Samuel's operation seems to have been a success. His vitals are much better now. The doctors did an x-ray immediately following surgery. The left lung is looking more clear. They have lowered his oxygen level - right now he is in the mid thirties. His other ventilator settings are still a little high, but they are coming down slowly.
The doctors removed the chest tube during surgery. They are following up with x-rays more frequently to make sure that the lung is no longer leaking air into the chest cavity.
His blood tests are also looking better since the surgery. Hopefully that will continue.
Samuel's kidneys aren't doing much of anything yet. He is looking more and more swollen. The doctors think it may take a couple of days for them to begin working again.
For the most part, we are better now.....other than his blood pressure being too low. The nurse on duty is a little rough and unconcerned - I can't help but want everything to be perfect.
We've made it through another storm. :)
Wednesday, March 31, 2010
Heart Surgery
The doctors did the Echo this morning. There is a extra artery in the heart in every baby (even full-term babies) - usually it seals within 48 hours after birth. A week ago they did an Echo and this artery was closed. Day before yesterday they did an Echo and the artery was just barely open - not enough to cause problems. Today his vitals were unstable so they decided to do the Echo again. They found that the artery is wide open now - too wide to seal with medicine.
The doctors have made the decision to operate. It should happen in the next hour or two. Before the surgery, they wanted another brain scan. Since Samuel has been through so much trauma in the last 48 hours, they were thinking that he would have a brain bleed. Thankfully it came back without any changes (there has been a slight brain bleed before now.)
Praying that God directs the doctors hands - that the surgeon will be focused, careful, precise, confident, and knowledgeable. We also are praying that this surgery will be successful - that it will correct some of the other problems that Samuel has been having.
Don't be discouraged - and don't give up praying. God is the author of creation...I'm sure His hands are large enough for this tiny baby.
The doctors have made the decision to operate. It should happen in the next hour or two. Before the surgery, they wanted another brain scan. Since Samuel has been through so much trauma in the last 48 hours, they were thinking that he would have a brain bleed. Thankfully it came back without any changes (there has been a slight brain bleed before now.)
Praying that God directs the doctors hands - that the surgeon will be focused, careful, precise, confident, and knowledgeable. We also are praying that this surgery will be successful - that it will correct some of the other problems that Samuel has been having.
Don't be discouraged - and don't give up praying. God is the author of creation...I'm sure His hands are large enough for this tiny baby.
The Midnight Bark
I can't express my thankfulness to those of you who took a time slot to pray for our family. The peace I have felt all day -despite the hardships - is undeniably from God. My mom made a comment yesterday that really stuck with me. If you have ever seen the animated Disney movie 101 Dalmatians, you will remember the "midnight bark." She reminded me of this when we found out so many were praying. In the movie, when the puppies go missing, the dogs of London send out a message. One dog barks the message to another, and another, and another. I know this is a silly illustration, but when I have no more tears to cry and no more prayers to pray - I know that you are all out there....picking up where I fall short.
This morning Samuel's lungs look slightly better. They have essentially collapsed both lungs at different times in order to allow the PIE to heal. Now, they are trying to get them to inflate again.
Samuel's vitals are not stable. Any time he moves, or is touched, his heart rate plummets. A few minutes ago the doctors were doing another Echo on his heart and his heart nearly stopped for a few minutes. They had to give him an emergency medicine to get it going again.
Yesterday his kidneys had shut down completely. This morning there are signs that they might be functioning at a very minimal level.
I'll post more later.
This morning Samuel's lungs look slightly better. They have essentially collapsed both lungs at different times in order to allow the PIE to heal. Now, they are trying to get them to inflate again.
Samuel's vitals are not stable. Any time he moves, or is touched, his heart rate plummets. A few minutes ago the doctors were doing another Echo on his heart and his heart nearly stopped for a few minutes. They had to give him an emergency medicine to get it going again.
Yesterday his kidneys had shut down completely. This morning there are signs that they might be functioning at a very minimal level.
I'll post more later.
Tuesday, March 30, 2010
Today
Samuel's right lung (the one with the PIE) has continued to get worse. The doctors have him on his right side so that lung will collapse and heal. The left lung (the one that has the hole in it) is doing all of the work right now. Samuel is on 100% oxygen, the highest oxygen setting. He is also close to the top on all of the other settings as well.
They have put in yet another iv into his scalp. They are giving him blood and he looks very swollen. His poor little face is hardly recognizable. His blood pressure is low right now. They are hoping that the blood will help that as well.
It's like all of his body functions are connected - one thing is wrong and it causes something else to go wrong. It seems to make treating the individual things very difficult.
They have put in yet another iv into his scalp. They are giving him blood and he looks very swollen. His poor little face is hardly recognizable. His blood pressure is low right now. They are hoping that the blood will help that as well.
It's like all of his body functions are connected - one thing is wrong and it causes something else to go wrong. It seems to make treating the individual things very difficult.
Rough Night
Samuel didn't have a good night last night. I got a phone call this morning around 4:30 saying that some air had leaked out of his left lung and into his chest. The doctors had to put in another tube - this time into his chest. According to the x-ray, most of the air is gone, and it seems to have relieved that lung of a lot of pressure. The doctors are watching the right lung because apparently the PIE has shown itself again. His oxygen is up the highest it's ever been and the ventilator settings are up high too. We don't know anything yet about everything else - the doctors will be making their rounds soon.
We continue to believe that God has a plan for Samuel and that all of this is happening for a reason. Sometimes it's hard to see and believe when things seem to be getting worse each day, but each time I feel like I'm just about to give up hope, God shows us how much he loves us.
Yesterday afternoon I was feeling so very discouraged. There is a little room that I use a lot - in the room there are little lock boxes. I had been in earlier in the morning and didn't notice anything unusual. I came in later and looked at my box, and there was an envelope attached to it with tape. In the envelope there was a note and some money. The note said that the money was for food and lodging - and that whoever wrote the note was praying for Samuel and strength for us. After reading the note, I sat down on the floor and cried. I was overwhelmed by the amazing timing of God's grace. It wasn't about the money....right now, all I want is for Samuel to be better....but it was a good reminder that God's hand is in everything. I still don't know who could have possibly left the envelope. We don't know anyone here at Children's.
We continue to believe that God has a plan for Samuel and that all of this is happening for a reason. Sometimes it's hard to see and believe when things seem to be getting worse each day, but each time I feel like I'm just about to give up hope, God shows us how much he loves us.
Yesterday afternoon I was feeling so very discouraged. There is a little room that I use a lot - in the room there are little lock boxes. I had been in earlier in the morning and didn't notice anything unusual. I came in later and looked at my box, and there was an envelope attached to it with tape. In the envelope there was a note and some money. The note said that the money was for food and lodging - and that whoever wrote the note was praying for Samuel and strength for us. After reading the note, I sat down on the floor and cried. I was overwhelmed by the amazing timing of God's grace. It wasn't about the money....right now, all I want is for Samuel to be better....but it was a good reminder that God's hand is in everything. I still don't know who could have possibly left the envelope. We don't know anyone here at Children's.
Monday, March 29, 2010
A Great Idea
Thanks to Christie Martin for giving me the great idea of making a blog to keep everyone updated on Samuel's progress. I've not been able to update Facebook since coming to ACH - they have Facebook blocked.
Michael and I are sitting in the room with Samuel. He's had a few good hours. There is a lot to be praying about right now. This morning he had an Echo on his heart, an ultrasound on his kidneys and brain, and a chest x-ray.
Since coming to Children's, Samuel's lungs have progressively gotten worse. After doing the Echo this morning, the doctor discovered that there is a valve in Samuel's heart that has not closed yet. Apparently, it is open in almost every full term baby at birth but closes with a baby's first cry. His has not closed and is causing a lot of problems. They can give him some medicine to close it, but that medicine is hard on the kidneys. And since Samuel's kidneys have been showing signs of strain, the doctors are wary of giving it to him.
We have not spoken with the doctor today. After Samuel's bowel perforated, the surgeon put in an abdominal drain (a tube that literally sticks out of his stomach.) As of yesterday, it was working well. He is still leaking a lot of yellow fluid. The surgeons say that once the fluid turns clear and stops, they will take out the drain.
The plan is to begin feeding him again after 10 days - just to be sure that his intestines have had an opportunity to heal. There is some chance of scarring at the site where his intestines perforated. This may constrict intestinal flow later on. He may need another surgery to correct this when he gets older. There is the possibility that all could be well too! :)
The ultrasound on his brain showed that there was a spot of bleeding. They think that it was there on his last ultrasound too. They are calling it a grade II IVH....they aren't too concerned and have reassured us that a grade II isn't bad - but Michael and I are worried. They will do another head ultrasound sometime next week to make sure it hasn't spread.
Yesterday we discovered that Samuel's eyes have opened. Before now, they were fused shut. It's so amazing to see his eyes - even though he barely opens them.
We are trying to take things one moment at a time. Your prayers are very needed and appreciated. As mentioned above, we are praying for Samuel's lungs, the extra valve in his heart to close, his intestines to heal, and the bleeding in his brain to stop and cause no further problems.
Michael and I are sitting in the room with Samuel. He's had a few good hours. There is a lot to be praying about right now. This morning he had an Echo on his heart, an ultrasound on his kidneys and brain, and a chest x-ray.
Since coming to Children's, Samuel's lungs have progressively gotten worse. After doing the Echo this morning, the doctor discovered that there is a valve in Samuel's heart that has not closed yet. Apparently, it is open in almost every full term baby at birth but closes with a baby's first cry. His has not closed and is causing a lot of problems. They can give him some medicine to close it, but that medicine is hard on the kidneys. And since Samuel's kidneys have been showing signs of strain, the doctors are wary of giving it to him.
We have not spoken with the doctor today. After Samuel's bowel perforated, the surgeon put in an abdominal drain (a tube that literally sticks out of his stomach.) As of yesterday, it was working well. He is still leaking a lot of yellow fluid. The surgeons say that once the fluid turns clear and stops, they will take out the drain.
The plan is to begin feeding him again after 10 days - just to be sure that his intestines have had an opportunity to heal. There is some chance of scarring at the site where his intestines perforated. This may constrict intestinal flow later on. He may need another surgery to correct this when he gets older. There is the possibility that all could be well too! :)
The ultrasound on his brain showed that there was a spot of bleeding. They think that it was there on his last ultrasound too. They are calling it a grade II IVH....they aren't too concerned and have reassured us that a grade II isn't bad - but Michael and I are worried. They will do another head ultrasound sometime next week to make sure it hasn't spread.
Yesterday we discovered that Samuel's eyes have opened. Before now, they were fused shut. It's so amazing to see his eyes - even though he barely opens them.
We are trying to take things one moment at a time. Your prayers are very needed and appreciated. As mentioned above, we are praying for Samuel's lungs, the extra valve in his heart to close, his intestines to heal, and the bleeding in his brain to stop and cause no further problems.
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