Update

I noticed that I never updated on how things went in the hospital and after we got home.

Nathan was discharged from the hospital on October 26 - just a week after having surgery. Everyone said he did amazing and we agreed! On the 4th day of being home, Nathan's started throwing up and was pretty lethargic. I thought he was getting sick but since he had a follow-up appointment the next day (10/31), I knew that we would get more information then. At the appointment they took a chest x-ray and found that his right lung was completely filled with fluid. They immediately admitted him into the PICU so that they could insert a chest tube and drain the fluid. I was glad they found out what was wrong but was sad for him and nervous that this would be serious. Thankfully, this is somewhat common after having the Fontan so that was a bit comforting.

Nathan is on a blood thinner so they had to check his levels before performing the procedure and it came back as outrageously high (they want his level between 2.5 and 3.5 and it was 13). They initially thought it was a lab error so they repeated the test and found it was in fact, NOT a lab error. So, they started him on vitamin K to get it back into range. By the next afternoon (11/1) they were able to insert the tube. After doing so they got 1 liter of fluid out! Obviously, Nathan felt much better after that. The chest tube continued to drain fluid for about 4 days or so. On Sunday, they removed it and he was discharged that afternoon. We took him back for a follow-up yesterday and there is no reaccumulation of fluid!

I can't tell you how wonderful it feels to be on this side of all of his surgeries. I realize Nathan's always one to pull a fast one and we could be back in the hospital at any time but there are no more planned surgeries and that feels great! I need to schedule his one year follow-up MRI of his brain so the surgeon can see how that's doing but I'm hopeful there's nothing going on there. Infectious disease said that the likelihood of it reappearing is like lightening striking twice. Now that he's had this final procedure, he is safe for those types of infections since all of his blood is being properly filtered just like a normal-functioning heart. Yay!

Thanks for all of you who prayed for Nathan and us as well. I just don't say that but I am truly thankful because I know that without your prayers, we would not have gotten through this in one piece - they really have sustained us. We are so thankful that you have played such a role in our lives. May you all be richly blessed.

It Went Well!

Everything went well with surgery! He is up in the PICU now and is sleeping.

Thank you so much for praying! I'll update as needed.

Heart Surgery on Wednesday - the Fontan

I just wanted to update everyone on the plan for Nathan's surgery on Wednesday. He will have surgery in the morning at 7:00 (Central Time) so we need to be there at 6:00. They expect the surgery to be 4-5 hours long and we will be getting an update about every hour. Afterward, he will go up to the PICU and then we will be able to see him. They expect he will be in the hospital a week. Apparently with this surgery, there is a lot more drainage so he will have his chest tube in for the duration of the week. Once the drainage subsides and they can remove the chest tube and determine that everything is going well with his heart, he will be discharged. The surgical nurse said this takes about a week but everyone is different.

I want to thank you for your prayers! We really appreciate them so much. I will post an update after surgery to let you know how it went.

A Long Year

We have good news! As of Nathan's last MRI at the end of December, his brain abscess is finally GONE! He has 1.2cm of scar tissue left which is unchanged from his MRI in October. He is scheduled to get his line out tomorrow morning. He has to be sedated for it but it isn't supposed to take long. Up until this afternoon, I didn't really think he would get it out. He has a rash on his chest which his pediatrician treated as ringworm. However, we went to the dermatologist this afternoon and she believes it is either eczema or a fixed drug reaction. Neither are infectious so she wrote a note to the surgeon stating it was ok to pull his line. In addition to that I've also been sort of "trained" to wait for the other shoe to drop regarding Nathan's health. I know that sounds pessimistic but I feel like there's always something. Finally, I'm believing that this aspect is over and we'll be able to move on from this.

Tomorrow marks 11 days shy of one whole year that he's had a line in. He had his brain abscess drained February 1st of last year. Believe me when I say it definitely felt like MORE than a year. It was hard and exhausting and mentally and emotionally draining. But I'm definitely looking forward to this year. A year filled with less health issues and maybe more fun. We're looking forward to doing things we haven't been able to do. Nathan hasn't had a real bath since March! Since his line is in his lower abdomen and he can't get it wet, we've had to sponge bathe him. Looking forward to real baths! Looking forward to taking Nathan to the beach for the first time this summer! Looking forward to sleeping this year!

Thanks so much for all of you who've prayed for us!

Amazing

We're HOME!! Nathan was discharged this afternoon and is sleeping contently in his own bed! I am still in a bit of shock. The surgical nurse told me on Monday that the stay would be 3-5 days but I was skeptical. At the very least I thought we would maybe make the 5-day mark. But no, our little guy did SO great that he only had to be in the hospital for 3 days.

They removed his chest tube yesterday because drainage had pretty much stopped. They gave him some "happy medicine" and out it came. They also checked on his heart via an echocardiogram yesterday and the cardiologist said it looked great! He has a follow-up appointment on the 15th.

I have to say it's quite amazing that kids can be so active after such a serious surgery. He has no activity restrictions and can do anything he feels comfortable doing. He is sore and not ready to jump on the furniture (don't worry, we don't allow that) but he's walking around. His incision is only a few inches long and no stitches! Just steri-strips and in due time they will just fall off.

They only did the first surgery and will check him in about 6 months to see if he's ready for the next one. His oxygen levels are between 75-85% and that's where they expected him to be.

Our hospital stay was actually quite easy and we got to catch up with all of the nurses. It does make everything so much easier when you know everyone. :)

A huge thank you to all of you who prayed for Nathan and all of us through this surgery. Praise God it could not have gone better! I am so amazed!

Surgery Went Well!!

Just wanted to let everyone know that Nathan's surgery went well! Everyone was very pleased. They had to patch part of his left pulmonary artery since it was smaller than the right (they mentioned that they would probably need to do this). It is still smaller but only by 8-9mm they say.

Nathan is doing well. He is sleeping but they pulled out his breathing tube right after the procedure. He is in and out of sleep. He's asked for apple juice and water but he can have neither until around 7:00 this evening when they can start him on clear liquids. Then tomorrow if all goes well he will be able to eat anything he wants.

Isabel is with us and at the playroom right now with one of the Child Life workers. I have to say that Isabel was excited to come back to the hospital (at least one of us was, right?). She has a lot of fun here and honestly, they do a great job for the kids and their siblings. She is also amazingly unphased by hospital "stuff". I think that will serve her well throughout her life.

We are also in the same room we spent 5 weeks in last Spring. I actually prayed a couple hours before the surgery was over that we would get the same room. I know it's minor compared to everything else but for several reasons I wanted the same room. I was amazed when the surgical nurse told us we would be in the same room (I don't know why... it's not like I think God can't do that). But it was definitely a reminder that God cares about the little things that matter to us, even in the midst of the big things that matter to us. I am learning that I can ask God for anything, not just the big things. For some reason it's a recent revelation to me. And with that I am starting to involve God in more of my life.

Finally, thank you for praying for Nathan and for us. God continues to bring Nathan through some difficult things. We are so happy to see him doing so well. His oxygen levels are even better than they were and we are looking forward to a smooth and speedy recovery! :)

Surgery Details

Nathan's heart surgery is scheduled for 7:00 on Wednesday morning (Central Time). We have to be there at 6:00. The surgery is supposed to last 3-4 hours. He will spend the next 3-5 days in the ICU until they can take his chest tube out. Once that is out, he is able to go home! We will see how it goes. I hope to post after his surgery. Thanks so much for your prayers!!

MRI Results and Surgery Scheduled

Well there is a lot going on here. First of all, Nathan had an MRI on the 22nd. We got the results this last week and his abscess has gone down to 1.2cm. We will need to continue his antibiotic and he will have another MRI toward the end of the year.

Next, Nathan is having heart surgery on Wednesday, November 3rd. They are doing one of two parts (although we are praying that things go so well they decide it would be good to do both at once). They are going to re-route the blood in the upper half of his body to go directly to the lungs and then to the heart. The next surgery would be to do the lower half of his body. Eventually, his heart will be completely one directional, only pumping oxygenated blood out to the body. It is open-heart and he will be on bypass. They say he will only be in the hospital 5 days. Given he has quite the record of finding ways of keeping himself in the hospital, we are hoping he behaves and that we can bring him home soon. :)

Tomorrow he has a pre-op appointment with his cardiologist where we will find out more details of the surgery, (time, duration, etc.). I will post those details once I get them. We appreciate you keeping Nathan in your prayers come this Wednesday!

Finally (yes FINALLY), I am posting pictures. I knew I couldn't post again without photos for fear of disappointing a fellow New Day mom (this is for you Tanya!). :)

Take care.

In Recovery

Nathan is currently in recovery after his cardiac cath. He is eating snacks and drinking and we hope to head home in a couple of hours.

According to the cardiologist everything went really well, which is great news. I don't have many details on the results because he said he has to take some measurements and then next week there is a meeting where he will discuss Nathan's case amongst his colleagues. He did say that his left pulmonary artery didn't get as big as he had hoped. I was initially concerned about this but I'm letting it go. I can't do anything about it.

I'm very pleased with how well Nathan is doing now and look forward to getting him home so he can be more comfortable. :) Thanks for praying!

It's Been A While

I know it's been quite a while since I last posted. We have been busy with family in and out for quite some time (which has been fun). But to be quite honest, I've also been exhausted. There are people I need to email and so many things I just can't seem to get done that this blog has really fell off my radar. I hope to pick it back up as I know people are probably wondering what's going on here!

So, here's the scoop. Nathan has a cardiac cath scheduled for 8:00AM tomorrow morning. This is in preparation for his 2nd heart surgery which we are expecting to take place in Oct. If he is doing well, the surgeon might determine that it is a good idea to do both his 2nd and 3rd surgeries together. This cath will most likely give him the information he needs to make that decision. We are praying that he can have both of them together just so he doesn't have to have another surgery in 6 months or so.

Also, in preparation for this cath Nathan had to be taken off of his oral blood thinner and on Monday we needed to start giving him shots twice a day. Thankfully, Richard has assumed that role because I couldn't bear to do it. It's awful. Nathan is doing well with it though (as much as can be expected). Richard gives him a little bit of ice cream after each one and that helps. :) Poor boy. I was afraid he'd hate us for it but he shakes it off pretty quickly and he seems fine afterward.

We are still giving Nathan his IV antibiotic every 8 hours. That is the cause of most of our exhaustion because it makes us pretty sleep-deprived. We are going to bed after 11:00PM (his medicine finishes at this time) and we have to take his medicine out of the fridge at 5:00AM (so it can come to room temperature), give it to him at 6:00 and then it's done at 7:00. We are so ready for him to come off of it. Actually, the doctor's mentioned that if the abscess hasn't shrunk anymore by his next MRI, which is Oct 22, they are going to pull his line and stop the antibiotic. They will also take it out if the abscess is gone, of course. There is the possibility that some of what they are seeing is scar tissue. I am praying it's completely gone. That would just give me more peace of mind. :)

Because of Nathan's medicine, we spent our summer at home. Richard regularly pushed the kids in our jogging stroller while we both ran. We almost always started at a park and when we were done the kids got to play. I think the kids really enjoyed both riding and playing.

Nathan is doing so well physically. He can climb up a slide and pedal his tricycle. He has more balance too. He is saying more words now but they still aren't very clear. He has also been evaluated by our local school district and they are going to set up an IEP (Individualized Education Plan) for him. Our insurance doesn't really provide many benefits in terms of speech therapy so we have to go through the school district. We will get the results of their evaluation at the end of Oct. I can't wait to see how speech intervention helps him because he is REALLY motivated to talk. He talks all the time! We don't understand all of what he says but he chats away. He also likes to sing!

I am constantly amazed at how Isabel has taken Nathan under her wing. She loves him so much. We have never had any problem with her adjusting to having a little brother. We had wondered how she would adjust initially since she had been an only child for 4 years but there was no need. God opened her heart wider than we could have even imagined. Even before we left for China she was asking when we were going to get her little sister. Yesterday she brought me a newsletter we received from the agency we used for Nathan's adoption because there was a little girl's picture on it and asked me if we could go and get her. I always tell her if she wants a little sister she needs to talk to Jesus. :)

Anyway, I know this post is all over the place but I wanted to update and share with all of you. Things here aren't without their challenges but we are persevering. There are also many sweet moments amongst the hard ones.

I hope all of you had a wonderful summer. I will post an update on Nathan's cath as soon as I can. Thank you all for your prayers and encouraging words.

Happy To Report

Last week we received the results of Nathan's MRI and I am happy to report that the extra fluid in his brain is greatly reduced! The neurosurgeon said that his body is absorbing it. This was great news because we were previously told that if it continued to get bigger, they would drain it. I was actually fully prepared for Nathan to be admitted into the hospital last week. However, God was so good to give us this gift.

As far as the abscess goes, it is still the same size. The doctor's aren't sure how much smaller it will get. It's currently 1.7cm which is just over 1/2 an inch. We were told that some of the size could be scar tissue. He doesn't have to have another MRI until October. That means he will continue to be on the IV antibiotics every 8 hours until at least then.

October will turn out to be a busy month because his cardiologists want to do his next heart surgery in October as well. We are hoping and praying that they will combine the next two surgeries into one larger surgery so that his brain will be protected from bacteria and he will be less prone to blood clotting. They have spoken about wanting to do this but it will depend on how well he is doing. We hope he is well enough that this becomes viable. He is still on his blood thinner medicine along with several others.

Besides that, he is actually doing really well. He loves riding his little tricycle and he has learned to pedal and steer! He can climb up a slide (a wonderful fact seeing as walking was an issue not too long ago). He eats most anything and often asks for food right after a meal. He loves hair cuts. He loves to go in the car (I cannot overstate this fact). He loves babies and will announce, "baby" whenever he sees one. He copies nearly everything Isabel says or does (or tries to). The two of them get along great. Isabel adores him (this is not to say that they don't have their squabbles but it's all very normal).

I'd like to mention that Nathan has been a part of our family for nearly 9 months! In many ways it seems much longer but I know his hospital stays have contributed to that. Having said that, he has been out of the hospital for three months making this the longest stretch he has been at home without a hospital stay. It fees SO good to say that (and even better to LIVE it). Our home care nurse told me yesterday that one day this will all be a distant memory. Oh to think that one day that will be true.

Thanks so much for all your prayers. We are so thankful to all of you who have stood beside us during this time. You are all blessings to us.

Late Update

I just wanted to pop in let everyone know about Nathan's MRI. He had another one done on June 11. We received the results from the neurosurgeon on the 17th. The abscess went from 2.3cm to 1.7! This was very good news. I will admit I was hoping that it was a lot smaller (preferably gone) but it is going in the right direction so we're thankful. They did notice that the fluid collecting on another part of his brain has gotten larger since the last MRI. If it continues to get bigger, they will most likely drain it. He has another MRI scheduled for July 16 and we will get the results on the 20th. I am a bit discouraged that we are dealing with something new. It seems when we get past one thing, there's something new to deal with. However, I am trying not to focus on that. There is so much to be thankful for that it's definitely not productive to focus on the negative.

Nathan's had a slew of doctor's appointments this month and this is the first week the whole month where he doesn't have something to go to. It feels good! On June 2, we had to take him to the ER for a high fever. They never found anything in the cultures they did so they sent us home! It was quite the miracle as far as I'm concerned. We have been to the ER 6 times and that has never happened before. We got out of there just after 11:00pm and we ended up stopping for donuts to celebrate. :)

I do want to apologize for not updating sooner. I know people are praying and we are thankful.

I have some photo's that I hope to post soon. Until then, take care.

Recent Photos

Here are some recent photos. First, notice that our little guy is sporting a new haircut! Love it! Second, notice that he came to us with some pretty good flexibility. Please excuse the pajama pants, he just got up from a nap. :)

Enjoy.

Good News!

I just wanted to updated everyone on Nathan's abscess and how things are going. He had another MRI of his brain and after meeting with the neurosurgeon, we found out that his abscess has shrunk from 3.2cm to 2.3! The neurosurgeon said that it is shrinking remarkably fast! He also said that there is some fluid on another part of his brain and right now he's not sure about it. He said that it could be because the brain is moving back into place or the paranoid reason would be that it will be it's own abscess. Right now we just have to watch for vision issues as that would be an indicator that something is wrong. He has another MRI on June 11.

Nathan's walking is getting better but I still need to get him evaluated by PT and OT. I haven't done it yet because Richard's company switched insurance companies and I was waiting for the switch to take place. We also had family in from out-of-town and it was nice putting the medical stuff aside for a few days and enjoying their company.

Also, our social worker came by today to do the 6 month report that is required when you adopt from China. I can't believe Nathan has been with us for 6 months already. The meeting went well and was mostly just summarizing Nathan's medical history over the past few months along with how he's doing in general. Our social worker was amazed that he's still with us given all he's been through! We know God has brought him so far and look forward to all that he will accomplish in his life.

I still need to post some pics and will hopefully be able to take some new ones soon. Once we got Nathan's bike helmet, the weather hasn't been that great. On the few days it has been, we just so happened to be at doctor's visits or other things.

Have a great day!

Walking and Talking

Thankfully, we are still home. AND we are still LOVING it of course. :)

In the past week Nathan has had appointments with both his cardiologist and neurologist. His heart is doing great. The doc even said it sounded "really good." Yay. That appointment was Friday. Today we saw the neurologist. On Thursday evening we noticed that Nathan wasn't walking as well as he had been. We've since discovered that he is walking on his heels and not using his toes. I had him tip toe to see if he could use his toes and he was able to do that. His neurologist said it could be medication-related since he was put on a new one the day he was discharged. If it gets worse, he will have to be admitted so he can get an MRI done. He was scheduled for one on Monday the 3rd but the doc wanted to see if I could move it up and I was able to do so. He will have it this Friday. Hopefully, nothing new is going on. Also, we are praying that his abscess continues to shrink! I am believing that it is.

We also have to set up appointments to have him evaluated by Physical and Occupational Therapy.

Given that, Nathan is doing well. He is trying to talk a lot more now. He is stringing words together which is go great. He still needs help with pronunciation so he will probably need a speech therapist but we're enjoying his attempts to communicate. I asked the neurologist about his speech and she said it's probably a combination of his strokes and brain abscess. Tonight he even tried to say his own prayer before going to bed. It was cute.

On an unrelated note, we got Nathan a bike helmet yesterday. He will need one for when we take him and Isabel in our bike trailer. He LOVES it. He wore it most of the day and took it off to go to bed. He doesn't even know what it's for (I don't think) but is content to wear it around the house because Isabel also has one that she wears. We're hoping we can go for a ride before the week is up. I can't wait to see how he likes being in the trailer. He also likes riding a little tricycle we have. He just puts his feet on the pedals but doesn't pedal. He also doesn't steer well but just takes in the sights. Thankfully, the bike has a handle where an adult can push from behind. This works out WELL. Hopefully, I can get a few pics soon.

Well, that's it for now. I will update once we have the results of the MRI - probably on Tuesday.

Take care.

We're Home!!

Nathan was discharged on Friday! We made it home around 4:00PM. Since then, we have been busy filling prescriptions and figuring out his medicine as well as getting the house in order. His home care nurse came by Friday night and went through everything with us which I was thankful for.

On Saturday Nathan pulled off part of the dressing for his central line while he was supposed to be going to sleep. He scratched off a whole the size of a quarter that just so happened to expose the insertion site! This was after 9:00PM and we had to have a nurse come out and change it. When she left, she gave us a nylon sleeve to pull up over his tummy to deter him from grabbing at it. He's also inherited a pair of socks over his hands and arms and a good wrap in a blanket when he goes to bed. We want to ensure that he doesn't do anything to land himself back in the hospital prematurely. Thankfully, the dressing was the only thing that he pulled off.

We are definitely enjoying being at home! It's so great to spend time together here, to sleep in our own bed and do all the things that we normally take for granted.

Nathan has another MRI on May 3. The following day we will have appointments with infectious disease and the neurosurgeon. We are praying that the abscess continues to shrink. If it continues to shrink at the current rate, I estimate that the abscess should be gone by July. We've decided that we are somehow going to celebrate when the abscess is gone and he is off his IV antibiotics. What a joyous day that will be! We are trusting that God will hasten his healing and that he will need no additional surgeries before his next heart surgery which will probably be sometime towards the end of the year.

Thanks again for all your support and prayers. I hope that the next couple weeks are uneventful in terms of Nathan's health and that I have GREAT news to report after his next MRI.

An End In Sight?

It's possible that Nathan could be discharged tomorrow! We are being cautiously optimistic but I can't help but be excited about the prospect. Tomorrow Nathan would have been in the hospital 5 weeks. It's been a long road. I met a mom here yesterday and I was trying to explain some of the things that Nathan's gone through over the past couple months and when you try to summarize it, it sounds completely overwhelming. You just list one health issue after another and it freaks me out that he has gone through so much. He's had seizures, a brain abscess that led to emergency brain surgery, pulling out his PICC line, a stroke, heart surgery and internal bleeding (among countless other less serious issues). And, after all of that he still seems like a normal kid. We are so thankful that he has no neurological issues from his abscess or stroke. He's just doing amazingly well all things considered. I actually don't think he could be doing better given the circumstances.

I will let everyone know once we are finally home. Please know how much we appreciate every prayer said on Nathan's and our behalf. Thanks for taking the time to lift us up in prayer. We could never have done this, and kept our sanity, if not for our faith in Jesus and for the prayers of all of you that brought us peace in very stressful situations.

To God be the glory.

We're Still Here

Sorry for the delay in posting. Not a whole lot has happened since my last post. Nathan is still in the hospital. I kept thinking we were going to be able to take him home but it looks like now we will probably be here another week. :( They are transitioning him to a blood thinner that he can take orally as opposed to the IV drip that he is on. While they do that, they need to wean him off of the drip and check his blood everyday. They don't want his blood to be too thin and risk bleeding or too thick and risk clotting. Apparently, this takes a while. Well, for Nathan it is taking a while.

Nathan no longer has the chest tube in. It didn't come out the conventional way though (which would be for a doctor to take it out). No, as is typical fashion with Nathan, nothing is typical. He ended up rolling around while sleeping and it CAME OUT! I was sleeping too (it was about 3:00AM) and the nurse apparently heard the "drainage box" (don't know the official term) bubbling when she came in. They use water pressure to drain the fluid and if the water is bubbling, there is air which means something was disconnected. Well, something was disconnected - the tube was disconnected from the chest! So, they had to pull it out the rest of the way and put a lot of pressure on the opening to stop the bleeding. Normally, they would have stopped his blood thinner before taking it out so they were concerned with potential bleeding. Everything ended up being fine, thankfully.

Nathan is doing well otherwise. He is getting out of his crib everyday now and walking and playing. His leg muscles are somewhat weak from being in bed so much so we have to hold on to him while he is walking around. It's still cumbersome because he is still attached to an IV and some other monitors but we are making it work. This is good for his lungs, especially. Friday and over the weekend he had some fluid in his lungs and since he wasn't walking much, it was just settling there (as opposed to coughing it up). So, they had people from respiratory come in and pound on his back and chest. Lets just say that Nathan didn't like that at all. I don't blame him either. They were doing it every 4 hours and I was actually really upset that they had to wake him to do this. He would just scream and scream. It doesn't actually hurt but who knows what he was thinking or what defenseless position he felt himself in. So, Richard and I were extra diligent about getting him up and moving so that they would stop it. Eventually though, Richard told them they had to do something else because he's not a typical child. He's had a rough start at life and we're not sure what his first 14 months involved before he resided at New Day (where he was WELL care for). Soon after, they stopped it and we were all very happy.

We are on day 32 of being in the hospital. It is HARD. And at many times feels like we will never leave. It's hard to not be at home together, not having home-cooked meals, not being able to clean the house, not being on a schedule, not being able to enjoy the nice weather we've had, being in one room most of the time and so much more. I know it sounds like I'm complaining but it's all the little things you take for granted that you end up longing for when you can't have them. On the flip side though, there have been many blessings that have come out of having to be in the hospital. By God's grace, we have all had our health and until you spend any length of time in the hospital, you don't really know what goes on inside the walls you so often just drive by. People are really hurting. One boy, who thankfully has been able to go home, scarcely had a visitor, even from his parents for the week or two that he was here. There's a little baby next door who is about 8 months old and has been here nearly her whole life. Parents crying in the hall in the wee hours of the morning while doctor's try to help their child behind closed doors. Richard and I are blessed to know what goes on inside hospital walls because now we know how to respond in the future when someone we know has to do this. We know that a visit from a loved one is a breath of fresh air. We know that the company who donates ice cream makes life here seem a little more normal. Little things make a huge difference.

Besides just knowing how to respond when we hear of people in the hospital, there are other blessings as well. We have met some amazing people here. Some of our nurses have made this experience a lot less difficult - even enjoyable at times. They have touched our lives and are people we won't soon forget. Nurse Sylvia we've had only once (the day Nathan had his brain abscess drained back in February) but she is one of our favorites. She comes by and checks in on us all the time and makes us laugh. She is so great with both Nathan and Isabel. Nurse Courtney is lots of fun too and has been a great source of information. She has also been a comfort when things seemed very overwhelming. She was the one who took Nathan out on the deck before his heart surgery going above and beyond to make things nicer for him. She also gave me a precious token of inspiration that someone gave her many years ago and I was surprised and deeply touched. We love Courtney and we are excited when we find out she has Nathan for the day. Isabel has even said that she was her friend. :) There is also another Nurse, Scott, who first thought of putting Nathan in the wagon. There are several more whom we adore (Eloisa, Liz and Laurie just off the top of my head) but I won't continue on and on. It makes things better (much better) to be surrounded by such great people. Oh, and one of the doctor's here printed out lyrics from a song by Phil Wickham and gave it to me one night. It is about being safe in His arms and the One who holds the world also holds your heart. She said it reminded her of Nathan. I LOVED that she did that. Another blessing.

God has blessed us for this journey as well, too many to count but here are a few:

-Richard works from home so he is able to work from the hospital too. I can't even imagine how difficult this would have been if he had to go out to work. His company has been great too about Richard working a few irregular hours.

-We can bring Isabel to the hospital all day with us. Up until one week before Nathan was admitted in January, siblings under 18 were banned due to H1*N1.

-Nearly all of the "major" things that happened to Nathan happened in the hospital (seizures, dangerously low oxygen levels (turning completely blue), internal bleeding). I cannot stress enough how blessed we were to have immediate care for Nathan as these things happened. It's a miracle that I am very thankful for.

-None of us have gotten sick while Nathan has been hospitalized. If you're sick, you can't be in the room with the patient. Thank You, God!

So, even though this is hard and I was discouraged to learn we would not be going home soon (very discouraged - just ask Richard) it isn't all bad. God is in control and I'm so thankful that He has us in a place where we are surrounded by such great people and that they are taking good care of Nathan. I'm still looking forward to going home though. :) Hopefully, soon.

Thankful

If you read my previous post, you will know that I was pretty discouraged last night. After I had finished my post, one of the nurses came in and told me that they planned on keeping Nathan's breathing tube in because the abscess hadn't shrunk and they were going to see if the neurosurgeon would want to do the surgery today (again, this wasn't the official reading). From their perspective, it didn't make sense to take it out if he was going to have surgery because they would just have to put it back in. I was so sad. I just cried because I really hoped that Nathan wouldn't need this surgery again.

I went to sleep pretty late and every time I woke up I couldn't go back to sleep right away. I just begged God that the doctor's were wrong and Nathan wouldn't need this surgery. When the neurosurgeon came in this morning, he told me that the abscess went down and therefore he wasn't going to do anything!! He said Nathan should have another MRI in a month. I was in utter shock and almost started crying right then. I initially thought it couldn't have gone down that much because two separate doctors told me that the abscess hadn't shrunk. Well, it went down 7mm!!! The abscess went from 3.9cm to 3.2! I am lifting up praises to our God because I KNOW in my heart that God answered the prayers of everyone who has been praying for Nathan. I called Richard this morning and was crying because he didn't know any of this. I didn't call him last night because he was already alseep. I figured I would call him once a decision was made on whether Nathan would have surgery (the neurosurgeon gets in very early). One of the doctor's even let me see the MRI photo's. One from the last MRI and one from this MRI and I could tell that it was smaller and as one nurse put it, I don't even have a trained eye!

So, I have a different perspective today. I am in awe of the goodness our God has bestowed on Nathan and all of us actually. And so very, very thankful.

Nathan is still recovering from the chest tube insertion. He still has it in and it is draining. They are keeping him off his blood thinner until it stops. I am not sure when we might go home but we are over the biggest hurdles right now. It might be possible we could go home by the weekend. We will see. :)

Thanks so much for your prayers.

Two Steps Forward, One Step Back

Well, Nathan was doing really well after his surgery. On Thursday, they took his breathing tube out and on Friday they took his chest tube out. The chest tube was in to drain blood/fluid caused by the surgery. Nathan's oxygen levels were in the mid 70's and even in the 80's while sleeping. He had pink lips and tongue, pink nails and fingertips. It was so great seeing him like that.

We also had a great Easter where he got to go for a ride in the wagon (he LOVES the wagon). He sat on the sofa in our room for several hours and we played some games and read some books. His cardiologist was even talking about him being able to go home soon (providing that the MRI would show the abscess shrinking). We were all really excited. Even the nurses were all coming in to see how great he was doing. We even got Nathan to walk some (with help). Our nurse encouraged him to get up and stop sitting on his bum all the time. :) He protested at first and then realized he liked walking. :) It was all so special and unfortunately, not to last long.

Today, Nathan's oxygen levels went down. He also started bleeding out of the wound where the chest tube was. After a chest x-ray, they determined that he had fluid inside his chest, right around his left lung. So, they needed to put him back on the breathing tube and put the chest tube back in to drain the fluid (his oxygen levels went down because his left lung was under pressure because of the fluid). They were hoping that the fluid was blood and not lymph fluid and that actually turned out to be the case. After that procedure was done his oxygen levels went up.

The main reason for the fluid in his chest was due to the fact that he is on a blood thinner and asprin. His blood couldn't clot and help his body heal from the surgery. It is quite the balancing act to treat him to prevent clots (and thus another stroke) and still be able to heal. He is off his blood thinner right now and they are going to give him blood. He looked so pale today - no color in his lips or fingers, not even pink.

An hour after the chest tube was put in he went down for his MRI that was scheduled today. He actually just got back not too long ago. Two doctors came in and mentioned from what they could tell the abscess hasn't shrunk anymore. They are not the ones who will do the "official" reading so I'm hoping that maybe it's gone down just a little. The neurosurgeon mentioned to Richard that he wanted to see it go down by 5mm. That seems like a lot but we were praying for that. I don't know what they will say tomorrow but we've just conceded that Nathan might be here for another abscess drainage. We prayed and hoped that this wouldn't be the case and a part of me is still hoping Nathan can avoid this risky surgery.

Today was a hard day for me. I feel like as soon as Nathan starts to get better, something happens to set him back. It's hard to watch over and over again. Sorry to sound so discouraged. I will hopefully have a better perspective tomorrow.

It Went Well!

I'm happy to tell you that Nathan's surgery went well! Praise God! His surgery was not an open heart surgery. Like I've mentioned, this is a 3 step process. They went through the side of his chest and put in two shunts. This will route more blood to his lungs thus increasing the oxygen his body gets. Since he was not getting a lot of blood flow through his pulmonary artery, it was smaller than it normally would have been. Now with the extra flow, they expect it to grow. Even though it was small, the surgeon said it was not too small. Yay!

I am in the room with him and there is a noticeable difference in his color. Although all the blueness he had is not completely gone, he does definitely look less blue. His toes actually look pink. He is on a breathing machine for now to see how he does and if all goes well, they will take it out tomorrow morning. Consequently, they are going to keep him sedated. The little guy has moved some and even tried to grab some of his tubing! He's a little feisty even while sedated! Our nurse said that once he realizes that he has some stamina to look out, he's going to be a madman! It is quite astonishing to realize that in his whole life he has never known what it's like to have energy. Praise God that he is getting what he needs so that he can be like other 3 year-old boys. They expect recovery to be 3-5 days.

Oh, the surgical nurse gave me what they used to make the shunt and I will post a picture of it when I charge my camera. Wow, this thing looks so simple and yet it is doing wonders. Eventually, in either the second or third surgery, they will clamp off these shunts. Right now it's just to get him better oxygen levels via better blood flow to the lungs and to grow his pulmonary artery. I think it might actually help his lung to grow too. The left one is smaller than the right since it hasn't had as much blood flowing to it.

In other news, Nathan will be having another MRI next week of his head to see how the abscess is doing. We are praying and hoping that the abscess is still shrinking so that he will not have to have another surgery to drain it. It's just so much for him and if he can avoid another brain surgery, we will be more than happy. I was so happy to see him looking better and then I remember the whole abscess thing and it makes me sad. One part getting better but there are still other issues. One day at a time I guess.

Thanks for all your prayers. We will keep you updated on how he does but so far so good and we are SO THANKFUL! God is GOOD!!!

Scroll

Scroll down to see the details about tomorrow's surgery (technically today's surgery since it's just after midnight).

Some Pics

Here are just a few pics, Nathan loves his wagon, I think he wants to stay in this all day.

Notice all his hardware, it looks like he has landed on an alien planet and he is exploring in his rover.

Isabel and Nathan, she somehow always gets him to smile or laugh.

Details

Nathan's surgery will be at 6:30 tomorrow morning. He was supposed to go a little bit later but the first spot opened up so he was moved up. The surgery is supposed to last about 2 hours with an additional 45 minutes of prep (putting in lines, etc.). Our nurse said that it's possible that Nathan's fingers won't be blue after this surgery. I was surprised by this but would LOVE to see his fingers nice and pink. We'll see. I'll take him getting through the surgery okay and having his oxygen levels in a more stable range. :)

When I checked our blog today, I was blown away by all the wonderful comments. Thank you so much for your prayers, scripture references and support! They meant so much and brought me to tears. Thank you all! We were particularly happy to hear from you, Jimmie. We think about you and Eddie a lot too. I am going to have Richard email you. We would love to hear how Eddie's doing!

Today was a really good day for Nathan. Our nurse took him for a ride in a wagon and he got to go outside. It was actually pretty nice out and it was the first time he's gotten to go outside in a while. It was also the first time he got to go outside without a coat on since coming home in November! The past few days he's gone for rides around the unit but today was definitely special. The pediatric ICU is brand new, probably less than 6 months old and they have a deck with tables and such. I think Nathan really enjoyed it. I have a couple pictures to share of him in the wagon but my camera battery died and the charger is at home. Hopefully, I'll be able to share them soon. Also, I can't wait to show you all the equipment we have to take on these little rides. We are quite the sight!

I just have to mention that we really love the nurses Nathan has. The nurse he had yesterday and today is particularly sweet. She definitely goes above and beyond to make things better for the kids.

Okay, I will let all of you know how things go tomorrow. Thanks so much for standing by us. Your prayers truly mean the world to us.

We Have A Date

Sorry for the delay in posting. I am exhausted. I am behind on email too so if I owe you an email, I'm sorry! I will hopefully catch up soon.

I just wanted to let everyone know that Nathan will be having his heart surgery on Wednesday! We are very excited about this. They are not going to wait until 10 days after his cold goes away as he really does need to have it soon. Giving him blood didn't help his oxygen levels that much and he gets worn out pretty quickly now-a-days. Standing up in his crib to pull his pants up will labor his breathing considerably. He will even randomly go to sleep just because his heart and lungs are working so hard. He also isn't that interested in eating much anymore (and our little guy LOVES to eat). They have him on a drip to get nutrients into him. The doctor's and nurses have decided to not do anything that will agitate him. If he gets upset, his oxygen levels go very low. It's hard for Richard and I to realize how sick he is sometimes but one of our nurses spoke with us today and we have a better idea. The type of oxygen levels Nathan has while he's awake (in the 40's and 50's) are levels that would require a breathing tube. She said they typically don't accept anything lower than 70 before putting in a tube. I think our little guy amazes the staff here. He amazes us too because every additional bit of knowledge helps us realize how God continues to sustain him.

We ask that you continue to pray for Nathan, especially on Wednesday. We don't know the time of the surgery yet but I will let you know when we do. Nathan isn't in optimal health to have heart surgery but at this point there is no option to wait. I am happy he is having surgery but as you can imagine, still a bit nervous. This surgery is also just part 1 of 3. The next one will be in 4-8 months we're told.

Thanks for praying, we are so grateful! Also, thanks for your encouraging comments. We read them all!

MRI Results

I FINALLY get to be the bearer of GOOD news and share with you that Nathan's abscess has SHRUNK!! Praise God!!! We were very happy to receive this news, of course. The neurosurgeon will be back tomorrow and we will find out what his recommendation is. He is very conservative so we are hopeful that he will want to wait on surgery. If it were up to our ID doctor, Nathan would have had the surgery already. I don't know what's up with her but she really wants him to have this surgery. The MRI from March 5 indicated that Nathan's abscess had not shrunk at all from the time he was discharged from the hospital in February. The measurement was 4.6cm. When we came back to the hospital on March 12 because of the stroke they decided to do another MRI, which took place on March 13. Apparently, the abscess from that MRI measured 4.1cm. We were never told about this shrinkage. I would like to assume that they were mostly focused on the stroke and that it was an oversight. The MRI he had yesterday indicated the abscess measured 3.9cm. We are just so thankful for all your prayers. God is so good and we believe He will continue to shrink this thing. I couldn't be happier with how much it has gone down in a mere 18 days after having not budged in several weeks. At this rate it will be gone long before our ID doc's prediction of 1 year.

Nathan is still having issues with his oxygen levels. After a couple days of asking about his hemoglobin levels and questioning whether or not they've taken too much blood and getting nowhere, one mention to our cardiologist and the next thing we know, Nathan is getting blood. This was a little frustrating to us. Whenever we mentioned this, most of the docs on the floor would act like his hemoglobin was fine (and it is actually high for someone with a healthy heart). But it's not fine for Nathan and thankfully, our cardiologist gets things done. Nathan is on oxygen and for the past couple of days he could barely eat without his oxygen levels dipping low enough to need an additional oxygen mask. He is hanging out in the 50's and 60's which is definitely below his baseline. However, when he eats or gets out of bed or even exerts much energy, he is going down to the 30's. The only time he is doing normal for him is when he is sleeping!

Also, if you can believe this, Nathan has tested positive for the common cold. You wouldn't think this could be possible with all the medicine he gets. Anyway, our cardiologist said they will not do his heart surgery until 10 days after his cold is gone (I would assume this would be the case for his brain surgery but hopefully that's not an issue). I completely understand this but goodness, we just want him to get this repair. We are hoping that if they decide not to do the brain surgery that maybe he could be stabilized enough to go home and then he could come back for his heart surgery.

A couple more things, we're still worried that Nathan is being traumatized here. I think he feels like he has no control over what people do to him and maybe feels like we don't even help him. He is "passing out" for the slightest things. If strange people come into the room and start to do anything to him, he screams and then just goes to "sleep." It's hard to know if this has anything to do with his oxygen intake but he never used to do this. It started with being stuck by the needles so often and now he does it more frequently. He had an echocardiogram today and did it then. That's just an ultrasound of the heart so it doesn't hurt at all. It's just people can do whatever they want to him (from his perspective) and he has no say. Again, he doesn't know that he's sick and needs these things. Please pray for his emotional state.

It also looks like he might be getting the same type of rash around his new line that he got around his old one. Not good! We need this line in and I don't know what they will want to do if it gets really bad. Not to mention the fact that it is awfully uncomfortable to have itching and/or pain to deal with. This little boy has had so much to deal with.

Again, thanks for praying. We are so thankful for every single prayer said on our behalf. We know that there are many of you praying, even if we don't know you personally.

On my way home with Isabel last night we were listening to, "You Never Let Go" by Matt Redman singing up a storm of praise for God's goodness. We have our rough spots but we never question God's love for us and for Nathan. Here are the lyrics. Maybe they will be an encouragement to you.


Matt Redman - You Never Let Go

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth

Chorus:

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

Another Something

Well, it's been a few day's since I've posted an update. On Thursday, Nathan got another line put in so that they can draw blood along with administer antibiotics and such. It's is actually tunneled from the crease of his leg into his abdominal area which is where it comes out. The cardiologists did not want another line put in his arms so that they can preserve his veins and arteries for his cardiac surgery. We are so happy that he has this new line because he was understandably not tolerating getting stuck every time they needed blood. And they needed blood a lot. They needed to check it every 4 hours until his blood thinner was in the proper range. Incidentally, he needs more than double the amount of blood thinner a person of his size would need to get into the right range. I think that threw the hematologist for a loop.

While Nathan did have a couple of IV's in, the one they could use to draw blood eventually stopped giving blood so that is why he needed to be stuck so much. After a while, he started passing out when they drew blood. The neurologist thinks it might have been due to trauma but I've heard this can happen so hopefully, he's not too scarred.

They've also put Nathan back on the antibiotic that he is allergic to. It creates a rash but it's the best one for his brain infection. Right now they think they can deal with the rash because the infection is more important. Nathan has had some rough nights with itching and not being able to sleep well. He is now on many creams and antihistamines to combat the rash. They have helped but he's not without discomfort. Poor boy.

Until yesterday we felt like we were in "waiting mode" for his brain surgery (or at least the MRI which we are of course praying will shrink and he won't NEED brain surgery) while the blood thinner was working to prevent new clots. Well, two episodes took place that indicated that he might be having some additional issues. Yesterday around 5:00PM and also around 9:00PM this evening, Nathan had a very agitated episode where it appeared he was having a tantrum and then his oxygen level plummeted. This behavior change seemingly came out of nowhere. Yesterday he went down into single digits and turned gray! Today he went down very close to single digits. For those of you who aren't aware what that means, it's the level of oxygen our body gets. For those of us with a healthy heart, our levels would run in the high 90's. Nathan's baseline is in the 70's. Yeah, single digits is scary stuff! Both times they increased his oxygen and put an additional mask on him until the level came up. He had a chest x-ray after this happened yesterday and they drew blood to check some gas levels. The blood came back perfect and I haven't heard about the x-ray. If there was an issue, we would have heard about it. They believe this is a cardiac issue.

Today they wanted to do an MRI to make sure there were no additional strokes based on yesterday's episode. Nathan had to fast until 4:00PM and then they came in and told us they were going to do it tomorrow. Let's just say I was a little more than annoyed that they made a 3 year-old wait to eat only to postpone it until tomorrow. Then, right after we fed him, they called and changed their mind. Nice. So now he has to fast tomorrow. I guess this whole thing stemmed from what happened when he got his new line. Everything went smoothly until they were taking him out of the sedation and his oxygen levels went down (into the 40's). I think they wanted more people around just in case something happened and they needed them. I don't get much of it because I think you can decide before 4:00 what you need and if you can get it. That's just me. I am of course pretty far removed from that type of decision making.

So, that's where we're at right now. Richard and I are confused about why Nathan is having these oxygen issues. We think they might be taking too much blood again but once we posed that question to the doctor's on the floor, we were reassured that wasn't the case. I asked our nurse his hemoglobin level and it is lower than what our ID doctor wants so I will be asking the ID doc about it tomorrow morning. Our specialists are good but sometimes the doctors on the floor aren't AS familiar with every detail of Nathan's case (which would be difficult because there are several patients they have to know about).

Thanks so much for your prayers. I hope we get GREAT news about Nathan's MRI tomorrow. I will let you know what we find out.

Take care.

Thanks for praying for us

Nathan is being pumped with medicine and he is breaking out in rashes. He is very aggravated and has his unique way of asking for help. This basically means, it is better to stay up and not even try to fall asleep, I am less frustrated if I just plan to stay up. I allowed the thought about how could we go through this for the next four weeks to dance in my head, but then I realized that this is the selfish part of me that needs to die and be replaced with a passion for the love of Jesus. I am so sadden by how selfish I am and how much I try to make my life comfortable.

So I thank everyone who are praying for us, because of your prayers it is 2 am in the morning and I am watching the second video from http://www.brookhills.org/media/series/radical/ which is titled The Gospel Demands Radical Sacrifice. So I ask for more of your prayers not for sleep at night, but to experience a passionate love for Jesus and for that love to flow and to touch other people's lives allowing them to experience this amazing relationship with Jesus. A relationship with Jesus is what brings true joy, I can say that this experience although very difficult brings a joy from deep down in my heart, a joy so special that I have a hard time comprehending it.

Also continue to pray for Nathan that he would not experience any pain or rashes. We are praying that his infection decreases in size so that they would wait on the brain surgery.

I will let you know how the rest of the videos go.

We love you all and thank you for walking with us.

Pics

Here are some recent pictures of the kids.

This pic is of Nathan after his first surgery and after our first release from the hospital (the one that lasted 20 hours). I took this not long before we went back because of his fever.




These were taken on March 9, three days before his stroke. They're not the greatest but he was doing really well then. Isabel loves doing puzzles and we're hoping Nathan starts too as well. :)








This was taken with Richard's phone. Isabel jumped into Nathan's crib in the hospital. I think it was taken Monday. It looked cute at the time but Nathan does look pretty sick in this one. Or maybe he just isn't too thrilled with big sis in his bed.





So, I took a couple pictures a few minutes ago so that you can see he is a little better. Actually, these pictures look like he isn't sick at all! Richard was playing with him off to the side to get him to laugh.

A Heavy Day

This morning all the major doctors who are treating Nathan had a meeting to discuss the best plan to get him better. This included his cardiologist, hematologist, neurologist/neurosurgery, infectious disease and ICU. They came up with a plan and our cardiologist sat with Richard and I and discussed what they decided. Each of these doctors have competing priorities. The hematologist is trying to make sure Nathan doesn't have any more strokes. The infections disease doctors along with neurology want to treat his brain abscess and cardiology wants to repair his heart. In an ideal world, the hematologist would want 6 months to treat Nathan with an anticoagulant. Then ID and neurology would want to treat Nathan for the abscess 6-9 months, if not a year. Then he would be ready for his heart repair. Unfortunately, things are not ideal. If Nathan does not get his heart fixed, he is at risk for strokes and infection. So, the plan is for Nathan to have his abscess drained next Thursday or Friday. This gives the hematologist about two weeks from Nathan's initial stroke to treat/thin his blood. This past Monday, they were actually thinking of doing this surgery yesterday but the hematologist wanted to wait. He said that having a stroke is like an earthquake where after the initial one, there are aftershocks. He wanted at least a week or two to treat him before any type of surgery. If things go well with the draining, they plan on doing his initial heart surgery March 31. He will need 7-10 days to recover from that.

Right before Nathan has his abscess drained, the neurosurgeon will have him go for an MRI. If the abscess has shrunk considerably, they will most likely NOT do the surgery and plan on doing his heart surgery instead (not the same day). Dear friends, this is what we are praying for. Of all the procedures Nathan needs done, they are most nervous about draining the abscess since it is in his brain. Especially since he just had a stroke he is at risk for bleeding in his brain. The first 24-48 hours after the surgery is the most crucial.

Tomorrow Nathan will have a procedure to put a port in his hip area (not sure on the exact spot) so they/we can administer his IV antibiotic and also to draw blood. We are thankful for this as Nathan has been stuck quite a few times to get blood. They need to do this frequently so that they can tell how well the anticoagulant is working. He has two IV's placed but one is for the anticoagulant drip and the other has stopped giving blood for the most part. Sometimes they can get it but it's hit or miss. They are not going to put another PICC into any of the arteries so that they preserve those for what the cardiologists want to do when it comes time to start his heart repair. We will most likely be in the ICU for 3-4 weeks, if not longer for all of these things to be done.

As you can imagine, this was a hard day. I'm still kind of processing all of this. Richard is handling this much better than me but for those of you that know both of us, you could imagine that would be the case. For those of you who don't, Richard is laid back and super optimistic. Apparently though, the doctor's think we are doing a wonderful job with the news so I guess I can put up a good front sometimes. The tongue-biting to keep from crying in front of the cardiologist really worked for me. :)

On a positive note, Nathan had a good day. Some of the issues I mentioned in a previous post about his speech and coordination have subsided. He is talking like he used to and he is nearly back to normal physically. Being in a bed for a few days has weakened his legs but he's no longer leaning over and his coordination is a lot better. His rash where the PICC line was is also doing better.

This next week is a crucial time for prayer and I would love nothing more than for Nathan to go for his MRI and in 30 minutes get rolled back into his room bypassing a risky surgery thanks to our awesome God. Our cardiologist even mentioned that if by some miracle Nathan's abscess has shrunk considerably, that she is certain the neurosurgeon would want to wait on surgery. I think she opened the door with that comment! :)

I appreciate all your prayers. I don't know how to convey how much they mean to us except to just thank you for keeping Nathan and all of us in your prayers.

I have been trying to remember to post a few updated pictures of the kids from last week before all of this started. I keep forgetting to bring my camera to the hospital. Hopefully soon. I know you'd like to see Nathan and how well he was doing last week. I haven't posted any pics since China. Also, Richard has a couple pics on his phone of Isabel and Nathan in his crib in the hospital. They're pretty cute too. Hopefully, tomorrow.

Good night.

Monday's Update

A few things are going on with Nathan. First, he had to have his PICC line removed today. He developed a rash under the dressing a little over a week ago and it got really bad. Last night it was oozing and overnight they even had to change the dressing. This afternoon he starting complaining about it a lot, saying, "owie" over and over. They finally took it out which is both good and bad. Not having it there will give the skin a chance to heal but now he had to have two IV's placed.

A second thing is that we noticed he is having a bad reaction to one of the antibiotics he is on. It makes him really fidgety and his behavior is erratic. We barely noticed it at first because he was also on Benadryl which makes him sleepy. But last night he woke up all night long and this evening it was very apparent that he was not acting normal. I neglected to mention in my last post that he developed another rash over most of his torso last week that progressively got worse. While in the hospital they took him off the antibiotic that he was taking at home along with his anti-seizure medicine and it cleared up well. They don't know which of the two medicines are responsible for the rash but he needs both of them so I am not sure how they will proceed. That is the reason he is on a different antibiotic, the one causing this behavioral reaction.

Thankfully, Nathan has had no additional strokes since yesterday afternoon. He had an ultrasound of his extremities to check for the clotting source. He also had an EEG to check his brain activity. We haven't gotten the results of either of these tests yet.

One thing I will mention is that I am very worried about Nathan's emotional well-being. I ask that you pray for him. He doesn't have the vocabulary to express his feelings and I can't imagine how difficult that must be. Richard and I have noticed signs of regression. I don't even know if he trusts us. From his perspective, given all he's gone through, I don't think I would blame him. In his mind all we've done as his parents is to take him to one painful experience after another. He doesn't understand that we are just trying to get him better. He doesn't know how sick he is or what this all means. For any child this is a lot to handle, but more so I think for someone who's just experienced the biggest transition of their lives - being adopted by strangers into a foreign country. We try to comfort him as much as we can but there's only so much we can do.

Finally, we learned today that it might take a year to get better from his abscess and be in a position to have heart surgery. I haven't spoken with the cardiologist yet but I am worried that is too far off. Ultimately, his heart is the reason he is having these other issues.

Thanks for praying. We are so grateful!

A Lot Going On

I wanted to post an update regarding our doctor's appointments on the 8th and 9th but so much has happened that I haven't had a chance.

We had a cardiologist appointment on the 8th and they did an echocardiogram and everything looked really good. The bacteria on his aortic valve seemed to be barely noticeable as well which was good news. On the 9th we had appointments with both infectious disease and the neurosurgeon. This is when we found out the results of the MRI Nathan had on the 5th. Apparently, the abscess hasn't gotten any smaller. Both doctor's seemed really surprised with how well Nathan was doing given the results. I think they both feel like the abscess needs to be drained but the neurosurgeon especially wanted to wait since Nathan was doing so well. He was scheduled to have another MRI on the 19th with another appointment with the neurosurgeon a week later but unfortunately, Nathan is now in the hospital.

On Thursday evening, Nathan pulled out his PICC line about 4cm. He was laying in bed and we heard him scream. The end of the line was sutured to his arm and those broke. We don't think this was intentional because he doesn't like to know that his PICC line exists but we're not sure what happened. It's possible he was chewing on it and pulled his arm. We don't know. We called our home care nurse and she came out and looked at it. By the next morning, our doctor had set up a chest x-ray to determine what was going on with the PICC. We went into the hospital and they decided to change it. They changed it out with no problems and we were home by 3:30 in the afternoon on Friday. Less than two hours later, we started to realize that Nathan couldn't see us. He wasn't focusing his eyes on us so we started to test his sight but putting our hands close to his face to see if he would blink or flinch. He didn't do any of this. We called the doctor and while we were waiting for her to call us back, Nathan layed down on the sofa and his eyes started to roll back. We thought he might start having a seizure so we called for an ambulance and they took us to the hospital.

Once in the ER, Nathan regained his sight but he was understandably irritable. Overnight into Saturday he did fine and actually did well most of Saturday. He had an MRI on Saturday and that determined that the episode on Friday night was a stroke. A blood clot from somewhere in his body traveled up to his brain and blocked blood flow and consequently oxygen to that portion of his brain. Then around 7:00PM on Saturday he had another one. He was then moved into the ICU. Since then, he had three more strokes overnight and one this afternoon. They are calling them mini-strokes and apparently they are to be expected. They put him on an anticoagulation drug to thin his blood to prevent further clot formation.

Today, they checked his heart to see if that was the origin of the blood clots and they found his heart to be fine. He also had a CT scan today but we haven't gotten the results of that yet. They are going to do some ultrasound-type test to check for blood clots in his extremities. The hematologist mentioned that his PICC line could be the source of his clots and although we have no evidence to support that, I think that might actually be the issue. I hope he doesn't need to have it taken out because that is how he gets the antibiotics to treat his brain abscess. They are also planning on doing an EEG to check his brain activity.

Okay, that's a lot of information. And if you can believe it, I'm sure I am leaving something out.

As far as how Nathan is doing, he is not quite himself. He perpetually leans over somewhat and his coordination is not quite normal. The left side of his face droops a tiny bit. His speech, although it was never perfect, is a little worse. It is really hard to watch him. But I read something last night that really spoke to me. We are not here to live a comfortable life. Although I know this, I sometimes need to be reminded. Sometimes I start focusing on myself and how hard this is for me. Yeah, that's selfish because Nathan is the one who's suffering. Thankfully, God puts me back on the right path and shows me that this isn't about me but Him. It's about giving up your life to live a life that's infinitely more rewarding.

Oh, a couple cute things about Isabel. She is doing so great by the way. Amazing actually. When we got to the ER, a girl took her to the waiting room to make some necklaces and the girl asked her if her brother came to the hospital in an ambulance and Isabel told her, "No, he came from China." So cute. Then last night while Nathan was having his episode and they took him over to ICU, I was crying and Isabel was telling me that it was okay. I told her we needed to pray for Nathan because he was sick so she told me that she would pray. Here is what she said, "Dear God, please help mommy stop crying. She always cries when Nathan is sick. Please help Nathan to get better. In Jesus' name, Amen."

Amen

No News is Good News!

I'm sorry it's taken me so long to update everyone. There actually hasn't been much to say. Nathan has not had a fever that required us to take him back to the hospital! We are so grateful for that. It is so nice being home and having a normal routine.

Nathan is also doing a lot better walking and using his right hand/arm. When we first got home he was very unsteady on his feet. A lot of it had to do with the surgery but I think maybe not walking for nearly 3 weeks might have been a factor as well. He is walking around the house pretty well now. He still uses his left hand more than his right but he is doing better engaging his right hand.

He has an MRI on Friday and next Tuesday we will bring that CD to the neurosurgeon who will hopefully give us good news about the abscess. I will update once we get the results of that.

We continue to give Nathan an anti-seizure medicine twice a day along with his IV antibiotics three times a day. I don't know how long he will be on those but maybe we will have a better idea next week. He also has appointments scheduled with his cardiologist and a doctor from infectious disease. The infectious disease doctors are the ones who monitor the treatment of the infection and decide what type of antibiotics are administered.

Our home health care nurse is really nice. She comes out once a week to take labs and change the dressing on Nathan's PICC line. It's great being able to talk to her and ask her questions.

Thanks so much for lifting us up in prayer!

We're Home Again!!

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.