Yesterday they decided to discharge us since Nathan had not had a fever in two days. I was initially really excited but the ID doctor told me she was nervous that something might happen overnight. So of course, that made me nervous. I started wondering why they were they letting us go. I ended up speaking with the pediatrician and asked her if it was risky to take Nathan home. She was very reassuring but did tell me that she, the ID doctor and the neurosurgeon agree that Nathan will probably have to have another procedure to drain the abscess. However, they want to do it when he is healthy and not suffering from fevers since it is not an emergency. And of course, it is brain surgery so they are being cautious. They want to see how things go with the antibiotics. Nathan is scheduled for another MRI of his brain on March 5th and we have an appointment with the neurosurgeon on the 9th so they will reevaluate at that time. We have been instructed to bring him into the hospital if his fever hits 101 degrees, if there is any change in his mental state or anything else abnormal happens. We will be readily admitted should any of these occur.
Nathan's antibiotic therapy has changed somewhat. He is on something different, something that covers a broader range of infection. He also needs to have this antibiotics every eight hours as opposed to every twelve. This is making for late nights and early mornings but I think Richard and I will eventually figure out a schedule where we switch off so both of us are getting good sleep. Right now it's so new we are administering it together. I told Richard it was kind of scary to play nurse! :)
In spite of all this, we are so happy to be home. It will be a little while before the house is in order but I made a little progress today. But it is nice to be at home together and sleep in our own beds! There is so much to be thankful for!
Right now we are praying that Nathan's abscess decreases in size quickly and that he doesn't need to have another procedure. I am also praying that after Nathan's next MRI the doctor's are amazed at the size of his abscess and have no medical explanation. :)
Right after Nathan was taken into surgery I opened my Bible and read this very verse in Psalm 118:8, "It is better to take refuge in the Lord than to trust in man." This has been a comfort to me during this process (although I have had my discouraging moments - just not too many). Right before the surgery, the doctor's told me that they weren't sure he could survive or that they could even help him. I will chose to trust in the One who has the final say on what happens to our little guy.
Thanks so much for your prayers! I will update all of you as things develop and to let you know how we're doing.
18 February 2010
16 February 2010
Up and Down
Nathan had another MRI on his head late yesterday. This morning they told us that the abscess has not gotten smaller and the radiologist thinks that it may have actually gotten larger. It's about 4.6cm. The infectious disease (ID) doctor recommended that Nathan have another procedure to drain the abscess. However, after the ID doctor spoke with the neurosurgeon they decided to wait and monitor it since Nathan is acting fine and did not have a fever overnight (his fevers typically come at night and are higher). We think this was mostly on the part of the neurosurgeon and we are thankful that he is conservative with performing surgery. The ID doctor will probably want to drain the abscess again if Nathan's fevers are frequent and high. Incidentally, they are now assuming that his fevers have been a result of the abscess. Not too long before we went home last week, they took him off of a medication to reduce swelling in his brain and they believe it's possible that the medication could have masked the persistent infection that resulted in a fever when we went home.
After hearing the news from the ID doctor, we were certain that Nathan would probably have surgery this week but when she came back after speaking with the neurosurgeon, we had hope that maybe it wouldn't be necessary. And actually after the pediatrician came in this evening we were told if Nathan doesn't have a fever tonight that they will discharge us tomorrow! This is something to be hopeful for!
Nathan is doing well in spite of all of this. Today we gave him a bath (well, he didn't like that) and since he wasn't hooked up to any monitors we were able to carry him around the room and play. We also had him walk and he was actually able to walk a couple feet on his own. He was somewhat unsteady but not too bad. He is also using his right hand more. If you recall, his right side has been weaker ever since his surgery as a result of the abscess being on the left side of his brain. He definitely prefers to use his left hand but is engaging his right hand more and more.
Right now we are praying that the antibiotics will be able to penetrate the abscess and work to eventually eliminate it. We don't want Nathan to need another surgical procedure. It's a risk we don't want him to have to go through again if at all possible. Also, we are praying that the abscess will be eliminated quickly because the ID doctor thinks we're looking at antibiotic therapy for about 6 months (an estimate so it could be shorter or longer). That would put Nathan's heart surgery at least 8 months out. We just want our little guy to be all better.
Thank you for your prayers! We are experiencing a peace that seems so foreign in a situation like this, well, at least for me. Richard doesn't struggle with worry the way I do. :) We know that your prayers are sustaining us and we are so thankful!
Maybe next time I post, we'll be home again for good!
After hearing the news from the ID doctor, we were certain that Nathan would probably have surgery this week but when she came back after speaking with the neurosurgeon, we had hope that maybe it wouldn't be necessary. And actually after the pediatrician came in this evening we were told if Nathan doesn't have a fever tonight that they will discharge us tomorrow! This is something to be hopeful for!
Nathan is doing well in spite of all of this. Today we gave him a bath (well, he didn't like that) and since he wasn't hooked up to any monitors we were able to carry him around the room and play. We also had him walk and he was actually able to walk a couple feet on his own. He was somewhat unsteady but not too bad. He is also using his right hand more. If you recall, his right side has been weaker ever since his surgery as a result of the abscess being on the left side of his brain. He definitely prefers to use his left hand but is engaging his right hand more and more.
Right now we are praying that the antibiotics will be able to penetrate the abscess and work to eventually eliminate it. We don't want Nathan to need another surgical procedure. It's a risk we don't want him to have to go through again if at all possible. Also, we are praying that the abscess will be eliminated quickly because the ID doctor thinks we're looking at antibiotic therapy for about 6 months (an estimate so it could be shorter or longer). That would put Nathan's heart surgery at least 8 months out. We just want our little guy to be all better.
Thank you for your prayers! We are experiencing a peace that seems so foreign in a situation like this, well, at least for me. Richard doesn't struggle with worry the way I do. :) We know that your prayers are sustaining us and we are so thankful!
Maybe next time I post, we'll be home again for good!
14 February 2010
Slow Day
Not much happened today except that Nathan is now off of his oxygen. They now believe that the reason for his low oxygen levels was due to them taking so much blood from him. His levels have gone higher now that he received some blood.
He had a fever last night and one this afternoon so they are not totally sure what is causing it. He is on one antibiotic now but it's not the one that he went home on. It's different and covers a broader range of infection. It could be possible that the abscess isn't getting the antibiotics like it should and that is the reason for the fever. We might have more answers after his MRI tomorrow.
Besides that, we had a good day. The four of us hung out here at the hospital. It's really nice to be together. Of course I'd prefer to be home but one week before Nathan's surgery, there was a ban lifted on child visitors under the age of 18. They instituted due to the H1N1 outbreak but that is no longer in effect and we are so thankful. This would be infinitely harder if we couldn't all be together.
Hopefully, we get good news about the size of the abscess tomorrow. I will let everyone know how it goes. I'm praying they don't need to drain it again and that they also find the cause of his fever.
Happy Valentine's Day and Happy Chinese New Year.
He had a fever last night and one this afternoon so they are not totally sure what is causing it. He is on one antibiotic now but it's not the one that he went home on. It's different and covers a broader range of infection. It could be possible that the abscess isn't getting the antibiotics like it should and that is the reason for the fever. We might have more answers after his MRI tomorrow.
Besides that, we had a good day. The four of us hung out here at the hospital. It's really nice to be together. Of course I'd prefer to be home but one week before Nathan's surgery, there was a ban lifted on child visitors under the age of 18. They instituted due to the H1N1 outbreak but that is no longer in effect and we are so thankful. This would be infinitely harder if we couldn't all be together.
Hopefully, we get good news about the size of the abscess tomorrow. I will let everyone know how it goes. I'm praying they don't need to drain it again and that they also find the cause of his fever.
Happy Valentine's Day and Happy Chinese New Year.
13 February 2010
Inching Forward
Sorry I didn't post an update yesterday. After I left the hospital I took Isabel to her ice skating class, came home and ate dinner, gave Isabel a bath and put her to bed, did 3 loads of laundry and sorted through our large stack of mail (a lot of things pile up when you have a child in the hospital). After that, I just didn't have the energy to post.
Thursday night I was pretty discouraged with some of the information we received regarding the MRI of Nathan's head. We learned that there is evidence on his brain that he has had mini-strokes. They can't be totally sure if this is new or was there before the MRI they took right before he had surgery. With the first MRI, they were more concerned with the abscess. During this MRI, they took different pictures. However, they are leaning toward this being something new. This was hard news for me to take but thankfully, on Friday, one of our cardiologists spoke with the neuroradiologist and they think that any damage would be reversible. Praise God!
Regarding the abscess, the MRI also showed that it has shrunk but they are not sure if it got even smaller than it is now and has grown larger or if it has continued to just get smaller. They will be doing another MRI on Monday to see what's going on. The neurosurgeon said that sometimes they need to drain the abscess more than once. Hopefully, it just continues to get smaller!
The echocardiogram didn't show there being anything additionally wrong with his heart so that's great news! His heart continues to be stable.
They have still been perplexed by his oxygen levels although they might have hit on something today. They have found that his hemoglobin has continued to go down since he's been in the hospital. This is because they keep taking blood from him for lab tests. They think that if they give him blood, that his hemoglobin will go up and therefore, maybe his oxygen levels will rise as well. They gave him some blood today and will monitor how things go. We are hoping that this is the answer! If this doesn't work, they will be taking a CT scan of his lungs to see if there is anything going on there. They did take an x-ray of his lungs and that looked good but a CT scan would give them better information.
I will let everyone know how things progress. Hopefully, no more update slacking in my future. :)
Thursday night I was pretty discouraged with some of the information we received regarding the MRI of Nathan's head. We learned that there is evidence on his brain that he has had mini-strokes. They can't be totally sure if this is new or was there before the MRI they took right before he had surgery. With the first MRI, they were more concerned with the abscess. During this MRI, they took different pictures. However, they are leaning toward this being something new. This was hard news for me to take but thankfully, on Friday, one of our cardiologists spoke with the neuroradiologist and they think that any damage would be reversible. Praise God!
Regarding the abscess, the MRI also showed that it has shrunk but they are not sure if it got even smaller than it is now and has grown larger or if it has continued to just get smaller. They will be doing another MRI on Monday to see what's going on. The neurosurgeon said that sometimes they need to drain the abscess more than once. Hopefully, it just continues to get smaller!
The echocardiogram didn't show there being anything additionally wrong with his heart so that's great news! His heart continues to be stable.
They have still been perplexed by his oxygen levels although they might have hit on something today. They have found that his hemoglobin has continued to go down since he's been in the hospital. This is because they keep taking blood from him for lab tests. They think that if they give him blood, that his hemoglobin will go up and therefore, maybe his oxygen levels will rise as well. They gave him some blood today and will monitor how things go. We are hoping that this is the answer! If this doesn't work, they will be taking a CT scan of his lungs to see if there is anything going on there. They did take an x-ray of his lungs and that looked good but a CT scan would give them better information.
I will let everyone know how things progress. Hopefully, no more update slacking in my future. :)
11 February 2010
Eventful Night
I posted late last night and if you can believe it, it still turned out to be quite an eventful evening. A little after midnight, as I was just falling asleep, the resident physician came in and told me that they wanted to transfer Nathan to the Pediatric ICU. The things they tried to bring up his oxygen levels (to what is normal for him) didn't work and they wanted him to be better monitored in case something was evolving. It felt like that dreadful night 10 days ago. We even had the exact same nurse and NCT as we did the night we came over here and they found his abscess.
I do want to explain what I mean by his oxygen levels being low. For a person without a heart defect, oxygenated blood feeds the organs and tissues at levels close to or at 100%. Nathan usually runs in the mid 70 to low 80% range. When we were admitted into the pediatric ward, he was in the low 60's.
Sometime overnight, I woke up because Nathan was crying. The nurse was in and had drawn blood from his picc line. I looked at him and noticed that his color looked bad. I mentioned it to the nurse and that's when she showed me that his oxygen level had dipped into the 30's! I was so scared. I started praying and by God's grace it started rising. We just stood there watching the machine wondering what was going to happen. Soon after it was up and the nurse even commented that it was better than it had been all night!
Not too long after that, I went to sleep. I woke up some time later and the nurse was putting blankets on him. He had 2 regular and 2 heated blankets on him and he was shivering! I felt his forehead and he would go from burning hot to cold. Then he started making strange sounds while he was breathing and I thought maybe he might be having a seizure. I checked his legs to see if I could move them and I could (when he was seizing last week he was so stiff). I mentioned to his nurse about checking for seizure but she looked into his pupils and everything was fine! Thankfully!
His oxygen levels fluctuated a good portion of the night. Around 5:00AM he had a fever of 104 and they treated him for that. By the time he woke up this morning he was stable and I don't think the fever has returned.
Today he has had an echocardiogram again along with an MRI of his head. He is on oxygen to keep his oxygen levels at a level that is normal for him. He has increased markers for imflammation as of last night which he didn't have a few days ago. His lungs look good. The blood cultures haven't shown any bacteria yet. He is on three antibiotics now. They are treating him like they did initially for a wide range of possibilities.
Right now we're just waiting to see what the echo and MRI show. His cardiologists should be by later.
Will keep you posted.
I do want to explain what I mean by his oxygen levels being low. For a person without a heart defect, oxygenated blood feeds the organs and tissues at levels close to or at 100%. Nathan usually runs in the mid 70 to low 80% range. When we were admitted into the pediatric ward, he was in the low 60's.
Sometime overnight, I woke up because Nathan was crying. The nurse was in and had drawn blood from his picc line. I looked at him and noticed that his color looked bad. I mentioned it to the nurse and that's when she showed me that his oxygen level had dipped into the 30's! I was so scared. I started praying and by God's grace it started rising. We just stood there watching the machine wondering what was going to happen. Soon after it was up and the nurse even commented that it was better than it had been all night!
Not too long after that, I went to sleep. I woke up some time later and the nurse was putting blankets on him. He had 2 regular and 2 heated blankets on him and he was shivering! I felt his forehead and he would go from burning hot to cold. Then he started making strange sounds while he was breathing and I thought maybe he might be having a seizure. I checked his legs to see if I could move them and I could (when he was seizing last week he was so stiff). I mentioned to his nurse about checking for seizure but she looked into his pupils and everything was fine! Thankfully!
His oxygen levels fluctuated a good portion of the night. Around 5:00AM he had a fever of 104 and they treated him for that. By the time he woke up this morning he was stable and I don't think the fever has returned.
Today he has had an echocardiogram again along with an MRI of his head. He is on oxygen to keep his oxygen levels at a level that is normal for him. He has increased markers for imflammation as of last night which he didn't have a few days ago. His lungs look good. The blood cultures haven't shown any bacteria yet. He is on three antibiotics now. They are treating him like they did initially for a wide range of possibilities.
Right now we're just waiting to see what the echo and MRI show. His cardiologists should be by later.
Will keep you posted.
10 February 2010
Back Again
Well, our time at home was short-lived. Twenty hours after getting home we were on our way back to the hospital. Nathan's fever went down slightly over night but this morning it was up again and so we called our doctor. He ended up calling the infectious disease doctor's who are treating him for his infection and they wanted Nathan back in the hospital. Our home care nurse said that since he is on antibiotics, his fever should be going down.
Right now the plan is to check his blood and see if there is any bacteria. They might need to change his antibiotic or potentially add one depending on what they find. One unexpected thing that happened since we've been here is his oxygen levels have been a lot lower than what is normal for him. It is perplexing the pediatrician and nurses on call tonight so they are contacting cardiology. They are also doing some diagnostic testing to try and figure it out. Right now he is on oxygen and we will see how it goes. We are expected to be here at least two days.
I will say that our 20 hours at home were great. Nathan got a great night's sleep (so did Richard and I for that matter). No interruptions! Richard and I got to sleep in the same bed together for the first time in 8 days! Oh, around 2:30 this morning I heard Nathan sneeze and then say, "bless you." Very cute. He was also joking today and laughing. Outside of his fever, you wouldn't really know that he was sick at all. We also got to eat real food for three meals as a family together. No hospital food or take out! Oh, and as a side note, the hospital food options for children is surprisingly unhealthy. There are a few options for fruits and veggies but most of the options are not good for you. So, we definitely enjoyed our time at home and are looking forward to being back there with our little guy. I will say it is comforting though to be in a place where people know what to do and Richard and I don't always have to make all the decisions. It's hard being at home wondering if something Nathan is going through is normal, if we should take him to the hospital or at least call the doctor. It takes the guess work out of it all.
Thanks again for your encouraging words and your prayers. We really do appreciate all of you, even those of you we don't know! I hope to post tomorrow that the doctor's are finding answers.
Right now the plan is to check his blood and see if there is any bacteria. They might need to change his antibiotic or potentially add one depending on what they find. One unexpected thing that happened since we've been here is his oxygen levels have been a lot lower than what is normal for him. It is perplexing the pediatrician and nurses on call tonight so they are contacting cardiology. They are also doing some diagnostic testing to try and figure it out. Right now he is on oxygen and we will see how it goes. We are expected to be here at least two days.
I will say that our 20 hours at home were great. Nathan got a great night's sleep (so did Richard and I for that matter). No interruptions! Richard and I got to sleep in the same bed together for the first time in 8 days! Oh, around 2:30 this morning I heard Nathan sneeze and then say, "bless you." Very cute. He was also joking today and laughing. Outside of his fever, you wouldn't really know that he was sick at all. We also got to eat real food for three meals as a family together. No hospital food or take out! Oh, and as a side note, the hospital food options for children is surprisingly unhealthy. There are a few options for fruits and veggies but most of the options are not good for you. So, we definitely enjoyed our time at home and are looking forward to being back there with our little guy. I will say it is comforting though to be in a place where people know what to do and Richard and I don't always have to make all the decisions. It's hard being at home wondering if something Nathan is going through is normal, if we should take him to the hospital or at least call the doctor. It takes the guess work out of it all.
Thanks again for your encouraging words and your prayers. We really do appreciate all of you, even those of you we don't know! I hope to post tomorrow that the doctor's are finding answers.
09 February 2010
We're Home
Today we finally made the trip home! Yay! However, it was not without it's challenges. As soon as they discharged us and we signed the papers, Nathan threw up. We literally had his shoes and clothes on and were about to put his coat on. He was crying the whole time we were getting him ready to go but we weren't sure why. Maybe he felt sick or maybe he was tired and his crying led to his throwing up. At any rate, we were told to wait an hour and see how he did. After the hour was up and he seemed fine, we made our way home in the snow.
Before we got home, we had a couple perscriptions to fill. Then we went home and after dinner, the home care nurse came and showed us how to administer his IV medicine. At that point, we realized that Nathan also now has a fever! We need to monitor him but if it doesn't go away, we need to call his doctor. Richard says it feels like deja vu all over again. I said that we couldn't make this stuff up. Please pray that his fever subsides and that he starts to feel better. I don't want to believe that as soon as we're released from the hospital that we need to take him back. Of course, if that is what needs to be done, we will do it but we were so excited to get him home we hope he gets better and we can stay!
Thanks for all the prayers and encouraging words! Will keep you posted.
Before we got home, we had a couple perscriptions to fill. Then we went home and after dinner, the home care nurse came and showed us how to administer his IV medicine. At that point, we realized that Nathan also now has a fever! We need to monitor him but if it doesn't go away, we need to call his doctor. Richard says it feels like deja vu all over again. I said that we couldn't make this stuff up. Please pray that his fever subsides and that he starts to feel better. I don't want to believe that as soon as we're released from the hospital that we need to take him back. Of course, if that is what needs to be done, we will do it but we were so excited to get him home we hope he gets better and we can stay!
Thanks for all the prayers and encouraging words! Will keep you posted.
08 February 2010
CT Scan Results
Nathan had his CT scan this morning and we received the results. The swelling in the brain has subsided and he will no longer need to take the medicine that was treating that. I also apparently misunderstood what happened during his surgery. I thought they cleaned out and removed the abscess but they actually just drained it. The abscess therefore, is still there but it is smaller. He will have to be on antibiotic therapy indefinitely to treat it and have routine scans to check progress. He is down to one antibiotic and they changed his anti-seizure medicine to one that he can take orally.
He also had an echocardiogram (an ultrasound of his heart) but we do not have the results of that yet.
Nathan is doing well though. Today he was tired all day but that was a result of not sleeping well last night. He is actually starting to say new words which I was pleasantly surprised to hear. One is, "hello" and "I want some." Nathan's vocabulary is very limited and I suspect he might need speech therapy at some point. But it was so nice to hear him say new things. I wonder if the abscess has anything to do with his speech. I will have to ask. He also asked for Isabel a few times today (he calls her Bel). Very cute.
The doctor's are thinking that Nathan will probably be able to go home on Wednesday. I am so happy that we are so close to bringing him home. I look forward to him getting uninterrupted sleep and hopefully resting will speed his recovery. It will be great for him too because he's always anxious when people come into the room, especially when he's sleeping. So many reasons to get him home!
I will hopefully update the results of his echo tomorrow. I think they are looking to see if there is still any bacteria on his aortic valve. The cardiologist did say that his heart is the least of his problems right now. I guess that's good and bad. At any rate, we are praying for complete healing for our little guy and believe God is hearing us and all of those who are lifting him up!
He also had an echocardiogram (an ultrasound of his heart) but we do not have the results of that yet.
Nathan is doing well though. Today he was tired all day but that was a result of not sleeping well last night. He is actually starting to say new words which I was pleasantly surprised to hear. One is, "hello" and "I want some." Nathan's vocabulary is very limited and I suspect he might need speech therapy at some point. But it was so nice to hear him say new things. I wonder if the abscess has anything to do with his speech. I will have to ask. He also asked for Isabel a few times today (he calls her Bel). Very cute.
The doctor's are thinking that Nathan will probably be able to go home on Wednesday. I am so happy that we are so close to bringing him home. I look forward to him getting uninterrupted sleep and hopefully resting will speed his recovery. It will be great for him too because he's always anxious when people come into the room, especially when he's sleeping. So many reasons to get him home!
I will hopefully update the results of his echo tomorrow. I think they are looking to see if there is still any bacteria on his aortic valve. The cardiologist did say that his heart is the least of his problems right now. I guess that's good and bad. At any rate, we are praying for complete healing for our little guy and believe God is hearing us and all of those who are lifting him up!
07 February 2010
Busy Little Guy
Nathan was a busy little guy today. Richard stayed last night and when Isabel and I got here around noon, Nathan was ready to eat lunch. After lunch we gave him a sponge bath and put his own pj's on him and left the room!! He was so excited to see his own clothes and get to wear them. He kept saying, "mine" and "go." Richard carried him out of the room to see the little electronic train set they have on display. Isabel was really excited to show Nathan the trains.
We also had Nathan walk around the room with Richard holding onto him. He did such a great job! He cannot walk on his own but his legs know what to do, he's just unsteady. Afterward, he sat on the little sofa they have here and we played with bubbles. He also "helped" the nurse administer his IV medicine. He interacted well today! He colored some and had fun putting on the exam gloves we all have to wear. Both yesterday and today he was joking with us and laughing even. We haven't heard many laughs lately so it is so great to hear him having some fun. Even before coming here he was sick for some time and wasn't interested in having any fun.
The pediatrician that was here today said that she will arrange to have his CT scan and echocardiogram tomorrow and depending on how things go, we might be able to go home on Tuesday or Wednesday!! Everyone thinks Nathan is looking good and doing well. This is definitely an answer to prayer. We are praying that his CT scan especially shows no new growth of the abscess and that the antibiotics are working.
I want to thank everyone for their prayers and comments on our blog. I am so thankful for everyone who took the time to pray for us. I am especially humbled by comments of people we don't even know who have taken the time to let us know that they are praying! Thank you so much!
I am hoping to post tomorrow that we have a plan to go home! Will keep you posted.
We also had Nathan walk around the room with Richard holding onto him. He did such a great job! He cannot walk on his own but his legs know what to do, he's just unsteady. Afterward, he sat on the little sofa they have here and we played with bubbles. He also "helped" the nurse administer his IV medicine. He interacted well today! He colored some and had fun putting on the exam gloves we all have to wear. Both yesterday and today he was joking with us and laughing even. We haven't heard many laughs lately so it is so great to hear him having some fun. Even before coming here he was sick for some time and wasn't interested in having any fun.
The pediatrician that was here today said that she will arrange to have his CT scan and echocardiogram tomorrow and depending on how things go, we might be able to go home on Tuesday or Wednesday!! Everyone thinks Nathan is looking good and doing well. This is definitely an answer to prayer. We are praying that his CT scan especially shows no new growth of the abscess and that the antibiotics are working.
I want to thank everyone for their prayers and comments on our blog. I am so thankful for everyone who took the time to pray for us. I am especially humbled by comments of people we don't even know who have taken the time to let us know that they are praying! Thank you so much!
I am hoping to post tomorrow that we have a plan to go home! Will keep you posted.
06 February 2010
Small Improvements
Yesterday they removed Nathan's central IV. Now he just has the picc line in his arm which will be there indefinitely. He is also down to one antibiotic. Along with the antibiotic he takes an anti-seizure medicine and something for swelling.
He will probably have his CT scan on Monday so the plan over the weekend is just to continue on with his medicine and see how he does.
I don't think Nathan rests well at night. Well, I know I don't rest well so I can't see how he does. At home he typically sleeps about 11 hours at night with a nap during the day. This is a typical night in the hospital. He gets his antibiotics at 9:00PM. That takes 30 minutes and then the machine beeps and the nurse comes in and removes the tube to his picc line. Then they flush it. Then he gets another med. At midnight, he gets another medicine and then they take his vitals (blood pressure and temperature). Then at 4:00AM they take his vitals again. At 6:00AM he gets another medicine. Then around 7 or 8, doctors come in and check him out. At 8:00, more vitals and then our new nurse comes in and checks him. He does nap some during the day but it's just more of the same with people coming in. I wish he could rest. He cries nearly every time someone comes in and is suspicious about what they are going to do to him (understandably so). It takes a little bit for him to fall back asleep. I know this is just part of the territory. We are thankful that he is well cared for but I also know how good it feels to get good rest at night and can't wait for him to get that.
We are not sure when we will be going home. Like I mentioned, he has a CT scan on Monday and that will be important. We are praying the antibiotics are working on his infection and that it hasn't started to grow again. I think after that, we will have a better idea as to how long we will be here.
Thanks again for all your prayers!
He will probably have his CT scan on Monday so the plan over the weekend is just to continue on with his medicine and see how he does.
I don't think Nathan rests well at night. Well, I know I don't rest well so I can't see how he does. At home he typically sleeps about 11 hours at night with a nap during the day. This is a typical night in the hospital. He gets his antibiotics at 9:00PM. That takes 30 minutes and then the machine beeps and the nurse comes in and removes the tube to his picc line. Then they flush it. Then he gets another med. At midnight, he gets another medicine and then they take his vitals (blood pressure and temperature). Then at 4:00AM they take his vitals again. At 6:00AM he gets another medicine. Then around 7 or 8, doctors come in and check him out. At 8:00, more vitals and then our new nurse comes in and checks him. He does nap some during the day but it's just more of the same with people coming in. I wish he could rest. He cries nearly every time someone comes in and is suspicious about what they are going to do to him (understandably so). It takes a little bit for him to fall back asleep. I know this is just part of the territory. We are thankful that he is well cared for but I also know how good it feels to get good rest at night and can't wait for him to get that.
We are not sure when we will be going home. Like I mentioned, he has a CT scan on Monday and that will be important. We are praying the antibiotics are working on his infection and that it hasn't started to grow again. I think after that, we will have a better idea as to how long we will be here.
Thanks again for all your prayers!
05 February 2010
Another Night - More improvements
It was my turn to spend the night with Nathan. He slept most of the night after dinner.
He did get up around 4:30 in the morning and we had a mini breakfast with some cereal and juice. Then around 8:30 we had a real breakfast, he cannot wait until lunch for some more food.
The doctors will be discussing the short term plan for Nathan today, we will see when he can get home. He is already asking to GO. We are all ready to be home.
He is saying some words that I am not sure what he is trying to say and this frustrates him so much. I can side step it a bit by always ending up asking him if he wants some more apple juice and then he says yes. Will definitely need a plan for sign language.
He is doing great and thanks for all the support.
He did get up around 4:30 in the morning and we had a mini breakfast with some cereal and juice. Then around 8:30 we had a real breakfast, he cannot wait until lunch for some more food.
The doctors will be discussing the short term plan for Nathan today, we will see when he can get home. He is already asking to GO. We are all ready to be home.
He is saying some words that I am not sure what he is trying to say and this frustrates him so much. I can side step it a bit by always ending up asking him if he wants some more apple juice and then he says yes. Will definitely need a plan for sign language.
He is doing great and thanks for all the support.
04 February 2010
Making Progress
Nathan made progress today. He is now out of the Pediatric ICU and is in a regular room!!
He also got another IV put in. It's called a picc line and it goes through the arm with a tube that winds through his vein all the way to the heart. This is something that he could go home with so that he can receive his antibiotics straight into the blood without having to go through the stomach with an oral medication. Apparently, it's somewhat difficult for antibiotics to break through the blood/brain barrier so this removes an extra step in the process making it more ideal. Once we are able to go home, there will be someone who comes to the house and teaches us how to administer his medicine. They will also change his dressing once a week and are able to draw blood through this line.
It appears that there was only one type of bacteria in his brain so the doctor's are going to eliminiate two of the four antibiotics that they were giving him. They are hoping to go down to one soon but we're thankful that he won't need as much as he's been getting.
Nathan still favors the left side of his body. His right side, especially his arm, can move but he keeps it bent and close to his chest most of the time. He answers our questions with head shakes and says a few words. He wasn't very verbal before this though so doctor's can't gather much from his speech. We are praying that he regains all control of his body and that this abscess hasn't done any damage to his brain.
The neurologist plans on having another CT scan done in a week but apparently everything is going the way he expected. In this regard we are praying that the abscess is responding to the antibiotics and that it will not return. We were told that this is a possibility.
We hope that Nathan continues to improve and that it will not take too long to eliminate this infection. The doctor's say that every case is different but at the very minimum he would be on antibiotic therapy for 6 weeks (and that is if his abscess were about half the size that it was). If we add that to the fact that he has to be infection free for 6-8 weeks before heart surgery, we are looking pretty far down the road in planning that repair. So far, Nathan's heart is stable which is great. But we just want to get this little guy on the mend!
Thanks again for all your prayers and support. I hope to have more good news tomorrow!
He also got another IV put in. It's called a picc line and it goes through the arm with a tube that winds through his vein all the way to the heart. This is something that he could go home with so that he can receive his antibiotics straight into the blood without having to go through the stomach with an oral medication. Apparently, it's somewhat difficult for antibiotics to break through the blood/brain barrier so this removes an extra step in the process making it more ideal. Once we are able to go home, there will be someone who comes to the house and teaches us how to administer his medicine. They will also change his dressing once a week and are able to draw blood through this line.
It appears that there was only one type of bacteria in his brain so the doctor's are going to eliminiate two of the four antibiotics that they were giving him. They are hoping to go down to one soon but we're thankful that he won't need as much as he's been getting.
Nathan still favors the left side of his body. His right side, especially his arm, can move but he keeps it bent and close to his chest most of the time. He answers our questions with head shakes and says a few words. He wasn't very verbal before this though so doctor's can't gather much from his speech. We are praying that he regains all control of his body and that this abscess hasn't done any damage to his brain.
The neurologist plans on having another CT scan done in a week but apparently everything is going the way he expected. In this regard we are praying that the abscess is responding to the antibiotics and that it will not return. We were told that this is a possibility.
We hope that Nathan continues to improve and that it will not take too long to eliminate this infection. The doctor's say that every case is different but at the very minimum he would be on antibiotic therapy for 6 weeks (and that is if his abscess were about half the size that it was). If we add that to the fact that he has to be infection free for 6-8 weeks before heart surgery, we are looking pretty far down the road in planning that repair. So far, Nathan's heart is stable which is great. But we just want to get this little guy on the mend!
Thanks again for all your prayers and support. I hope to have more good news tomorrow!
03 February 2010
History Part 2
I realized that I never went into some of the details from Monday so I will do that now in case anyone is interested. Some people got this information and some did not.
To recap, we got to the ER on Sunday around 5:00PM. Went up to the pediatric ward around 8:30 or so. First seizure around 10:30. CT scan around 1:00AM. Transfer to PICU around 2:00. Was in the lounge until 5:30 while they put in the breathing tube and such. MRI around 7:00 followed by emergency surgery. Out of surgery and back in room around 11:30AM Monday.
Some may be wondering how an infection that started in the heart reached the brain. Apparently, everyone has bacteria in their blood. In a heart with no defect, the lungs, liver and spleen filter out the bacteria and it doesn't reach the brain or other parts of the body. In people whose heart works differently, the blood from the heart can reach the whole body therefore spreading bacteria anywhere. Our cardiologist said that an infection could have shown up anywhere, in the eyes, leg etc. In Nathan's case, it was in his brain. They have no idea when it started and the only way to know this was happening in his head was for him to have a seizure. All of his illness last week was due to the infection in his brain.
I just want to praise God for the fact that Nathan did not have any seizures at home. We were told that it was a miracle because this usually happens at home. He was in a position to get immediate help! Also, it is scary enough to watch something like that and I imagine infinitely more if we were at home and not in the hospital where nurses and doctors could immediately take the necessary steps to figure out what was wrong. I am so very thankful for that.
Also, given Nathan's heart defect, they were pretty sure that he had an infection in his brain and not a tumor. Like I mentioned in the History section from my update last night, they weren't sure if it was an abscess or a mass. They treated him for infection before they were sure. It is of course another blessing that he did not have a tumor. They said if he had a healthy heart and started having seizures, it most likely would have been a tumor. Again, a heart with no defect does not send blood with bacteria throughout the body.
I think all the information we have is now blogged and we can just go forward with our updates.
Thanks again to everyone who's praying! We are so grateful!
To recap, we got to the ER on Sunday around 5:00PM. Went up to the pediatric ward around 8:30 or so. First seizure around 10:30. CT scan around 1:00AM. Transfer to PICU around 2:00. Was in the lounge until 5:30 while they put in the breathing tube and such. MRI around 7:00 followed by emergency surgery. Out of surgery and back in room around 11:30AM Monday.
Some may be wondering how an infection that started in the heart reached the brain. Apparently, everyone has bacteria in their blood. In a heart with no defect, the lungs, liver and spleen filter out the bacteria and it doesn't reach the brain or other parts of the body. In people whose heart works differently, the blood from the heart can reach the whole body therefore spreading bacteria anywhere. Our cardiologist said that an infection could have shown up anywhere, in the eyes, leg etc. In Nathan's case, it was in his brain. They have no idea when it started and the only way to know this was happening in his head was for him to have a seizure. All of his illness last week was due to the infection in his brain.
I just want to praise God for the fact that Nathan did not have any seizures at home. We were told that it was a miracle because this usually happens at home. He was in a position to get immediate help! Also, it is scary enough to watch something like that and I imagine infinitely more if we were at home and not in the hospital where nurses and doctors could immediately take the necessary steps to figure out what was wrong. I am so very thankful for that.
Also, given Nathan's heart defect, they were pretty sure that he had an infection in his brain and not a tumor. Like I mentioned in the History section from my update last night, they weren't sure if it was an abscess or a mass. They treated him for infection before they were sure. It is of course another blessing that he did not have a tumor. They said if he had a healthy heart and started having seizures, it most likely would have been a tumor. Again, a heart with no defect does not send blood with bacteria throughout the body.
I think all the information we have is now blogged and we can just go forward with our updates.
Thanks again to everyone who's praying! We are so grateful!
Nathan just had a huge lunch
Nathan just had a huge lunch. He usually eats more than me.
They took him out from all the cables and I was able to hold him for bit. I placed him back in bed after a short while since he did not seem comfortable but wanted to stay with me. His sores are still hurting I am sure where they took the tubes out. There was an IV in each hand, both legs and his groin area today, now they only have 1 on him.
Nathan and I are looking forward to seeing Isabel and Kelly a little later. They lifted the sibling restrictions, and they are already preparing for Isabel's visit. I think they have volunteers with a whole bunch of activities ready for her.
Only got a few hours of sleep last night hanging out with Nathan, but I enjoyed it. Kelly is the one who usually stays, but last night I was able to stay especially since I have internet access in Nathan's room so I am able to work while he sleeps. I had Matt Maher's latest CD on during the night and I really just wanted to burst out in some dancing I was so pumped with how well Nathan is doing.
Another fist pump ... Nathan allowed me to fix his diaper, the nurse changed it but it was not comfortable for him and he pointed to it to let me know it was bothering him and now he is sleeping.
Got to get some work done while he sleeps ... will keep the updates coming.
They took him out from all the cables and I was able to hold him for bit. I placed him back in bed after a short while since he did not seem comfortable but wanted to stay with me. His sores are still hurting I am sure where they took the tubes out. There was an IV in each hand, both legs and his groin area today, now they only have 1 on him.
Nathan and I are looking forward to seeing Isabel and Kelly a little later. They lifted the sibling restrictions, and they are already preparing for Isabel's visit. I think they have volunteers with a whole bunch of activities ready for her.
Only got a few hours of sleep last night hanging out with Nathan, but I enjoyed it. Kelly is the one who usually stays, but last night I was able to stay especially since I have internet access in Nathan's room so I am able to work while he sleeps. I had Matt Maher's latest CD on during the night and I really just wanted to burst out in some dancing I was so pumped with how well Nathan is doing.
Another fist pump ... Nathan allowed me to fix his diaper, the nurse changed it but it was not comfortable for him and he pointed to it to let me know it was bothering him and now he is sleeping.
Got to get some work done while he sleeps ... will keep the updates coming.
First Night without all the tubes
Nathan was awesome the first night. They gradually reduced his pain killers, I think he is only on Tylenol. He only got up a few times and went right back to sleep.
This morning he loved his chicken broth, apple juice, cherry drink and some of his jello, he did not care too much for the iced tea a good sign he is taking after his dad.
Just finished the standup with his med staff, if things go well they will move him out of ICU sometime tomorrow.
I am just a bit concerned about the right side of his body not moving too much, they said this is normal since the infection was on the left side of his brain.
This morning he loved his chicken broth, apple juice, cherry drink and some of his jello, he did not care too much for the iced tea a good sign he is taking after his dad.
Just finished the standup with his med staff, if things go well they will move him out of ICU sometime tomorrow.
I am just a bit concerned about the right side of his body not moving too much, they said this is normal since the infection was on the left side of his brain.
02 February 2010
Update
I am going to try and post updates here just so that everyone can get all the information we have. Sending texts and emailing is becoming a little complicated at times so although we will try to give individual attention, we won't always be able to.
Nathan had a CT scan this morning and it showed that his brain is moving to reclaim the area that once held the abscess. Good news! It was too early to tell the nature of the infection but they will have that information tomorrow. At that point they will know which antibiotics he needs to treat the infection. Right now he is being treated for anything he could possibly have.
The doctors also did an ultrasound of his heart and found something on his aortic valve which they suspected to be bacteria. To get better pictures, they did another type of ultrasound that puts a tube down the esophagus and they were able to determine that his aortic valve has a leak and is thicker than it used to be. They expect that was the initial site of infection. Fortunately, they had ultrasound pictures of his heart from November when we were in the ER with Nathan the first time (two days after we got home - yes this poor boy has been through a lot medically in just over 2 months). They compared the photos and found that his valve did not have a leak back in November. Either way, the antibiotics that they are giving him to treat the infection in his brain will also treat any other infection in his body, including his heart.
Nathan also made good progress today by coming off of his breathing machine! We were very happy about this as you can imagine. After completing the ultrasound that went through the esophagus (sorry, no medical terms here), they wanted to get him off the breathing machine. They actually wanted to get him off of it this morning but it's much easier to do the type of ultrasound they wanted with the tube already down his throat so they kept it in. Soon after the sedation wore off, the nurse asked him if he wanted the tube out of his throat and he actually shook his head yes!! We were so surprised. We don't know if he actually understood her but we were overjoyed that he understood that he was being asked a question and responded. We were still wondering about possible neural damage caused by the infection and this was just another step in the right direction.
So, they took the tube out and he started breathing on his own!! He cries and is uncomfortable but at this point he can have limited pain medicine because one of the risks is respiratory issues and they need to make sure he will continue to breath. He also really wants food but again, in case the tube needs to be reinserted, he cannot have a full tummy. Sometime tomorrow if everything goes well, they will start him on clear liquids. His throat is understandably sore and his vocal cords as well. His cries are very soft.
Additionally, he is shaking his head 'yes' or 'no' in response to questions which is so great!
We are so very thankful for all the people around the world that are praying for us and especially for Nathan. We are so humbled and in awe of the outpouring of love and the willingness of so many to petition God on our behalf. Yesterday morning I was all alone in the hospital trying to absorb all that was happening to our little guy. Doctors were telling me things I didn't want to hear but by the time Nathan was out of his emergency surgery, His peace came. Last night I told Richard that for most of the day I felt at peace and in a situation like that, we know that type of peace can only come from our Father in heaven and we thank all of you for praying. We are being sustained by your prayers and we hope you know that we are so grateful!!
History:
For those interested in learning the background information on how we came to be in the hospital, I will recap the last week.
On January 22, Nathan woke up in the morning agitated. Shortly after, we found out that he was sick with vomiting and diarrhea (sorry if that's tmi!). Anyway, he just had that one episode in the morning but he seemed fine throughout the day. Saturday morning we woke up to the same situation but this day went differently. He vomited multiple times and had a fever. I will mention that this just so happened to be the little guys third birthday!! Poor guy was sick on his birthday and it was his first birthday with his family. This made us very sad. He still got to open presents but he wasn't that interested in playing with his new toys. Moving on... he was understandably lethargic that day but was eating crackers and drinking fluids. By 6:00PM I took his temperature and it was very high so we decided that I would take him to the ER.
Once we got to the hospital they did a battery of tests and gave him an IV. All his tests were fine and actually within a couple of hours he seemed to be doing very well. He had energy and was playing and eating. The staff however, decided to keep him overnight for observation. The next morning we woke up again to the same situation as the past two days. Again though, he was eating well and his fever had gone down so by the afternoon we were discharged and went home. They determined that he had the stomach flu and that is just needed to run it's course.
Throughout the week his fever went up and down. By Wednesday there was no more vomiting. He still had a fever but by Friday that was also gone. He was however by Friday, very lethargic and sleeping way too much. On Saturday, he was so tired that we could barely keep him awake. Since all other symptoms were gone, we started to question whether or not his sleeping was some type of coping mechanism. We thought maybe he was "checking out" or grieving. When you add all of this with the fact that he was just recently adopted, we weren't sure what to think. By Sunday though, he vomited again and then we realized that he was still sick. Sunday (1/31) he was sleeping and we tried to get him to eat and drink but he could not keep his eyes open to even chew! Since he wasn't getting much fluid our pediatrician told us to take him to the hospital.
Once there, they did more tests and found nothing. They gave him an IV and because he was so listless, they admitted him. Not too long after being in the pediatric ward, Nathan had a seizure-like episode. I was freaking out it was so scary. He had several of these and they decided to do a CT scan. Once they got the results, they saw that he either had an abscess or a mass in his brain. They moved him to the pediatric ICU to be better monitored. As soon as we got there, everything went down hill. They checked his pupils and something was wrong. He needed to be incubated. People started flooding into the room and I was escorted out. I sat in a lounge area with people periodically brining me updates or release forms to sign.
About 3 hours later I was able to see him and I was not prepared for what I saw. His little body had tubes everywhere, too many to count and nearly all labeled so that they could keep track of what each tube was for. First the cardiologist and then later the neurosurgeon talking to me about what needed to be done and painting a grim picture. It was so emotionally draining.
Soon after, they took Nathan to get an MRI, which would tell the neurosurgeon what he needed to know before he did the surgery. He went straight to the OR after that and they drained fluid from his brain and cleaned out the abscess which we were told was the size of an orange! His head is so little, I cannot fathom that.
At any rate, the story has unfolded much better than I thought it might when I first learned of his condition - yesterday! God is SO good!
Like I mentioned, I will try to post updates here as I'm able.
Thank you again for all your support and prayers!
Nathan had a CT scan this morning and it showed that his brain is moving to reclaim the area that once held the abscess. Good news! It was too early to tell the nature of the infection but they will have that information tomorrow. At that point they will know which antibiotics he needs to treat the infection. Right now he is being treated for anything he could possibly have.
The doctors also did an ultrasound of his heart and found something on his aortic valve which they suspected to be bacteria. To get better pictures, they did another type of ultrasound that puts a tube down the esophagus and they were able to determine that his aortic valve has a leak and is thicker than it used to be. They expect that was the initial site of infection. Fortunately, they had ultrasound pictures of his heart from November when we were in the ER with Nathan the first time (two days after we got home - yes this poor boy has been through a lot medically in just over 2 months). They compared the photos and found that his valve did not have a leak back in November. Either way, the antibiotics that they are giving him to treat the infection in his brain will also treat any other infection in his body, including his heart.
Nathan also made good progress today by coming off of his breathing machine! We were very happy about this as you can imagine. After completing the ultrasound that went through the esophagus (sorry, no medical terms here), they wanted to get him off the breathing machine. They actually wanted to get him off of it this morning but it's much easier to do the type of ultrasound they wanted with the tube already down his throat so they kept it in. Soon after the sedation wore off, the nurse asked him if he wanted the tube out of his throat and he actually shook his head yes!! We were so surprised. We don't know if he actually understood her but we were overjoyed that he understood that he was being asked a question and responded. We were still wondering about possible neural damage caused by the infection and this was just another step in the right direction.
So, they took the tube out and he started breathing on his own!! He cries and is uncomfortable but at this point he can have limited pain medicine because one of the risks is respiratory issues and they need to make sure he will continue to breath. He also really wants food but again, in case the tube needs to be reinserted, he cannot have a full tummy. Sometime tomorrow if everything goes well, they will start him on clear liquids. His throat is understandably sore and his vocal cords as well. His cries are very soft.
Additionally, he is shaking his head 'yes' or 'no' in response to questions which is so great!
We are so very thankful for all the people around the world that are praying for us and especially for Nathan. We are so humbled and in awe of the outpouring of love and the willingness of so many to petition God on our behalf. Yesterday morning I was all alone in the hospital trying to absorb all that was happening to our little guy. Doctors were telling me things I didn't want to hear but by the time Nathan was out of his emergency surgery, His peace came. Last night I told Richard that for most of the day I felt at peace and in a situation like that, we know that type of peace can only come from our Father in heaven and we thank all of you for praying. We are being sustained by your prayers and we hope you know that we are so grateful!!
History:
For those interested in learning the background information on how we came to be in the hospital, I will recap the last week.
On January 22, Nathan woke up in the morning agitated. Shortly after, we found out that he was sick with vomiting and diarrhea (sorry if that's tmi!). Anyway, he just had that one episode in the morning but he seemed fine throughout the day. Saturday morning we woke up to the same situation but this day went differently. He vomited multiple times and had a fever. I will mention that this just so happened to be the little guys third birthday!! Poor guy was sick on his birthday and it was his first birthday with his family. This made us very sad. He still got to open presents but he wasn't that interested in playing with his new toys. Moving on... he was understandably lethargic that day but was eating crackers and drinking fluids. By 6:00PM I took his temperature and it was very high so we decided that I would take him to the ER.
Once we got to the hospital they did a battery of tests and gave him an IV. All his tests were fine and actually within a couple of hours he seemed to be doing very well. He had energy and was playing and eating. The staff however, decided to keep him overnight for observation. The next morning we woke up again to the same situation as the past two days. Again though, he was eating well and his fever had gone down so by the afternoon we were discharged and went home. They determined that he had the stomach flu and that is just needed to run it's course.
Throughout the week his fever went up and down. By Wednesday there was no more vomiting. He still had a fever but by Friday that was also gone. He was however by Friday, very lethargic and sleeping way too much. On Saturday, he was so tired that we could barely keep him awake. Since all other symptoms were gone, we started to question whether or not his sleeping was some type of coping mechanism. We thought maybe he was "checking out" or grieving. When you add all of this with the fact that he was just recently adopted, we weren't sure what to think. By Sunday though, he vomited again and then we realized that he was still sick. Sunday (1/31) he was sleeping and we tried to get him to eat and drink but he could not keep his eyes open to even chew! Since he wasn't getting much fluid our pediatrician told us to take him to the hospital.
Once there, they did more tests and found nothing. They gave him an IV and because he was so listless, they admitted him. Not too long after being in the pediatric ward, Nathan had a seizure-like episode. I was freaking out it was so scary. He had several of these and they decided to do a CT scan. Once they got the results, they saw that he either had an abscess or a mass in his brain. They moved him to the pediatric ICU to be better monitored. As soon as we got there, everything went down hill. They checked his pupils and something was wrong. He needed to be incubated. People started flooding into the room and I was escorted out. I sat in a lounge area with people periodically brining me updates or release forms to sign.
About 3 hours later I was able to see him and I was not prepared for what I saw. His little body had tubes everywhere, too many to count and nearly all labeled so that they could keep track of what each tube was for. First the cardiologist and then later the neurosurgeon talking to me about what needed to be done and painting a grim picture. It was so emotionally draining.
Soon after, they took Nathan to get an MRI, which would tell the neurosurgeon what he needed to know before he did the surgery. He went straight to the OR after that and they drained fluid from his brain and cleaned out the abscess which we were told was the size of an orange! His head is so little, I cannot fathom that.
At any rate, the story has unfolded much better than I thought it might when I first learned of his condition - yesterday! God is SO good!
Like I mentioned, I will try to post updates here as I'm able.
Thank you again for all your support and prayers!
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