 am. I'm not actually nervous about the procedures themselves, it's more about the anesthesia. They use a sedative but do not put him on a ventilator which I am happy about. It's just that this is the first procedure of any kind that he has had done since we left the hospital in March. He's had echos and EKG's, but nothing that involved needles, IV's, or anesthesia. Since we know he is a hard stick I'm not looking forward to them getting a line for the IV. We welcome your prayers this week as we get ready for Friday. And, of course, on Friday, we really would like your prayers for Caden as he goes through these tests.

Always Changing

You would think I would learn that things are always changing and just go with it. But I still manage to get stressed out about it because I am a planner and I want to be able to plan how things go. Apparently this is something God REALLY wants me to learn to let go of! I can be a little thick in the head sometimes.

Anyway, Caden was supposed to have a bronchoscopy on Monday morning to take a look at his vocal cords. But when we saw Caden's GI doctor on Tuesday, she wanted to combine that with an endoscopy and ph probe. She doesn't do the bronchoscopy, so it requires coordinating the schedule with another doctor in order to get it all done at once. But we really wanted to combine them in order to minimize the times Caden has to be put under anesthesia. So, Friday afternoon, I finally got word that the procedures would be scheduled for next Friday, July 17. It will be a different doctor than originally planned doing the bronchoscopy, but that was the way it had to be in order to get it to work.

This just means that Greg has to change his work schedule yet again in order to accommodate being off next Friday. We're just lucky he has a flexible enough job that he can do that on such short notice. But I'm really hoping that everything is set now and won't get changed. I don't handle change well. In the meantime, we still have our regular busy week ahead of us with all our regular appointments. Life is never dull, that's for sure!

We could really use your prayers for Caden as we get ready for the procedures this next Friday. Because they are putting him under general anesthesia, that really makes me nervous. This is the first “procedure” of any kind that has been done since we left the hospital four months ago. Also, please pray for the doctor to be able to identify what is causing Caden to retch so much so that we might be able to resolve the problem and make him more comfortable.

More Dr Updates

This morning, Greg and I took Caden to see the gastrointerologist who is working with him. We expressed our concern over his excessive retching. It is so sad to watch him do it. It is so frequent and seems so uncomfortable for him. An episode can last several seconds or several minutes. Poor thing!

We really wanted to talk to her to get an idea if there was something we could do to make them less frequent and ease his discomfort. She said based on everything we said, she wants to do an endoscopy as well as a ph probe. We told her he wasn't retching prior to having the g-tube and nissen fundoplication at the top of his stomach. So, she said it sounds like the nissen is what is causing the problem, however she won't be able to confirm what is really going on until she can do the endoscopy. She said it's possible the nissen was wrapped too tight around the esophagus or the balloon from the g-tube is in the way or a number of other possibilities. She won't know until she can take a look. She wants to place the ph probe to check for reflux. The probe is left in for a day and gathers data. Then it is pulled out and the information downloaded to a computer. This will tell if he is having reflux issues or not.

Since Caden already has a broncoscopy scheduled for the 13th, she is going to try to coordinate with the other doctor in order to take advantage of him being under anesthesia. This will be great for us. We're still waiting to hear if they will do it all on the 13th or if they will do it on another day. But it is supposed to happen next week sometime.

I also got a call from Dr. Van Gundy's office today letting us know Caden's heart catheterization has been rescheduled for Monday, July 27 at UC Davis Medical Center in Sacramento. Hopefully he will be completely well at that time and there won't be any further delays. We want them to be able to get the information they are looking for in the cath and get it over with.

So, that's the latest with us. I'll keep you posted with any news.

4th of July

We had a great 4th of July up until the end. We were feeling very patriotic and wore our red, white and blue for church. Then we stayed for potluck afterward and enjoyed socializing with friends. We spent a few hours at home during the afternoon to rest and then it was over to some friends' house for homemade veggieburgers, homemade ice cream and lots of other good food and more socializing! When it came time for fireworks we decided to head home and watch the show going on in our street. Unfortunately, Kyler was so excited, he was running around in circles and despite my efforts to get him to stop, he tripped over his feet and did a sliding face plant on the asphalt. :( I think this is the worst he has ever been hurt. But, I'm sure he has much more in store for us. Thankfully he seems to be recovering well. I hope you had a great 4th!

Patriotic family at church

Caden taking a siesta in the afternoon


Enjoying an afternoon at friends' house

Kyler's road rash

Cath Postponed

Well, nothing ever goes as planned, right? Today we had our pre-cath appointment with Dr. Van Gundy and he decided to postpone Caden's heart catheterization because he still has a cold. He hasn't had a fever at all and his lungs are clear but he is coughing and congested. So, Dr. Van Gundy wants to play it safe and wait. I don't know when it will happen now because his office manager was out of the office until next week. She is supposed to call us then and let us know.

Dr. Van Gundy said if he did it now, the pulmonary pressures could be off because of the cold and he wouldn't be able to get accurate information anyway. And, he also decided to wean down on one of Caden's medications before the procedure also in order to not have that affecting the results. If he did it Monday and Caden was still on this med and still had a cold, there was a strong possibility he would have to have another cath done in the near future. We would rather wait and only do it once. It's kind of a bummer that we have to wait and can't just get it over with. But at least this way we should only have to do it once.

Like I said before, God is in control and his timing is perfect. Thank you all for your prayers. I will keep you posted on any new news.

Vacation Aftermath

The week following our return from vacation was crazy busy! It seemed like we were going non-stop and the state of our house shows it! Caden had several appointments that kept me busy enough. Then on top of that, I started physical therapy for my back and have to go 3 times/week. Somehow I have to find the time to fit that all in and find childcare for Caden since there aren't a lot of people who can take care of him.

On Wednesday, Caden's first appointment of the week was a PT evaluation with a different provider. He had already been evaluated through Easter Seals but they had a wait list of 4-5 months and I just didn't want to wait that long. So, they found us another provider who could start him right away. Coincidentally it is at the same place that Kyler had speech therapy for a year and a half. So I know them well! The evaluation went well and the PT wants to start therapy right away. I am looking forward to that. I think it will really help him catch up.

Then, on Thursday, we had a regular follow-up with Dr. Van Gundy, our cardiologist. I was glad we would be seeing him because Caden had gotten sick. I had a cold with runny nose, congestion and coughing and he caught it from me. I was VERY worried about it because this is the first time he has been sick and we've worked so hard to keep him healthy. Any kind of respiratory infection could be very serious for him with his small right lung. The nurse checked his oxygen saturation and he was satting at 97% so I was thrilled about that. And, when Dr. Van Gundy listened to his lungs, he said everything sounded pretty clear but just to be sure, he ordered a chest x-ray. We had an appointment scheduled for Friday with Caden's pulmonologist and Dr. Van Gundy wanted us to be able to take a copy of the films to his office with us for him to review.

In addition to the regular exam, we talked about the heart catheterization coming up. While I was on vacation, Dr. Van Gundy's office scheduled a heart cath for Caden for Monday, July 6. It is diagnostic to check the anatomy and verify the pulmonary pressures. Echos can do some of this, but the only accurate way to get this information is to do a cath. Poor baby. This procedure is scheduled for 8:30 am at UD Davis Medical Center in Sacramento. We're supposed to get more details about the cath and what will be happening at our pre-cath appointment tomorrow.

We got the x-rays taken Thursday afternoon and then on Friday, we went to see the pulmonologist. He reviewed the films and compared them with the previous x-rays of Caden's lungs and said he didn't see much change. In terms of being sick, that was good. But it also means that his lung volume isn't growing, which is what we had been (and still are) hoping for. The pulmonologist also listened to his lungs and said they sounded clear to him. More good news. We talked about aspirating and I told him the swallow study determined he wasn't aspirating anymore. He ordered a broncoscopy to check out Caden's vocal cords and I don't know what else. That is scheduled for Monday, July 13 at 10:00 am at Sutter Memorial Hospital in Sacramento. They have to put him under general anesthesia for the procedure. :(

Also, that same Friday, Caden's feeding therapist came to the house to work on feeding. She asked how things were going and I told her that he is highly offended when we try to put anything in his mouth besides his pacifier. He doesn't like the taste of milk whether we dip his pacifier in it or if it comes out of a bottle. She said she had expected him to progress more by now and since he hasn't, she said she doesn't think he will ever drink from a bottle. But we are continuing with therapy because all the oral stimulation we are doing is helping to pave the way for introducing solid foods at some point, and eventually a cup. It is kind of disappointing to know that we will have the feeding tube in much longer. But we will do what we have to do. And, of course, we have learned that Caden does things in his own timeframe!

Then, this last Monday, I took Caden to his pediatrician for a check-up. Also wanted him to listen to his lungs and see what he thought. Caden has continued to cough a fair amount and it really scares me. But, again, Dr. Wang said everything sounded really good. And, the even better news is that he weighs 13 lb, 11 oz and is 24 inches long. This puts him in the 10th percentile for height, weight and head circumference! Such fantastic news! Dr. Wang was especially happy that the head circumference percentile was increasing and so was I.

Yesterday, the infant development specialist came out to meet with Caden. She comes out 2-3 times/month. He is doing so many more things than the last time she was here. He's actually starting to reach for toys and bring them to his mouth. Of course, if he gets them to his mouth, he makes a face and pulls them away. He doesn't really want anything in his mouth... :) And, he is starting to try to roll over. He gets about halfway over either to the left or the right and can't quite make it all the way. But he seems to really like being on his side. It's been so much fun to finally see him doing these things. He is definitely delayed in his development but we are hoping that he will be able to catch up over time.

Anyway, tomorrow we have our pre-cath appointment and then the cath is next Monday. If anything inportant comes up in our appointment tomorrow, I'll try to post something before Monday. Otherwise, I will try to update after the cath is over. Thank you for your prayers. We know God is in control and we are trusting him with our precious son.