Thursday, November 26, 2009
Nurse Harriett: A nurse to be Thankful for...
GOD BLESS NURSE HARRIETT!!! She has given me one more BIG thing to be thankful for. I went back to check on Atticus after shift change today because there had been a lot of procedures this morning, and I think I spent more time in the waiting room than the PCICU. AND SHE LET ME HOLD ATTICUS!!!! YEAH!!! Hard to believe, but it's only the second time in his lifetime that I've been able to hold him. The other time was just before his surgery when he was just 1 week old. I held him for 2 hours!!! I just rocked him and worked on getting all the glue from the EEG out of his hair. It was wonderful! I can't wait for him to be off the ventilator so I can hold him all the time!!! HAPPY THANKSGIVING EVERYONE!!!!!! I FEEL SO BLESSED!!! Keep prayin' for the little man and the rest of the fam!
Monday, November 23, 2009
Several steps backwards......
Wow, so much has happened since the last post. I will try my best to update everyone on everything that has happened in the last few weeks. About 2 weeks ago, Atticus had to have exploratory surgery on his intestines because the doctors noticed that he had "free air" on his abdomen in one of the ultrasounds. This is generally an indicator that there is a hole in the intestines somewhere. Thankfully, the doctors didn't find any holes, but it did leave Atticus with a new scar from the incision. They followed up last Monday with an Upper GI with Small Bowel Follow-thru, which is where he "drinks" the barium and the doctors take x-rays of his abdomen to follow it through his intestines, to make sure that they didn't miss anything in the exploratory surgery. Thankfully again, this procedure revealed no holes in the intestines, but they did say that his digestive system was running kinda slow. Understandable considering all the different meds he's had, and the fact that he's never really eaten.
All seemed to be heading towards full recovery when things took a turn for the worse. The general pediatric surgeons came to look at his leg and to "debreed" it, which basically means they pull the scabs off the leg to make sure no infections are building up behind it. As they began the procedure, the nurse began to fuss at them because she hadn't given him anything for pain yet. The doctors replied that it was dead skin anyway, so he shouldn't feel anything. I was present and could see his ventilator rate jump to double what it had been, and he hadn't been breathing over the ventilator all day. Needless to say, they stopped and the nurse proceeded to give Atticus morphine. However, immediately after they resumed, Atticus began to have seizures again. The seizures were almost constant. As soon as one would stop, the next would begin, to the point that without the EEG machine, you almost couldn't tell one from the next. This has been particularly hard to watch, and lowered my spirits to almost a breaking point. I never doubted that God was in control; just that He was going to spare my son. But God often leads us to our absolute breaking point so that when He works a miracle, we will know that it was Him.
After many days of prayer, God turned Atticus around when the doctors could do nothing for him. He has now been seizure free since 9PM Thursday night. My words cannot express the depth of thankfulness and gratitude I feel at this point. God has heard the crying-out of my soul and performed a miracle for my son. I cannot truly express what a relief it has been. Atticus even opened his eyes and looked at me when I arrived at the hospital yesterday. Atticus is continuing to improve on other fronts as well. His leg has completely returned to a normal color, and has only the spots where the scabs were to continue healing up. The sores near his groin from the IV have completely healed, the incisions from both surgeries continue to heal, and he is even able to get feedings of breast milk again. The only other bad news is that Atticus did loose the very tip of his right earlobe today. The same thing had happened to it as with his leg just after the Cath procedure, however, circulation never returned to it. I am still very thankful that if he had to lose something, that it was only the tip of his earlobe instead of his entire leg!!
Please continue to pray for Atticus. He still has such a long way to go before he'll be able to leave the hospital. Please also pray for Sandy and Gideon. It has been hard on them to not have me around like they're used to. I talked to Sandy on the phone the other night and she told me she was ready for me to come home. Gideon would talk to me, and then run away with the phone whenever my Mom tried to get it back from him. Please also continue to pray for Robbie and myself; that we have the strength to handle the things God has in store for us, and that we can be together again as a family soon. We know that God is in charge, even though we don't know/understand what He has planned. Thank you for the prayers, the cards, the emails, and the phone calls. You are all truly a blessing to us! Please continue to pray!
All seemed to be heading towards full recovery when things took a turn for the worse. The general pediatric surgeons came to look at his leg and to "debreed" it, which basically means they pull the scabs off the leg to make sure no infections are building up behind it. As they began the procedure, the nurse began to fuss at them because she hadn't given him anything for pain yet. The doctors replied that it was dead skin anyway, so he shouldn't feel anything. I was present and could see his ventilator rate jump to double what it had been, and he hadn't been breathing over the ventilator all day. Needless to say, they stopped and the nurse proceeded to give Atticus morphine. However, immediately after they resumed, Atticus began to have seizures again. The seizures were almost constant. As soon as one would stop, the next would begin, to the point that without the EEG machine, you almost couldn't tell one from the next. This has been particularly hard to watch, and lowered my spirits to almost a breaking point. I never doubted that God was in control; just that He was going to spare my son. But God often leads us to our absolute breaking point so that when He works a miracle, we will know that it was Him.
After many days of prayer, God turned Atticus around when the doctors could do nothing for him. He has now been seizure free since 9PM Thursday night. My words cannot express the depth of thankfulness and gratitude I feel at this point. God has heard the crying-out of my soul and performed a miracle for my son. I cannot truly express what a relief it has been. Atticus even opened his eyes and looked at me when I arrived at the hospital yesterday. Atticus is continuing to improve on other fronts as well. His leg has completely returned to a normal color, and has only the spots where the scabs were to continue healing up. The sores near his groin from the IV have completely healed, the incisions from both surgeries continue to heal, and he is even able to get feedings of breast milk again. The only other bad news is that Atticus did loose the very tip of his right earlobe today. The same thing had happened to it as with his leg just after the Cath procedure, however, circulation never returned to it. I am still very thankful that if he had to lose something, that it was only the tip of his earlobe instead of his entire leg!!
Please continue to pray for Atticus. He still has such a long way to go before he'll be able to leave the hospital. Please also pray for Sandy and Gideon. It has been hard on them to not have me around like they're used to. I talked to Sandy on the phone the other night and she told me she was ready for me to come home. Gideon would talk to me, and then run away with the phone whenever my Mom tried to get it back from him. Please also continue to pray for Robbie and myself; that we have the strength to handle the things God has in store for us, and that we can be together again as a family soon. We know that God is in charge, even though we don't know/understand what He has planned. Thank you for the prayers, the cards, the emails, and the phone calls. You are all truly a blessing to us! Please continue to pray!
Monday, November 9, 2009
Daily Update
Sorry I haven't posted earlier, but I slept in. Atticus continues to make baby steps forward every day. He got his foley removed today (the urine cath), so he's just going in a diaper now. His leg is looking MUCH better.
Still has parts that are really purple, and he still has the blisters, but the color is returning. He even opened his eyes and looked around for a few minutes today. They increased the amount of milk he's getting, and he continues to be seizure free!!! Thank you for all the words of encouragement, and please continue to pray for us all!!
Still has parts that are really purple, and he still has the blisters, but the color is returning. He even opened his eyes and looked around for a few minutes today. They increased the amount of milk he's getting, and he continues to be seizure free!!! Thank you for all the words of encouragement, and please continue to pray for us all!!
Saturday, November 7, 2009
A bad week
Well, a lot has happened to little Atticus since the last post. I'll try to give you a brief summary of everything that has been going on in the past few days. After my last post, the doctors informed me that they had found blood on Atticus' brain. It is on the back right side of his brain, and the spot is about 4 cm. They informed us that the effects of this can be from as minor as nothing, to as severe as seizures, cerebal palsy, mental and physical developmental problems, to death if the bleeding didn't stop. The next day, on Monday, Atticus began to have seizures. They were extremely frequent, although not full body convulsions. His hands or feet or head would just twitch for a few minutes, and then stop. This was very difficult to watch my son suffering in this manner. But I tried to remember that God still has a plan for Atticus, and He was still in control. His right leg also turned a dark purple, as a result of the Cath procedure, and swelled to the limit. His liver and kidneys were responding very sluggishly due to all the different meds he has been on since birth, and a combination of all the abuse his body had undergone with all these various medical procedures. This was causing a problem with swelling in his body as well, because he wasn't able to get rid of the fluid that was building up in his body. It was also causing a problem to his platelet count, as the blood parts are made in the liver.
But as in all things, the Lord is always in control. The following day, Tuesday, God turned Atticus around. The doctors were able to get his seizures under control and he is now 72+ hours without a seizure. Also, the swelling in his right leg began to go down and they were finally able to find a pulse in the leg, indicating that blood circulation was returning to the leg. The swelling has continued to go down each day, and the color is slowly returning to that leg as well. His liver and kidney functions began to improve to the point that they were even able to start giving Atticus lipids again (for nutrition) and even start him on breast milk again. His urine output increased and the swelling in his body has gone down significantly. His platelets remain low, but they have begun to be able to go 36 hrs before having to give him more, whereas before he was having to get platelets every 24 hrs. And finally, all the stats/numbers for his heart are wonderful. His oxygen saturation, blood pressure, and heart rate are all right where they want them to be.
Atticus still has a long way to go to be completely healed and able to come home. The right leg, while color is returning and swelling is going down, has developed a number of large blisters all over it, due to the skin being stretched so tight for so long. Also, he has a very bad sore on his leg, near his groin where there was an IV line that was put in during the Cath procedure. They have been able to remove this line as of yesterday, but he has a lot of healing to happen as it is very rough looking. His kidneys are doing much better, but there are some numbers that are a little high that the doctors are still monitoring vey closely. As long as he continues to pee well, they say there is no major worry. However, if his urine output decreases, they say then they will begin to worry about these numbers as it means that something could still be wrong with the kidneys. Also, he still continues to heal from the heart surgery and all the wounds that are associated from that surgery. Please continue to remember Atticus in your prayers. He has already been through so much in the one month he's been alive. God has made him a fighter though, and he continues to make progress each day. Please also continue to pray for Robbie, myself, and the kids, as it seems that I will have to be here in Charleston much longer than we had hoped. Thank you all so much for everything you've done for us thus far. Thank you for all the prayers, the cards, the emails, the posts on Facebook, and everything else you've done. We are truly blessed. I hope that God will grant Atticus a speedy recovery so that I can return home. Thank you again, and please continue to pray for us.
But as in all things, the Lord is always in control. The following day, Tuesday, God turned Atticus around. The doctors were able to get his seizures under control and he is now 72+ hours without a seizure. Also, the swelling in his right leg began to go down and they were finally able to find a pulse in the leg, indicating that blood circulation was returning to the leg. The swelling has continued to go down each day, and the color is slowly returning to that leg as well. His liver and kidney functions began to improve to the point that they were even able to start giving Atticus lipids again (for nutrition) and even start him on breast milk again. His urine output increased and the swelling in his body has gone down significantly. His platelets remain low, but they have begun to be able to go 36 hrs before having to give him more, whereas before he was having to get platelets every 24 hrs. And finally, all the stats/numbers for his heart are wonderful. His oxygen saturation, blood pressure, and heart rate are all right where they want them to be.
Atticus still has a long way to go to be completely healed and able to come home. The right leg, while color is returning and swelling is going down, has developed a number of large blisters all over it, due to the skin being stretched so tight for so long. Also, he has a very bad sore on his leg, near his groin where there was an IV line that was put in during the Cath procedure. They have been able to remove this line as of yesterday, but he has a lot of healing to happen as it is very rough looking. His kidneys are doing much better, but there are some numbers that are a little high that the doctors are still monitoring vey closely. As long as he continues to pee well, they say there is no major worry. However, if his urine output decreases, they say then they will begin to worry about these numbers as it means that something could still be wrong with the kidneys. Also, he still continues to heal from the heart surgery and all the wounds that are associated from that surgery. Please continue to remember Atticus in your prayers. He has already been through so much in the one month he's been alive. God has made him a fighter though, and he continues to make progress each day. Please also continue to pray for Robbie, myself, and the kids, as it seems that I will have to be here in Charleston much longer than we had hoped. Thank you all so much for everything you've done for us thus far. Thank you for all the prayers, the cards, the emails, the posts on Facebook, and everything else you've done. We are truly blessed. I hope that God will grant Atticus a speedy recovery so that I can return home. Thank you again, and please continue to pray for us.
Sunday, November 1, 2009
A very long post....
Ok, I know everyone's been waiting to hear an update on Atticus from yesterday. Sorry it's taken so long, but I actually just got home from the hospital, and the computer lab there isn't open on the weekends. Atticus was having a rough time with his stats dropping and then coming back up. They did another echocardiogram on him yesterday and noticed he had developed what looked like blood clots in his shunt (which carries his blood to his lungs for oxygen). If this shunt becomes blocked, it is fatal for Atticus. They decided to take him to the Cath Lab to run a procedure on him to make sure it was indeed blood clots they were seeing and take corrective action from there.
They wheeled him back to the Cath Lab at about 3PM yesterday. They found that there was a problem with his blood flow due to a narrowing in the Aortic arch where the shunt came off of it, leading to the lungs. When he had his surgery, he had a 4mm shunt put in, and it had narrowed to 2mm. They tried to do a balloon angioplast to enlarge the shunt, but it was unsuccessful. So, they had to install a stint (a mesh reinforcement) into the shunt. During the installation, the stint actually slipped off the balloon and had to be pulled out. They then lost there arterial access to his heart. After gaining access again, they managed to successfully install the stint, and this corrected the problem he was having with blood flow. He lost a lot of blood during this procedure and had to get a blood transfusion. He has also had a constant problem with low platelet count. It seems no matter how many platelets they give him, his body uses them up at a rapid pace and he continues to have low counts. This was causing problems with his ability to clot, and so several of his wounds were staying "weepy" and they had to get these healing.
He also had a problem with his belly being bloated. This was being caused because of the restricted blood flow, causing the blood to wash back on itself and emptying into his abdomen. They reinstalled a chest drainage tube and while in the Cath Lab, already drained over 300cc of fluid from his abdomen. However, this helped solve that problem and his tummy is soft once again, and it continues to drain. The other problem they had was once the procedure was finished and they were trying to set IV lines for once he returned to the PCICU. They couldn't get an arterial line in. They finally decided to have Dr Hsai do what they call a "cut down". This means that he would have to actually cut the artery in his wrist and physically install the line this way. Dr Hsai was unsuccessful in getting the line in the right arm, and eventually had to try the left arm, which he finally managed to get the line in.
Atticus is finally stable. He's back in the PCICU and his numbers are stable. His face is swollen again, he's back on a lot of the meds that he had been weaned off of, the head monitors are back on, and he's on a higher oxygen rate on his ventilator. He has stitches in his right wrist where they first attemped the cut down. His legs are also VERY swollen and purple from the lack of oxygen they received during the cath procedure, as they had put the cath lines in through his groin. His legs are looking much better and returning to normal color from when I first got to see him at 3:30AM (or 2:30 AM with the time change) this morning. By the time I left, his left leg was pretty much back to normal color and they could actually feel a pulse in this leg, but his right leg still looked pretty rough. His blood gas numbers are still very off, as things such as his lactic acid are high due to the procedure, but they are starting to return to normal.
Please pray for Atticus. He's had a very rough 24 hrs. It seems like this episode has basically caused him to lose all the ground he gained in the last 2 weeks. It's almost like he's starting all over again. I am thankful that God has blessed him with such skilled doctors and that He has allowed me another day to spend with my son. I am grateful that they did not have to reopen his chest and were able to correct his heart with the Cath procedure. I'm also grateful for such wonderful love and support I have been receiving from all of you. Please pray for me and Robbie as well. As hard as it is for me to be here and watch Atticus go through all of this, I know that it is equally hard or harder for Robbie to stay home during all of this to be with our other two children who need their father, as they are already having to do without their mother. I will continue to update everyone on his recovery. Right now however, I'm gonna go crash and finally get some sleep. Please pray that God continue to watch over us, and that He will let Atticus heal quickly.
They wheeled him back to the Cath Lab at about 3PM yesterday. They found that there was a problem with his blood flow due to a narrowing in the Aortic arch where the shunt came off of it, leading to the lungs. When he had his surgery, he had a 4mm shunt put in, and it had narrowed to 2mm. They tried to do a balloon angioplast to enlarge the shunt, but it was unsuccessful. So, they had to install a stint (a mesh reinforcement) into the shunt. During the installation, the stint actually slipped off the balloon and had to be pulled out. They then lost there arterial access to his heart. After gaining access again, they managed to successfully install the stint, and this corrected the problem he was having with blood flow. He lost a lot of blood during this procedure and had to get a blood transfusion. He has also had a constant problem with low platelet count. It seems no matter how many platelets they give him, his body uses them up at a rapid pace and he continues to have low counts. This was causing problems with his ability to clot, and so several of his wounds were staying "weepy" and they had to get these healing.
He also had a problem with his belly being bloated. This was being caused because of the restricted blood flow, causing the blood to wash back on itself and emptying into his abdomen. They reinstalled a chest drainage tube and while in the Cath Lab, already drained over 300cc of fluid from his abdomen. However, this helped solve that problem and his tummy is soft once again, and it continues to drain. The other problem they had was once the procedure was finished and they were trying to set IV lines for once he returned to the PCICU. They couldn't get an arterial line in. They finally decided to have Dr Hsai do what they call a "cut down". This means that he would have to actually cut the artery in his wrist and physically install the line this way. Dr Hsai was unsuccessful in getting the line in the right arm, and eventually had to try the left arm, which he finally managed to get the line in.
Atticus is finally stable. He's back in the PCICU and his numbers are stable. His face is swollen again, he's back on a lot of the meds that he had been weaned off of, the head monitors are back on, and he's on a higher oxygen rate on his ventilator. He has stitches in his right wrist where they first attemped the cut down. His legs are also VERY swollen and purple from the lack of oxygen they received during the cath procedure, as they had put the cath lines in through his groin. His legs are looking much better and returning to normal color from when I first got to see him at 3:30AM (or 2:30 AM with the time change) this morning. By the time I left, his left leg was pretty much back to normal color and they could actually feel a pulse in this leg, but his right leg still looked pretty rough. His blood gas numbers are still very off, as things such as his lactic acid are high due to the procedure, but they are starting to return to normal.
Please pray for Atticus. He's had a very rough 24 hrs. It seems like this episode has basically caused him to lose all the ground he gained in the last 2 weeks. It's almost like he's starting all over again. I am thankful that God has blessed him with such skilled doctors and that He has allowed me another day to spend with my son. I am grateful that they did not have to reopen his chest and were able to correct his heart with the Cath procedure. I'm also grateful for such wonderful love and support I have been receiving from all of you. Please pray for me and Robbie as well. As hard as it is for me to be here and watch Atticus go through all of this, I know that it is equally hard or harder for Robbie to stay home during all of this to be with our other two children who need their father, as they are already having to do without their mother. I will continue to update everyone on his recovery. Right now however, I'm gonna go crash and finally get some sleep. Please pray that God continue to watch over us, and that He will let Atticus heal quickly.
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