Pediatric Gastroenterologist

Today, Friday, April 24, Caden finally had an appointment with the pediatric gastroenterologist. I had been waiting a couple weeks for a referral to go through and for them to have an available appointment. I was so happy to know we were going in today. And, I was hopeful that she would be able to put in a new Mic-Key g-tube since we had been stuck with the foley catheter since Tuesday's ER visit. I REALLY didn't like using the foley. It was so much more complicated to do feedings and give medications, etc.

I immediately liked the doctor from the moment she came in the room. She was easy to talk to, and she clearly took my concerns seriously. She had one of her nurses come in and put in a new g-tube. It is slightly smaller in diameter than the previous one he had, but that's okay with me. I'm just thrilled to have the Mic-Key button back!!! She told us that it seemed there had been a bad “batch” of g-tubes manufactured because she had patients who had had g-tubes for many years coming in saying theirs had come out. So, it wasn't just us. It really did seem they were defective. Makes me feel a little better, like I wasn't doing something wrong. But I still wish we didn't have to go through it at all!

We talked about scheduling another swallow study and she agreed we needed to do that as soon as possible so we could transition to oral feedings and get rid of the g-tube altogether. She said she could schedule it locally but it often takes a couple months at least and they just don't do them that often. Her preference is for us to do it at Stanford so it looks like we'll be going back over there. We had another appointment scheduled for May 19 at LPCH so she was going to try to schedule it for the same day so we don't have to make multiple trips.

We also talked about the formula we were fortifying the breast milk with. We have been using Enfamil because that is what the hospital used. The GI doctor wants us to switch to a different type of formula (the name is escaping me right now) which she feels will be more easily digested. She said her office will arrange that with Apria Healthcare, our home medical supply company. So that will be nice. We definitely want what is going to be digested more easily because it will hopefully mean less gas issues for the poor thing!

We also talked about doing another video scope of his vocal cords but that hasn't been set up yet. She said if they do it in Sacramento, it will be done at Sutter Memorial Hospital and they like to put them under sedation to do it. So she thought if we had any other procedures that needed to be done under sedation, we should try to coordinate them to happen all at the same time. Anyway, we will see what happens with this. We see her again in a month and she told us if we had anything come up in the meantime, to let her know or just come into the office. Now, we will see what the pediatric surgeon says next week when we meet with her.

Pulmonology Appointment and G-tube Mishaps

On Friday, April 17, Caden had an appointment with a pediatric pulmonologist. He asked me a bunch of questions and did an exam as well. Overall he said he thought Caden looked really good which is always reassuring. He wanted us to count his respirations when he is sleeping a couple times a week. He wants the respirations to be less than 50/minute. There is NO way they will be that low. I counted them twice already this week so far and they were 90 and 86! He wants me to track it and call him if it remains consistently high. I'm not sure what he's going to do about it. But I will call him after I've documented it for a couple weeks.

Then, on Saturday, April 18, the g-tube came out again. It had only been eight days since I had replaced it and had the contrast study done to confirm placement! I was so exasperated about it. This time, however, I just put the new one in and didn't take him in to have a study done. I felt very confident that it was in the right place. However, I did have to call our home medical supply company and ask them to send me more replacements for the g-tube. I asked them to send me two of them just in case we had a similar problem with them coming out so quickly. I also talked to them about whether or not they thought they were defective or what the problem was. They really couldn't say either way. But they recommended checking the fluid level in the balloon a couple times/week just to monitor whether it was leaking or not. So during the next week, I checked the fluid several times and every time it looked like it had the same 5 mls that it should have. So I thought we were doing okay...

Wishful thinking! On Tuesday, April 21, I got Caden up at 7 am and went to change his diaper before starting his feeding. When I pulled up his onesie, I discovered the g-tube had come out. I don't know what time it came out, but it was sometime between 4:30 and 7 am. But I could tell by looking at it that it was starting to close up and I didn't think I would be able to get the replacement in. Unfortunately I was correct. I couldn't get the tube in because the hole had closed too much. So I called our pediatrician and asked him what he wanted me to do. He said I should take him to the ER and have them try to get it back in because the longer it is out, the harder it is to get something back in. And, the worst case scenario would be the hole would close completely and he would have to have another surgery to get it put back in.

He wanted us to go to Sutter Memorial Hospital downtown just in case we needed the pediatric surgeons to get involved. So, by now, it is 7:45 and traffic is terrible, but I took Caden to the ER there. Thankfully Greg hadn't left for work yet by the time I had to leave. So he was able to stay home with Kyler for a few hours in the morning. Of course you never know how long things are going to take at the ER.

When I got to the ER, they were able to see us pretty quickly which was good. The doctor tried to get the g-tube in without success. So he put in a foley catheter. Once it was placed, they called x-ray down to do a contrast study to make sure it was placed correctly before I could feed him. It ended up being after 10 am before I could feed him so he had already missed one feeding. I had to get the nurse's help in order to know how to use the foley to do the gravity feeding. Caden had been really fussy all morning and when I started the feeding, I could only get about half of it in before he really started screaming. It was good I tried to do it there, because we realized after we stopped the feeding that the plug for the foley wouldn't stay in. It just kept popping out. So, the nurse came up with another solution for us. Thankfully we are still able to use the feeding pump at home. But we have to use different syringes for medications. It makes everything a little bit more complicated. I didn't realize how easy we had it with the g-tube. Now that we have the foley, I realize how convenient it was before!

Because we weren't sure how long we were going to be at the ER, we needed help with Kyler because Greg had to get to work. We are so lucky to have such good friends! Greg was able to drop Kyler off at a friend's house on his way into work and they kept him there until I could go pick him up later that day. So awesome!

Also, when I left the hospital, I took Caden straight to the pediatrician's office because he had an appointment to get his last synagis shot for RSV. It was just a really stressful day for me.

Greg and I had already arranged with one of the pastors from our church and his wife to watch our boys that night so we could go out on a date. I almost canceled because I wasn't sure how it was all going to work out. But Greg reminded me how much more we actually needed that time away. So we ended up going out as planned. We were able to have a nice dinner, go on a short walk and have a wonderful dessert together. It was so nice and relaxing!

So, today is a new day. It feels like my to-do list is never-ending. The long list of appointments I have to make for Caden grows every day. It's amazing how many specialists and therapists he has to see! Of course, it's all for his benefit and development so I am happy about it. But it's crazy to coordinate it all! Our next appointment is with the pediatric gastrointerologist this Friday. Then, next Wednesday we see the pediatric surgeon to hopefully get the g-tube put back in and get rid of the foley catheter!

The excitement never ends around here! I wish it would though... Please pray that the foley doesn't come out during the next week. I don't want to deal with another trip to the ER!

Here's a couple photos of Kyler loving on Caden. We're so glad he loves his brother!

Appointment at Stanford

On Monday, April 13, Greg and I took Caden back to Lucile Packard Children's Hospital for a follow-up appointment. He had an echocardiogram, EKG and an exam with one of the cardiologists. The echo went well and Caden was able to sleep through most of it. That was good because it made our jobs easier since we didn't have to work too hard to keep him calm and still. The EKG also looked good, the tech just had a hard time getting a good reading because Caden had hiccups that were interfering!

When the doctor did his exam and asked us all his questions, he said he was very happy with how Caden looked and what the echo and EKG showed. From his perspective, everything looked great. Caden is currently on four medications and the doctor thought that within the next three months, that he would be off of three of them completely. And, the last one, he thought he would be off of within a year. So that is great news. We didn't really know if he would have to be on them long-term or not, but it looks like he won't have to be on them too long.

While we were in Palo Alto, we were able to connect with a couple friends from the Ronald McDonald House which was fun. And, we also saw our social worker and a couple of the nurse practitioners from the CVICU. Good to catch up with a few people who knew us and Caden.

It ended up being a long day, but it went well and we are happy with how Caden is progressing. We are so grateful for how well he is doing. And, we are so happy that he is sleeping better. Probiotics seem to have made all the difference for him. It seems to help him move things through more easily and not have as severe gas problems as he was having. Praise God for that! As usual, we thank you for your prayers and we will post more news when we have it.

Freezer Donation to Ronald McDonald House

On Saturday, April 4, Greg & I and a couple other people from our church drove to Palo Alto to deliver five mini freezers to the Ronald McDonald House as a donation from our church. It was so great to be able to do this for them and we are so grateful to our church for being so supportive!

While we were still living at the Ronald McDonald House while Caden was still I the hospital, our pastor, Walt, came to visit several times. On one of those visits, he asked if there was anything the church could do to show its appreciation to the Ronald McDonald House for the wonderful facility and services it provided to us during our stay. At the time, I wasn't sure, so I told him I would think about it. A couple weeks later, it dawned on me that they don't have enough freezer space for moms who need to store breast milk. There are a lot of moms at RMH who have babies in the hospital and are pumping. The hospital provides minimal storage for the milk and space is at a premium. At RMH, moms can check out hospital grade breast pumps in order to pump in their rooms. But then they have to store the milk in their personal refrigerator in the kitchen or at the hospital. They had a few mini freezers that could be checked out as well, but there were never enough. I was unable to have one until the night before we came home.

So, I asked Walt and our church if they would be willing to raise money to donate freezers to RMH. They said yes and came up with $1000 for the project. This enabled them to purchase five small freezers. They also had plaques made for each freezer stating it was donated on behalf of Caden McCulloch by Sunset Oaks SDA Church in Rocklin. In addition, they presented RMH with a larger plaque thanking them for their care of us during our stay there from December 16, 2008 – March 7, 2009.

Saturday afternoon, after church, the four of us drove down and delivered the freezers. Tina Alexander, Director of House Operations, received them and was so appreciative of the donation. It was so great to be able to do this for them. Tina said on Friday, a mom asked for a freezer, but didn't have any more to give out. So, they were happy to be able to put them to use right away.

We are so happy for the love and support of our church. And, it is so incredible to see how Caden is able to bring a blessing into the lives of other families. He is a very special baby and we know God will use him for great things!

Heart Support Group

I wanted to post an entry about a local heart support group, Hearts of Hope. I found out about them sometime after Kyler's heart condition was discovered and treated. For those of you who may not know about his defect, he had pulmonary valve stenosis. This just means that his pulmonary valve was partially fused shut. At three months of age, they did a heart catheterization and ballooned open the valve. The result was GREAT. It appears it was a one-time fix and he shouldn't have to have anything else done down the road. At the time, the cardiologist thought Kyler would have to have another heart cath done at one year of age to balloon it open again. But, Kyler's valve has continued to grow with him as he grows and we are so grateful for that!

At the time of Kyler's heart cath, I thought that was traumatic on us. He was only three months old and to have to hand him off to the doctors as they took him into the cath lab was so scary for us. Now, I have a whole new perspective! That was NOTHING compared to what we've gone through with Caden!

Anyway, knowing about the heart support group after Kyler has his cath, I didn't really feel the need to be part of the group. In fact, I almost forget that Kyler has/had a heart defect. It has never affected him in any way we could see visibly, even before they opened up the valve. So it wasn't something I desired to be involved with at the time.

Then, during my pregnancy with Caden, the leaders of the support group got in touch with me via our blog to let me know they were there for us any way we needed them. I was so touched by all their comments and support, especially because they've never even met me. But I still didn't start attending meetings. And, of course, I got put on bed rest so I couldn't have gone to them even if I'd wanted to.

But after going through all we have with Caden, I have felt a very strong need to be part of a group that “gets” it. We have fantastic friends who have been so supportive to us and have helped us in so many ways. We are truly blessed by all the friends we have in our lives. But, I feel like it is so important for me to be able to connect with other families who have been down a similar road as us. They can relate in a way no one else can and I find that very comforting.

So, this last Tuesday, I attended my first support group meeting with Hearts of Hope. It was truly humbling for me. It is such a great group of people who all have a story to share, about their children, about themselves. After listening to what some of them have been through, it feels like we have had it so easy with Caden. And, we have been through a lot, but not compared with others. Caden's actual heart defect is relatively minor in terms of congenital heart defects. His coarctation of the aorta was fixed “easily” and the echos show that everything with that repair look great! His real issues that we will be dealing with long-term have more to do with his small right lung than anything else. Of course, with it all put together, it is a lot to deal with. But this group of people know what it's like to have a child go through surgery at a very young age. Sit by the hospital bedside and wonder if they will ever get off the ventilator. Take a baby home on medications that have to be given round the clock. And so many more things that you go through emotionally.

I left the meeting feeling very grateful that Caden's situation isn't worse than it is. That he shouldn't have to have any more surgeries related to his heart. That we are blessed to have him home with us and that he is looking as good as he is. Not all the children have such optimistic futures. This is an eye-opening experience and I look forward to getting to know the families better over time. They are a great resource for many things as well. I know many of these families read our blog, so thank you all for your support and prayers as we have been down this road. See you at an upcoming meeting. : )

G-tube Excitement

Today ended up being a little more exciting than I would have liked. Right after Caden's 7 am feeding, Greg was changing his diaper and noticed the g-tube had come out of Caden's stomach completely! It must have come out after the feed was over because his clothes weren't wet at all. But it was quite a surprise. We knew that we had to get it back in as soon as possible because the hole can close quickly. We don't really know exactly how quickly but we didn't want to take the chance. So, I got my computer and went to the website I had bookmarked showing a step-by-step on how to replace the tube. Then I grabbed the new g-tube from our box of home medical supplies and Greg and I went to work. We followed the instructions and were able to get the new tube in relatively easily. Whew!

However, we had been told upon discharge from Lucile Packard Children's Hospital, that the first time the tube was replaced, that we would need to have a contrast study done in radiology to confirm correct placement. They want to make sure the tube isn't leaking into the abdominal cavity which would be a huge problem.

I already had an appointment scheduled this morning with Caden's pediatrician to talk about referrals to all the specialists we need to see. So the timing was good because I just put the kids in the car and went to the doctor at 9 am. I ended up being there for about an hour as he tried to get one of the pediatric GI doctors on the phone to ask their opinion about the contrast study. The doctor he talked to felt that since LPCH wanted us to do it, that we should go ahead and do it. So, the pediatrician sent us to Mercy San Juan Hospital to get the study done. It ended up being a long morning with waiting at the pediatrician's office to waiting at the hospital for patient registration and then again in the imaging department. But we finally got into the room where they did the study. The radiologist confirmed that placement was good and the fluid was going where it was supposed to. But he was getting some more images when all of a sudden the machine shut down! Kyler had taken it upon himself to push some of the buttons behind the window where he was waiting outside of the radiation area. I was wearing a protective apron and standing next to Caden, but one of the x-ray techs was supposed to be helping keep Kyler out of trouble. Unfortunately she turned her head for just a second and that was all Kyler needed to push the button which stopped the machine! Thankfully he didn't cause any damage and everyone involved was really good-natured about it. But it's a little embarrassing to have your child do that!

Anyhow, the end result is that the tube is placed correctly, yes, I am patting myself on the back for getting it put in right. However, I felt so bad for Caden in the meantime. They didn't want me to put anything through the tube until they confirmed placement so that meant I couldn't give him his feeding at 10 am when he would normally eat. It wasn't until 12:30 pm that I could finally feed him. He was quite upset about not being able to eat sooner! I felt so bad. And of course, Kyler was starving too so it was complete chaos when I got home trying to get both boys fed and taken care of. Thankfully Caden settled down for a nice long nap shortly after eating. And, Kyler... well, let's just say he had a short period of quiet in his room. No nap, but oh well. All in a day's work of being a mother with two boys, one of which has a feeding tube!

Things are Looking Up

Things are looking up. Our worst night with Caden was last Friday night. He just couldn't be comforted and was awake and crying all night long. But on Saturday afternoon a friend came over and held Caden for me so I could take a nap. Greg took Kyler on a bike ride, so it was nice and quiet at home. And, Saturday night, Caden slept really great. We didn't know if it was a fluke or not, but Sunday night he slept well also. Monday night wasn't quite as great, but not bad. And, Tuesday night was fantastic! Last night I had to be up with him more but overall I'm still getting more sleep than I was last week so that is great news!

Today, Caden had a cardiologist appointment. He weighed in at 8.8! Big boy! Of course he's still very small for his age. But he's gaining weight and that is the important thing. Dr. Van Gundy recommended increasing the volume on his feeds because now that he's getting bigger, he is needing more calories. And the last couple days he has been getting hungry awhile before the next scheduled feeding. So, it's good that we're increasing the amount. We want him to gain weight!

Also, his pulmonary pressures and his blood pressures are looking really good. The echo Caden had last week showed very good results! We are so happy about that. So, that means we are weaning down the medications now. One of the diuretics is going down to once/day (from twice/day). The other diuretic is going down to twice/day (from three times/day). And, the blood pressure medication is going to twice/day (from three times/day). So, there is only one medication that we are still giving three times/day and that is for the pulmonary hypertension. But he is weaning on that one simply by gaining weight and us not increasing the dosage.

We have an appointment at Lucile Packard Children's Hospital on April 13 with a pulmonary hypertension specialist to see what his evaluation is of Caden's progress. He might do an echo while we are there. If not, we will have another one at Dr. Van Gundy's office in the next month..

But we are so happy that things look as good as they do. We are so blessed. And, when we're not so sleep-deprived, we are able to recognize that fact a little easier! He is recovering so well from all he has been through. What a miracle!