September 24, 2007
Today has been a very momentous day thus far. John and I took Hyrum to the hospital this morning at 8:15 am. He was in surgery by 10:00am. We received phone calls about every hour from the nurse in the surgical room to keep us updated. The Surgeon came and found us about 1:20 pm as he had completed the surgery.
Today has been a very momentous day thus far. John and I took Hyrum to the hospital this morning at 8:15 am. He was in surgery by 10:00am. We received phone calls about every hour from the nurse in the surgical room to keep us updated. The Surgeon came and found us about 1:20 pm as he had completed the surgery.As you remember from previous emails, Hyrum had a 10% chance of success and many possible negative side effects. We received many emails and phone calls about why we would risk the chance of the complications being so great. Our answer was that 10% was better than the 0% if we did nothing.
So we trusted in a loving Heavenly Father and went forward with the surgery. Everything went very well. When Hyrum was 5 weeks old he had 4 surgeries in 4 days. Two of those surgeries were to tack his intestines in place to prevent them from coming out through his stoma (poop hole) or his mucus fistula (the other half of his intestine). During the surgery, they unhooked the tacks of the lower part of his intestine to make sure the surgeon had plenty of intestines to pull the end down to its rightful place. To his surprise, he did not need to have done that as there was plenty of intestines to play with and pull with! The Surgeon was able to do the procedure with minimal incisions and feels that Hyrum will not have much pain. He will have a catheter for about 5 days to allow the fistula (the part that they cut the intestine off from) to heal. At this point, if all goes well, we will be able to go home.So if you didn't catch what happened...the surgery was SUCCESSFUL!!!!!!!!!!!!!
We will be here for about 5-7 days and hope that he will stay healthy and not catch anything again that would prolong his stay any longer then is needful.
We, of course, are not out of the woods, he still has one more surgery to go through. In about 3 weeks we will use dilators to help his rectum to grow to the appropriate size. When it is the right size than they will go in and attach his intestine back together. Then we will see how successful he can stool on his own.
We appreciate your prayers and feel that we have truly been blessed and that all of our prayers combined have been answered. We mentioned to Dr. Downey that he had about 100 people praying for him and his response was that he truly felt those prayers.
We ask you to continue in your prayers on Hyrum's behalf. We love each of you and are grateful for your support.
Responses that we got from family and friends:
From my Uncle Ted
It is tough to make some decisions. However, you had accumulated the information and you made a decision on the calculated risks. The hardest decision to make if you are a pilot is the one about when to bail out of a crippled aircraft. The timing of that decision is everything about success or failure
This decision had some timing issues with it. You could have waited for months or years to make this decision about moving forward with this surgery. However, the decision would have been made for you - probably. This is because Hyrum's immunity system would have not been sufficient to have lived for those months or years to make that decision. His health was not getting better each week. You were struggling with trying to keep him well enough to have the surgery. You made the right choice to proceed forward. As so often happens - when the doctor got more information - his worst fears were less than what he thought.
I am thankful for your success to this point. You have demonstrated the ability to make these kinds of difficult decisions when so much hangs in the balance. I am very glad that you listened to your inner compass on this subject and not to those who had other thoughts. Hyrum will be the better for it - even if there are other complications later that are unforeseen at this point.
From a neighbor and good friend Barbara Stoddard
I am so grateful and relieved to hear your news. Becky forwards your E-Mails to me. How can we help the family? Would it help to have the girls come here after school (except Tuesdays we are at the Employment Center until 5:00)? Would it help to have your family come here for dinner each day? Anything I can do, I'd love to help. I will continue to keep Hyrum in my prayers. Give that cute little guy a kiss for me.
Yesterday, John took his computer with us to the hospital to work while we wait. He discovered that the hospital provides internet throughout the hospital for those with laptops....like us!!
So today John brought with him my laptop so that I can read my emails and send emails out right from our room without leaving Hyrum!
Yesterday, with John's computer, I was able to give you each the exciting news about Hyrum's very successful surgery. We had just talked with the Dr. but had yet to see Hyrum yet.
Hyrum enjoyed the anesthesia very well and slept for about 2 hours after his surgery. Though he reacts very harshly to Morphine, the anesthesiologists wanted to try a drip system and see if this would work for him instead of receiving a large dose all at once. As I was allowed to finally go back to the Post Operation room to see Hyrum, he reacted to the very small amount of Morphine given to him and he quit breathing. I usually handle crisis very well, I was not prepared to walk in on the beginnings of him not breathing. They were able to act quickly and get him breathing in the max of a minute (though it seemed longer). It took about 2 hours to stabilize him enough to move him to ICU (instead of the infant unit & his own room). John and I were not allowed into ICU while they were getting him settled and the nurses were exchanging the information. While we waited we went and got dinner as it was 6 pm by then. By the time we got back, they were ready for us. We were very upset to find that he was still in a lot of pain and instead of giving him what we asked for him to get, they gave him another small dose of Morphine. So within minutes, he was not breathing again. Luckily he did not go down far in his numbers, but it was enough that the resident doctors finally listened to us and gave him Fentanyl...which we know he doesn't have a problem with. Fentanyl and Morphine are in the same class, but Fentanyl is more potent, so they were very wary about giving it to Hyrum. They started in very small doses. His nurse finally convinced the doctors to up his medication, Hyrum finally got comfortable about 11 pm and was able to finally sleep, having been awake since about 3:30 pm.
I found myself a couch from about midnight until 4:30 am. I found Hyrum to be sleeping very well and his pain finally under control. Another mom that I met who had received a parents room, at that point offered her room to me as she couldn't sleep anymore. I went to lay down about 5:45 am and slept soundly until about 7:40am. I was allowed back in his room at 8 am to find talk of letting him go to the infant unit and his own room. One condition was that he not be on the Fentanyl, so they changed his medication to a drug called Dilaudid. This is another drug that is in the same "class" as Morphine and Fentanyl. This all occurred around 12:00 pm. And he was moved from ICU to the infant unit at 12:30pm.
Unfortunately, we learned that Dilaudid is another drug that he has diverse reactions to. John was able to experience his first red line with Hyrum. He told me afterward that he completely related to my experience from yesterday, where you feel like you just need to stand back and let everybody take over that know what they need to do. I was standing next to Hyrum's bed when he stopped breathing. I was able to help the nurse get better oxygen for him as the room filled with, what seemed like the whole hospital staff. The poor resident doctor and the nurse from ICU both came to his room in total shock that he would quit breathing again! The head nurse allowed Hyrum to stay in the infant unit for the day and if he did not have any more episodes than he could stay, otherwise he would have to go back to ICU. The Doctor took him off of Dilaudid and allowed him to be put back on Fentanyl even though he was in the infant unit, as it seemed to be the only drug he could handle.
He has slept for most of the day. He has started to retain water due to the stress on his body. His respiratory is also struggling, so he is being tested for different viruses. He is also running a temperature of about 100 degrees. About 5:30 pm we finally woke up for the first time today and drank about 60 ml of Pedialyte. This was the max he could have to make sure that he doesn't overdo his stomach or intestines. He is sleeping peacefully now and has not had any other problems.
With such a smooth sailing surgery, we are not surprised that we are not having a smooth sailing recovery. I have seen the true meaning of absolute pain in the eyes of my 6-month-old.
I would like to thank each of you for your love and support. I love reading each of your encouragement and gain strength from your prayers and love. I apologize for not responding to each of your emails personally, but I want to thank you for them. I treasure them dearly. I would also like to thank you for your continued prayers. I think we are each being blessed by this wonderfully sweet little guy.
So today John brought with him my laptop so that I can read my emails and send emails out right from our room without leaving Hyrum!Yesterday, with John's computer, I was able to give you each the exciting news about Hyrum's very successful surgery. We had just talked with the Dr. but had yet to see Hyrum yet.
Hyrum enjoyed the anesthesia very well and slept for about 2 hours after his surgery. Though he reacts very harshly to Morphine, the anesthesiologists wanted to try a drip system and see if this would work for him instead of receiving a large dose all at once. As I was allowed to finally go back to the Post Operation room to see Hyrum, he reacted to the very small amount of Morphine given to him and he quit breathing. I usually handle crisis very well, I was not prepared to walk in on the beginnings of him not breathing. They were able to act quickly and get him breathing in the max of a minute (though it seemed longer). It took about 2 hours to stabilize him enough to move him to ICU (instead of the infant unit & his own room). John and I were not allowed into ICU while they were getting him settled and the nurses were exchanging the information. While we waited we went and got dinner as it was 6 pm by then. By the time we got back, they were ready for us. We were very upset to find that he was still in a lot of pain and instead of giving him what we asked for him to get, they gave him another small dose of Morphine. So within minutes, he was not breathing again. Luckily he did not go down far in his numbers, but it was enough that the resident doctors finally listened to us and gave him Fentanyl...which we know he doesn't have a problem with. Fentanyl and Morphine are in the same class, but Fentanyl is more potent, so they were very wary about giving it to Hyrum. They started in very small doses. His nurse finally convinced the doctors to up his medication, Hyrum finally got comfortable about 11 pm and was able to finally sleep, having been awake since about 3:30 pm.
I found myself a couch from about midnight until 4:30 am. I found Hyrum to be sleeping very well and his pain finally under control. Another mom that I met who had received a parents room, at that point offered her room to me as she couldn't sleep anymore. I went to lay down about 5:45 am and slept soundly until about 7:40am. I was allowed back in his room at 8 am to find talk of letting him go to the infant unit and his own room. One condition was that he not be on the Fentanyl, so they changed his medication to a drug called Dilaudid. This is another drug that is in the same "class" as Morphine and Fentanyl. This all occurred around 12:00 pm. And he was moved from ICU to the infant unit at 12:30pm.
Unfortunately, we learned that Dilaudid is another drug that he has diverse reactions to. John was able to experience his first red line with Hyrum. He told me afterward that he completely related to my experience from yesterday, where you feel like you just need to stand back and let everybody take over that know what they need to do. I was standing next to Hyrum's bed when he stopped breathing. I was able to help the nurse get better oxygen for him as the room filled with, what seemed like the whole hospital staff. The poor resident doctor and the nurse from ICU both came to his room in total shock that he would quit breathing again! The head nurse allowed Hyrum to stay in the infant unit for the day and if he did not have any more episodes than he could stay, otherwise he would have to go back to ICU. The Doctor took him off of Dilaudid and allowed him to be put back on Fentanyl even though he was in the infant unit, as it seemed to be the only drug he could handle.
He has slept for most of the day. He has started to retain water due to the stress on his body. His respiratory is also struggling, so he is being tested for different viruses. He is also running a temperature of about 100 degrees. About 5:30 pm we finally woke up for the first time today and drank about 60 ml of Pedialyte. This was the max he could have to make sure that he doesn't overdo his stomach or intestines. He is sleeping peacefully now and has not had any other problems.
With such a smooth sailing surgery, we are not surprised that we are not having a smooth sailing recovery. I have seen the true meaning of absolute pain in the eyes of my 6-month-old.
I would like to thank each of you for your love and support. I love reading each of your encouragement and gain strength from your prayers and love. I apologize for not responding to each of your emails personally, but I want to thank you for them. I treasure them dearly. I would also like to thank you for your continued prayers. I think we are each being blessed by this wonderfully sweet little guy.
I try to keep up on my sleep, when I'm exhausted, I also get cranky, but I'm very emotional and little things set me to fill the buckets with tears. As you well know, it is so hard to see the physical almost touchable pain in Hyrum's eyes and there isn't anything I can do. But the nurse finally got him a large enough dose, that he has rested most of yesterday and through the night. Today will be a better day for him.
September 26, 2007
Now that he is all "hooked up" meaning he has a normal outside entrance for his poop, we (meaning me) have to exercise his anal muscle. We use what is called dilators, that I have no clue what those actually are, to stretch this muscle to open to a specific size. This will take about 3-4 months. During this time he will still have his poop bag. His new rectum needs time to heal and having poop running through it will not help any.
After this muscle can open and close to a specific size than we will come back for his final surgery. Here they will reconnect his intestine and remove his poop bag. Within a few days of observation, we will know what type of "pooper" he is. There are three types that he could be classified as. The first is a "runner" meaning that he will have no control of stopping the stool from coming out, thus he will wear a diaper for the rest of his life. This is the hardest type to determine as you can't say hold it and expect an (at that time) 9 month old to hold his stool and see if he can. The second is a"normal" pooper, meaning normal stool movements, right in the middle kinda pooper. Then there is the "constipated" pooper. This will be the easiest type to figure out because he will either flow or he won't. If he happens to be constipated than he will have to have an enema every time he needs to go to the bathroom. According to the doctor, if your choice is a runner or a constipated, it is better to be constipated, because you can choose when to relieve yourself and not need a diaper.
The interesting thing is that at any point in his life he could change from one type to another. We met a man whose nephew had the same issue. All growing up until he was about 18, he wore a diaper. And all of a sudden, the muscle started to work and he no longer needed a diaper and was able to relieve himself like everybody else in the world.
Hope this answers your questions. It is nice to know someone is thinking about him and wondering what his future holds for him.:)
The interesting thing is that at any point in his life he could change from one type to another. We met a man whose nephew had the same issue. All growing up until he was about 18, he wore a diaper. And all of a sudden, the muscle started to work and he no longer needed a diaper and was able to relieve himself like everybody else in the world.
Hope this answers your questions. It is nice to know someone is thinking about him and wondering what his future holds for him.:)
Email From Uncle Ted
If you had not been attentive to Hyrum his red line would have been permanent. I have seen this before that the medical staff makes decisions on part of the data. There have been many medical studies that have shown that they preliminary exclusions that occur in the first few minutes. By making these preliminary decisions they miss the larger picture.
Life has a way of discovering who we really are. I like what I see in what life is discovering about you.
Email in Response to the above to Uncle Ted
Thanks for your vote of confidence. I have truly had to do a lot of the thinking around here. We weren't quite sure why they would give him morphine when that was clearly what put him in ICU in the first place. They didn't make that mistake again, and I haven't left him long enough to allow it either.
By being here I have learned that if you want something to happen, you can't sit on the sidelines and wait for it, you have to push and go after it or it will never happen.
Luckily Hyrum's actual surgeon is willing to discuss his decisions with us, so that we better understand where he is coming from, but will listen enough to see where we are coming from.
It is just the rest of the doctors that I have problems with.
These last few months have really forced me out of my shell, as I really am not a fussy person and allow people to run me over and I just work with it.
Though I have learned that I can get out of my shell and really put my foot down...I still like the look and feel of my shell...I guess it's time to redecorate!:)
But you are right, we are not out of the woods yet. It will take Hyrum months to recover. Each surgery seems to take a little more out of him. I fear that it will take him the next 3 months to recover, which will be about the time he will have his final surgery. From there he should not have another until he is three. I think he will have plenty of time to recover and he will just grow and get very healthy. He has been small for his age, but I think it is just his body trying to recover and not concentrating and growing right now...but he will.
By being here I have learned that if you want something to happen, you can't sit on the sidelines and wait for it, you have to push and go after it or it will never happen.
Luckily Hyrum's actual surgeon is willing to discuss his decisions with us, so that we better understand where he is coming from, but will listen enough to see where we are coming from.
It is just the rest of the doctors that I have problems with.
These last few months have really forced me out of my shell, as I really am not a fussy person and allow people to run me over and I just work with it.
Though I have learned that I can get out of my shell and really put my foot down...I still like the look and feel of my shell...I guess it's time to redecorate!:)
But you are right, we are not out of the woods yet. It will take Hyrum months to recover. Each surgery seems to take a little more out of him. I fear that it will take him the next 3 months to recover, which will be about the time he will have his final surgery. From there he should not have another until he is three. I think he will have plenty of time to recover and he will just grow and get very healthy. He has been small for his age, but I think it is just his body trying to recover and not concentrating and growing right now...but he will.
September 26, 2007
Report as of 4:30am
The surgeon was ok with how big he was, they are going to keep a close eye on him.
He ate at midnight and at 3 he was awake but not interested, but fussy like he didn't feel good.
at 4:00 he pucked everything he ate from midnight...not a great sign.
So the surgeon doesn't want him to eat anything until later on today and they have him back on IV.
He is still swollen, but he hasn't had enough intake so they have to put him on the IV.
He is also peeing in his diaper. Not a great thing. The nurse forgot to ask the surgeon about this and has paged him again.
at 5:00 am we have turned his oxygen back up from .3 to .4 as his breathing has gone back down. He can't get his oxygen level into the 90's. He is struggling. He may not have a virus, but he is one sick puppy.
I'm going back to sleep for a while.
The surgeon was ok with how big he was, they are going to keep a close eye on him.
He ate at midnight and at 3 he was awake but not interested, but fussy like he didn't feel good.
at 4:00 he pucked everything he ate from midnight...not a great sign.
So the surgeon doesn't want him to eat anything until later on today and they have him back on IV.
He is still swollen, but he hasn't had enough intake so they have to put him on the IV.
He is also peeing in his diaper. Not a great thing. The nurse forgot to ask the surgeon about this and has paged him again.
at 5:00 am we have turned his oxygen back up from .3 to .4 as his breathing has gone back down. He can't get his oxygen level into the 90's. He is struggling. He may not have a virus, but he is one sick puppy.
I'm going back to sleep for a while.
Though the day is not over, I thought I would drop a little note and a few pictures.I had forgotten my camera, so today John brought it to me. The difference between pictures today and pictures I could have taken the past few days is that he isn't in pain today. He is more peaceful and content.
Today they allowed him to drink his mommy milk. As most of you know, he doesn't actually nurse. I have learned how to pump and hold him while he drinks from a bottle so as to gain one hour in every three back in my day. So he started by only being able to stay awake to drink about 2 oz. He eats about every two hours because he is so weak. By the end of the day, he is up to about 2 1/2 oz. He gets tired very quickly and sleeps the rest of the time.
Due to the stress on his body, he has started to retain water. He was weighed this evening and he has gained a full pound since yesterday.
He is off is IV and most of his pain medication. They are still lowering his oxygen level. He has it more for the nurses' sanity, but I don't think it hurts him either. But I imagine by tomorrow it will be off. He mostly needs sleep to allow his body to heal, so I keep the nurses at bay the best I can.
We also received our own personal room today. We have been sharing a room with another baby, but today a social worker was able to get us a private room. It is nice to have that bit more privacy.
Thank you for your prayers, we are seeing the results of them as he is healing.
We love you all and my your own lives be blessed with this simple act of kindness.
September 27, 2007
I just talked with the surgeon.
His catheter was clogged and he was urinating in his diaper. The nurse flushed the catheter and it did so easily, but it has blood coming out of it along with his urine. Because he puked about 4 am, they are not allowing him to eat, so he has been hooked up to the IV again. The surgeon will be watching Hyrum very closely today. If he urinates in his diaper or blood continues to come through then they will need to take a close look at what is going on. For now, they don't want to disturb him too much and they aren't sure if the puking and the urine thing are related yet.
He is truly a special child with a special purpose. He seems to have to take the hard walk in life. I hope that someday his experience will be put to good use and benefit others
I have brought things like my computer, and my pictures to be put in my kids' picture books, but I haven't really gotten any sleep since I have been here and today will be no different.
I will finish my breakfast in hopes for a few minutes to lay down before he is called to go get his tests done. And my sister will be coming for a few minutes also. Her college is very close to the hospital so she comes when she has a few minutes.
I have brought things like my computer, and my pictures to be put in my kids' picture books, but I haven't really gotten any sleep since I have been here and today will be no different.
I will finish my breakfast in hopes for a few minutes to lay down before he is called to go get his tests done. And my sister will be coming for a few minutes also. Her college is very close to the hospital so she comes when she has a few minutes.
An Email to my brother Jonathan
Everybody else I'm making them wait for info...but today has not been a great day.
He threw up at 4 am, his stomach is swollen to concerning levels and he has started to pee blood out his catheter. They are running tests today and see what is happening, so I'll give the results later. I'm shocked at how one day everything is going great and the next nothing is going right.
He threw up at 4 am, his stomach is swollen to concerning levels and he has started to pee blood out his catheter. They are running tests today and see what is happening, so I'll give the results later. I'm shocked at how one day everything is going great and the next nothing is going right.
Email from my cousin Mike Boger, who at the time was in Medical School
It is funny that I got your emails today (Wendy forwards them to my school account).
I had a lecture on narcotics today and you should send an email about Hyrum's problems with Morphine.
I had a lecture on narcotics today and you should send an email about Hyrum's problems with Morphine.
What is interesting is the adverse reaction he had to it. A NORMAL reaction to Morphine is a depressed respiratory function. It is temporary and very normal, but I am sure it was scary. I think that is why they tried to titrate him instead of a bolus the second time. Another normal reaction is constipation, so make sure they are helping with his defecation because you don't want him straining on a dookie with a brand new rectum!!
I erased the emails before I wrote down the meds he is on now, but I think it was Dilaudid? That one is called "drug store heroin", so you can tell him when he gets older that he was on heroin! (actually, ALL the morphine derivatives are similar to heroin).
I was concerned when your docs didn't listen to you the THIRD time they gave him Morphine. There are TONS of other pain meds that they could use; oxycodone, Vicodin, Demerol, Percocet, Lortab, etc; so why are they stuck on Morphine if he had such a bad reaction?
I'm glad he is off Fentanyl - it is 100X more potent than street heroin. It is a highly abused substance, but it works great if that is all he can tolerate. I'm sure by the time you read this, he'll be off most of the pain meds and Oxygen.
Take care of that kid!! I'd better get back to studying all about the brain! See ya!!
Email in response to Mike's Email
It must be fun to have real-life experience as you learn them in school!
Hyrum's Drug Issues
From my understanding, with Hyrum's first surgery they used Fentanyl. He had no problems. In fact, he was off the pain medication within 24 hours. One week later he had his second surgery, I guess with the tiny babies they use Fentanyl because I'm sure that is what they used again.
When he was about 5 weeks old, we went back to the hospital for a prolapsed stoma. They gave him morphine at this time to help with the pain, but finally, put him under to stitch him closed. The next day they put him back into surgery to redo his stoma and mucus fistula and they stitched his upper intestine to his abdominal wall. His heart dipped in that surgery so as he was coming to they didn't give him very much morphine and he was in serious pain and prolapsed out his mucus fistula. They put him back in again and using a "button" they went through the intestine and stitched the intestine to the opposite side of his tummy. From here they gave him plenty of morphine with strict instructions that he was not to feel pain. He was put into the infant unit to recover and I'm not sure if they actually overdosed him because the nurse followed the directions completely. But about midnight he quit breathing and his heart stopped. The head nurse came in and was giving him oxygen while his actual nurse did CPR. I don't think it all lasted more than 1-2 minutes..but it felt forever!! They moved him to ICU and his heart rate dipped and he'd quit breathing every 20 minutes, so I would shake him and wake him up and he'd start breathing again. They gave him some medication to counter the morphine just enough so he wasn't in pain until they could give him enough Fentanyl to make up for the morphine. For his next surgery two days later on Wednesday, they gave him the Fentanyl with no problems.
This past week he had surgery on Monday. They attached his intestine to his rectum. He still has his stoma until his rectum hole is 13 ml in diameter. (This will take about 3-4 months) In talking with anesthesia, they didn't think that his previous problems were the morphine directly, but maybe either a build up or just the heavy initial dose, so we tried the drip system. He was out of surgery about 1:30 pm. He finally came to enough to receive his first drip of Morphine about 3:30. I was in the room within 20 minutes and he quit breathing and his heart slowed way down. The whole room filled up with everybody that could help as they gave him oxygen and did CPR on him. They gave him a small dose of the counter drug and for about 2 hours he struggled to stabilize. They gave him Newbain and moved him to ICU for the night about 6pm. Because they have to transfer the information from one nurse to the other, we were not allowed to go with him, so we went and got dinner. We were finally allowed back in with Hyrum 1/2 hour later to find that the resident doctors had found him in so much pain that they gave him some more Morphine. Within 1/2 hour he started to dip and quit breathing. He didn't go completely, just enough to let the resident doctors realized how stupid they were. We finally convinced them to give him Fentanyl. But they were afraid that the fentanyl would do the same thing, so they gave him .3 ml every 4 hours. It took the night nurse to push every doctor and resident doctor to finally get Hyrum to were he was taking 1 ml every 4 hours and another bolus every 4 hours but two hours apart from the main dosage. She was very nervous because she didn't let each of the doctors know that she had already pumped up the last doctor that happened by to do the same thing. He was in constant pain from 6:00 until 11:00 pm. He was wide awake and the horrible look of absolute pain in his eyes.
After a restful night, they gave him Dilaudid to move him to the floor ( they don't usually give them Fentanyl in the infant unit). 1/2 hour he was getting settled in the infant unit when I noticed his oxygen level going down. The nurse saw it at the same time and between the two of us we had oxygen going and CPR. She pushed the code blue button and John experienced "code blue" for the first time. The doctors were shocked, to say the least. His nurse has enough experience and schooling that she is trained in giving Fentanyl, so they allowed us to stay in the infant unit. He was on Fentanyl until yesterday. He is now on Tylenol and Motrin.
Hyrum's Drug Issues
From my understanding, with Hyrum's first surgery they used Fentanyl. He had no problems. In fact, he was off the pain medication within 24 hours. One week later he had his second surgery, I guess with the tiny babies they use Fentanyl because I'm sure that is what they used again.
When he was about 5 weeks old, we went back to the hospital for a prolapsed stoma. They gave him morphine at this time to help with the pain, but finally, put him under to stitch him closed. The next day they put him back into surgery to redo his stoma and mucus fistula and they stitched his upper intestine to his abdominal wall. His heart dipped in that surgery so as he was coming to they didn't give him very much morphine and he was in serious pain and prolapsed out his mucus fistula. They put him back in again and using a "button" they went through the intestine and stitched the intestine to the opposite side of his tummy. From here they gave him plenty of morphine with strict instructions that he was not to feel pain. He was put into the infant unit to recover and I'm not sure if they actually overdosed him because the nurse followed the directions completely. But about midnight he quit breathing and his heart stopped. The head nurse came in and was giving him oxygen while his actual nurse did CPR. I don't think it all lasted more than 1-2 minutes..but it felt forever!! They moved him to ICU and his heart rate dipped and he'd quit breathing every 20 minutes, so I would shake him and wake him up and he'd start breathing again. They gave him some medication to counter the morphine just enough so he wasn't in pain until they could give him enough Fentanyl to make up for the morphine. For his next surgery two days later on Wednesday, they gave him the Fentanyl with no problems.
This past week he had surgery on Monday. They attached his intestine to his rectum. He still has his stoma until his rectum hole is 13 ml in diameter. (This will take about 3-4 months) In talking with anesthesia, they didn't think that his previous problems were the morphine directly, but maybe either a build up or just the heavy initial dose, so we tried the drip system. He was out of surgery about 1:30 pm. He finally came to enough to receive his first drip of Morphine about 3:30. I was in the room within 20 minutes and he quit breathing and his heart slowed way down. The whole room filled up with everybody that could help as they gave him oxygen and did CPR on him. They gave him a small dose of the counter drug and for about 2 hours he struggled to stabilize. They gave him Newbain and moved him to ICU for the night about 6pm. Because they have to transfer the information from one nurse to the other, we were not allowed to go with him, so we went and got dinner. We were finally allowed back in with Hyrum 1/2 hour later to find that the resident doctors had found him in so much pain that they gave him some more Morphine. Within 1/2 hour he started to dip and quit breathing. He didn't go completely, just enough to let the resident doctors realized how stupid they were. We finally convinced them to give him Fentanyl. But they were afraid that the fentanyl would do the same thing, so they gave him .3 ml every 4 hours. It took the night nurse to push every doctor and resident doctor to finally get Hyrum to were he was taking 1 ml every 4 hours and another bolus every 4 hours but two hours apart from the main dosage. She was very nervous because she didn't let each of the doctors know that she had already pumped up the last doctor that happened by to do the same thing. He was in constant pain from 6:00 until 11:00 pm. He was wide awake and the horrible look of absolute pain in his eyes.
After a restful night, they gave him Dilaudid to move him to the floor ( they don't usually give them Fentanyl in the infant unit). 1/2 hour he was getting settled in the infant unit when I noticed his oxygen level going down. The nurse saw it at the same time and between the two of us we had oxygen going and CPR. She pushed the code blue button and John experienced "code blue" for the first time. The doctors were shocked, to say the least. His nurse has enough experience and schooling that she is trained in giving Fentanyl, so they allowed us to stay in the infant unit. He was on Fentanyl until yesterday. He is now on Tylenol and Motrin.
Hyrum is having problems with his catheter, so he is back in surgery again tonight. This time there will be no Morphine or Dilaudid.
I hope that gives you some insight into Hyrum's drug issues. The only other possibility is that his body has stored up the Morphine previously given to him in his fat cells and so any amount is like giving him an overdose.
I'm not sure why they don't choose another drug, whether they are not strong enough or what. Having been through the druggy class, do you know of another drug that would not hurt his heart, but yet not let him feel the pain? I'm really a natural sorta person, but when your 6 month looks at you with so much pain in his eyes, you give him anything you can to ease the pain. They just don't understand at this age what is going on.
He is also still on Oxygen as he has somehow aspirated (or something similar) because he has fluid in the lungs. His respiratory is in the 50's (it is supposed to be in the 20's) and he is getting about .4-.5 ml/minute he seems to not be able to break the .4 or his oxygen level drops to the 80's (instead of the high 90s)
Well, Hyrum is out of surgery, he is looking really good. He is awake and talking. They have him on a healthy dose of Newbain and he seems to be doing great!
Good luck with the studying,
I hope that gives you some insight into Hyrum's drug issues. The only other possibility is that his body has stored up the Morphine previously given to him in his fat cells and so any amount is like giving him an overdose.
I'm not sure why they don't choose another drug, whether they are not strong enough or what. Having been through the druggy class, do you know of another drug that would not hurt his heart, but yet not let him feel the pain? I'm really a natural sorta person, but when your 6 month looks at you with so much pain in his eyes, you give him anything you can to ease the pain. They just don't understand at this age what is going on.
He is also still on Oxygen as he has somehow aspirated (or something similar) because he has fluid in the lungs. His respiratory is in the 50's (it is supposed to be in the 20's) and he is getting about .4-.5 ml/minute he seems to not be able to break the .4 or his oxygen level drops to the 80's (instead of the high 90s)
Well, Hyrum is out of surgery, he is looking really good. He is awake and talking. They have him on a healthy dose of Newbain and he seems to be doing great!
Good luck with the studying,
From a cousin-in-law Brei Bunker
What a fighter he is! We are astounded at everything he has/is going through and how well not only you and John seem to be handling it, but especially Hyrum. We are so grateful that the surgery was a success and hope, as you do, that Thursday's events will allow him a quicker recovery. We continue to pray for you all. Please let us know if there's anything you need or that we can help with...we're not that far away!
He had a good night. I finally got to sleep about 12:30 and at 1:30 he woke up hungry...he got a binky and a new position. I slept until 5:00 and he woke me again because he was hungry....again he got a binky and a new position. I pumped and now going back to sleep!
There are some days that start out great and planned and then there is the reality.
Our day started about midnight. Hyrum ate a great 2 1/2 oz of milk. At Three am he refused his bottle and became fussy. He finally fell into a fit full sleep until 4 am when the nurse came to check on him and he threw up all over the bed. By this time his puffiness was seeming to be worse especially around his abdomen, which was starting to get more firm. He was also not peeing into his catheter, but rather in his diaper.
The surgeon came around at 6 am to examine him. He was no longer allowed to eat and they flushed his catheter line. This helped except that it came out red. So they put him back on IV to help with the lack of food and ordered x-rays.
At the same time, his respiratory was getting worse, so they upped his oxygen level to compensate for his breathing or more lack of breathing. They had done an x-ray on Wednesday to find a little bit of fluid in his lungs, but this morning he sounded even worse. So they scheduled an x-ray of his lungs and also an x-ray of his urethra to see what was happening with his catheter.
They found his lungs to be about the same and are treating him for asthmatic symptoms and if it works than it works, otherwise they will look into a viral pneumonia possibility.
As for his catheter, they found that the urine was going around the catheter and either into his diaper or through the hole that was created by cutting the tip of his intestine off and putting it where it belonged. The catheter was to prevent this to allow the hole to close on its own, in about 5 days. So it wasn't preventing it and his abdomen was filling up with urine.
This evening he was taken back into surgery where they took 10 minutes and replaced the catheter with a larger one that actually balloons inside of his bladder preventing the urine from escaping the catheter. They gave him a large dose of a drug called Newbain, which so far he is handling very well. John's father came to visit John and I at the hospital and arrived just in time to say goodbye to Hyrum as he was carted off. Hyrum gave grandpa his first smile since arriving at the hospital on Monday. When we saw Hyrum after the surgery, he was more alert and looked very good.
We are looking forward to a much better night in hopes to get some rest. On Wednesday, we were able to get a private room, this has been to my benefit as I came down with a nasty cold. So I wear my mask anytime I'm in Hyrum's room (being all the time) in hopes to not spread it to him. Last night, even with little sleep, I found it not to uncomfortable to sleep with.
Though today has been rough, I feel that it may be a great turning point in Hyrum's recovery. Thank you all for your continued prayers. We love each of you and are grateful to have such awesome friends and family!!!
Our day started about midnight. Hyrum ate a great 2 1/2 oz of milk. At Three am he refused his bottle and became fussy. He finally fell into a fit full sleep until 4 am when the nurse came to check on him and he threw up all over the bed. By this time his puffiness was seeming to be worse especially around his abdomen, which was starting to get more firm. He was also not peeing into his catheter, but rather in his diaper.
The surgeon came around at 6 am to examine him. He was no longer allowed to eat and they flushed his catheter line. This helped except that it came out red. So they put him back on IV to help with the lack of food and ordered x-rays.
At the same time, his respiratory was getting worse, so they upped his oxygen level to compensate for his breathing or more lack of breathing. They had done an x-ray on Wednesday to find a little bit of fluid in his lungs, but this morning he sounded even worse. So they scheduled an x-ray of his lungs and also an x-ray of his urethra to see what was happening with his catheter.
They found his lungs to be about the same and are treating him for asthmatic symptoms and if it works than it works, otherwise they will look into a viral pneumonia possibility.
As for his catheter, they found that the urine was going around the catheter and either into his diaper or through the hole that was created by cutting the tip of his intestine off and putting it where it belonged. The catheter was to prevent this to allow the hole to close on its own, in about 5 days. So it wasn't preventing it and his abdomen was filling up with urine.
This evening he was taken back into surgery where they took 10 minutes and replaced the catheter with a larger one that actually balloons inside of his bladder preventing the urine from escaping the catheter. They gave him a large dose of a drug called Newbain, which so far he is handling very well. John's father came to visit John and I at the hospital and arrived just in time to say goodbye to Hyrum as he was carted off. Hyrum gave grandpa his first smile since arriving at the hospital on Monday. When we saw Hyrum after the surgery, he was more alert and looked very good.
We are looking forward to a much better night in hopes to get some rest. On Wednesday, we were able to get a private room, this has been to my benefit as I came down with a nasty cold. So I wear my mask anytime I'm in Hyrum's room (being all the time) in hopes to not spread it to him. Last night, even with little sleep, I found it not to uncomfortable to sleep with.
Though today has been rough, I feel that it may be a great turning point in Hyrum's recovery. Thank you all for your continued prayers. We love each of you and are grateful to have such awesome friends and family!!!
Our Friday went much better. We had an x-ray and discovered that he had more fluid in and around his lungs. They gave him the drug lasix to help his body lose the water he has been storing for the last few days. This has really helped not only his lungs, but his whole body. He lost the pound of water that he had been storing. I've attached a picture of him and hopefully you can see a difference. We certainly can.
About 3 pm they allowed him to have one ounce of milk. This of course was not enough, but he loved every drop of it. He had another ounce at 6 pm, and than at 9:00 pm he was allowed two ounces. He is still fussy because he is not getting the full amount he usually drinks, but he is getting better. He has been more alert and wanting to be held more. He even gave me a couple of smiles.
He is still taking albuterol to help open his airway and still on oxygen to help with his breathing. He has had a few spells today where it seems as if someone is plugging his nose, and all of a sudden he can't catch his breath. We have tried lowering his oxygen level and he just can't handle life without oxygen.
So on for tomorrow and hopes for continued improvement.
Thank you for all your prayers.
My the Lord bless each of you for your thoughtfulness.
We love and appreciate each of you.
About 3 pm they allowed him to have one ounce of milk. This of course was not enough, but he loved every drop of it. He had another ounce at 6 pm, and than at 9:00 pm he was allowed two ounces. He is still fussy because he is not getting the full amount he usually drinks, but he is getting better. He has been more alert and wanting to be held more. He even gave me a couple of smiles.
He is still taking albuterol to help open his airway and still on oxygen to help with his breathing. He has had a few spells today where it seems as if someone is plugging his nose, and all of a sudden he can't catch his breath. We have tried lowering his oxygen level and he just can't handle life without oxygen.
So on for tomorrow and hopes for continued improvement.
Thank you for all your prayers.
My the Lord bless each of you for your thoughtfulness.
We love and appreciate each of you.
Email From Uncle Ted
When one is fighting to stay alive or reasonably well it becomes difficult to see the larger picture. The human being has an attribute that allows us to shut out the rest of the world and to focus on what is immediately in front of us. Asking the fundamental question: How do I get through today? In the end, the survival comes back to the fundamentals of the body and the soul. As I read below your struggling with the tubes of Hyrum's body I remembered a diagram that I had drawn some time ago.
I wondered how long it would be before the mother showed up with the signs of the stress. It is not just the lack of sleep but the need to be constantly vigilant to protect your son from the environment that will take the most energy. Your natural instincts of protection your son have taken over. Hyrum will someday be grateful.
September 29, 2007
As you can see from the pictures Hyrum is very awake and ready to play. John brought his mobile from home and he has loved it. He just laughed and played for a solid hour and a half. Then he quieted down and fell asleep with little happy tears in his eyes.
He also loves taking off his oxygen nose strip. Usually, he gets it to the bridge of his nose. Today he got it completely off and was playing with it. He actually made it 20 minutes before his monitors started beeping due to lack of oxygen.
We are working on weaning him off his Motrin and Tylenol that he has been taking for the pain.
He still has water in his lungs, but he is starting to cough. I believe that this will help loosen up the congestion and maybe get him on his way to doing better. He has been eating about 4 ounces most of the day and only threw up once. I think that he was thinking it to be Thanksgiving dinner...and he stuffed himself to full...and then gave a great big cough and all of a sudden his stomach was emptied all over his blankets!!!:)
Today one of his nurses was a male nurse named Greg. Today would be Greg's second day on the job. He loved playing with Hyrum and Hyrum loved the attention so much that Greg got the first smile of the day as we were heading down to get his chest x-ray. Greg was very attentive and would watch Hyrum very closely when his monitors would beep due to Hyrum playing with the oxygen. Greg couldn't get over how beautiful Hyrum was!
Rachel, Sarah, and Karl have been playing with Grandma and Grandpa Smith this weekend giving Grandma and Grandpa Burrell a little break. The kids are enjoying have some one on one time with their Grandparents.
We appreciate the emails full of love and well being. I pray that each of you will be blessed for your mindfulness of us and especially Hyrum at this time.
September 30, 2007
We are working on weaning him off his Motrin and Tylenol that he has been taking for the pain.
He still has water in his lungs, but he is starting to cough. I believe that this will help loosen up the congestion and maybe get him on his way to doing better. He has been eating about 4 ounces most of the day and only threw up once. I think that he was thinking it to be Thanksgiving dinner...and he stuffed himself to full...and then gave a great big cough and all of a sudden his stomach was emptied all over his blankets!!!:)
Today one of his nurses was a male nurse named Greg. Today would be Greg's second day on the job. He loved playing with Hyrum and Hyrum loved the attention so much that Greg got the first smile of the day as we were heading down to get his chest x-ray. Greg was very attentive and would watch Hyrum very closely when his monitors would beep due to Hyrum playing with the oxygen. Greg couldn't get over how beautiful Hyrum was!
Rachel, Sarah, and Karl have been playing with Grandma and Grandpa Smith this weekend giving Grandma and Grandpa Burrell a little break. The kids are enjoying have some one on one time with their Grandparents.
We appreciate the emails full of love and well being. I pray that each of you will be blessed for your mindfulness of us and especially Hyrum at this time.
September 30, 2007
An Email to my neighbor Becky Ekstrom, who also was involved in Hyrum's first surgery
I'm sorry it didn't work to see you! I was actually kicking John out the door about then, but I was trying to wind down for the day. The hospital stay seems to have messed up his sleeping schedule, so we didn't actually get to sleep until about 1:00 am. I had the hope the nurse would stay with him until he slept, but her idea of "letting the mother sleep" was turning all the lights out and shutting the door, with the baby wide awake. Luckily, John brought his mobile from home, two times around that and he was sound asleep! What did I ever do without mobiles!!! At least she waited four hours to wake him up for his vitals instead of the three when he should have eaten...so at least I got a few hours of sleep. I have had the same night nurse the last three nights, she would physically take the bottle from me so that I would go back to bed, this one I couldn't get her to take the bottle, as soon as she saw me awake, she said...I think he might be hungry...not even budging to go get the bottle herself, so I got, I warmed it, and she walked out of the room and told me when I was done, to come get her. oh well, some are better than others!
Time will tell when we will be coming home, but no sooner than Monday, his oxygen is down to .2ml so this is good! From here it is a waiting game...which is why I brought my computer and my scrapbooks!
If I'm still here next week well have to try and get together before or after work or on break for a few minutes.
Time will tell when we will be coming home, but no sooner than Monday, his oxygen is down to .2ml so this is good! From here it is a waiting game...which is why I brought my computer and my scrapbooks!
If I'm still here next week well have to try and get together before or after work or on break for a few minutes.
September 30, 2007
Hyrum is doing so much better. The last time he had any pain medication was yesterday at 6:00pm. He is eating better, about 5 ounces. And yesterday he got a hold of his oxygen tube and took it completely off he played with it for about 25 minutes before he had a hard time breathing again.
My husband also brought his mobile and a few toys from home. He was so excited he started to do his cute gurgle baby talk he fell asleep about 2 hours later with a peaceful happy face with moisture in his eyes!
He has been receiving about .50 ml of oxygen an hour, but since his little stint yesterday, we have started pushing to have him receive less. So by this morning, he is down to .20 ml of oxygen.
My motherly instinct says that it is coming. He looks better, he interacts better. If he continues to improve at the rate he has been, I think he will be going home the middle of next week to the end of next week.
My own mother has been helping with my other three kids at home, getting them off to school and plain being there for them. We had both hoped I would be home by Monday because one of my Dad's sisters and her oldest son was coming to town this next week. My Dad called me and personally told me that his sister took second fiddle to his Grandson and not to worry about my other kids, they would be well taken care of. My husband's parents were feeling left out (since both work) so my mother gladly dropped of the kids to their house for the weekend So I have a great support system.
The first picture is the day we left for the hospital. And the second was after his mobile came!
And to set the record straight that dark stuff on his head is about 2 inches of hair. None of my other kids had hair...but he got it all:)
Hopefully, now that I'm sending you an email, I will be able to get one back. My husband keeps our emails pretty tight, even a neighbor of mine couldn't get through the first time.
I just talked to the charge nurse, and she thinks he may be off oxygen by the end of the day if he keeps up the good work!
He has been receiving about .50 ml of oxygen an hour, but since his little stint yesterday, we have started pushing to have him receive less. So by this morning, he is down to .20 ml of oxygen.
My motherly instinct says that it is coming. He looks better, he interacts better. If he continues to improve at the rate he has been, I think he will be going home the middle of next week to the end of next week.
My own mother has been helping with my other three kids at home, getting them off to school and plain being there for them. We had both hoped I would be home by Monday because one of my Dad's sisters and her oldest son was coming to town this next week. My Dad called me and personally told me that his sister took second fiddle to his Grandson and not to worry about my other kids, they would be well taken care of. My husband's parents were feeling left out (since both work) so my mother gladly dropped of the kids to their house for the weekend So I have a great support system.
The first picture is the day we left for the hospital. And the second was after his mobile came!
And to set the record straight that dark stuff on his head is about 2 inches of hair. None of my other kids had hair...but he got it all:)
Hopefully, now that I'm sending you an email, I will be able to get one back. My husband keeps our emails pretty tight, even a neighbor of mine couldn't get through the first time.
I just talked to the charge nurse, and she thinks he may be off oxygen by the end of the day if he keeps up the good work!
September 30, 2007
I took the opportunity while in the hospital to catch up on my kids' scrapbooks. Since my 4-year-old still doesn't have a baby book, his are all on the computer. I have almost caught up my pictures up to the end of 2004. It is overwhelming when you have 3 books to do, and now I have 4! Luckily my mother-in-law loves to scrapbook, so she decided that Hyrum needed his first 6 weeks documented, so she downloaded all of my pictures, took everything I had collected for him home and created the most beautiful book.
I don't think a person understands how fast time flies until you look back to yesterday and it was 20 years ago. Right now, my yesterday was 11 years ago. As I look back at how fast the last 10 years have flown it scares me to think what I need to do to help my children make it through the next 10 years.
I know that having children of my own has helped greatly appreciate my own mother even more. As I calculated her life one day, I realized that if I were her, her 6th child would have been Hyrum's age...and I'm only on # 4 and I'm NOT going any further. Growing up she was my best friend. When the other teenagers were bashing their mom's, I never related to their problems.
We are hoping to go home tomorrow. Hyrum is completely off oxygen!!!! He has to have one x-ray in the morning to make sure everything is working for him with a catheter, and then we are home free!!
September 30, 2007
I know that having children of my own has helped greatly appreciate my own mother even more. As I calculated her life one day, I realized that if I were her, her 6th child would have been Hyrum's age...and I'm only on # 4 and I'm NOT going any further. Growing up she was my best friend. When the other teenagers were bashing their mom's, I never related to their problems.
We are hoping to go home tomorrow. Hyrum is completely off oxygen!!!! He has to have one x-ray in the morning to make sure everything is working for him with a catheter, and then we are home free!!
September 30, 2007
Though it would be nice to go home, you are right, I don't want him going home before he is ready. John brought a few of his things from home and he has really perked up. At one point I saw that he had fallen asleep, it was very strange because he had a smile on his face and you could tell that he was at complete peace, yet he had tears coming to moisten his eyes. My guess is that it helped bring something that he knew was his to remind him of the wonderful home that is waiting for him and he knows it is there because he has been there!
Email from Uncle TedI am glad that Hyrum can begin to smile. It is hard to smile when the pain is too high. It does not take long for babies to know objects and people. I like the idea of having items in the hospital room that are recognized by Hyrum. That will help the recovery process.
Hyrum Update
It is said that a picture says a thousand words. I think the picture tells what Hyrum will be doing today!
and he was happy to go home. 
And Hyrum was happy to see he toys 
Hyrum never complained about too many toys.
And Sister was So happy to see Hyrum, 
that she took over the camera! 
And Hyrum put up with it willingly...
especially as he Had her attention!