We're Still Hanging in There

Most of you have probably given up on us actually posting a blog entry. I know it's been a couple weeks. We've had some challenges with Caden's sleep and it seems to be getting worse every day. I know all parents out there have an idea of what sleep deprivation is like. However, we feel ours is compounded even more by all we've been through already. It seems like there is a cumulative effect of all the stress for the last several months and now with the sleep deprivation, we are completely maxed out. Caden's lack of sleep has to do with really bad gas.

In connection with the g-tube surgery, they also performed a “nissen”. This is just a procedure done at the top of the stomach to prevent any reflux up the airway so there is no risk of aspiration. However, in addition to preventing any milk from going up the airway, it also makes it impossible for him to burp like a normal baby. So, that means all the air that enters his belly must exit through the bowels. This definitely causes him pain and discomfort. He fusses during every feeding during the day and night. Sometimes it passes quickly and other times it takes a couple hours to move things through. And, there is nothing we can do to help him. He usually wants to be held all the time. During the day, he often won't sleep unless he's being held. And, even then, it's usually only for about 15 minutes at a time. At night, where he used to sleep from about 8:30 pm to 4 am, he is now only sleeping from about 8:30 pm to 11 or 11:30 pm without fussing or crying. Then, after that, we are often up with him the rest of the night. Needless to say, Greg and I are exhausted!

It's hard to even write this down because we know how blessed we are to even have our baby home with us. We feel guilty admitting we are maxed out and can't handle it. But sleep deprivation and stress are worthy opponents and we often feel they are winning the battle. So, we ask for your prayers as we try to find a way to ease Caden's gas pains. We are giving him Mylicon as well as probiotics in order to help aid in that area. But so far we haven't noticed much improvement.

On another note, we were able to celebrate Kyler's 3rd birthday on Friday. It was a little bit late but we didn't plan anything until after we got home because we weren't even sure when we would get home from Stanford. Also, we didn't want to have a bunch of germy three-year-olds at our house because we didn't want to expose Caden to them. And, we didn't want to take Caden with us to wherever we had the party for the same reason. So, Caden's primary nurse, Amy, from the CVICU at Stanford offered to come babysit for us so we could celebrate with Kyler. This was such a wonderful gift for us because we had absolutely no qualms about leaving Caden with her! We could just show her where the milk was and the medication and know that he was in good hands. Thank you Amy!!!

We celebrated Kyler's birthday at Chuck E Cheese's with 6 of his friends. We chose this location because they took care of all the decorations for us and we didn't have to do any shopping to prepare for it. The only thing I did ahead of time was purchase a cupcake cake with a railroad on it. I put a couple of Kyler's Thomas the Train's on the top of it and that was that. The party was lots of fun for him as he and his friends got to run all around and play games, etc. It was great.

We continue to be blessed by our wonderful friends. They bring us meals and take Kyler to and from appointments as well as watch him at home while I take Caden to doctor appointments. And, they are willing to come hold Caden while I get some sleep. It's a wonderful blessing to have such incredible people in our lives! Thank you everyone for your love, support and prayers!

Adjusting

Well, life at home continues to be a trial and a joy. We are so happy to be home and sleep in our own bed. However, we are finding out how stressful it can be as well. We are relying heavily on the support of friends for help with Kyler especially. He is going stir-crazy around the house and we have friends who are willing to take him out to appointments and also to the park so he can burn some energy. He definitely needs it! I have to say we are truly blessed with how well he is handling the transition home. He seems to be doing great as a big brother. I really hope it lasts. He has done a really good job of self-entertaining while I need to tend to Caden. And, he is also interested in talking to Caden and reading to him, etc. It's really very cute!

Caden has good days and not-quite-as-good days. Overall, he's doing great. The not-quite-as-good days refer mainly to sleeping issues than anything else. His feedings are going well and he doesn't appear to be in any kind of distress which is great. That is the main thing we need to be concerned with and right now he's doing well healthwise.

We saw the cardiologist on Tuesday and he was happy with how Caden's incisions looked and his overall well-being. He noted that his breathing is still a little fast, which it was the whole time we were in the hospital also. So, he wanted to increase his feedings a little bit to help give him more calories since he is burning so many with his rapid breathing. And, instead of going to the pediatrician's office every week for a weight check, we will be going to the cardiologist's office. This is primarily because there are too many sick kids at the pediatrician's office and we really don't want Caden exposed to so many germs. At least at the cardiologist's office the kids aren't there because they have something contagious. So it's a safer environment for us to to the weekly weight checks. We don't need an appointment, we just need to go in and have a nurse weigh him and put it in his chart.

Caden has been sleeping pretty well at night, at least from 8:30 or 9 pm until around 4 am. And, some nights he sleeps until around 7 or 8 am. But there are also nights when he is up at 4 and is really fussy, upset and crying for several hours. It is definitely stressful when he has a night like that. There is nothing we can do to console him and it is tough. Greg and I end up trading off holding him when he gets like that.

I think I mentioned in a previous entry that there was a possibility that one of the cardiovascular surgeons from Lucile Packard Children's Hospital at Stanford would come to our house to remove the sutures from Caden... Well, he came today and did that. I would say this is probably very unusual for a surgeon to do. However, he was going to be in the Sacramento area this weekend anyway and was able to come by and do that for us. That was great for us because it meant that we didn't have to drive all the way back over to Palo Alto just for that five-minute procedure. He was happy with how the incision looked and was healing. Removing the sutures left some holes on either side of the incision that now need to heal and we are supposed to watch those to make sure they don't get infected. But otherwise it looks good.

There are a couple small sutures from the g-tube surgery that he was a little concerned about. They are supposed to be absorbed, but they are currently not doing that. So he wants to talk to us again in a couple days to see how they look and he said if they don't look better, they still might want us to bring Caden back in to get those looked at. Hopefully that is not the case.

The other thing he looked at was the g-tube insertion point. When I looked at it earlier this afternoon, it looked infected to me. So when we asked him about it, he looked at it and thought it looked okay. He said it looked more like granulation tissue and not infection. So that was good news for us. The last thing we need to deal with is an infection around there again.

Anyway, that's where things stand at this point. We are trying to adjust to our new normal and are so happy that Caden is home. It is very strange because in many ways it seems like Caden is a newborn even though he is over two months old. And in other ways it seems like he is older than a newborn. I think it goes back to that weird time warp feeling we had when we were at the hospital. We felt like time was standing still for us while the world kept on revolving around us. And now it feels similar with Caden. It's like he's in a time warp where he looks like and behaves like a newborn but he's really an infant. It's very odd.

Home at Last

We arrived home late Saturday afternoon. We didn't end up leaving the Ronald McDonald House until close to 1 pm. Then we stopped at Greg's sister's house to pick up Kyler. He had been there for the past couple days. So, the day kind of got away from us. When we got home, we found a welcome home sign on our garage door left by some good friends of ours. So sweet! What a way to come home. Our neighbors watched us arrive and were anxious to see Caden. So he met a couple neighbors that evening. Then, we had some other great friends bring us dinner since they knew there wasn't much in the house for us to eat. What a blessing!

Our first night at home in our house with our whole family together was wonderful. Kyler was so excited to have Caden with us, he wanted to read him bedtime stories. It was pretty sweet. And, Caden slept great, only getting a little fussy a couple times during the night but not ever really waking up much. That's one advantage of doing feeding through a g-tube. Caden doesn't really have to wake up to eat.

Sunday, I think we tried to take on too much around the house. We had a LOT of things to unpack, but we also needed to rearrange some furniture because we told Kyler he was going to be sleeping in a “big boy bed” now. So, that being promised and Kyler being excited about it, we needed to get the beds moved around. So, the rest of the day was spent trying to get Kyler's room in order so he would have a place to go to bed Sunday night. That all worked out, but not without some stress. Caden had a bit of a fussy day, not wanting to be put down, ever. But of course, we're very happy he likes to be held! And, we are very happy we can hear his cry. So we are thankful about things like that as well.

Sunday night Kyler went to sleep in his “new” bed and slept great which is always a blessing to us! He now sleeps in a queen bed that used to be our guest bed. He looks so little in such a big bed. : ) It's cute though and he's excited about it. Caden had another good night of sleep which is great for us.

Monday morning was a bit stressful for me though. Caden had an appointment with the pediatrician at 10:15 and Kyler had a therapy appointment at 11. A good friend of mine was able to take Kyler to his appointment and she was planning on being at the house around 9:30 so we could transfer the car seat and I could get Caden to the doctor. But it was my first day on my own trying to get ready with two kids. One of Caden's feeds got messed up because I forgot to unclamp the g-tube extension and it ended up “feeding” his bed and not his belly (1st time I've done that... hopefully the last). So, that meant I had to do another feeding with him which just took more time and put me behind schedule. I guess that's what I get for trying to rush around and get it ready. Hopefully I'll get it all figured out one of these days!

Definitely a transition, to say the least. At Caden's appointment, he weighed the same as when he left the hospital. It is good that he didn't lose any weight, but they really want to make sure he's gaining weight. So that is our goal right now. We see the cardiologist tomorrow and look forward to talking with him and getting input from him. We'll try to keep you updated. I definitely don't have as much time to do these entries as I did. But hopefully things will settle down a bit once I get into some kind of routine. Just haven't quite gotten there yet. Thankfully we have people bringing us meals three-four times/week so that will really help us out! Thank you for your prayers as we adjust to life at home with all is incredible joys and stresses.

Leaving the Hospital!

Today was a GREAT day! We got to this morning and were anxiously waiting for the doctors to round on Caden so we could take him home. We had to wait awhile because they haven't been rounding until later in the day. But they made sure to do him first so we could get on our way. But the morning was filled with making sure we had all the right paperwork, making sure all the follow-up doctor appointments had been made with Caden's doctors in Sacramento, and just gathering all his belongings and supplies together. It's amazing how much time that can all take!

One of the cardiovascular surgeons came by to look at Caden's latest incision from the removal of the defective catheter. He said the sutures need to come out about two weeks after the surgery. That would be a week from this Sunday. We asked if our cardiologist could take them out. He said he wasn't comfortable with it because they use a product on the incisions here to help prevent infections that other doctors don't use. Because of this he said they want to remove the sutures themselves and also to make sure the wound is healing well. So they want us to come back in another week to have them taken out. We were joking with the surgeon that he needed to come to Sacramento and make a house call to remove the sutures. He said he might actually be willing to do that. We were surprised to say the least. But he said he might be going over to Sacramento anyway and if he did, he would be more than willing to do that for us. We will see what actually happens. He gave us his cell phone number and told us to call him on Thursday so we could decide what we needed to do. It would be great if he came to our house so we didn't have to make another trip over here so soon. But we'll see...

By the time they got everything taken care of and we were free to go, it ended up being after 1 pm. It was the strangest feeling to be able to pick up my baby and walk out of the room with him. He wasn't attached to anything and we could just leave. Today was the first day I got to hold Caden without a single tube, wire, or cord attached to him. After 8 weeks of leaving him at the hospital when we left, it felt very surreal to be able to take him with us. It was very strange, but wonderful at the same time.

Before we left the hospital, we made a visit to NICU to see if Caden's primary nurse, Irene, was working so we could say goodbye. Luckily she was there. She had been off for the last week and today was her first day back. We were glad she was there so we could let her know we were leaving and she could see Caden again. We wanted a picture with her with all three of us. She gave us her email address so we could keep in touch and we can send her pictures of Caden, etc.

Then, after leaving NICU, we went to CVICU to say goodbye to the nurses there and Amy, in particular. She had come up to Caden's room on her morning break to cuddle him for a few minutes. But we wanted to get a picture with her and the three of us as well. So we said goodbye to her and several other staff there before finally making our way down to the entrance. I put Caden in his car seat and we took him out to the car. It felt so weird to be able to drive away with him in the car with us.

Because we weren't sure what time Caden would be discharged and we didn't want to stress about trying to get checked out of the Ronald McDonald House by 10 am. So, we told them we were going to stay until Saturday. That way we didn't have to worry about rushing around, getting everything packed up and ready and then getting Caden and driving home in Friday afternoon traffic. So, we brought Caden back to RMH this afternoon, gave him his first feeding outside of the hospital and then he took a nice nap. He enjoyed quite a bit of awake time while we ate our dinner and then while we were back in our room packing. He just looked around and watched what we were doing. It was so sweet! He sleeps well so far and hopefully that continues. It's hard to say how he will do once he is able to stay on a schedule without it being interrupted for some procedure or another.

We are so looking forward to driving home tomorrow. Kyler has spent the last days with Natalie so we will stop and pick him up on our way home and we will have our homecoming all together as a family. It should be wonderful! Thank you all for your prayers as we have gone on this long journey. We know it is far from over and we hope you will continue to pray for us as we get adjusted to life at home. We will try to keep you updated on Caden's progress.

Saying goodbye to our social worker, Emily
All dressed and ready to go
Getting ready to leave the hospital
Saying goodbye to our primary CVICU nurse, Amy
Saying goodbye to primary NICU nurse, Irene
In carseat all ready to drive away!

Still on Track

On Wednesday, Caden was taken completely off the oxygen and handled it really wel. His saturation continued to be right around 100% or slightly less. Great news! We also worked with the OT to give him a feeding by mouth. The breast milk had to be thickened but he was able to drink 20 mls by bottle and the rest of the feeding, 40 mls, was given through the g-tube. We are only to do three bottle feedings a day and only 20 mls at a time. But it's a start. It will be several weeks or months before we are able to feed him exclusively by mouth.

Wednesday night, I drove home to spend the night there and take Kyler to a couple appointments on Thursday. It was great to sleep in my own bed again. And, even more great to know that by Saturday night we will be back here for good. I will drive back tonight so I can be there when Caden is discharged from the hospital! What a day that will be!

I believe there was no conclusion on whether or not to do a CT on Caden to look at his lungs and pulmonary system. So, that being said, he probably will not have one since they haven't done it by now.

This morning, he passed his car seat test. Before they let him leave the hospital to drive home, he had to do a car seat test which just means he had to sit in his car seat for two and a half hours, the length of the ride home. This allowed them to monitor his vitals in the position to see if he could tolerate it. He did great and didn't have any trouble at all.

The only thing we've had difficulty with is getting the prescriptions taken care of. It has been frustrating to deal with our prescription plan and try to get the prescriptions filled in the least expensive way possible. We're still trying to resolve it so hopefully that will happen soon. And, our home medical supplies are being delivered today to the hospital so we will be set to go home.

Otherwise, everything is set for us to be discharged tomorrow. Yippee!

Update

After talking to the nurse practitioner this morning, they feel that Friday is a reasonable discharge date for us!!! We are so excited! They are just working on getting all our supplies delivered to us here at the hospital so we can practice using everything before we go home and are on our own. It will be an adjustment having to administer all the meds and do all the feeds by ourselves, but I don't think it should be too difficult. Just a matter of transitioning.

Caden did a swallow study with the OT today. They gave him a thickened milk to see how it moved down his throat and esophagus. He did great with the thickened milk but when they tried it with thin milk like the consistency of breast milk, he didn't do as great. His vocal cords are still not completely protecting the airway so he aspirated the thin milk. So, for now, they will work with him on thickened milk by mouth. And whatever he doesn't drink by mouth will be given via the g-tube. I'm really happy that he is at least able to do something by mouth because that definitely gives us something to work with. And, it means he will probably be able to do full feeds my mouth at some point. It might just take awhile.

We are waiting to hear about when or if they will do the CT scan. In talking to the doctor, it sounds like Dr. Reddy has some concerns because they have to do some sedation in order to get the pictures they need. So the attending on 3W will be talking with him to discuss it further. If they do it, it will likely be Wednesday or Thursday.

The other thing I forgot to mention yesterday is they decided there is NOT a pneumothorax. This is good news for us as well. Things are definitely looking up. They are going to be working on weaning his oxygen off and weaning his Lasix down. After that we should be good to go. Positive news today for sure. Hopefully it continues that way.

Moving on Up... Again...

Well, after spending Sunday night in CVICU, Caden was moved back up to 3W early afternoon on Monday. We are so thankful for the nurse he had overnight in CVICU because she understood how much we wanted to get Caden back up to the amount of food he was getting before the last surgery. One of the things keeping us here is that they need to see that Caden is gaining weight every day. It's awfully hard to do that when they stop his feeds all the time for this or that. He was without food from 3 am – 11 pm on Sunday. So, between 11 pm and 6 am, his nurse took him from 10 mls/hour of continuous feeding to 50 mls of bolus feeding every three hours. I don't think all nurses would have been this proactive and we really appreciate that she made that a priority during her shift. Caden also had a fair amount of pain following his procedure. I'm sure he felt it more simply because he wasn't anesthetized for so long afterward as in previous surgeries so he woke up sooner and could feel the pain. She did a great job at managing his pain with Tylenol overnight as well.

After the surgery, the surgeons wanted Caden to have a five-day round of two antibiotics prophylactically to prevent any kind of infection from the procedure. They began giving them through the peripheral IV in Caden's left foot. However, by Monday morning, that IV had gone bad. The surgeons had specifically said that if the IV went bad, they could switch the antibiotics from IV to g-tube so he wouldn't have to get poked again for another IV. Cardiac babies are typically very hard sticks when it comes to IV's, lab draws, etc. So we were glad they said he wouldn't have to have another IV. However, when the time came and his IV went bad, the doctors in CVIUC decided that even though the surgeons said it was okay to switch him over to oral antibiotics, they still wanted him to get them via IV. Greg argued with them about this but they wouldn't budge.

Greg asked for a specialist to do the poke because Caden is such a hard stick. One of the CVICU fellows came to do it because I guess he spent a year as a phlebotomist doing just this and he was confident he could get it. Unfortunately he poked him twice and was unable to do it. The first poke started out good and looked like it would be a good vein, but then it blew. The second poke ended up in the arterial line which doesn't work for a PIV. So he said he wouldn't poke him anymore but brought in someone from vascular access to get one in. She used an ultrasound machine to find some good vein candidates. She was confident one of the two good ones she found would work but ended up not being able to get either one. As a last resort, she tried a very small vein in his leg and was finally successful. However because it is so small, they don't think it is going to last very long so that's frustrating!

One of the other things they want an IV for is t administer a contrast solution they can follow in a CT scan. The attending from third floor wanted to do a CT in order to determine the status of Caden's pulmonary system. She wanted to see if he truly has pulmonary hypertension or not and this will be a good tool to accomplish that. But they will probably need another IV on a bigger vein because they might not be able to do the contrast on such a small vein. One of the most aggravating things is that after we got back up to 3W, I was telling the nurse practitioner that the IV was in a small vein and wondered if that would work for CT. She said she didn't know for sure. But a little while later she came back and told me that in order to “save the IV”, they were going to switch his antibiotics from IV to oral. This is EXACTLY what the surgeons had said they could do but the other doctors in CVICU opposed. So, after being tortured and having five sticks to get one IV that they probably won't use for the CT, they have decided he can have oral antibiotics after all. SO frustrating!

We are really happy Caden is back up on third floor. Unfortunately the only bed available is in the intermediate ICU even though Caden doesn't need that level of care. And, this room has four beds in it and is much noisier than the last bed we had on third floor. It's also harder for us to take over the care because of space issues and trying to find where everything is. In the other room we had been in, we were able to settle in and we had all the supplies we needed within easy reach. So it's another adjustment for us. We're hoping they will be able to move him into another room as soon as a bed opens up.

In the meantime, the nurse practitioner is working on ordering all the supplies we need for going home in regards to the g-tube feedings, medications, etc. We are going to be talking to the pharmacy about the medications and getting a supply of that before we leave the hospital. And, the OT is going to start working with Caden on Tuesday on starting to drink from a bottle. Because he has a voice again, that means his vocal cords are working. But to learn to drink from a bottle requires stamina and strength which he hasn't had the opportunity to develop. And he needs to be able to coordinate the breathe-suck-swallow cycle. So, even if he is able to take some food by mouth, it may be several weeks before the g-tube can come out. Once he is able to drink from a bottle, we will probably start his feeds that way and then finish them through the g-tube when he gets tired. We will be working with an OT when we return home who specializes in feeding therapy.

That is where we are at right now. We will see what today holds. We hope to really focus and push the doctors in regards to discharge date. We are so done with being here and want to be home as soon as possible! Please pray that they are able to wean Caden off the oxygen so we don't have to bring him home on that. Please pray that he gains weight every day. And please pray that with increasing the volume of his feeds that all his medications will stay balanced and he will not have too much fluid in his body.

Return from OR

Caden just returned from the OR and we had an answer to our prayers. He did not have to be intubated at all! The anesthesiologists were able to use a mask to administer sedation and the whole procedure took only 10-20 minutes. Dr. Reddy was able to pull the piece of the catheter out easily. He gave me the piece of catheter they pulled out as well as a new catheter so we could see what it looked like. The new catheter has two small cuffs on it which are not supposed to come off of the sheath. However, when they pulled the line out, one of the cuffs remained in place inside Caden while the rest of the catheter came out. They said they had never seen this happen before, but obviously the catheter was defective. We asked if somebody was going to communicate with the company who manufactures the catheters to let them know about this and they said they were. We are glad about that, however, it doesn't change the fact that Caden had to have another surgery because of the defective product.

According to Dr. Reddy, he doesn't feel this will set us back too much. He said he wants Caden to remain without any feeds until around 11 pm tonight. Then, they will start those back up again. In a couple days, one of the surgeons will remove the bandages over the incision site. And, he thought we would be back up on third floor tomorrow. Of course this is dependent on bed space. So, please pray for bed availability and that Caden will recover quickly and we can again be homeward-bound. What a day!

Trip Back to the OR

Well, here is the latest. This morning they came up to 3W to get Caden and take him down to the CVICU Treatment Room. There were three cardiovascular surgeons in the room and two nurses when they tried to get the object out of Caden. They had taken an x-ray with a paperclip on the outside of Caden in order to get an idea of the size and specific location of the object so when they went back in they would know where to look. Unfortunately, after trying to get it out with local anesthesia and pain medications, they were unable to locate the item. So, this means he has to go back to the OR where they will have to intubate him again and do more exploratory surgery to find and extract the item.

Greg and I are devastated. We were almost home! Things had been going really well and now we are having a huge setback. The first time he was on the ventilator, it took 12 days to get him off. The second time he was on the vent, it took five days to come off. We are praying this time will go much faster but we just don't really know. At this point, it is really hard to think we will get out of the hospital by the end of this week. It is so discouraging when we felt we were almost out of here to now be back in the CVICU.

After spending many hours in the treatment room (ie storage closet we were in on Friday before moving upstairs), we were finally moved into a room in the PICU. There were no beds available in the CVICU, but the two units are together. So, we are back where we were last week. It is so frustrating! He will have to remain here until he is off the ventilator again and stable again before they move him upstairs again. And, of course the move is always dependent on bed availability.

It is so hard to believe that after all Caden has been through that he is being delayed in going home due to a defective catheter breaking off and leaving something inside. I mean, seriously, what are the odds of this happening? It can't be that high. But, leave it to Caden. He has been unique from the beginning and I guess he wants to continue to be so.

Right now we are waiting for the OR to open up so they can take Caden in for surgery. It is hard to believe we are in this position again. Please pray that they are able to find the foreign object quickly and get it out without too much trouble. And, please pray that he is able to come off the ventilator quickly and easily this time. We have been through too much for us to lose ground now.