Overall it was a low-key day. The Infectious Disease doctor is confident Eli doesn't have meningitis. That diagnosis was made as he watched Eli throw a ball around the room (alternating hands) and tease his nurse. Doc said "kids with meningitis don't do that. We'll rule that out." Everyone seems to think the most likely culprit was his blood sugar. We think that was low due to a combination of some of his meds and changes are being made. Eli was taken off the two big time antibiotics that were started Saturday morning in anticipation of a hidden infection. He's been restarted on his routine course of Cefazolin (another antibiotic) that he's been taking since August 23 when he tested positive for staph aureus. We may still be on target to complete that dosing schedule later this week. We are still waiting on the results of blood cultures drawn in our local ER (takes 48 hours). As far as discharge goes, it will probably be a few more days but no one has said anything specific. Also, we haven't asked. It's a protective mechanism we developed during our multiple week stays earlier this year!
Eli was goofy on and off through the day. It's obvious he's still weak and shaky from the meds yesterday and the seizures themselves. He took two good naps today and was asleep by 9pm. That's early for him when he's in the hospital. When he was awake, he was silly and kept changing his mind regarding what movie to watch ten minutes into a movie. That's very normal for him while in the hospital! He was up moving more and talking a lot.
Bryan's parents, aunt, and sister came to visit. He went back to Washington with them so he can be with Zachary and return to work. Eli was very sad when Daddy left, but we took our first trip to the play room and that helped perk him up. He didn't play long but was mad when I made him leave. His appetite has been pretty good today, but we're continuing the nighttime feeds. One thing we didn't get accomplished today that we MUST do tomorrow is getting the boy a bath. We started to about four times today but each time something happened to prevent it. Once was a visit from a doctor, once his food tray arrived earlier than expected, and twice he fell asleep rightas we were gathering supplies. He doesn't smell good at all due to the dried sweat and getting sick twice on the helicopter. In addition, his hair has a lot of crusty tangles because of the goop used during his EEG yesterday.
Prayer Requests:
- that Eli has a good night's sleep and is even stronger on Monday
- that he poops soon. Yes, we're back to that. I think just being here gets him backed up. If he doesn't go by tomorrow, I'll ask for some meds to help him along.
- for Zachary as he starts another week of school without Mommy and Eli. Z has put up with so much and I don't think he realizes how different our lives are. That's a blessing and sad at the same time.
- for me to get some much needed rest as well so I can take good care of Eli and make the right decisions for him
- for our fellow heart friends:
Caleb (who has been hospitalized since November 1 as he waited for the perfect heart to become available. His miracle happened and he had a heart transplant last week! He is doing great so far!)
Liam (who was just recently listed on the transplant list after a long battle to get there)
Nathan (just had open heart surgery that wasn't able to get the result they wanted, but is doing well through his recovery)
Madison (who will be having her Fontan in a month).
These kids and their families are good friends of ours (even if we've only met a few times or are only internet friends!). They serve as an inspiration to us and help us get through some rocky times. I hope we can help encourage them as they do us.
Thank you for caring about us and following our story. I looked at our blog this afternoon and saw that we've had over 20,000 views. You all certainly know how to make a family feel special!
Sunday, September 29, 2013
Seized with Fear
Eli had been doing really well since his discharge from the hospital on Sept 11. He has been getting IV antibiotics through his PICC line every eight hours at home in addition to his other medicines. He had a great check up with his Infectious Disease doctor on the 23rd. There was even discussion of getting to stop the antibiotics and remove the PICC after his next checkup.
Then the morning of Sept 28th rolled around. Bryan was sleeping downstairs to take care of Eli's stuff through the night and I was upstairs sleeping in our big bed with Zachary. Yes, Zachary sleeps with one of us these days. He needs the extra comfort from us having to be apart so much. If you have an opinion on that then we ask you kindly keep it to yourself because it works for us right now.
Anyway, about 6:30am Bryan rushed into the bedroom carrying Eli. Eli looked very limp in Bryan's arms. Bryan's voice was shaking and he said something was wrong with Eli. We took him back downstairs so we could look at him in the light. Eli's head and body were soaked in sweat but his body was cold. His eyes were open and in our direction, but he was not looking at us. They were fluttering and the movements were getting jerkier. His arms were starting to jump around too. We looked at him and each other and knew we were calling an ambulance. Bryan took him to the living room to lay him on the floor with nothing around him. I grabbed the phone to call 9-1-1. I honestly stared at the keypad for a moment trying to remember what number to call. It was surreal. I talked to the operator and told him our two year old was having a seizure, that he'd never had one before, and that he has an extensive heart history. As I reread that last sentence it sounds like I was in complete control of the situation and very calm. Frankly I'm surprised I even had control of my bladder at the time. He had us make sure Eli was breathing (he was, thank God!) and confirmed our address and situation. He also wanted us to have a list of Eli's meds available to the paramedics. I told him we have a folder with a pretty accurate history & meds. He assured us help was on the way. He asked if I wanted to stay on the line but I said no but I'd call back if anything changed before they arrived. During all this, Eli's movements were continuing. His arms were jerking around and his legs were a little bit too. His eyes were jumping around as well.
While Bryan stayed with Eli, I ran upstairs to get my shoes. I also called my mom. You know that feeling you get when the phone rings at a really late or really early hour? Well I did that to my mom today. We didn't talk much "Can you come stay with Zachary? Eli's having a seizure and the ambulance is on its way." She said, "I'll be right there." And she was. The firetruck pulled up in front of the house, followed by mom who was followed by the ambulance. As they were all pulling up, Eli's jerking, jumpy movements stopped. The seizure lasted about ten minutes. He was still unresponsive but he wasn't seizing. When the EMTs got inside they asked a few questions but really didn't spend much time at the house. Eli & I rode in the ambulance to the hospital and Bryan followed in the van. At our local hospital Eli was assessed and a brief plan for testing was begun. In thirty minutes' time he had started the seizure, help arrived, transport complete, assessed by an ER nurse and doctor, vital signs taken, he was in & out cathed for a urine sample, and they were preparing to draw blood from his PICC line. Bryan and I were very impressed. We've often wondered how we'd feel about emergent care at our very small local hospital if the situation arises and today helped ease those fears. Throughout all this he was still very drowsy which is very normal after a seizure. He would occasionally whine a little during certain things (urinary catheter and rectal temp). We were getting some small responses from him, but nothing noteworthy. His vital signs were fine other than his temperature was low at 95.9.
At 7:30am he got that dazed look in his eyes. The nurse was just leaving the room to get something and we called her back. She took one look at him and called for the doc who appeared within seconds. The same thing happened as far as his eyes and his arm movements, but this time was much shorter. It was almost exactly two minutes (yes, I was watching the clock). Post seizure vital signs were good. As he was seizing, the doctor ordered Ativan. Even though he stopped on his own before the med was given, they gave it to him anyway because it was a repeat seizure. Right after that, Bryan's mom arrived. We'd called her after we got to the ER and knew a little more. She thankfully showed up with orange juice. I told her on the phone I needed something and she brought one for each of us.
While in the ER he had a chest xray and CT of the head. Those both came back normal except for a small pleural effusion we already knew about. Early in the visit we flat out asked the doctor what his plan was for Eli. Was he going to transfer him? We couldn't imagine Eli would be sent home and we didn't think he'd be admitted to our small hospital (not being negative about our hospital, just honest). The doctor (who was very nice but I cannot pronounce or even attempt to spell his name) said he'd transfer him to Peyton Manning Children's Hospital (PMCH) after Eli was definitely stable and some initial testing complete. Because of that, I knew I had to pack!
After the CT was done, I was making a list of things I wanted to pack because I didn't think I'd remember when I got home. While I was working on that, the doctor came in and said some of the blood work was back. Eli's glucose (blood sugar) level was 18. Eighteen? How on earth was he as stable as he was with a level of 18?!? The kid can compensate and mask symptoms like no other. They pushed a dose of dextrose and were starting an IV anti seizure medicine.
I drove home to pack, get a prayer request onto Eli's Facebook page, and hopefully see Zachary. Okay, to be honest, I didn't have a lot to pack for myself because I hadn't fully unpacked from our last admission. I just moved that stuff to a larger suitcase and threw in a few more items. Most important to pack were Eli's things. He doesn't need too much in the way of clothes when he's here, but it's nice to have his shoes so he can walk the halls and go play. Also, we'd left the house in such a hurry we didn't have Pablo. That's his buddy (stuffed penguin) from The Backyardigans. He's been with Eli daily since just before the Fontan in April. He's been to the OR with him, through chest tubes, physical therapy, doctor appointments, etc. We had to bring Pablo. The staff at PMCH knows Pablo as well as they know Eli. I also had to pack pacifiers (he will only use ours) and bottles. He still drinks his milk from a bottle and he refuses to use hospital bottles. Then I packed movies. That's his normal pastime when he's hospitalized. What did I grab? Honestly didn't pay too much attention, I just grabbed about 20 & put them in a box!
While I was at home, I got to talk to Zachary and explain a little bit. Bryan texted saying that they were going to fly Eli to PMCH just because of the distance. I told Zachary that and he said, "Can I fly with him?" Mom, Zachary, & I drove back to the hospital where Bryan and his parents were with Eli. We got to spend some time together. Zachary was content for about 6 minutes before wanting to check out the vending machines. He actually wanted to see the waiting room. I think he knew there was a tv in there which Eli's room did not have. A few minutes later he was eating Cheetos and drinking Coke while in the waiting room. It doesn't take much to make my kids happy.
By this time, Eli's blood sugar was much higher (252!) and his temperature had risen to 97.3. He looked better too. He was getting a little more responsive, but would easily fall back asleep after we disturbed him. The helicopter arrived and took off again to refuel while the two transport nurses assessed him and prepared him for the flight. We tucked Pablo in with him and waited for the chopper to arrive. Zachary was waiting outside with Bryan's parents and my mom. I went to get him so he could say bye to Eli. He reluctantly came in but he really wanted to see the chopper. After I assured him he would see it, he came in to Eli and walked out with us. We kissed Eli goodbye and let the two flight nurses wheel him to the helicopter. We knew he was in good hands and actually in pretty good condition, but that doesn't make it any easier to watch your baby fly off without you.
They took off about 11:20am. After we couldn't see the helicopter anymore, Bryan and I rushed home. In my infinite packing wisdom I hadn't packed anything for him. I'm a pretty lucky he keeps me around!
Zachary stayed at the house with grandparents and Bryan and I left for Indy. Eli would be there in 45 minutes while we had close to three hours to be on the road. It was almost noon and we hadn't eaten yet so we made ourselves grab something from a drive through. Neither one of us thought anything sounded good but we must've been hungrier than we thought because we finished all of it.
One of the flight nurses called when we were about two hours from the hospital. He said Eli did well on the flight but he did throw up a couple times. They gave him some medicine to help ease that and then he was fine the rest of the trip. He confirmed with us what room Eli was in and who his nurse was. One of Eli's aunts got to the hospital and was allowed to be with him before Bryan and I arrived. She called and told me what nurses were in the room and who his doctor was. We recognized every name she said. We've been here waaaayyy too much lately! It was a big comfort to know who was caring for him while we weren't there. His nurse is one we've had many times. He sometimes knows her as Tickle Monster, but since he was so sick today she was just going by Stacey. Aunt Ashley also took it upon herself to "fix" Eli's hair since it was so messed up from being so sweaty during the seizures. Every two year old needs a mohawk, right? Ashley said he really wasn't awake during any of this, but he would open his eyes and scowl a little at times.
When Bryan and I arrived he was about to have an echocardiogram (ultrasound of the heart). Later he had an EEG (elecroencephalogram which measures the electrical activity of the brain). Eli woke some during the echo and was asking for his bottle. The doctor wanted to keep him on clear liquids because at the time she was unsure if he would have a lumbar puncture and would need sedation. As he woke more throughout the afternoon she determined that wasn't necessary for now. The neurologist came in to examine him and talk with us. Dr. Mott thought the EEG looked pretty good for the most part. He felt that anything abnormal he saw was due to the seizures themselves.
Eli has been more alert as the night progressed. He ate two cups of jello, a small bag of SunChips, some pancakes, bacon, oatmeal, and chocolate pie. He sat on the couch with Bryan for a long time and played with everything. The combination of meds he had this morning was pretty powerful. Combine those with the exhaustion from having two seizures and you've got a pretty doped up toddler on your hands. People were a little surprised he was so awake and alert. As the drugs were wearing off it was like he was drunk. You could see the eyes weren't totally there but it was different than the look he had with the seizures. This we could mock for our sanity. It's been a pretty fun evening!
Why did he have the seizures? A few possibilities.
- he could have a viral infection or meningitis. Those aren't likely since he's not had any fevers, but again this child compensates like nothing I've seen before.
- he could have had a stroke. Because of the multiple heart surgeries and an abnormal heart rhythm, it's not unrealistic to think he had a blood clot that could have traveled to the brain. After the echo, CT, and EEG, the docs don't think this is very likely. Another factor in favor of it NOT being a stroke is that during the seizures he was twitching on both sides. If it were a stroke it would likely have been more on one side. Also, his reflexes and movements are pretty equal on both sides tonight...as they should be.
- it could be related to the low blood sugar. This is actually the most likely culprit. The question is why did his blood sugar drop so low? We aren't sure, but have a couple theories. If there is an infection present, that could lower blood sugar. Another has to do with his feedings. Eli didn't get a tube feeding Friday night. He ate well Friday and had had tube feeding for several nights. We often take a night or two off each week, just so one of us isn't getting up as many times in the night. We also found out that one of his heart meds can have a side effect of lowering blood sugar. Eli's been on this since April and we've been doing the tube feeding 4-5 nights a week since the spring as well. What changed Saturday morning? We don't know. We may not ever know. There's a possibility this could be a random, one time thing.
Our plan now is to monitor his blood sugar, his appetite, and his overall alertness/health/personality. We are still waiting on to see if the blood cultures grow anything. The cardiologist stopped the heart medicine he was on. They may try a new one, but would rather see him be able to stay off it altogether. As of now, we'll follow up with neurology on an outpatient basis. Eli's still on the antiseizure medication (Keppra) and will be at home as well. Neurology would like to get a brain MRI but that will be done in a month or so. He'll have to go to a special facility for it because of having a pacemaker. He'll also have a repeat EEG done at that time to compare to today's.
Right now, we don't have any guesses how long Eli will be in the hospital. Today was too soon to estimate, but maybe tomorrow we'll be able to make more definitive plans. Thursday Eli was supposed to have a marathon of appointments in Indy. He was going to see Infectious Disease, get a chest xray, see two or three providers at the cardiology group and then finish the day with the thoracic surgeon. We're hoping all of them will see him while he's inpatient so we can get that out of the way.
Thank you for the quick response to our prayer request on FB this morning. Seeing how many people are praying and the way the news spreads is a good feeling. Thanks for sharing and helping us. We even had a couple people come to the helipad to see Eli take off. We are very fortunate and want you all to know how much we truly appreciate each of you. Thanks for taking the time to read!
Then the morning of Sept 28th rolled around. Bryan was sleeping downstairs to take care of Eli's stuff through the night and I was upstairs sleeping in our big bed with Zachary. Yes, Zachary sleeps with one of us these days. He needs the extra comfort from us having to be apart so much. If you have an opinion on that then we ask you kindly keep it to yourself because it works for us right now.
Anyway, about 6:30am Bryan rushed into the bedroom carrying Eli. Eli looked very limp in Bryan's arms. Bryan's voice was shaking and he said something was wrong with Eli. We took him back downstairs so we could look at him in the light. Eli's head and body were soaked in sweat but his body was cold. His eyes were open and in our direction, but he was not looking at us. They were fluttering and the movements were getting jerkier. His arms were starting to jump around too. We looked at him and each other and knew we were calling an ambulance. Bryan took him to the living room to lay him on the floor with nothing around him. I grabbed the phone to call 9-1-1. I honestly stared at the keypad for a moment trying to remember what number to call. It was surreal. I talked to the operator and told him our two year old was having a seizure, that he'd never had one before, and that he has an extensive heart history. As I reread that last sentence it sounds like I was in complete control of the situation and very calm. Frankly I'm surprised I even had control of my bladder at the time. He had us make sure Eli was breathing (he was, thank God!) and confirmed our address and situation. He also wanted us to have a list of Eli's meds available to the paramedics. I told him we have a folder with a pretty accurate history & meds. He assured us help was on the way. He asked if I wanted to stay on the line but I said no but I'd call back if anything changed before they arrived. During all this, Eli's movements were continuing. His arms were jerking around and his legs were a little bit too. His eyes were jumping around as well.
While Bryan stayed with Eli, I ran upstairs to get my shoes. I also called my mom. You know that feeling you get when the phone rings at a really late or really early hour? Well I did that to my mom today. We didn't talk much "Can you come stay with Zachary? Eli's having a seizure and the ambulance is on its way." She said, "I'll be right there." And she was. The firetruck pulled up in front of the house, followed by mom who was followed by the ambulance. As they were all pulling up, Eli's jerking, jumpy movements stopped. The seizure lasted about ten minutes. He was still unresponsive but he wasn't seizing. When the EMTs got inside they asked a few questions but really didn't spend much time at the house. Eli & I rode in the ambulance to the hospital and Bryan followed in the van. At our local hospital Eli was assessed and a brief plan for testing was begun. In thirty minutes' time he had started the seizure, help arrived, transport complete, assessed by an ER nurse and doctor, vital signs taken, he was in & out cathed for a urine sample, and they were preparing to draw blood from his PICC line. Bryan and I were very impressed. We've often wondered how we'd feel about emergent care at our very small local hospital if the situation arises and today helped ease those fears. Throughout all this he was still very drowsy which is very normal after a seizure. He would occasionally whine a little during certain things (urinary catheter and rectal temp). We were getting some small responses from him, but nothing noteworthy. His vital signs were fine other than his temperature was low at 95.9.
At 7:30am he got that dazed look in his eyes. The nurse was just leaving the room to get something and we called her back. She took one look at him and called for the doc who appeared within seconds. The same thing happened as far as his eyes and his arm movements, but this time was much shorter. It was almost exactly two minutes (yes, I was watching the clock). Post seizure vital signs were good. As he was seizing, the doctor ordered Ativan. Even though he stopped on his own before the med was given, they gave it to him anyway because it was a repeat seizure. Right after that, Bryan's mom arrived. We'd called her after we got to the ER and knew a little more. She thankfully showed up with orange juice. I told her on the phone I needed something and she brought one for each of us.
While in the ER he had a chest xray and CT of the head. Those both came back normal except for a small pleural effusion we already knew about. Early in the visit we flat out asked the doctor what his plan was for Eli. Was he going to transfer him? We couldn't imagine Eli would be sent home and we didn't think he'd be admitted to our small hospital (not being negative about our hospital, just honest). The doctor (who was very nice but I cannot pronounce or even attempt to spell his name) said he'd transfer him to Peyton Manning Children's Hospital (PMCH) after Eli was definitely stable and some initial testing complete. Because of that, I knew I had to pack!
After the CT was done, I was making a list of things I wanted to pack because I didn't think I'd remember when I got home. While I was working on that, the doctor came in and said some of the blood work was back. Eli's glucose (blood sugar) level was 18. Eighteen? How on earth was he as stable as he was with a level of 18?!? The kid can compensate and mask symptoms like no other. They pushed a dose of dextrose and were starting an IV anti seizure medicine.
I drove home to pack, get a prayer request onto Eli's Facebook page, and hopefully see Zachary. Okay, to be honest, I didn't have a lot to pack for myself because I hadn't fully unpacked from our last admission. I just moved that stuff to a larger suitcase and threw in a few more items. Most important to pack were Eli's things. He doesn't need too much in the way of clothes when he's here, but it's nice to have his shoes so he can walk the halls and go play. Also, we'd left the house in such a hurry we didn't have Pablo. That's his buddy (stuffed penguin) from The Backyardigans. He's been with Eli daily since just before the Fontan in April. He's been to the OR with him, through chest tubes, physical therapy, doctor appointments, etc. We had to bring Pablo. The staff at PMCH knows Pablo as well as they know Eli. I also had to pack pacifiers (he will only use ours) and bottles. He still drinks his milk from a bottle and he refuses to use hospital bottles. Then I packed movies. That's his normal pastime when he's hospitalized. What did I grab? Honestly didn't pay too much attention, I just grabbed about 20 & put them in a box!
While I was at home, I got to talk to Zachary and explain a little bit. Bryan texted saying that they were going to fly Eli to PMCH just because of the distance. I told Zachary that and he said, "Can I fly with him?" Mom, Zachary, & I drove back to the hospital where Bryan and his parents were with Eli. We got to spend some time together. Zachary was content for about 6 minutes before wanting to check out the vending machines. He actually wanted to see the waiting room. I think he knew there was a tv in there which Eli's room did not have. A few minutes later he was eating Cheetos and drinking Coke while in the waiting room. It doesn't take much to make my kids happy.
By this time, Eli's blood sugar was much higher (252!) and his temperature had risen to 97.3. He looked better too. He was getting a little more responsive, but would easily fall back asleep after we disturbed him. The helicopter arrived and took off again to refuel while the two transport nurses assessed him and prepared him for the flight. We tucked Pablo in with him and waited for the chopper to arrive. Zachary was waiting outside with Bryan's parents and my mom. I went to get him so he could say bye to Eli. He reluctantly came in but he really wanted to see the chopper. After I assured him he would see it, he came in to Eli and walked out with us. We kissed Eli goodbye and let the two flight nurses wheel him to the helicopter. We knew he was in good hands and actually in pretty good condition, but that doesn't make it any easier to watch your baby fly off without you.
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| Being wheeled to the helipad by the flight nurses |
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| Being loaded onto the back of the medical helicopter |
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| Words don't capture the feelings in this photo |
They took off about 11:20am. After we couldn't see the helicopter anymore, Bryan and I rushed home. In my infinite packing wisdom I hadn't packed anything for him. I'm a pretty lucky he keeps me around!
Zachary stayed at the house with grandparents and Bryan and I left for Indy. Eli would be there in 45 minutes while we had close to three hours to be on the road. It was almost noon and we hadn't eaten yet so we made ourselves grab something from a drive through. Neither one of us thought anything sounded good but we must've been hungrier than we thought because we finished all of it.
One of the flight nurses called when we were about two hours from the hospital. He said Eli did well on the flight but he did throw up a couple times. They gave him some medicine to help ease that and then he was fine the rest of the trip. He confirmed with us what room Eli was in and who his nurse was. One of Eli's aunts got to the hospital and was allowed to be with him before Bryan and I arrived. She called and told me what nurses were in the room and who his doctor was. We recognized every name she said. We've been here waaaayyy too much lately! It was a big comfort to know who was caring for him while we weren't there. His nurse is one we've had many times. He sometimes knows her as Tickle Monster, but since he was so sick today she was just going by Stacey. Aunt Ashley also took it upon herself to "fix" Eli's hair since it was so messed up from being so sweaty during the seizures. Every two year old needs a mohawk, right? Ashley said he really wasn't awake during any of this, but he would open his eyes and scowl a little at times.
When Bryan and I arrived he was about to have an echocardiogram (ultrasound of the heart). Later he had an EEG (elecroencephalogram which measures the electrical activity of the brain). Eli woke some during the echo and was asking for his bottle. The doctor wanted to keep him on clear liquids because at the time she was unsure if he would have a lumbar puncture and would need sedation. As he woke more throughout the afternoon she determined that wasn't necessary for now. The neurologist came in to examine him and talk with us. Dr. Mott thought the EEG looked pretty good for the most part. He felt that anything abnormal he saw was due to the seizures themselves.
Eli has been more alert as the night progressed. He ate two cups of jello, a small bag of SunChips, some pancakes, bacon, oatmeal, and chocolate pie. He sat on the couch with Bryan for a long time and played with everything. The combination of meds he had this morning was pretty powerful. Combine those with the exhaustion from having two seizures and you've got a pretty doped up toddler on your hands. People were a little surprised he was so awake and alert. As the drugs were wearing off it was like he was drunk. You could see the eyes weren't totally there but it was different than the look he had with the seizures. This we could mock for our sanity. It's been a pretty fun evening!
Why did he have the seizures? A few possibilities.
- he could have a viral infection or meningitis. Those aren't likely since he's not had any fevers, but again this child compensates like nothing I've seen before.
- he could have had a stroke. Because of the multiple heart surgeries and an abnormal heart rhythm, it's not unrealistic to think he had a blood clot that could have traveled to the brain. After the echo, CT, and EEG, the docs don't think this is very likely. Another factor in favor of it NOT being a stroke is that during the seizures he was twitching on both sides. If it were a stroke it would likely have been more on one side. Also, his reflexes and movements are pretty equal on both sides tonight...as they should be.
- it could be related to the low blood sugar. This is actually the most likely culprit. The question is why did his blood sugar drop so low? We aren't sure, but have a couple theories. If there is an infection present, that could lower blood sugar. Another has to do with his feedings. Eli didn't get a tube feeding Friday night. He ate well Friday and had had tube feeding for several nights. We often take a night or two off each week, just so one of us isn't getting up as many times in the night. We also found out that one of his heart meds can have a side effect of lowering blood sugar. Eli's been on this since April and we've been doing the tube feeding 4-5 nights a week since the spring as well. What changed Saturday morning? We don't know. We may not ever know. There's a possibility this could be a random, one time thing.
Our plan now is to monitor his blood sugar, his appetite, and his overall alertness/health/personality. We are still waiting on to see if the blood cultures grow anything. The cardiologist stopped the heart medicine he was on. They may try a new one, but would rather see him be able to stay off it altogether. As of now, we'll follow up with neurology on an outpatient basis. Eli's still on the antiseizure medication (Keppra) and will be at home as well. Neurology would like to get a brain MRI but that will be done in a month or so. He'll have to go to a special facility for it because of having a pacemaker. He'll also have a repeat EEG done at that time to compare to today's.
Right now, we don't have any guesses how long Eli will be in the hospital. Today was too soon to estimate, but maybe tomorrow we'll be able to make more definitive plans. Thursday Eli was supposed to have a marathon of appointments in Indy. He was going to see Infectious Disease, get a chest xray, see two or three providers at the cardiology group and then finish the day with the thoracic surgeon. We're hoping all of them will see him while he's inpatient so we can get that out of the way.
Thank you for the quick response to our prayer request on FB this morning. Seeing how many people are praying and the way the news spreads is a good feeling. Thanks for sharing and helping us. We even had a couple people come to the helipad to see Eli take off. We are very fortunate and want you all to know how much we truly appreciate each of you. Thanks for taking the time to read!
Sunday, September 8, 2013
Not Much Going On...Days 13 - 17 (Sept 4 - 8)
Usually I try to break things down by writing a few paragraphs for each day. Not happening that way tonight. Partly because I'm tired and partly because I took too long to do this post so I don't remember exactly what happened when.
Our last post led you to believe that a tagged white cell study was going to be done. That plan was changed because Eli's hemoglobin and hematocrit were too low. His hemoglobin was 8.2 and the hematocrit was in the 20s. To do the tagged white cell study, about 25cc of blood (just under an ounce) has to be removed from Eli, sent to the nuclear medicine department for them to mix in their magic potion that will bind to the white cells to make them glow on the scan, and then the mixture reinjected into Eli. Even though the blood is technically returned to Eli, it doesn't count anymore toward his total blood content. Taking that much blood out would further lower his already low H&H.
Instead of the tagged white cell study, it was decided to do a bone scan. He had that done on Thursday and he did very well. Getting it done involves being strapped to a table and a series of two minute scans taken of different parts of his body. He did much better than I expected and we were so glad we didn't have to sedate him for this. Thursday night he also received a unit of blood to help his H&H come up. It did but not quite as high as they expected. In fact, it's debatable whether or not it's high enough to do the tagged white cell study this week. It's high enough he shouldn't need a transfusion, but may not be high enough for that test. Because of the two procedures he's had in the past few weeks coupled with the bloody drainage from his chest tubes, no one was surprised that his levels were as low as they were.
The bone scan looked normal, which was good news. The down side is that we still don't know where the staph was hiding out. For now we're in another holding pattern. Eli spent Friday, Saturday and Sunday playing, eating, drawing, being silly, arguing about baths, and making me laugh. He's feeling so much better and it shows. His vital signs are good and stable. When he's awake he doesn't need oxygen and he sats in the low 90s. While he's sleeping, he still gets the 0.5L and he usually sats >95%. He's got more energy and it's harder to keep him occupied and happy.
The Care Conference for Eli hasn't happened yet. Originally they wanted the test results so they could discuss those at the meeting and form a more accurate plan. The bone scan results are helpful. The problem is that there's no clear cut formula to deal with this. Dr. Abraham (heart surgeon) discussed with us the possibility of going home soon and doing antibiotic therapy through his PICC line for several weeks. How long is several? Don't know. After that's complete then we could revisit the idea of the tagged white cell study to see if any "bad guys" show up around the pacemaker. Infectious Disease has a different perspective and we're expecting they would want to get the pacemaker out sooner rather than let Eli go home and eventually get sick again with another emergence of staph aureus.
Our concern with the tagged white cell study is that its purpose is to see where the white cells are gathering. White cells are our body's way of fighting infection. They're also a sign of healing. Remember, Eli just had surgery a couple weeks ago to remove a lot of fluid from his right lung area. Then he had two large chest tubes in place to drain lots of fluid for a week. One week ago, he had another procedure to remove those chest tubes. His pacemaker is right below the area he just had surgery on and the wires run very close to that area (under and beside it). Couldn't the natural healing process from the surgery give a false positive to a tagged white cell study? We've also been told that the tagged white cell study isn't a specific enough test to definitively show a small accumulation of staph aureus cells on something as small as a pacer wire. We're just not sure what the correct next step is or if the proper step is the tagged white cell study, is now the right time? Maybe to do it in a few weeks after more antibiotics is the right choice? Something else we think needs done (docs have mentioned this, we just don't know when it will happen) is another chest xray. He hasn't had one since the chest tubes were removed. Like I said, his sats are good and he doesn't show any signs of a reaccumulation of fluid, but he's fooled us before. Eli's pacemaker hasn't been interrogated yet either, so we don't truly know how dependent on it he really is. We need those docs to get together and discuss some things. We also need some questions answered.
What's nice about this confusing situation is that we know each of these doctors has Eli's best interests in mind. It's obvious they like the kid and want what's best for him (and us), but each are coming from different specialties which means different experiences and different perspectives.
I am torn. I want to be home. I want to be home soon. Especially because Friday is Zachary birthday. When I hugged him goodbye tonight it broke my heart to think it is possibly the last time I could be hugging my five year old baby. If we don't go home this week, the next time I'll see him is Friday night and he'll already be six. We're making plans to have a party for him in the conference room here at the hospital. We can decorate it and have a cake and he can open his gifts. It would be great to do those things at home, but we are not counting on it. I cannot emotionally afford to count on going home yet. Even more than I want to be home, I want to get this right for Eli. If that means staying a few more weeks then this momma will just suck it up!
FUNNY STORY: Thursday afternoon, Eli took a nap. I used the chance to get out of the room. I was going to run to the grocery store for a couple items and grab a bite for supper. Because of a flat tire on the van I wound up not leaving the hospital and I got something from the cafeteria for supper. Eli was still asleep when I got back to the room. Someone had been there and left a stack of Sesame Street stickers. When I asked our nurse she didn't know who left them. Later that evening Eli was playing with the stickers. I asked if he saw who left them in the room and he said yes. I asked who and he looked me in the face and says "Peyton Manning." Again, I asked who left the stickers and he repeated it with an impish grin on his face. We KNOW it wasn't Peyton because he had a game that night in Denver, but still if you ask Eli who gave him the Sesame Street stickers he'll tell you Peyton did! Silly kid :) Thank you to whomever really did leave those stickers, he's enjoyed playing with them and making up stories about them!
Prayers:
- for the Care Conference to happen soon
- for the doctors involved to be able to make the right decision for Eli
- for the four of us to be ready to deal with whatever is decided at that meeting, whether it's going home with IV antibiotics for several weeks with the possibility of readmit later for further testing/surgery/pacemaker removal or to stay and do those things now
- for me to have enough energy to keep up with and occupy Eli while we're still here!
Thank you all.
Our last post led you to believe that a tagged white cell study was going to be done. That plan was changed because Eli's hemoglobin and hematocrit were too low. His hemoglobin was 8.2 and the hematocrit was in the 20s. To do the tagged white cell study, about 25cc of blood (just under an ounce) has to be removed from Eli, sent to the nuclear medicine department for them to mix in their magic potion that will bind to the white cells to make them glow on the scan, and then the mixture reinjected into Eli. Even though the blood is technically returned to Eli, it doesn't count anymore toward his total blood content. Taking that much blood out would further lower his already low H&H.
Instead of the tagged white cell study, it was decided to do a bone scan. He had that done on Thursday and he did very well. Getting it done involves being strapped to a table and a series of two minute scans taken of different parts of his body. He did much better than I expected and we were so glad we didn't have to sedate him for this. Thursday night he also received a unit of blood to help his H&H come up. It did but not quite as high as they expected. In fact, it's debatable whether or not it's high enough to do the tagged white cell study this week. It's high enough he shouldn't need a transfusion, but may not be high enough for that test. Because of the two procedures he's had in the past few weeks coupled with the bloody drainage from his chest tubes, no one was surprised that his levels were as low as they were.
The bone scan looked normal, which was good news. The down side is that we still don't know where the staph was hiding out. For now we're in another holding pattern. Eli spent Friday, Saturday and Sunday playing, eating, drawing, being silly, arguing about baths, and making me laugh. He's feeling so much better and it shows. His vital signs are good and stable. When he's awake he doesn't need oxygen and he sats in the low 90s. While he's sleeping, he still gets the 0.5L and he usually sats >95%. He's got more energy and it's harder to keep him occupied and happy.
The Care Conference for Eli hasn't happened yet. Originally they wanted the test results so they could discuss those at the meeting and form a more accurate plan. The bone scan results are helpful. The problem is that there's no clear cut formula to deal with this. Dr. Abraham (heart surgeon) discussed with us the possibility of going home soon and doing antibiotic therapy through his PICC line for several weeks. How long is several? Don't know. After that's complete then we could revisit the idea of the tagged white cell study to see if any "bad guys" show up around the pacemaker. Infectious Disease has a different perspective and we're expecting they would want to get the pacemaker out sooner rather than let Eli go home and eventually get sick again with another emergence of staph aureus.
Our concern with the tagged white cell study is that its purpose is to see where the white cells are gathering. White cells are our body's way of fighting infection. They're also a sign of healing. Remember, Eli just had surgery a couple weeks ago to remove a lot of fluid from his right lung area. Then he had two large chest tubes in place to drain lots of fluid for a week. One week ago, he had another procedure to remove those chest tubes. His pacemaker is right below the area he just had surgery on and the wires run very close to that area (under and beside it). Couldn't the natural healing process from the surgery give a false positive to a tagged white cell study? We've also been told that the tagged white cell study isn't a specific enough test to definitively show a small accumulation of staph aureus cells on something as small as a pacer wire. We're just not sure what the correct next step is or if the proper step is the tagged white cell study, is now the right time? Maybe to do it in a few weeks after more antibiotics is the right choice? Something else we think needs done (docs have mentioned this, we just don't know when it will happen) is another chest xray. He hasn't had one since the chest tubes were removed. Like I said, his sats are good and he doesn't show any signs of a reaccumulation of fluid, but he's fooled us before. Eli's pacemaker hasn't been interrogated yet either, so we don't truly know how dependent on it he really is. We need those docs to get together and discuss some things. We also need some questions answered.
What's nice about this confusing situation is that we know each of these doctors has Eli's best interests in mind. It's obvious they like the kid and want what's best for him (and us), but each are coming from different specialties which means different experiences and different perspectives.
I am torn. I want to be home. I want to be home soon. Especially because Friday is Zachary birthday. When I hugged him goodbye tonight it broke my heart to think it is possibly the last time I could be hugging my five year old baby. If we don't go home this week, the next time I'll see him is Friday night and he'll already be six. We're making plans to have a party for him in the conference room here at the hospital. We can decorate it and have a cake and he can open his gifts. It would be great to do those things at home, but we are not counting on it. I cannot emotionally afford to count on going home yet. Even more than I want to be home, I want to get this right for Eli. If that means staying a few more weeks then this momma will just suck it up!
FUNNY STORY: Thursday afternoon, Eli took a nap. I used the chance to get out of the room. I was going to run to the grocery store for a couple items and grab a bite for supper. Because of a flat tire on the van I wound up not leaving the hospital and I got something from the cafeteria for supper. Eli was still asleep when I got back to the room. Someone had been there and left a stack of Sesame Street stickers. When I asked our nurse she didn't know who left them. Later that evening Eli was playing with the stickers. I asked if he saw who left them in the room and he said yes. I asked who and he looked me in the face and says "Peyton Manning." Again, I asked who left the stickers and he repeated it with an impish grin on his face. We KNOW it wasn't Peyton because he had a game that night in Denver, but still if you ask Eli who gave him the Sesame Street stickers he'll tell you Peyton did! Silly kid :) Thank you to whomever really did leave those stickers, he's enjoyed playing with them and making up stories about them!
Prayers:
- for the Care Conference to happen soon
- for the doctors involved to be able to make the right decision for Eli
- for the four of us to be ready to deal with whatever is decided at that meeting, whether it's going home with IV antibiotics for several weeks with the possibility of readmit later for further testing/surgery/pacemaker removal or to stay and do those things now
- for me to have enough energy to keep up with and occupy Eli while we're still here!
Thank you all.
Wednesday, September 4, 2013
Busy With Lots of Nothing...Days 9, 10, 11, and 12 (Aug 31 - Sept 3)
Saturday, August 31: Zachary and I spent Friday night at my sister's house while Bryan stayed at the hospital with Eli. It felt soooo good to snuggle my snuggly five year old. I have to emphasize the fact that he's five because he won't be five much longer :( Six sounds so much older than five...although about a year ago I remember saying that five sounded so much older than four!
Eli had a pretty good day. The docs are trying him on room air while he's awake and then turning his oxygen on when he sleeps. He's been maintaining his sats on room air so hopefully he can stay off the oxygen at least while awake. He's eating a lot better today and even showing some playful moments. He must be feeling better!
Zachary and I had a fun little shopping trip to Target and lunch with my sister. Then he and my sister went swimming while I did some sneaky shopping for his upcoming birthday. Greenwood has nothing left with dinosaurs on it! I bought more than he needs, that's for sure, but it will be split between birthday and Christmas. Also, other family members usually let us buy the specific dino stuff he wants and then purchase it from us so they know he's getting the things he wants. It's all hidden at my sister's house for now, thanks Sissy!
When Z was done swimming we picked up pizza and headed back to the hospital. Bryan's parents and one of his sisters was there so we all got to visit and eat pizza for a while. Then they left and took Zachary back to Washington with them. I hated to see him go, but it's hard to entertain him in the hospital.
Sunday, September 1: Overall, today was pretty quiet. Bryan and I decided Eli needed a bath so we teamed up and got the job done. He HATES baths in the hospital. It doesn't matter what we do to soothe him, he always screams his head off. The easiest way we've found is to use two people (one on either side of him) and get the job done. It goes very quickly and once he was dried and lotioned, he got to cuddle Daddy in the chair. Because he still has his chest tubes and they're connected to suction on the wall, he doesn't have a very long "leash" from the bed. While Bryan was holding him, I got the bed linen changed.
The thoracic doctor for the weekend checked on him and had surprising news for us. He said Eli's chest tube output had decreased so much that he wanted to remove the chest tubes! Because there were two tubes and Eli is already afraid of most medical personnel, he wanted to take him to the OR/procedure room to do it under conscious sedation. Before scheduling anything like that, he wanted to make sure Eli's tubes hadn't clotted off which would result in the lower output. He ordered a chest xray and said if that was clear he would see us in the morning to remove the tubes. Radiology came and got the films which showed no clots.
We spent the rest of the day watching movies and being silly with Eli. Again, he ate well and seems to be gaining more energy every day. He's wanting to sit up and once we help him into position he can maintain it for a long time. His sats were good all day. We started his PediaSure nighttime tube feeding earlier than usual since he had to be NPO (nothing by mouth) at midnight.
Monday, September 2: We had been told Eli's procedure would be at 8 or 9am. Around 9, surgical transport came to get us. Prior to that, the doctor had been in to check on Eli and answer any final questions we had. He was very thorough and explained (even though he's fully aware we've been down this road a few times!) that removing the tubes today doesn't mean he won't need any in the future. When transport came, Eli sat on my lap on the gurney and we rode down to the preop area. A Child Life Specialist came with us and Eli watched a Backyardigans show on her ipad. It helped calm him until I had to get off the gurney. Then he must have recognized where he was and he started crying. The anesthesiologist asked if I wanted to come into the room until he was asleep. He brought me a surgical hair net and a white, zip up HazMat looking suit. I was adorable. Bryan snapped one quick picture with his phone and I got back on the gurney with Eli as they wheeled us into the operating room. I was right next to him as they pushed the sedation drugs through his IV and he drifted off. It's hard to watch but also comforting to see how much these people who barely know him care about him. I was taken back to the preop area where Bryan was waiting. We were then escorted to the surgical waiting room we have come to know so well. It was completely different this time though because it was a holiday and no one was around. Seriously, no one. The lights were dimmed and there was a television turned on. We sat and waited about thirty minutes before the doctor came out and said everything was fine. He had an xray taken in the OR to check for residual fluid. There is a small area that showed some fluid (it had been blocked on previous xray because of the size of the tubes themselves). The doctor thought the fluid in there was possibly clotting and wouldn't be an issue. We will see. Regardless, it was there even with the tubes so it wasn't going to drain if they had stayed in. We got to go to the PACU and see him as he was waking. Again, because of the Labor Day holiday, he was the only patient at the time. Even with the sedation he had both nurses wrapped around his little finger.
Once back in his room he demanded "bot!" which is his bottle. He drank that and wanted food. Overall, he was doing very well without the tubes. After he was comfortable and fully awake, his oxygen was again turned off and he maintained his sats well. Eventually he napped a little and woke up hungry again. I told you his appetite was improving! Bryan left in the late afternoon. Before and after that, Eli was acting a little silly with us and even laughing at times. He was starting to hurt but it was easily controlled with Tylenol and Motrin.
Tuesday, September 3: I had two goals for Eli today: A bath and a wagon ride. Most kids would love to get out of their hospital rooms, especially when it's something fun like a wagon ride. Not Eli. He's very distrusting of almost anything hospital related. In the spring it was like pulling teeth to get him to not scream through the halls for the first couple rides. After he decided it wasn't so bad, he quit screaming but had a look on his face that was a cross between being severely constipated and eating sour candy. I expected no less this time around.
To my pleasant surprise it was much easier than before. He was in a pretty good mood throughout the morning. At one point he looked the window and I asked what he saw. He said "Papaw's truck." We didn't see anything like that out our window, but I asked if he wanted to ride in the wagon and look out the big window and find a truck like Papaw's. He agreed very quickly! After we finished breakfast (bites of pancakes with syrup, bacon, and scrambled eggs!) he was ready. I asked the nurse if we had to take our IV pole or if he could be unhooked for a little while. He wasn't getting a lot of fluids anyway and it would be easier to take him without the pole if they were okay with that. She called and got an ok for him to be unhooked with activity. Yea! So off we went. Before we got to the window he said he wanted to go to the play room. He remembered that on his own because I never said anything to him about it! We went in there and the first thing he wanted was to play basketball. There's an arcade type basketball machine in there with severely deflated mini-basketballs. He loves it. I told him he'd have to get out of the wagon which he immediately agreed to. So for the first time since August 22, Eli stood on his own two feet. With me helping hold him up, he took shaky steps to the basketballs and started playing. He got more confident with each step. Too quickly I had to get him back in the wagon and head back to the room but that was only because his diaper was close to leaking! We ate lunch and he wanted back out. We went but this time went out to the playground. Again, I told him if he wanted to play he had to get out. Because he was still in search of papaw's truck he wanted me to hold him so he could see the parking lots around us (we're on the third floor so he couldn't see the vehicles). Once he was satisfied he wanted to walk around and even ventured up a set of steep stairs (with lots of bracing help). He walked back and forth across the equipment several times but wouldn't even consider a slide. He let me carry him down the steps because his legs were a little shaky going down.
After that we went to the Family Room because I hadn't had lunch yet! We heated up a frozen pot pie I'd stored in there and went back to the room. He promptly sat on the couch and invited me to share the pot pie. By 2:30 this afternoon he was working on his third meal! After we ate I got our nurse so we could get his bath done. She called Child Life to see if they could come make him happier while we gave him a good scrubbing. It worked a little and he got to keep a toy frog that was used during the bath. He got another linen change and then we hoped he settle down a sleep a little. After all, he'd had more activity that day than he had in nearly two weeks! He finally fell asleep about 5:30pm. That nap was 45 minutes long. He ate a few bites of supper and went back to sleep for an hour. I tried to wake him but he would just mumble something (probably not something nice) and roll over. He woke at 8:30 when night shift came to do their assessments. He wasn't happy and I knew I had to do something to wear him out again so he'd sleep before midnight tonight! He was willing to go back to the playroom so off we went. He played basketball, trains, rode the little car around the unit, and rearranged a dollhouse. As he was pushing his car around the hallways he stopped outside of room 8. It was occupied, but he stopped and said, "my room." It was his room...for several weeks last spring. I told him his room was further down the hall. He looked around and again told me we were at his room. I said, "No, you've got a Peyton room down this other hallway." Then he remembered and we moved on, but it was sadly cute to me.
We played a little longer and came back to the room by 10. He ate a few more bites for supper and brushed his teeth. Right now he's watching a movie and occasionally saying funny things to me. He's taken to calling me "Sir" today. "Eli, do you want a wagon ride?" "Yes, sir." "Eli, do you want another bite?" "Yes, sir." He says it with his crooked, mischievous smile. Sometimes he'll correct himself and say, "No, sir. You Mom" to which I'll say "Not Mom, I'm Mommy." Mischievous smile again.
Our plan now is for the tagged white cell scan to be done. Last I heard they were still trying to get it on the schedule for Wednesday. The nurse practitioner on the floor was going to find out how long Eli would have to hold still for that. We may be looking at some type of sedation or at least an attempt at relaxation/drowsy medicine to make this work. We will find out more Wednesday. Once that test is done, the goal is to get the doctors involved to have a Care Meeting. That way they can discuss results and make a plan. The doctors at this meeting would include Dr. Belcher, Infectious Disease; Dr. Abraham, cardiac surgeon; Dr. Steinberg, pacemaker cardiologist.
Again, thanks for caring and praying. Thanks for the cards sent to him at the hospital, he had a lot of fun opening them. Also thank you to anyone who has ordered through the Thirty One benefit for Eli (click here for the link to the consultant's page). So far we've had three days in a row of orders. Bryan has also been telling me about some generous mail we've received at home. We've been given some gift cards and money to help us with gas, meals, etc during this time. It's very humbling to be treated so kindly. We are very appreciative of everything, thank you!
Eli had a pretty good day. The docs are trying him on room air while he's awake and then turning his oxygen on when he sleeps. He's been maintaining his sats on room air so hopefully he can stay off the oxygen at least while awake. He's eating a lot better today and even showing some playful moments. He must be feeling better!
Zachary and I had a fun little shopping trip to Target and lunch with my sister. Then he and my sister went swimming while I did some sneaky shopping for his upcoming birthday. Greenwood has nothing left with dinosaurs on it! I bought more than he needs, that's for sure, but it will be split between birthday and Christmas. Also, other family members usually let us buy the specific dino stuff he wants and then purchase it from us so they know he's getting the things he wants. It's all hidden at my sister's house for now, thanks Sissy!
When Z was done swimming we picked up pizza and headed back to the hospital. Bryan's parents and one of his sisters was there so we all got to visit and eat pizza for a while. Then they left and took Zachary back to Washington with them. I hated to see him go, but it's hard to entertain him in the hospital.
Sunday, September 1: Overall, today was pretty quiet. Bryan and I decided Eli needed a bath so we teamed up and got the job done. He HATES baths in the hospital. It doesn't matter what we do to soothe him, he always screams his head off. The easiest way we've found is to use two people (one on either side of him) and get the job done. It goes very quickly and once he was dried and lotioned, he got to cuddle Daddy in the chair. Because he still has his chest tubes and they're connected to suction on the wall, he doesn't have a very long "leash" from the bed. While Bryan was holding him, I got the bed linen changed.
The thoracic doctor for the weekend checked on him and had surprising news for us. He said Eli's chest tube output had decreased so much that he wanted to remove the chest tubes! Because there were two tubes and Eli is already afraid of most medical personnel, he wanted to take him to the OR/procedure room to do it under conscious sedation. Before scheduling anything like that, he wanted to make sure Eli's tubes hadn't clotted off which would result in the lower output. He ordered a chest xray and said if that was clear he would see us in the morning to remove the tubes. Radiology came and got the films which showed no clots.
We spent the rest of the day watching movies and being silly with Eli. Again, he ate well and seems to be gaining more energy every day. He's wanting to sit up and once we help him into position he can maintain it for a long time. His sats were good all day. We started his PediaSure nighttime tube feeding earlier than usual since he had to be NPO (nothing by mouth) at midnight.
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| Feeling a little better and starting to color in his new coloring book |
Monday, September 2: We had been told Eli's procedure would be at 8 or 9am. Around 9, surgical transport came to get us. Prior to that, the doctor had been in to check on Eli and answer any final questions we had. He was very thorough and explained (even though he's fully aware we've been down this road a few times!) that removing the tubes today doesn't mean he won't need any in the future. When transport came, Eli sat on my lap on the gurney and we rode down to the preop area. A Child Life Specialist came with us and Eli watched a Backyardigans show on her ipad. It helped calm him until I had to get off the gurney. Then he must have recognized where he was and he started crying. The anesthesiologist asked if I wanted to come into the room until he was asleep. He brought me a surgical hair net and a white, zip up HazMat looking suit. I was adorable. Bryan snapped one quick picture with his phone and I got back on the gurney with Eli as they wheeled us into the operating room. I was right next to him as they pushed the sedation drugs through his IV and he drifted off. It's hard to watch but also comforting to see how much these people who barely know him care about him. I was taken back to the preop area where Bryan was waiting. We were then escorted to the surgical waiting room we have come to know so well. It was completely different this time though because it was a holiday and no one was around. Seriously, no one. The lights were dimmed and there was a television turned on. We sat and waited about thirty minutes before the doctor came out and said everything was fine. He had an xray taken in the OR to check for residual fluid. There is a small area that showed some fluid (it had been blocked on previous xray because of the size of the tubes themselves). The doctor thought the fluid in there was possibly clotting and wouldn't be an issue. We will see. Regardless, it was there even with the tubes so it wasn't going to drain if they had stayed in. We got to go to the PACU and see him as he was waking. Again, because of the Labor Day holiday, he was the only patient at the time. Even with the sedation he had both nurses wrapped around his little finger.
Once back in his room he demanded "bot!" which is his bottle. He drank that and wanted food. Overall, he was doing very well without the tubes. After he was comfortable and fully awake, his oxygen was again turned off and he maintained his sats well. Eventually he napped a little and woke up hungry again. I told you his appetite was improving! Bryan left in the late afternoon. Before and after that, Eli was acting a little silly with us and even laughing at times. He was starting to hurt but it was easily controlled with Tylenol and Motrin.
Tuesday, September 3: I had two goals for Eli today: A bath and a wagon ride. Most kids would love to get out of their hospital rooms, especially when it's something fun like a wagon ride. Not Eli. He's very distrusting of almost anything hospital related. In the spring it was like pulling teeth to get him to not scream through the halls for the first couple rides. After he decided it wasn't so bad, he quit screaming but had a look on his face that was a cross between being severely constipated and eating sour candy. I expected no less this time around.
To my pleasant surprise it was much easier than before. He was in a pretty good mood throughout the morning. At one point he looked the window and I asked what he saw. He said "Papaw's truck." We didn't see anything like that out our window, but I asked if he wanted to ride in the wagon and look out the big window and find a truck like Papaw's. He agreed very quickly! After we finished breakfast (bites of pancakes with syrup, bacon, and scrambled eggs!) he was ready. I asked the nurse if we had to take our IV pole or if he could be unhooked for a little while. He wasn't getting a lot of fluids anyway and it would be easier to take him without the pole if they were okay with that. She called and got an ok for him to be unhooked with activity. Yea! So off we went. Before we got to the window he said he wanted to go to the play room. He remembered that on his own because I never said anything to him about it! We went in there and the first thing he wanted was to play basketball. There's an arcade type basketball machine in there with severely deflated mini-basketballs. He loves it. I told him he'd have to get out of the wagon which he immediately agreed to. So for the first time since August 22, Eli stood on his own two feet. With me helping hold him up, he took shaky steps to the basketballs and started playing. He got more confident with each step. Too quickly I had to get him back in the wagon and head back to the room but that was only because his diaper was close to leaking! We ate lunch and he wanted back out. We went but this time went out to the playground. Again, I told him if he wanted to play he had to get out. Because he was still in search of papaw's truck he wanted me to hold him so he could see the parking lots around us (we're on the third floor so he couldn't see the vehicles). Once he was satisfied he wanted to walk around and even ventured up a set of steep stairs (with lots of bracing help). He walked back and forth across the equipment several times but wouldn't even consider a slide. He let me carry him down the steps because his legs were a little shaky going down.
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| Excited about getting some mail today (Thank You!) He tried to hold both for the camera, but unfortunately the Mickey Mouse card got folded so he could more easily show the TRex drawn in the card Zachary sent him. |
After that we went to the Family Room because I hadn't had lunch yet! We heated up a frozen pot pie I'd stored in there and went back to the room. He promptly sat on the couch and invited me to share the pot pie. By 2:30 this afternoon he was working on his third meal! After we ate I got our nurse so we could get his bath done. She called Child Life to see if they could come make him happier while we gave him a good scrubbing. It worked a little and he got to keep a toy frog that was used during the bath. He got another linen change and then we hoped he settle down a sleep a little. After all, he'd had more activity that day than he had in nearly two weeks! He finally fell asleep about 5:30pm. That nap was 45 minutes long. He ate a few bites of supper and went back to sleep for an hour. I tried to wake him but he would just mumble something (probably not something nice) and roll over. He woke at 8:30 when night shift came to do their assessments. He wasn't happy and I knew I had to do something to wear him out again so he'd sleep before midnight tonight! He was willing to go back to the playroom so off we went. He played basketball, trains, rode the little car around the unit, and rearranged a dollhouse. As he was pushing his car around the hallways he stopped outside of room 8. It was occupied, but he stopped and said, "my room." It was his room...for several weeks last spring. I told him his room was further down the hall. He looked around and again told me we were at his room. I said, "No, you've got a Peyton room down this other hallway." Then he remembered and we moved on, but it was sadly cute to me.
We played a little longer and came back to the room by 10. He ate a few more bites for supper and brushed his teeth. Right now he's watching a movie and occasionally saying funny things to me. He's taken to calling me "Sir" today. "Eli, do you want a wagon ride?" "Yes, sir." "Eli, do you want another bite?" "Yes, sir." He says it with his crooked, mischievous smile. Sometimes he'll correct himself and say, "No, sir. You Mom" to which I'll say "Not Mom, I'm Mommy." Mischievous smile again.
Our plan now is for the tagged white cell scan to be done. Last I heard they were still trying to get it on the schedule for Wednesday. The nurse practitioner on the floor was going to find out how long Eli would have to hold still for that. We may be looking at some type of sedation or at least an attempt at relaxation/drowsy medicine to make this work. We will find out more Wednesday. Once that test is done, the goal is to get the doctors involved to have a Care Meeting. That way they can discuss results and make a plan. The doctors at this meeting would include Dr. Belcher, Infectious Disease; Dr. Abraham, cardiac surgeon; Dr. Steinberg, pacemaker cardiologist.
Again, thanks for caring and praying. Thanks for the cards sent to him at the hospital, he had a lot of fun opening them. Also thank you to anyone who has ordered through the Thirty One benefit for Eli (click here for the link to the consultant's page). So far we've had three days in a row of orders. Bryan has also been telling me about some generous mail we've received at home. We've been given some gift cards and money to help us with gas, meals, etc during this time. It's very humbling to be treated so kindly. We are very appreciative of everything, thank you!
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