Elijah had his appointment today at Children's Hospital. They did an x-ray to look at his lungs and they still look a little "wet" which means that we will continue the lasix three times a day. His incisions look good and are healing nicely. When we were discharged they were concerned that they may be a bit infected so he has been on antibiotics, but it has cleared up! What was really exciting was that he gained weight! He weighed 9lbs 9oz at discharge and today he weighed 10lbs 3oz! I have been really concerned that he wouldn't gain weight because he hasn't been eating very well. It is such a relief so know he is growing!
I have been back at work for two days now. Dion is tired, as he has been doing all the night feedings and Elijah is eating every two hours. He also took Elijah to his appointment today. My boys are lucky that they have a dad that is not afraid to be involved. Noah started full day preschool yesterday. He is a mess when he gets home. Although he really likes his school (and LOVES his new CARS lunchbox), by the time he gets home he is so incredibly tired that he is not a happy camper. Hopefully, if we can get him to bed early and napping every day again, maybe he will return to our happy go lucky kid again. Overall, I am just grateful to have us all together- tired, grumpy, and all!
Tuesday, July 31, 2012
Sunday, July 29, 2012
Nothing Like Home
We have been home for four days now and it has been so nice. You take for granted simple things like having your whole family together, sleeping in the same house and eating at the same table. Both Dion and I are incredibly tired. Elijah is not sleeping or eating well. For some reason he will only drink 1-2oz bottles. We also had to change bottles to get him to eat even this amount. This means that we need to feed him every two hours in order to meet his daily goal. This also means that he gets up several times a night to eat. However, I'm totally okay with the fact that he gets up. This means that he is actually feeling hungry and wanting to eat. I'm just so grateful to be home with him that I don't mind getting no sleep.
Noah is excited to have his little brother home and he even shares his blankie with Elijah. For those of you who know Noah, this is MAJOR. He loves his blankie.
I go back to work again tomorrow. It is so hard for me to relinquish Elijah's daily care to someone else. I am such a micro manager with him, it may actually do me some good to let some of it go. I am lucky that Dion will be taking care of him for the next two weeks and I can rest easy that Elijah will be in good hands. I am hopeful that our family can get back into our routine and and start to live life again. When your child is in the hospital for as long as Elijah has been, time stands still. It's as if someone hit the pause button on life. I am excited that we may actually get to hit the play button again.
Noah is excited to have his little brother home and he even shares his blankie with Elijah. For those of you who know Noah, this is MAJOR. He loves his blankie.
I go back to work again tomorrow. It is so hard for me to relinquish Elijah's daily care to someone else. I am such a micro manager with him, it may actually do me some good to let some of it go. I am lucky that Dion will be taking care of him for the next two weeks and I can rest easy that Elijah will be in good hands. I am hopeful that our family can get back into our routine and and start to live life again. When your child is in the hospital for as long as Elijah has been, time stands still. It's as if someone hit the pause button on life. I am excited that we may actually get to hit the play button again.
Thursday, July 26, 2012
We Flew the Coop!!!
Our little guy came home yesterday!!! Last night was the first night in three weeks that we all slept under the same roof. It was fantastic. Elijah is doing well and seems happy. He still has his fussy moments but is pretty content overall. I think he is still a little uncomfortable with the incision on his side. It started to open a little and seems tender. The doctors put him on an antibiotic to prevent an infection as it was looking a little red. He had so many stitches, I was worried they would forget to take one out! I made Dion look him over and sure enough he still had a few random ones. The nurse assured us they would remove the rest in a week when he goes back for a check-up. Although he is still not eating great, he is eating. Now we just need to get him to put some weight on. He is four months old and only weighs 10lbs. There are newborns that weigh that much. We also need to work on his head strength. Being sedated and laying on his back for the past three weeks seems to have weakened his muscles a bit. I'm going to have to get creative in coming up with ways to strengthen his muscles without straining his incisions.
Noah was very excited to have his little brother back. I think the last three weeks was tough on him. He is back in school doing half days until next week. I think getting him back into a routine will help a lot. The poor kid has been such a trooper through all of this. I'm sure the nurses were ready for us to go home. When Noah came to visit on Tuesday he accidentally hit the code blue button and the nurses came flying in. Yes, we are THOSE parents!
We have had so much support from friends and family through all of this and we are really grateful. I'm not sure how we would have gotten through this past few months without you all!!!
Noah was very excited to have his little brother back. I think the last three weeks was tough on him. He is back in school doing half days until next week. I think getting him back into a routine will help a lot. The poor kid has been such a trooper through all of this. I'm sure the nurses were ready for us to go home. When Noah came to visit on Tuesday he accidentally hit the code blue button and the nurses came flying in. Yes, we are THOSE parents!
We have had so much support from friends and family through all of this and we are really grateful. I'm not sure how we would have gotten through this past few months without you all!!!
Tuesday, July 24, 2012
Progress
The hospital is such a strange place where time both stands still and yet it races. Everything can be calm one moment and then scary the next. As of tomorrow, we will have spent three weeks at Children's Hospital. It has been quite the learning experience. Elijah is doing much better. Both Dion and I were very worried when Elijah refused his bottle. Just like with the diaphragm plication, this was not something we were prepared for. We had mentally readied ourselves for open heart surgery, but not for the complications that can accompany such a major operation. As of yesterday afternoon, Elijah was still refusing to eat. He would take a sip or two and then refuse any more. The nurse was convinced he was just anxious after being intubated twice in the last two weeks. One of the doctors thought that he may just be in a little pain and just overall not feeling well. He compared it to having a cold and not feeling well. You just don't want to eat when you don't feel good.
This was all well and good, but if he refused to eat, the doctors had to feed him through the ng tube. The ng tube made it more difficult for Elijah to eat and was keeping him in a constant state of fullness. He had no desire or need to eat when the tube would feed him. The nurse pulled the tube out yesterday knowing that that occupational therapist was coming. She also spaced the feed by four hours. This helped a bit, but not quite enough. The nurse wanted to replace the tube, but Dion and I were convinced that this was only going backward. He had been throwing up and Dion was sure it was because he was being over fed. The doctors were willing to work with us and gave us six hours to get him to eat 80mls. If we were not able to do this, the tube would go back in. Well our little fighter did it! Overnight, he fulfilled his requirement and kept the tube out. I hardly slept and instead just sat in the room waiting for his next feeding, praying he would eat enough.
This morning, they upped the goal to 500mls over 24hrs. So far, we are pretty much on track. Hopefully he continues to eat well through the night. Although I do not want to get my hopes up, the nurse practitioner told me that if he can meet his goals and everything else continues to look good, we would get to go home tomorrow. We have been here before where we were told we would get discharged and it kept getting pushed back. Hopefully three weeks is enough and our little guy will be ready to come home.
This was all well and good, but if he refused to eat, the doctors had to feed him through the ng tube. The ng tube made it more difficult for Elijah to eat and was keeping him in a constant state of fullness. He had no desire or need to eat when the tube would feed him. The nurse pulled the tube out yesterday knowing that that occupational therapist was coming. She also spaced the feed by four hours. This helped a bit, but not quite enough. The nurse wanted to replace the tube, but Dion and I were convinced that this was only going backward. He had been throwing up and Dion was sure it was because he was being over fed. The doctors were willing to work with us and gave us six hours to get him to eat 80mls. If we were not able to do this, the tube would go back in. Well our little fighter did it! Overnight, he fulfilled his requirement and kept the tube out. I hardly slept and instead just sat in the room waiting for his next feeding, praying he would eat enough.
This morning, they upped the goal to 500mls over 24hrs. So far, we are pretty much on track. Hopefully he continues to eat well through the night. Although I do not want to get my hopes up, the nurse practitioner told me that if he can meet his goals and everything else continues to look good, we would get to go home tomorrow. We have been here before where we were told we would get discharged and it kept getting pushed back. Hopefully three weeks is enough and our little guy will be ready to come home.
Monday, July 23, 2012
CV Acute and Feeding Issues
As of Saturday, our little guy was moved to CV Acute. This is the step-down unit. We were moved to a shared room which was a bit of a culture shock. The first night was a train wreck in that the little boy we shared the room with was really upset and screamed all night long. Elijah wasn't a happy camper either and no one slept.
They were able to remove Elijah's oxygen and his breathing actually improved. He wasn't breathing quite as fast and his sats stayed where they were supposed to be. The nurses where perplexed by the fact that he improved without oxygen. They started feeding through the NG tube to get his stomach used to having food in it again. He hadn't had any food by mouth or NG tube for over two weeks. Yesterday, the doctor allowed us to feed him with a bottle. I was positive that he would quickly down his bottle and we would be on our way out the door. I was wrong. Elijah wanted nothing to do with the bottle. He played with the nipple in his mouth and spit out any of the formula that was released in his mouth. He cried while I tried to get him to eat. I have no idea why this is happening. He was a great eater before surgery. He will take his pacifier with no problem but wants nothing to do with a bottle.
The nurse tried a paci-trainer, which is a pacifier with a hole punched in it and hooked up to a tube and syringe full of milk. Elijah was suppose to suck on the pacifier and have small amounts of milk go into his mouth to get the hang of sucking and swallowing again. He wanted nothing to do with that paci and yet he would take his own paci without a problem. I have no idea how to make him eat. As of last night, the doctors said we can't try to feed him by mouth anymore until the occupational therapist comes today to look at him. I did not expect any of this. Our nurse yesterday thinks that he is anxious to have something blocking his airway after having to be intubated twice. I just wish I knew how to help him. Hopefully the therapist will have some advice today. Wish us luck!
They were able to remove Elijah's oxygen and his breathing actually improved. He wasn't breathing quite as fast and his sats stayed where they were supposed to be. The nurses where perplexed by the fact that he improved without oxygen. They started feeding through the NG tube to get his stomach used to having food in it again. He hadn't had any food by mouth or NG tube for over two weeks. Yesterday, the doctor allowed us to feed him with a bottle. I was positive that he would quickly down his bottle and we would be on our way out the door. I was wrong. Elijah wanted nothing to do with the bottle. He played with the nipple in his mouth and spit out any of the formula that was released in his mouth. He cried while I tried to get him to eat. I have no idea why this is happening. He was a great eater before surgery. He will take his pacifier with no problem but wants nothing to do with a bottle.
The nurse tried a paci-trainer, which is a pacifier with a hole punched in it and hooked up to a tube and syringe full of milk. Elijah was suppose to suck on the pacifier and have small amounts of milk go into his mouth to get the hang of sucking and swallowing again. He wanted nothing to do with that paci and yet he would take his own paci without a problem. I have no idea how to make him eat. As of last night, the doctors said we can't try to feed him by mouth anymore until the occupational therapist comes today to look at him. I did not expect any of this. Our nurse yesterday thinks that he is anxious to have something blocking his airway after having to be intubated twice. I just wish I knew how to help him. Hopefully the therapist will have some advice today. Wish us luck!
Friday, July 20, 2012
Delirium?????
The good first... Elijah has been fever free for over 24 hours. They were able to pull out his chest tube and the wires that were attached to his heart. They were also able to wean down on the oxygen so that he could be fed through his feeding tube. They even decided to remove the oxygen all together and see how he handles it. So far, so good. He is actually breathing better without the oxygen than he was with the oxygen.
Now for the not so good... Elijah had a very rough night last night. With the constant interruptions and his already restless sleep, he was unable to really sleep at all. By the morning both he and I were a wreck. Elijah was inconsolable during the night and into the morning. He couldn't focus on you or really even make eye contact. During rounds, the doctors discussed his breathing further and they really do not know why he breathes so fast. His lung function is good, as is his heart.
The attending was concerned that perhaps Elijah is experiencing delirium, or ICU induced psychosis. He called in a psychiatrist. Do you know how strange it is to sit down with a psychiatrist to discuss the mental health of your 4 month old? Let me tell you, it was surreal. As you can assume, it is very hard to diagnose in an infant. They do have medicine to treat the condition, however, I would like to do everything else before we turn to medicine. They are going to reduce the amount of interruptions during the night and stop giving him adovan. We are going to try to "reset" his internal clock and make sure he gets caught up on sleep. Today's nurse gave him some benadryl and left him alone to take a 3 hour nap. He was so incredibly exhausted that he couldn't even fall asleep without some help. We made sure no one one came in the room to interrupt his sleep. When he finally woke up, he was able to focus on our faces and he was not crying. He seemed at peace for he first time in days. Hopefully tonight goes well and we may even be able to feed him a bottle tomorrow. Wish us luck!
Now for the not so good... Elijah had a very rough night last night. With the constant interruptions and his already restless sleep, he was unable to really sleep at all. By the morning both he and I were a wreck. Elijah was inconsolable during the night and into the morning. He couldn't focus on you or really even make eye contact. During rounds, the doctors discussed his breathing further and they really do not know why he breathes so fast. His lung function is good, as is his heart.
The attending was concerned that perhaps Elijah is experiencing delirium, or ICU induced psychosis. He called in a psychiatrist. Do you know how strange it is to sit down with a psychiatrist to discuss the mental health of your 4 month old? Let me tell you, it was surreal. As you can assume, it is very hard to diagnose in an infant. They do have medicine to treat the condition, however, I would like to do everything else before we turn to medicine. They are going to reduce the amount of interruptions during the night and stop giving him adovan. We are going to try to "reset" his internal clock and make sure he gets caught up on sleep. Today's nurse gave him some benadryl and left him alone to take a 3 hour nap. He was so incredibly exhausted that he couldn't even fall asleep without some help. We made sure no one one came in the room to interrupt his sleep. When he finally woke up, he was able to focus on our faces and he was not crying. He seemed at peace for he first time in days. Hopefully tonight goes well and we may even be able to feed him a bottle tomorrow. Wish us luck!
Wednesday, July 18, 2012
Post-Op Day 2
I wish I had better news to report. Sometimes I feel like such a negative person when I start talking about our days here at CHLA. On the positive side, he did have his breathing tube taken out yesterday. He was incredibly upset with the tube in and was getting increasingly agitated. He was upset for hours. They couldn't give him any real pain medication because they were afraid it would reduce his ability to breathe if they took him off the breathing tube. This left him in pain, which caused him to breathe even faster. It was a rough day. In the middle of the night last night, they ended up putting him back on high flow oxygen because he was working so hard to breathe. This morning they increased the oxygen even more because he was still retracting.
During rounds this morning, the doctors discussed possible reasons for his continued struggle to breathe. They really aren't sure what is going on. It could be that he needs to learn how to breathe with his diaphragm being tacked down. They ordered another echo and a stomach xray. He was coughing up blood this morning. They are fairly certain the blood is from changing the NG tube yesterday and possibly the breathing tube, but they want to confirm this. They also want to make sure the issue isn't related to his heart.
This afternoon, he spiked a fever and has continued to have a fever since. They started him on an antibiotic as well as tylenol and ordered blood cultures. It's possible that this is the cause for his breathing issues as well. No one knows why he is struggling. It has become very, very clear to me that the hardest part of being a parent isn't the lack of sleep or the crying or the neediness, it's watching your child truly be in pain, pain that you have never known and may never know, and you are absolutely powerless to stop it.
During rounds this morning, the doctors discussed possible reasons for his continued struggle to breathe. They really aren't sure what is going on. It could be that he needs to learn how to breathe with his diaphragm being tacked down. They ordered another echo and a stomach xray. He was coughing up blood this morning. They are fairly certain the blood is from changing the NG tube yesterday and possibly the breathing tube, but they want to confirm this. They also want to make sure the issue isn't related to his heart.
This afternoon, he spiked a fever and has continued to have a fever since. They started him on an antibiotic as well as tylenol and ordered blood cultures. It's possible that this is the cause for his breathing issues as well. No one knows why he is struggling. It has become very, very clear to me that the hardest part of being a parent isn't the lack of sleep or the crying or the neediness, it's watching your child truly be in pain, pain that you have never known and may never know, and you are absolutely powerless to stop it.
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