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.
Tuesday, July 17, 2012
Plication Post-Op Day 1
I wish I had better news. Elijah is still intubated. Dion spent the night at the hospital last night. When I left the hospital last night, he was on the breathing tube but breathing peacefully (in the 20's and 30's). This was great. Before they took him for surgery, he was in the 60's and at times up to the 100's. However, when I came back today, he is back in the 70's. His belly is absolutely huge and he is so uncomfortable. The NG tube that they use to help get the gas out was misplaced so gas was just building and building. They were able to get the NG tube in the right place this morning. He needs to get the gas out before they will extubate. They think part of the reason his breathing is so fast is because his belly is pushing up on his lungs. My poor baby. Not only does he have half a heart, but now his diaphragm function is decreased by half.
We are still hoping he gets extubated today. He hates the tube and it just serves to piss him off. I have to say that this little guy is quite the fighter!
We are still hoping he gets extubated today. He hates the tube and it just serves to piss him off. I have to say that this little guy is quite the fighter!
Monday, July 16, 2012
Surgery Update
Elijah is back in his room and it seems like the surgery went well. We haven't been able to talk to the doctors, but our nurse assures us that all went as planned. He is intubated again and has yet another chest tube. He seems to be in pain. I hate seeing him try to cry while being intubated. No sound comes out. Nothing. Just the the facial expression. It's awful. He does seem to be breathing better and much slower. He is more peaceful when his breathing is calmer. I believe the plan is to leave him intubated overnight and reassess in the morning.
On another note, we have had some really great nurses that genuinely care about our son and us. Some who have comforted us as we have cried. I am very grateful.
On another note, we have had some really great nurses that genuinely care about our son and us. Some who have comforted us as we have cried. I am very grateful.
Surgery
They will be taking Elijah for surgery any time now. They are going to place an incision on his left side and go in to pull and tack the diaphragm down. I am incredibly nervous and apprehensive. Elijah has been fussy all night last night and all day today. It's like he knows what is about to happen. They cited an 85% success rate with this surgery. I asked what options there would be if it didn't work and the resident didn't have an answer. Please keep Elijah in your prayers.
Sunday, July 15, 2012
The Waiting Game
Tomorrow we should know what the plan is to address Elijah's breathing. They decided to try the high-flow oxygen again today and try to wean him down to 4 liters. If he can tolerate 4 liters of high flow then they will try to begin feeding him small amounts through his ng tube. In the meantime, we just wait.
Saturday, July 14, 2012
Planning for Another Surgery
It was confirmed yesterday that Elijah's left diaphragm is paralyzed and that the muscle is pushing up on the left lung. He is breathing very fast to compensate. He should have 30-40 breaths per minute but he is much higher, even in the 100's at times. His oxygen levels are still good, which is amazing considering how much work he is doing to breathe. At this point, the goal is to not have to intubate him. We won't know for sure what the next step will be until Monday. I am almost positive that he will need an additional surgery to pull his diaphragm down and pin it in place. The ICU doctor can't confirm the surgery right now because that is a decision made by the surgeon. I am hoping they will be able to operate on Monday, but I doubt it will happen that fast. It is so sad to see him so miserable and working so hard to just breathe.
He is really, really fussy right now and we think that he is having headaches. We were warned that this will happen as the body, specifically the head, gets used to the new circulation. It's odd because the coloring in his feet is much better, but his nose is more dusky than before. They tried to advance his NG tube today into his intestines so that they might be able start feeding him through the tube tomorrow. He hasn't eaten anything since Sunday night. They don't want to put any food into his stomach for fear that he may throw up or cough and then aspirate. They will take an xray tomorrow to confirm the placement and then begin the feeding.
So for now we just wait.
He is really, really fussy right now and we think that he is having headaches. We were warned that this will happen as the body, specifically the head, gets used to the new circulation. It's odd because the coloring in his feet is much better, but his nose is more dusky than before. They tried to advance his NG tube today into his intestines so that they might be able start feeding him through the tube tomorrow. He hasn't eaten anything since Sunday night. They don't want to put any food into his stomach for fear that he may throw up or cough and then aspirate. They will take an xray tomorrow to confirm the placement and then begin the feeding.
So for now we just wait.
Friday, July 13, 2012
Post-Op Day 4... A Step Back
I was excited to get to post yesterday that our little guy got his breathing tube out. We all felt like that was a huge step forward. However, last night he was breathing really hard and he was put back on the high flow oxygen. This morning their is talk about putting him back on the breathing tube. They really aren't sure what is going on. The xray this morning showed that one of his lungs was higher than the other. They think that they may have damaged a nerve during surgery and that one of his lungs isn't working. They are going to take him for another xray to confirm this. If this is the case, he will require another surgery to fix his lungs. He just looks so miserable. I will keep you updated.
Wednesday, July 11, 2012
Post-Op Day Two
Well the little guy had a tough night. His art line kept bleeding and they needed to control it, he was having a tough time breathing so they put him on additional support, and he was thrashing around so they kept giving him pain meds until he was delirious so no more pain meds. Today has been a bit calmer. Although we were hoping to have his breathing tube out, he was able to get his chest tubes out today. We are hoping that makes him more comfortable. On a different note, Noah thinks this place is the best. He was able to go to the playroom today and he had a blast. Tomorrow we will try out the hospital library.
Tuesday, July 10, 2012
Post-Op Day 1
Elijah had his Glenn yesterday! Although it was very scary to send our baby away for surgery, we knew that he would be better in the end. The surgery itself went smoothly and was quick, but he did have quite a bit of bleeding that they needed to control and that took some time. We were a little worried when he didn't come back to the ICU as soon as we thought, but in the end it was ok.
As I said earlier, the surgeons weren't quite sure which procedure they were going to perform until they opened him up. They wanted to do the Glenn, which would be the next surgery anyway, but because he is still so young and so little, they weren't sure his body could handle it. Typically they want these little guys to be 6 months old and weigh 15lbs or so. Elijah is not even 4 months old and weighs barely 10lbs. But they were able to do the Glenn.
He is doing well so far, but he is on a lot of support still. He had high pressures in his lungs and needed to be put on Nitric. He still has a breathing tube and two chest tubes. His incision is closed this time and he has an NG tube. His coloring is so much better. On Sunday and Monday before the surgery, certain parts of his body, like his feet, were straight out purple. The doctors and the nurses like to say these kids are "dusky." This kid was straight out purple. He is nice and pink now!
Every day here in the CTICU we have goals and today's goals are to wean off of the Nitric, get the breathing tube out, maintain good numbers, and be calm. Just like Noah, Elijah is a busy little boy and every time he gets moving his pressures go up. So we are trying to keep him calm and allow his little body to get used to the new circulation. They have warned us that he will probably get headaches because his head isn't used to that much blood flow and that his head may swell. In other words, morphine and ativan are our friends.
As I said earlier, the surgeons weren't quite sure which procedure they were going to perform until they opened him up. They wanted to do the Glenn, which would be the next surgery anyway, but because he is still so young and so little, they weren't sure his body could handle it. Typically they want these little guys to be 6 months old and weigh 15lbs or so. Elijah is not even 4 months old and weighs barely 10lbs. But they were able to do the Glenn.
He is doing well so far, but he is on a lot of support still. He had high pressures in his lungs and needed to be put on Nitric. He still has a breathing tube and two chest tubes. His incision is closed this time and he has an NG tube. His coloring is so much better. On Sunday and Monday before the surgery, certain parts of his body, like his feet, were straight out purple. The doctors and the nurses like to say these kids are "dusky." This kid was straight out purple. He is nice and pink now!
Every day here in the CTICU we have goals and today's goals are to wean off of the Nitric, get the breathing tube out, maintain good numbers, and be calm. Just like Noah, Elijah is a busy little boy and every time he gets moving his pressures go up. So we are trying to keep him calm and allow his little body to get used to the new circulation. They have warned us that he will probably get headaches because his head isn't used to that much blood flow and that his head may swell. In other words, morphine and ativan are our friends.
Sunday, July 8, 2012
Surgery Tomorrow- July 8th
Tomorrow Elijah will go into surgery. They aren't sure if he will be getting the Glen (the 2nd in the 3 surgeries he needs) or if they will be redoing the Norwood (the 1st surgery). I am praying that he is able to get the Glen. To do the Norwood again feels like starting over and it would be adding another open heart surgery to the series that he already needs. They won't know which direction they will take until they open him up. It was scary sending him for open heart surgery the first time, but it feels even harder this time. Please keep our family in your thoughts and prayers.
Saturday, July 7, 2012
Prayers Please- Back in the CTICU
The title says it all. We went in on Thursday for Elijah's pre-Glen cath. It was fairly routine and the procedure itself went really well. He was able to stay on room air and the doctor didn't have to do any interventions. She was able to take all the pictures they needed and she got a great look at his heart. There is some narrowing of the shunt where it meets the artery, which means that he needs his next surgery (the Glen). When we got to recovery, he was on oxygen but sleeping. As he woke up, he was very agitated and started thrashing about. They tried tylenol but it didn't really do anything. They gave him some morphine and that seemed to relax him. He refused his bottle and just fell asleep in my arms. Things looked good so we were then transferred to CV Acute for observation for the night. For the next couple of hours I held him to keep him calm but his oxygen levels kept dropping and coming back up. Dion came with Noah and my sister joined us. Things were looking positive.
Dion left with Noah and that's when things got crazy. The little guy's oxygen levels were dropping and they weren't coming back up. The nurse started looking a little frantic and the charge nurse came in to help. They called the doctor for the floor but she didn't come. They waited and tried everything they could to help him but nothing was working. I picked him up and tried to calm him but his oxygen levels would not come up.
At that point the the nurse called the Rapid Response Team. If you aren't familiar with this term, this is the team of doctors and nurses that respond to code blue. That was one of the most frightening moments of my life. The nurse tells me that there are about to be a lot of people in the room. She wasn't kidding. The doctor finally comes and she and the nurse have a little argument and the room fills with people. When I counted, there were 15 people in his room. They surrounded his bed and orders were shouted across the room. They started pumping him full of fluids, oxygen, and morphine. The x-ray team showed up and blood was taken. His oxygen levels were still not responding. They started talking about needing to move him to the PICU or the CTICU because they were running out of interventions they could do on the floor. One of the nurses told me to pack my stuff, and we would be moving in a bit. The room was still full of people. A social worker came to check on me and the doctors started to explain that they weren't sure what was going and that they may need to intubate him in order to breath for him. The next thing I know, they are throwing monitors on his bed and rushing him to the CTICU.
When we get to the CTICU, it is full of nurses. They are frantically preparing his room and getting all the medications ready. Several nurses move him to his new bed and they start efforts to get him to breath better. Things were being thrown on the ground and everyone was moving at a fast pace. They were finally able to get his oxygen levels up, although not where they should have been.
He is still in the CTICU and needing assistance to breath. They would like get him breathing on his own, or with a little assistance, so that they could send him home to gain a little weight before his next surgery. He only weighs 10lbs and ideally he would weigh 16lbs or so. However, right now, sending him home doesn't seem to be likely. The other option is to move forward with the Glen next week. The downside to that, beside him being so little, is that his surgeon is completely booked next week. I trust his surgeon and it scares me to put my little baby in the hands of someone else.
We should know within the next 24 to 48 hours what the long term plan will be. I ask anyone who reads this to please keep our little guy in your thoughts and prayers.
Dion left with Noah and that's when things got crazy. The little guy's oxygen levels were dropping and they weren't coming back up. The nurse started looking a little frantic and the charge nurse came in to help. They called the doctor for the floor but she didn't come. They waited and tried everything they could to help him but nothing was working. I picked him up and tried to calm him but his oxygen levels would not come up.
At that point the the nurse called the Rapid Response Team. If you aren't familiar with this term, this is the team of doctors and nurses that respond to code blue. That was one of the most frightening moments of my life. The nurse tells me that there are about to be a lot of people in the room. She wasn't kidding. The doctor finally comes and she and the nurse have a little argument and the room fills with people. When I counted, there were 15 people in his room. They surrounded his bed and orders were shouted across the room. They started pumping him full of fluids, oxygen, and morphine. The x-ray team showed up and blood was taken. His oxygen levels were still not responding. They started talking about needing to move him to the PICU or the CTICU because they were running out of interventions they could do on the floor. One of the nurses told me to pack my stuff, and we would be moving in a bit. The room was still full of people. A social worker came to check on me and the doctors started to explain that they weren't sure what was going and that they may need to intubate him in order to breath for him. The next thing I know, they are throwing monitors on his bed and rushing him to the CTICU.
When we get to the CTICU, it is full of nurses. They are frantically preparing his room and getting all the medications ready. Several nurses move him to his new bed and they start efforts to get him to breath better. Things were being thrown on the ground and everyone was moving at a fast pace. They were finally able to get his oxygen levels up, although not where they should have been.
He is still in the CTICU and needing assistance to breath. They would like get him breathing on his own, or with a little assistance, so that they could send him home to gain a little weight before his next surgery. He only weighs 10lbs and ideally he would weigh 16lbs or so. However, right now, sending him home doesn't seem to be likely. The other option is to move forward with the Glen next week. The downside to that, beside him being so little, is that his surgeon is completely booked next week. I trust his surgeon and it scares me to put my little baby in the hands of someone else.
We should know within the next 24 to 48 hours what the long term plan will be. I ask anyone who reads this to please keep our little guy in your thoughts and prayers.
Monday, July 2, 2012
Plans... Why do we make plans?
Seriously. I think God is trying to teach me a lesson. Even the best laid plans, the most thought out systems, the most stringent adherence to the rules, and we still get crapped on. Seriously? Even before Elijah was born, we knew that he could not get sick. We started taking better care of ourselves, eating better, and taking stock in hand sanitizer (it is all over my house). Dion and I were not getting sick, and even Noah was able to ward off colds. Things were looking good... until June. If you read my previous posts, you already know that we have fought one round of illness that ended with Elijah being admitted to the hospital for a week. Then, less that two weeks after discharge, it hits again. Dion, Noah, Dion's sister, and Dion's niece all get sick. The little guy manages to fight it off for a while, but finally gets the sniffles as everyone else is recovering. Of course I am freaking out. However, he keeps drinking and his oxygen levels are ok (not great, but ok) and we are able to stay home. Noah never really recovers and I ended up having to take him to the doctor last week only to find out that he has double ear infections, poor guy. Dion had been feeling better but, as of today, is now down for the count again. We just can't seem to kick it.
I took Elijah to his once a month, marathon cardiologist appointment on Tuesday. His cardiologist had been concerned about his dropping oxygen levels at his last appointment and had scheduled his cath for July 5th. On Tuesday, he was really concerned and wanted it moved up to Thursday (a week early). He admitted that they were cathing him earlier than typical but they need to see what is going on. He also said that it is possible that they could decide to do his next open heart surgery with the admittance for the cath. Wow... I wasn't quite prepared for that. Of course, it depends on what they see when they go in, but we need to be ready.
My emotions are so conflicted. On one hand, I am excited for him to get the Glen (his next surgery) so that he can be more stable and not so fragile. On the other hand I am terrified to send my tiny little baby under the knife again. I just can't get the image of his open chest out of my mind. They say this procedure is easier than the first. I guess I have to take their word for it. His little chest has healed so nicely and if you don't see the scars, you wouldn't even know something was wrong with him. It will all be opened up again. He will be in so much pain again. Pain that I can't take away.
On another, happier note, we are trying to enjoy our summer. Although we have been fairly housebound this summer, I was able to take both boys to the beach with the help of my sister on Saturday. We had a tent of sorts for the baby and lots of sunblock for Noah. Noah was scared of the ocean, but loved the sand. Of course even with lots of sunscreen and the shade of our little tent, I burnt like a lobster. Noah also started swimming lessons today. Dion took him and said that he seemed to really enjoy it. We really are trying to keep life moving forward with Noah. His Aunty comes over every week and takes him places and he is one happy camper. Dion and I were able to get away for a couple of days with the help of my mom and sister. It was nice to relax and have some time together without the stress of daily life. Even though we are living in a kind of purgatory right now, I truly do have so very much to be grateful for and so many people have helped and supported us through all of this. Although it may sound strange, I can honestly say that we have been blessed.
I took Elijah to his once a month, marathon cardiologist appointment on Tuesday. His cardiologist had been concerned about his dropping oxygen levels at his last appointment and had scheduled his cath for July 5th. On Tuesday, he was really concerned and wanted it moved up to Thursday (a week early). He admitted that they were cathing him earlier than typical but they need to see what is going on. He also said that it is possible that they could decide to do his next open heart surgery with the admittance for the cath. Wow... I wasn't quite prepared for that. Of course, it depends on what they see when they go in, but we need to be ready.
My emotions are so conflicted. On one hand, I am excited for him to get the Glen (his next surgery) so that he can be more stable and not so fragile. On the other hand I am terrified to send my tiny little baby under the knife again. I just can't get the image of his open chest out of my mind. They say this procedure is easier than the first. I guess I have to take their word for it. His little chest has healed so nicely and if you don't see the scars, you wouldn't even know something was wrong with him. It will all be opened up again. He will be in so much pain again. Pain that I can't take away.
On another, happier note, we are trying to enjoy our summer. Although we have been fairly housebound this summer, I was able to take both boys to the beach with the help of my sister on Saturday. We had a tent of sorts for the baby and lots of sunblock for Noah. Noah was scared of the ocean, but loved the sand. Of course even with lots of sunscreen and the shade of our little tent, I burnt like a lobster. Noah also started swimming lessons today. Dion took him and said that he seemed to really enjoy it. We really are trying to keep life moving forward with Noah. His Aunty comes over every week and takes him places and he is one happy camper. Dion and I were able to get away for a couple of days with the help of my mom and sister. It was nice to relax and have some time together without the stress of daily life. Even though we are living in a kind of purgatory right now, I truly do have so very much to be grateful for and so many people have helped and supported us through all of this. Although it may sound strange, I can honestly say that we have been blessed.
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