Anes continues to do so well. The VEEG is off and he is out of the PICU. He is now on the pediatric floor and doing better each day. Day 3 was probably the "worst" for him in terms of general recovery. He was more awake and aware and started to run a temperature (which is generally normal for the hemi kiddos post-op) and you could just tell that he was feeling crummy. After some Tylenol and pain med, he was feeling a lot better and was able to sleep. Of course, because of the fever, the medical team collected blood to culture just to be sure. So far, they are clear. Oh, and no sign of the "s" word. YAY!!!
Yesterday, he was really looking great! His right eye is now fully open and he is trying to smile in response to the silliness that we all give him. He is making all these little vocalizations when he is upset and cries, which he does now. Aldina said he did not do these things before. And while it is tough to see and hear him cry, it is so good to see him have this completely 'typical' response. We take that as a good sign of the things to come !
Oh how I wish that I could share a picture so that you can see how amazing he looks. You just have to trust that he is looking great. I am so proud of him...such a tough little guy! He is drinking some from the bottle again (after not wanting to on day 3 probably because it hurt to "suck") and eating baby food from a spoon. He is taking all his meds orally, though he really doesn't want to swallow that yucky tasting Topomax. He lets you know how much he dislikes that!
Last night we brought dinner over to the hospital. Since the cafeteria food is not-so-good, they has been going to the Hardee's across the street and had had just about all the burgers they could stand. So, we decided to bring Italian (spaghetti, chicken parmesean, chicken canolloni, etc) over and all have dinner together in the room. I think it was a nice change of pace and we all enjoyed the chance to eat together and talk.
It has been awesome to see so many people step up to support them over these last few weeks. Every interpreter that has come to assist has fallen for Anes and Adis and Aldina. Now they just come over to check up and hang out with them all of their own accord. It is so great to see that. The human spirit...moved by a child. Thank you Ruzica, Milan, Marko, Tina, Josh...you all have been such great support and comfort! And now, I suspect, life-long friendships have been made!
That's it for now. I'll update later after I check in on them all. Have a great day!
Much love,
Aunt Holly (that is what I call myself now...Anes' US aunt..haha)
P.S.: My own Sweet Pea turned 4 years old on Friday! Hard to believe...where did 4 years go?
Sunday, July 19, 2009
Thursday, July 16, 2009
Day 2 is GREAT too!
Anes' second day of recovery was another great day! WOW is the only word I have for what I see each time I visit him. He is one tough little man! He is drinking from a bottle, taking his medicines by mouth (admittedly with a little prodding for the ones that don't taste great). He is using his right hand just as before...trying to get his pacifier to his mouth. I think the right eye being swollen nearly shut is making that task a bit difficult because he can't see so well from that side. He will get it though in the days to come, as that swelling goes down and he can fully open his eye again. He was able to open it a sliver today, which was more than yesterday.
Overall, the head swelling seemed no worse today. Really, it is A-M-A-Z-I-N-G just how great he looks. He was still hooked to the VEEG, but tolerating it well. Still no sign of any seizures....PRAISE GOD! Aldina was told that it would likely come off tomorrow sometime and he would be moved out of the PICU. His stats are all great. No nasal canula for oxygen today. No IVs. He is only hooked to the VEEG and the vitals monitoring leads and still with the central line. That's it! What a little champ. He doesn't fuss much at all while lying in the bed...only when being moved 'cause it hurts his little head. Aldina said he was trying to smile at Adis this afternoon and that he gave them more of his little "kiss smacks"...so sweet.
Thank you all for being such a fantastic prayer and emotional support team for Anes, Adis and Aldina. They are so thankful for everything! I wish you could all meet them and know them as I do now. They are wonderful people who have shown us all again just was great FAITH looks like. Even though I have been present for this...I still have to remind myself that this has really happened. A beautiful boy from Bosnia came to America to be treated by a surgeon and medical team who cared enough to make it happen because they felt it was the right thing to do. Almost a year after that first email from Asmir...it really has happened.
Please say a little extra prayer of "thanks" to our loving God today. He saw to it that this would happen for Anes.
In FAITH,
Holly
Overall, the head swelling seemed no worse today. Really, it is A-M-A-Z-I-N-G just how great he looks. He was still hooked to the VEEG, but tolerating it well. Still no sign of any seizures....PRAISE GOD! Aldina was told that it would likely come off tomorrow sometime and he would be moved out of the PICU. His stats are all great. No nasal canula for oxygen today. No IVs. He is only hooked to the VEEG and the vitals monitoring leads and still with the central line. That's it! What a little champ. He doesn't fuss much at all while lying in the bed...only when being moved 'cause it hurts his little head. Aldina said he was trying to smile at Adis this afternoon and that he gave them more of his little "kiss smacks"...so sweet.
Thank you all for being such a fantastic prayer and emotional support team for Anes, Adis and Aldina. They are so thankful for everything! I wish you could all meet them and know them as I do now. They are wonderful people who have shown us all again just was great FAITH looks like. Even though I have been present for this...I still have to remind myself that this has really happened. A beautiful boy from Bosnia came to America to be treated by a surgeon and medical team who cared enough to make it happen because they felt it was the right thing to do. Almost a year after that first email from Asmir...it really has happened.
Please say a little extra prayer of "thanks" to our loving God today. He saw to it that this would happen for Anes.
In FAITH,
Holly
Wednesday, July 15, 2009
Recovery Off to a GREAT Start
I went to the hospital to see Anes late this morning. WOW! He is doing exceptionally well.
While I was there, he opened his left eye (his right is swollen shut) and moved all his extremities. He was already extubated and breathing on his own with only a nasal canula. He made several small little sounds and vocalizations. I was just blown away at the sight and sound of him. He is voiding great, but as usual, still waiting for the BM to show up. He had been given clearance to start feeding by mouth again late this afternoon. Oh, and the sweetest thing...he made his "kiss smack" back to Aldina when she made it and asked him to give her kisses. PRECIOUS and IMPRESSIVE. Less than 24 hours after surgery!
Dr. Patel stopped by and said that so far everything looks good. They had gone through the VEEG up to 10:30 pm last night and there had been no sign of a seizure getting through to the other side or body. He was very encouraged by everything that he was seeing Anes do...which gave more weight to our own encouragement. By the time I left to go to work, he was resting comfortably in Aldina's arms...for the first time since she and Adis had turned him over to the team for surgery. It was a moving sight to see him in her arms again. I know that moment...what it feels like...and what calm and relief it brings. Aldina told me could hold him like that all day. And I just bet she did.
Now, some of you may have noticed that I have not posted any pictures in the last couple of days. I did not stop taking them and I did not forget, but there is a reason that this blog is devoid of pictures right now. Anes' story caught the interest of a national media source and they have been in town covering his story. As a part of this interest and the intent to air this story on TV, the family and involved parties had to agree to a few things - one of which was not to post any pictures and not to talk to other media until the story this media source has produced airs. So, you will have to take our word for it that he is doing well and he LOOKS great.
If it all seems crazy that any of us agreed to this, let me assure you that it is all because we believe in the story that will be told...in its ability to teach other's about this condition, this surgery, the power of compassion, and the good that comes from helping another. We hope you will agree that it is all worthwhile in the end. All we can say for now is keep your ears perked for the story at a time in the not too distant future.
And, as always, keep those prayers up! They have made a great impact.
In Peace,
Holly
While I was there, he opened his left eye (his right is swollen shut) and moved all his extremities. He was already extubated and breathing on his own with only a nasal canula. He made several small little sounds and vocalizations. I was just blown away at the sight and sound of him. He is voiding great, but as usual, still waiting for the BM to show up. He had been given clearance to start feeding by mouth again late this afternoon. Oh, and the sweetest thing...he made his "kiss smack" back to Aldina when she made it and asked him to give her kisses. PRECIOUS and IMPRESSIVE. Less than 24 hours after surgery!
Dr. Patel stopped by and said that so far everything looks good. They had gone through the VEEG up to 10:30 pm last night and there had been no sign of a seizure getting through to the other side or body. He was very encouraged by everything that he was seeing Anes do...which gave more weight to our own encouragement. By the time I left to go to work, he was resting comfortably in Aldina's arms...for the first time since she and Adis had turned him over to the team for surgery. It was a moving sight to see him in her arms again. I know that moment...what it feels like...and what calm and relief it brings. Aldina told me could hold him like that all day. And I just bet she did.
Now, some of you may have noticed that I have not posted any pictures in the last couple of days. I did not stop taking them and I did not forget, but there is a reason that this blog is devoid of pictures right now. Anes' story caught the interest of a national media source and they have been in town covering his story. As a part of this interest and the intent to air this story on TV, the family and involved parties had to agree to a few things - one of which was not to post any pictures and not to talk to other media until the story this media source has produced airs. So, you will have to take our word for it that he is doing well and he LOOKS great.
If it all seems crazy that any of us agreed to this, let me assure you that it is all because we believe in the story that will be told...in its ability to teach other's about this condition, this surgery, the power of compassion, and the good that comes from helping another. We hope you will agree that it is all worthwhile in the end. All we can say for now is keep your ears perked for the story at a time in the not too distant future.
And, as always, keep those prayers up! They have made a great impact.
In Peace,
Holly
Tuesday, July 14, 2009
Off to PICU
As I noted in the earlier post, Anes' surgery is completed. He is now in the PICU resting comfortably. Adis and Aldina were able to see him and talk with Dr. Cohen and Dr. Patel. By all accounts, everything went very well. He is still hooked to EEG to monitor for any unwanted activity, but so far things are looking great!
After work, I visited with Adis and Aldina for about an hour at the RMH. They were so relieved to have this part over and very happy with how things have gone. We hugged and celebrated today and what this means for Anes and their family. I can not tell you how wonderful this child and his family are...I am so blessed to know them! I have grown to love them all so very much.
The staff at Methodist, Dr. Cohen and Dr. Patel have been nothing short of amazing. I wish more doctors could be of this caliber, could be this generous, humble, and compassionate. They have made an impression on all of us. It is not everyday that you meet these kind of people, much less physicians with their knowledge and skill level. I know that I am forever grateful to them for helping Anes...and for doing so in such a humble manner.
Tomorrow morning I will go to see Anes with my own eyes for the first time since surgery was completed. I can not wait to see him! I have no words for how I feel right now...
Please keep Anes in your prayers in the days to come, as recovery progresses and he begins rehabilitation. This part of the war is done, but there are other battles still to be fought for Anes.
In Joy,
Holly
After work, I visited with Adis and Aldina for about an hour at the RMH. They were so relieved to have this part over and very happy with how things have gone. We hugged and celebrated today and what this means for Anes and their family. I can not tell you how wonderful this child and his family are...I am so blessed to know them! I have grown to love them all so very much.
The staff at Methodist, Dr. Cohen and Dr. Patel have been nothing short of amazing. I wish more doctors could be of this caliber, could be this generous, humble, and compassionate. They have made an impression on all of us. It is not everyday that you meet these kind of people, much less physicians with their knowledge and skill level. I know that I am forever grateful to them for helping Anes...and for doing so in such a humble manner.
Tomorrow morning I will go to see Anes with my own eyes for the first time since surgery was completed. I can not wait to see him! I have no words for how I feel right now...
Please keep Anes in your prayers in the days to come, as recovery progresses and he begins rehabilitation. This part of the war is done, but there are other battles still to be fought for Anes.
In Joy,
Holly
Sugery Complete!
I just called to check in on surgery, as I had to leave to go to work :(
Great news....Anes is out!
Dr. Cohen came to talk to Adis and Aldina and let them know that surgery was complete. Anes did great! He took them to the recovery area waiting room and they are just waiting to see him for the first time since 8 am this morning. They should be able to do so in just a few minutes! Aldina was so happy and is ready to see him.
WOW! What a sense of relief right now.
Please keep the prayer going, focusing on his recovery in the days to come and that those "yucky" things are gone for good!
I will update as I know more!
Love,
Holly
Great news....Anes is out!
Dr. Cohen came to talk to Adis and Aldina and let them know that surgery was complete. Anes did great! He took them to the recovery area waiting room and they are just waiting to see him for the first time since 8 am this morning. They should be able to do so in just a few minutes! Aldina was so happy and is ready to see him.
WOW! What a sense of relief right now.
Please keep the prayer going, focusing on his recovery in the days to come and that those "yucky" things are gone for good!
I will update as I know more!
Love,
Holly
Report from the OR
Dr. Patel, the neurologist treating Anes, came out of the OR with a great report at about 1:30 pm. He said that Anes was doing great...that he is a strong little guy. He indicated that surgery was going very well, no problems and no concerns. He said that Dr. Cohen is actually running a bit ahead of his anticpated schedule. Knowing Dr. Patel, this is all great news! He is a man that is always a real straight-shooter. So, if there were any concerns at all he absolutely would have told Adis and Aldina. The fact that he says things are going great means that we all have a lot to take great comfort in right now! Praise God! Don't stop the prayers!
In HOPE,
Holly
In HOPE,
Holly
3rd Surgery Update
Just got a third update that everything continues to go well! We are so very happy. Praying for Anes' new beginning.
2nd Surgery Update
Just received word that things continue to go well. Anes is doing great.
Prayers continue...
Prayers continue...
First Surgery Update
Adis and Aldina just received their first surgery update from the OR, stating that everything is going well. Anes is doing great.
Please keep the prayers going...
Holly
Please keep the prayers going...
Holly
A New Day
Today is the day...a new start for Anes.
Anes went into surgery this morning at 8:00 am. Aldina was able to go back to the OR with him and see who would be taking care of her beautiful child today. It was a good thing. Dr. Cohen knew that this would make Aldina feel better...and it did.
Please, as you have a moment today, pray for Anes. Pray that this surgery is everthing that Adis and Aldina have hoped and prayed that it will be. Pray that the doctors and the medical team have the wisdom they need to not only keep him safe, but to make this surgery a huge success. Pray that the days to come will provide a quick recovery for Anes and that he is able to show the world just how strong and smart he is. Just pray...we would be so grateful.
We will update as we can as we learn more about how surgery is progressing...so stay tuned.
With much love and thanks,
Holly and Aldina
Please, as you have a moment today, pray for Anes. Pray that this surgery is everthing that Adis and Aldina have hoped and prayed that it will be. Pray that the doctors and the medical team have the wisdom they need to not only keep him safe, but to make this surgery a huge success. Pray that the days to come will provide a quick recovery for Anes and that he is able to show the world just how strong and smart he is. Just pray...we would be so grateful.
We will update as we can as we learn more about how surgery is progressing...so stay tuned.
With much love and thanks,
Holly and Aldina
Subscribe to:
Posts (Atom)