Annie had a rough night last night. She was uncomfortable and crying for much of the night and continued to have seizures. We gave her more Diastat in the middle of the night which worked for a few hours before the seizures came right back. We decided that once we got the kids to school, we'd have to take her to the ER.
However, Annie's seizures subsided once we got her up and as we got ready for the day. So instead of going to the ER where we knew they'd just sedate her, we called her neurologist. She let us know how much more Ativan we could still give Annie at home to sedate her here, which is better than doing it in the ER. She said if we did need to go to the ER, we could request only a loading dose of Keppra which isn't sedating. So we'll keep those options in our back pocket if the seizures pick up again.
The neurologist did agree that we should do an MRI of Annie's brain since we've looked so thoroughly at every other organ in her body without finding any problems. But that MRI won't be until October 9th. I don't think we'll find anything wrong with her brain (other than what we already know from Aicardi Syndrome), but it would be nice to just rule out any potential problems there.
We talked to our pediatrician today and found out that Annie's urine culture is starting to grow some bacteria. Final results won't be in until Monday, but we decided it would best to get some antibiotics on board now rather than waiting. So Annie got 2 big injections of rocephin to kick start treatment, and we'll start her oral med tomorrow and adjust if needed, once we have final culture results.
Since this UTI has recurred so quickly, we're led to believe that it's the same infection she had in the hospital and it just didn't get fully treated for some reason. We discovered today that her last urine check before she was discharged was never sent in for culture! So that's frustrating! But hopefully now that Annie has antibiotics on board again she'll start to feel better, be in less pain, and possibly even have fewer seizures.
It's been a difficult 24 hours with almost constant crying and seizing, but the best news to share is that Annie is now urinating! And she even had a BM today! So hopefully things are headed in the right direction again and we'll all be able to get some sleep again soon.
Friday, September 20, 2019
Thursday, September 19, 2019
September 19th Update: TMI Ahead!
This post probably has too much information (TMI), but it's our life and what we're dealing with right now. We are so encouraged that Annie is tolerating her feedings. She is getting her regular diet plus some additional fluid, which is great! The problem is that she is not urinating or having BMs. She is no longer vomiting, so we can't figure out why she isn't urinating.
We visited her pediatrician today to get a urine analysis and culture after learning that she has debris in her bladder yesterday. She did have urine in her bladder this morning, so we know her kidneys are working (plus they were just sonogramed yesterday) but her urine was pretty dark, indicating she must still be a bit dehydrated. So we've pushed more fluids today, but she is still not voiding. The UA today looked good, but it will still be sent for culture.
She also hasn't had a BM since last weekend, so that is concerning as well. We gave her some Miralax today and hope that helps soon. That may be contributing to her lack of voiding as well. We just aren't sure.
Annie has been very fussy today and crying quite a bit. We wonder if she is having gas pains or stomach cramps from constipation, or if she does have a UTI and it hurts when she starts to void so she holds it. We just aren't sure. But it's so very hard to watch her feel so rotten.
When Annie hasn't been crying today, she has been having a unique kind of seizure that is not normal for her. I gave her some Ativan earlier today and she was able to sleep for 2 hours, but then once she woke up this afternoon, the fussiness and seizures started again. She needed Diastat just yesterday, so we're hesitant to give her more again today. We'll just have to continue to see how she does with seizures. We're hoping she will relax and sleep tonight. So far this evening she has settled down a little bit, so we're praying her brain continues to calms down on its own. We'll sedate her with the Ativan or Diastat if needed, but we hate to slow down her bowels any more.
It's so hard to know what is causing what. We wonder if Annie might be having some kind of neurological problem, or if the seizures are in response to the rest of her body not being healthy and well. It's very common for Annie to have worse seizures when she's sick or when she is out of her normal routine. We also wonder if she still has an ileus preventing a BM. There are just so many aspects involved right now and each one falls under the care of a different specialist--her GI doctor, her urologist, and her neurologist.
So tonight we are specifically praying for Annie to urinate, to have a BM, and to have her seizures settle down. We fear that we may end up back in the hospital soon even though she is tolerating her feeds like a champ.
We visited her pediatrician today to get a urine analysis and culture after learning that she has debris in her bladder yesterday. She did have urine in her bladder this morning, so we know her kidneys are working (plus they were just sonogramed yesterday) but her urine was pretty dark, indicating she must still be a bit dehydrated. So we've pushed more fluids today, but she is still not voiding. The UA today looked good, but it will still be sent for culture.
She also hasn't had a BM since last weekend, so that is concerning as well. We gave her some Miralax today and hope that helps soon. That may be contributing to her lack of voiding as well. We just aren't sure.
Annie has been very fussy today and crying quite a bit. We wonder if she is having gas pains or stomach cramps from constipation, or if she does have a UTI and it hurts when she starts to void so she holds it. We just aren't sure. But it's so very hard to watch her feel so rotten.
When Annie hasn't been crying today, she has been having a unique kind of seizure that is not normal for her. I gave her some Ativan earlier today and she was able to sleep for 2 hours, but then once she woke up this afternoon, the fussiness and seizures started again. She needed Diastat just yesterday, so we're hesitant to give her more again today. We'll just have to continue to see how she does with seizures. We're hoping she will relax and sleep tonight. So far this evening she has settled down a little bit, so we're praying her brain continues to calms down on its own. We'll sedate her with the Ativan or Diastat if needed, but we hate to slow down her bowels any more.
It's so hard to know what is causing what. We wonder if Annie might be having some kind of neurological problem, or if the seizures are in response to the rest of her body not being healthy and well. It's very common for Annie to have worse seizures when she's sick or when she is out of her normal routine. We also wonder if she still has an ileus preventing a BM. There are just so many aspects involved right now and each one falls under the care of a different specialist--her GI doctor, her urologist, and her neurologist.
So tonight we are specifically praying for Annie to urinate, to have a BM, and to have her seizures settle down. We fear that we may end up back in the hospital soon even though she is tolerating her feeds like a champ.
Wednesday, September 18, 2019
September 18th: More Testing, No Answers
We had a second day of testing at the hospital today. Annie had a renal sonogram and full upper abdominal sonogram. She had her routine dexa bone density scan and a routine spinal x-ray just as part of her annual testing.
Her chest x-ray from yesterday was clear. The nodules in her lungs that were reported on the last CT scan ended up being an imaging flaw from all the spinal hardware she has. So her lungs are good!
Annie's blood work from yesterday shows that her white blood count has gone up a little from last Friday when she was discharged. It's now at 18.9k. And still no one knows why. The rest of her lab values don't look too bad. She still has elevated platelets. Her hemoglobin has come up to 11 from 9 on Friday. Although that increase could just be because she's a little more dehydrated now and her blood is more concentrated.
Her sonograms today looked good showing no problems with her kidneys, liver, gall bladder, or pancreas. She does have some debris in her bladder though, so we'll probably have a UA and culture done tomorrow.
We met with Annie's hematologist today. He thinks we need to have our GI scope her again for a possible GI bleed. We've seen just a few flecks of old blood in her last vomit last night, but not much and only that one time. So if we see more, or a scope shows bleeding, we'll have to stop the injection treatments for her blood clot. However, Annie's vomiting has subsided a bit this afternoon, although she is only getting gatorade at a rate of 40cc/hr. The hematologist will continue to monitor Annie's blood clot and will do another sonogram of it in a month.
We definitely prefer to be at home with Annie, but it has been a difficult two days running around getting testing done and trying to contact doctors by phone to figure out what's going on and what still needs to happen. None of the specialists we're working with are on the same page and trying to relay messages through nurses is really hard, so that has been difficult today. We hope to form a better plan tomorrow when we see our pediatrician again and have him coordinate care among her specialists. We also have Annie's regular annual appointment with most of her specialists next week, so if we can keep her hydrated until then, that will hopefully be a chance to get everyone on the same page and make some progress in her treatment.
Today she is doing a bit better with tolerating some clear liquids, but she's having more seizures again, particularly her gelastic seizures. She had myoclonic seizures this morning for about two hours and needed Diastat. We might need to get an additional seizure medication on board when we meet with our neurologist next week. But I'm hoping Annie's seizures return to normal once we get the underlying problem resolved.
Her chest x-ray from yesterday was clear. The nodules in her lungs that were reported on the last CT scan ended up being an imaging flaw from all the spinal hardware she has. So her lungs are good!
Annie's blood work from yesterday shows that her white blood count has gone up a little from last Friday when she was discharged. It's now at 18.9k. And still no one knows why. The rest of her lab values don't look too bad. She still has elevated platelets. Her hemoglobin has come up to 11 from 9 on Friday. Although that increase could just be because she's a little more dehydrated now and her blood is more concentrated.
Her sonograms today looked good showing no problems with her kidneys, liver, gall bladder, or pancreas. She does have some debris in her bladder though, so we'll probably have a UA and culture done tomorrow.
We met with Annie's hematologist today. He thinks we need to have our GI scope her again for a possible GI bleed. We've seen just a few flecks of old blood in her last vomit last night, but not much and only that one time. So if we see more, or a scope shows bleeding, we'll have to stop the injection treatments for her blood clot. However, Annie's vomiting has subsided a bit this afternoon, although she is only getting gatorade at a rate of 40cc/hr. The hematologist will continue to monitor Annie's blood clot and will do another sonogram of it in a month.
We definitely prefer to be at home with Annie, but it has been a difficult two days running around getting testing done and trying to contact doctors by phone to figure out what's going on and what still needs to happen. None of the specialists we're working with are on the same page and trying to relay messages through nurses is really hard, so that has been difficult today. We hope to form a better plan tomorrow when we see our pediatrician again and have him coordinate care among her specialists. We also have Annie's regular annual appointment with most of her specialists next week, so if we can keep her hydrated until then, that will hopefully be a chance to get everyone on the same page and make some progress in her treatment.
Today she is doing a bit better with tolerating some clear liquids, but she's having more seizures again, particularly her gelastic seizures. She had myoclonic seizures this morning for about two hours and needed Diastat. We might need to get an additional seizure medication on board when we meet with our neurologist next week. But I'm hoping Annie's seizures return to normal once we get the underlying problem resolved.
Tuesday, September 17, 2019
September 17th Update
Our weekend at home all together was pretty uneventful as we tried to recover from three weeks of exhaustion. But last night, Annie started vomiting again. She vomited consistently every hour throughout the whole night. We stopped her feeds but she continued to throw up until about 6am.
We already had a follow-up scheduled with her pediatrician today, so that was helpful. Last night I was looking through all the radiology reports from Annie's hospital stay and noticed some findings regarding Annie's pancreas (a pseudocyst or hypodense lesion, and some other pancreatic issues), as well as nodules that were found in her upper left lung. No one mentioned any of these findings to us while in the hospital, so I asked our pediatrician to read through the reports. He agreed that we need to look into these issues further. He believes a pancreatic pseudocyst would definitely cause vomiting, as would mucous from a lung infection.
So Annie and I headed back to the Children's hospital and had a chest x-ray done, as well as blood work to check various things such as her white blood count, hemoglobin, level of her blood thinner, electrolytes, and pancreatic function. We were scheduled for blood work tomorrow with the hematologist, but we were able to get his labs drawn today also, which will save us some time when we meet with him tomorrow.
Annie was already scheduled tomorrow for her annual, routine renal sonogram and dexa bone density scan, so our pediatrician ordered extra imaging of her pancreas as well.
So while it's been wonderful to have Annie home with us, we still have some unanswered questions and issues. We're really praying we can get her the help and treatment she needs without having to stay in the hospital again. We really appreciate continued prayers for her and our family.
We already had a follow-up scheduled with her pediatrician today, so that was helpful. Last night I was looking through all the radiology reports from Annie's hospital stay and noticed some findings regarding Annie's pancreas (a pseudocyst or hypodense lesion, and some other pancreatic issues), as well as nodules that were found in her upper left lung. No one mentioned any of these findings to us while in the hospital, so I asked our pediatrician to read through the reports. He agreed that we need to look into these issues further. He believes a pancreatic pseudocyst would definitely cause vomiting, as would mucous from a lung infection.
So Annie and I headed back to the Children's hospital and had a chest x-ray done, as well as blood work to check various things such as her white blood count, hemoglobin, level of her blood thinner, electrolytes, and pancreatic function. We were scheduled for blood work tomorrow with the hematologist, but we were able to get his labs drawn today also, which will save us some time when we meet with him tomorrow.
Annie was already scheduled tomorrow for her annual, routine renal sonogram and dexa bone density scan, so our pediatrician ordered extra imaging of her pancreas as well.
So while it's been wonderful to have Annie home with us, we still have some unanswered questions and issues. We're really praying we can get her the help and treatment she needs without having to stay in the hospital again. We really appreciate continued prayers for her and our family.
Saturday, September 14, 2019
September 14th: She's Home!
We were joyfully surprised last night to have Annie finally discharged from the hospital. That was a long and stressful 19 day stay. We didn't expect her to be discharged quite so soon because she had evidence of internal bleeding yesterday morning, but her labs late yesterday afternoon had improved, indicating that the bleeding must have resolved itself. Since we found some clotted blood in her stomach, we suspect she was bleeding from having the J-tube all twisted up in her stomach and causing irritation.
Once the doctors saw that Annie's hemoglobin had recovered from 8.1 yesterday morning to 9.0 late yesterday afternoon, they said there was really no reason to keep her in the hospital. She is not recovered yet from all the issues she's facing, but we no longer need to be inpatient to monitor and treat her.
Annie needs to receive injections twice daily for the next 3-6 months to treat her blood clot. We'll have several appointments over that time for the hematologists to monitor that blood clot with sonogram until we know it is gone.
Annie's lab work is still not normal, with very low hemoglobin and high white blood count, so we will continue to monitor that with regular lab work as well. Annie's high heart rates have been a little lower lately, but still not normal, and her body temperature continues to drop at night lower than it should. So we will be monitoring all these things from home and taking her to several doctor appointments over the next few weeks and months.
So even though Annie is still not back to her normal self, it is a huge blessing to have her back at home with us while we continue to treat her. Thank you so much for all your prayers and well wishes!
Once the doctors saw that Annie's hemoglobin had recovered from 8.1 yesterday morning to 9.0 late yesterday afternoon, they said there was really no reason to keep her in the hospital. She is not recovered yet from all the issues she's facing, but we no longer need to be inpatient to monitor and treat her.
Annie needs to receive injections twice daily for the next 3-6 months to treat her blood clot. We'll have several appointments over that time for the hematologists to monitor that blood clot with sonogram until we know it is gone.
Annie's lab work is still not normal, with very low hemoglobin and high white blood count, so we will continue to monitor that with regular lab work as well. Annie's high heart rates have been a little lower lately, but still not normal, and her body temperature continues to drop at night lower than it should. So we will be monitoring all these things from home and taking her to several doctor appointments over the next few weeks and months.
So even though Annie is still not back to her normal self, it is a huge blessing to have her back at home with us while we continue to treat her. Thank you so much for all your prayers and well wishes!
Friday, September 13, 2019
September 13th: Another Setback
We awoke this morning planning to take Annie home at some point today. However, her morning lab work is very concerning. Annie's hematocrit and hemoglobin have taken a nosedive in the last 24 hours. This is particularly
concerning because she is on a blood thinner to treat her blood clot. So
this lab work indicates that she is bleeding internally somewhere. On a better note, her white blood count came back down to 17.3k which is good, although still elevated.
Annie's blood pressure is continuing to trend downwards as well, and she is still having pretty low body temperatures at night. So Annie is not going home today. We'll need to find the source of bleeding and make sure her hemoglobin and hematocrit are stable first.
I drew out stomach contents from Annie's g-button to see if she has bleeding in her stomach and she did have some dark red blood, confirmed by the lab. They suspect that the J-tube coiled up in her stomach the past few days most likely caused irritation to her stomach and has caused some bleeding there, exacerbated by the blood thinner. The blood was dark red and looked like older clotted blood, so they suspect that that bleeding is possibly resolving on its own.
They will check Annie's hematocrit and hemoglobin again this afternoon to see if they are stabilizing or continuing to drop. Her lab work shows that she is working hard to produce more blood, but her body just can't seem to keep up. If she drops to about 7.6 or lower (she's at 8.1 this morning) then they will give her a blood transfusion and be more aggressive in finding the source of bleeding. They may repeat the upper endoscopy to look at her stomach, or do more imaging to find the source. They would also have to stop the blood thinner until the bleeding is controlled.
Fortunately, Molly made it to Minnesota for her band trip early this morning. But my mom is also leaving to go home today too. We're still praying that Annie will be discharged sometime this weekend or early next week.
Annie's blood pressure is continuing to trend downwards as well, and she is still having pretty low body temperatures at night. So Annie is not going home today. We'll need to find the source of bleeding and make sure her hemoglobin and hematocrit are stable first.
I drew out stomach contents from Annie's g-button to see if she has bleeding in her stomach and she did have some dark red blood, confirmed by the lab. They suspect that the J-tube coiled up in her stomach the past few days most likely caused irritation to her stomach and has caused some bleeding there, exacerbated by the blood thinner. The blood was dark red and looked like older clotted blood, so they suspect that that bleeding is possibly resolving on its own.
They will check Annie's hematocrit and hemoglobin again this afternoon to see if they are stabilizing or continuing to drop. Her lab work shows that she is working hard to produce more blood, but her body just can't seem to keep up. If she drops to about 7.6 or lower (she's at 8.1 this morning) then they will give her a blood transfusion and be more aggressive in finding the source of bleeding. They may repeat the upper endoscopy to look at her stomach, or do more imaging to find the source. They would also have to stop the blood thinner until the bleeding is controlled.
Fortunately, Molly made it to Minnesota for her band trip early this morning. But my mom is also leaving to go home today too. We're still praying that Annie will be discharged sometime this weekend or early next week.
Thursday, September 12, 2019
September 12th: Getting Closer!
Although Annie's CT scan last night failed to get information about the vessels in her chest, we did learn today that the CT scan showed that her J-tube has become dislodged and is all twisted up in her stomach instead of running down into her small intestines. No wonder it's not flushing well! It's all kinked up in her tummy!
They were able to get a new IV started again this morning so we repeated the CT scan with the contrast actually going where it was supposed to go. Thankfully, there are no other clots or embolisms, other than the one in her upper arm.
We were trained on how to give her blood thinner shots, and tomorrow they will check her drug level to see if her dose needs to be adjusted. We'll also have a consultation with Hematology to find out exactly how long she'll need to receive these twice-daily shots, potentially 6 months or more.
They wanted us to resume Annie's regular ulcerative colitis medication that can easily clog her tube, so we went ahead and gave it to her through the G-port of the GJ tube. Just as we expected, it clogged. So this afternoon, we removed the GJ tube, since the J-tube portion was all twisted up in her stomach anyway, and replaced it with her regular G-button. Thank goodness!
So at this point, there is nothing they are doing at the hospital that we can't do at home for Annie. So we suspect that she might be going home tomorrow! She'll still need a lot of monitoring--her white blood count went up today, so we'll have to watch that as well as some other labs that aren't normal yet. Her temperatures are still dropping slightly at night and she's still having higher heart rates. We hope that those are just side effects from the blood clot, and as that resolves over time, everything else will too. Annie will have several appointments in the upcoming weeks as she continues to be monitored, but it will be much easier to do clinic visits than stay in the hospital! She's not out of the woods yet, but it will be such a blessing to have her home with us again! Thank you so much for all your prayers for her!
They were able to get a new IV started again this morning so we repeated the CT scan with the contrast actually going where it was supposed to go. Thankfully, there are no other clots or embolisms, other than the one in her upper arm.
We were trained on how to give her blood thinner shots, and tomorrow they will check her drug level to see if her dose needs to be adjusted. We'll also have a consultation with Hematology to find out exactly how long she'll need to receive these twice-daily shots, potentially 6 months or more.
They wanted us to resume Annie's regular ulcerative colitis medication that can easily clog her tube, so we went ahead and gave it to her through the G-port of the GJ tube. Just as we expected, it clogged. So this afternoon, we removed the GJ tube, since the J-tube portion was all twisted up in her stomach anyway, and replaced it with her regular G-button. Thank goodness!
So at this point, there is nothing they are doing at the hospital that we can't do at home for Annie. So we suspect that she might be going home tomorrow! She'll still need a lot of monitoring--her white blood count went up today, so we'll have to watch that as well as some other labs that aren't normal yet. Her temperatures are still dropping slightly at night and she's still having higher heart rates. We hope that those are just side effects from the blood clot, and as that resolves over time, everything else will too. Annie will have several appointments in the upcoming weeks as she continues to be monitored, but it will be much easier to do clinic visits than stay in the hospital! She's not out of the woods yet, but it will be such a blessing to have her home with us again! Thank you so much for all your prayers for her!
September 12th: Life Goes On
Last night Annie went for her CT scan to check for pulmonary embolisms and blood clots in her chest and lungs. It took the vascular access team about an hour to find a vein large enough to tolerate the high rate of contrast that has to be pumped in during the CT scan, but they finally found one and carefully placed the new line under sonogram guidance.
However, when we went to get the scan, Annie cried and fussed as they injected the contrast during the scan. Her IV line had failed, so all the contrast had been painfully injected into the surrounding tissues of her arm, causing it to swell up. Because the contrast didn't get into her vascular system, the CT scan didn't show anything. Discouraged, we returned to our room, and they decided they'll try again in the morning. Annie is literally running out of veins that are in good enough condition to tolerate IV lines. The vascular access team is now in again today, looking for larger veins in her upper arm, thigh, and ankle. Once they get a line in place, we'll immediately have the CT scan and cross our fingers that the contrast doesn't blow out the IV again.
Last night they started Annie on a blood thinner, Lovenox. It is given twice a day by injection into her thigh or abdomen. Right now they suspect she will need to stay on it for 6 months or more. But that plan might change depending on the CT results we get today and if they find any other clots or embolisms.
Annie had a pretty uneventful night. She had a fair amount of discomfort, most likely from her swollen arms. Her temperature was a little more stable last night. But this morning her white blood count has gone up. It might be due to the inflammation from the blood clot and the contrast infiltration, but we're not sure. So we'll continue to watch her blood counts daily.
This has been by far the busiest hospital stay we've ever had. It has been exhausting to have so many blood tests run, radiology tests, and procedures. It seems as if we have a steady stream of nurses, residents, hospitalists, phlebotomists, and several other specialists in our room. To say we are exhausted is an understatement.
Previous hospitalizations have seemed much simpler since Molly and Lexie were younger and didn't have so much going on. But life continues on for them with homework, new band classes, field trips, marching band rehearsals, learning show choir music, deadlines for school fees, football games, weekend parties, playdates, early morning seminary, and many other things. Molly even leaves on a weekend band trip tomorrow. It's so difficult to juggle all the things they have going on and be at the hospital to care for Annie, be available to talk to doctors and get various test results to help plan her care. And while all this is going on, Justin still has classes at the university to be teaching, students to help, and meetings he's responsible for.
Molly and Lexie feel the stress too since we aren't at home much to help with homework, fill out permission slips, or get school fees paid, etc. And when one of us is home, we are exhausted, in need of a shower, and still worrying about Annie, and often on the phone with the other one of us at the hospital. And not only are Molly and Lexie worried about Annie, but they still have all their school work and extracurriculars to worry about, all while missing their parents. We are so grateful that my mom is still here to help with housework, laundry, groceries, and making meals. I definitely don't have any energy or time to take care of those things. But she will soon be going home.
I saw a picture online yesterday that has gone viral. It's a picture of a 4 year old boy with his bald head standing over a toilet feeling sick from chemo while his 5 year old sister stands next to him with her hand on his back. The mother posted that picture to show that these tough medical challenges are not just a trial for the child going through it, but it affects the entire family. I could relate to all the feelings she expressed. Our family is definitely feeling the strain of this hospital stay. We're praying that we can get Annie home, even if she's not better, and continue to care for her with our family all under one roof. She'll still need visits to the hospital and clinics to be monitored, but all being at home would be a huge blessing for our whole family. The results of her scan today will help us know how much longer until that wish might be granted.
As I've been typing this, the vascular access team was able to get a large mid-line IV in Annie's upper arm! So it's time to try the CT scan once again. I'll share results later today.
However, when we went to get the scan, Annie cried and fussed as they injected the contrast during the scan. Her IV line had failed, so all the contrast had been painfully injected into the surrounding tissues of her arm, causing it to swell up. Because the contrast didn't get into her vascular system, the CT scan didn't show anything. Discouraged, we returned to our room, and they decided they'll try again in the morning. Annie is literally running out of veins that are in good enough condition to tolerate IV lines. The vascular access team is now in again today, looking for larger veins in her upper arm, thigh, and ankle. Once they get a line in place, we'll immediately have the CT scan and cross our fingers that the contrast doesn't blow out the IV again.
Last night they started Annie on a blood thinner, Lovenox. It is given twice a day by injection into her thigh or abdomen. Right now they suspect she will need to stay on it for 6 months or more. But that plan might change depending on the CT results we get today and if they find any other clots or embolisms.
Annie had a pretty uneventful night. She had a fair amount of discomfort, most likely from her swollen arms. Her temperature was a little more stable last night. But this morning her white blood count has gone up. It might be due to the inflammation from the blood clot and the contrast infiltration, but we're not sure. So we'll continue to watch her blood counts daily.
This has been by far the busiest hospital stay we've ever had. It has been exhausting to have so many blood tests run, radiology tests, and procedures. It seems as if we have a steady stream of nurses, residents, hospitalists, phlebotomists, and several other specialists in our room. To say we are exhausted is an understatement.
Previous hospitalizations have seemed much simpler since Molly and Lexie were younger and didn't have so much going on. But life continues on for them with homework, new band classes, field trips, marching band rehearsals, learning show choir music, deadlines for school fees, football games, weekend parties, playdates, early morning seminary, and many other things. Molly even leaves on a weekend band trip tomorrow. It's so difficult to juggle all the things they have going on and be at the hospital to care for Annie, be available to talk to doctors and get various test results to help plan her care. And while all this is going on, Justin still has classes at the university to be teaching, students to help, and meetings he's responsible for.
Molly and Lexie feel the stress too since we aren't at home much to help with homework, fill out permission slips, or get school fees paid, etc. And when one of us is home, we are exhausted, in need of a shower, and still worrying about Annie, and often on the phone with the other one of us at the hospital. And not only are Molly and Lexie worried about Annie, but they still have all their school work and extracurriculars to worry about, all while missing their parents. We are so grateful that my mom is still here to help with housework, laundry, groceries, and making meals. I definitely don't have any energy or time to take care of those things. But she will soon be going home.
I saw a picture online yesterday that has gone viral. It's a picture of a 4 year old boy with his bald head standing over a toilet feeling sick from chemo while his 5 year old sister stands next to him with her hand on his back. The mother posted that picture to show that these tough medical challenges are not just a trial for the child going through it, but it affects the entire family. I could relate to all the feelings she expressed. Our family is definitely feeling the strain of this hospital stay. We're praying that we can get Annie home, even if she's not better, and continue to care for her with our family all under one roof. She'll still need visits to the hospital and clinics to be monitored, but all being at home would be a huge blessing for our whole family. The results of her scan today will help us know how much longer until that wish might be granted.
As I've been typing this, the vascular access team was able to get a large mid-line IV in Annie's upper arm! So it's time to try the CT scan once again. I'll share results later today.
Wednesday, September 11, 2019
September 11th: A Big Setback
Annie had a fairly uneventful night last night. At 3:00am I woke up and checked what her midnight vitals were. They showed her temperature was down to 96.4, yet no one had taken any measures to warm her up! So I piled blankets on her and turned the heat lamp on for a little while. Her temperature came up to 97.7 and this morning has recovered to 98.2. No one knows why her temperature is taking such low dips at night.
The good news today is that Annie's white blood count continues to drop! It fell by a full 9,000 since yesterday, now down to 17,500! We're so relieved to see that continue to drop.
Annie's heart rate is still elevated. She stays around the 80s at night but it starts increasing throughout the morning and afternoon each day, typically reaching the 130s.
Annie's hemoglobin is lower again today at 9.5, but they drew two blood cultures yesterday, requiring a total of 30cc of blood! So we suspect that just getting her well and not needing so much blood work will help a lot with that.
Annie is on feeds comparable to her at-home amounts, all going through the G-port of her GJ tube, so we hope that we can replace the GJ tube with her regular G-tube soon.
This morning when I got Annie in her chair, I noticed that her left arm, which has her PICC line, is rather swollen! I had the nurse stop the small amount of fluid Annie has been receiving through that line. Because of this issue, they removed the PICC line late this morning and did an ultrasound of her arm and upper chest.
The ultrasound showed that Annie has a blood clot that is blocking two vessels. In just a little while she will head down to radiology to get a CTA scan that will check for clots in her lungs and chest and any pulmonary embolisms which can be life-threatening. Annie will need a new IV of a rather large gauge for the CTA scan. She is running out of veins that haven't been traumatized, so the vascular access team spent quite a while trying to get an IV started.
Annie will need to be on an anticoagulant (blood thinner), possibly for the next 6-12 months. This is definitely not the news we wanted today just as she was starting to make improvements in other areas. However, this new development might be the reason Annie's heart rate has been so high. Blood clots can be pretty serious, so please continue to keep Annie in your prayers, that her clots might get resolved without any problems.
The good news today is that Annie's white blood count continues to drop! It fell by a full 9,000 since yesterday, now down to 17,500! We're so relieved to see that continue to drop.
Annie's heart rate is still elevated. She stays around the 80s at night but it starts increasing throughout the morning and afternoon each day, typically reaching the 130s.
Annie's hemoglobin is lower again today at 9.5, but they drew two blood cultures yesterday, requiring a total of 30cc of blood! So we suspect that just getting her well and not needing so much blood work will help a lot with that.
Annie is on feeds comparable to her at-home amounts, all going through the G-port of her GJ tube, so we hope that we can replace the GJ tube with her regular G-tube soon.
This morning when I got Annie in her chair, I noticed that her left arm, which has her PICC line, is rather swollen! I had the nurse stop the small amount of fluid Annie has been receiving through that line. Because of this issue, they removed the PICC line late this morning and did an ultrasound of her arm and upper chest.
The ultrasound showed that Annie has a blood clot that is blocking two vessels. In just a little while she will head down to radiology to get a CTA scan that will check for clots in her lungs and chest and any pulmonary embolisms which can be life-threatening. Annie will need a new IV of a rather large gauge for the CTA scan. She is running out of veins that haven't been traumatized, so the vascular access team spent quite a while trying to get an IV started.
Annie will need to be on an anticoagulant (blood thinner), possibly for the next 6-12 months. This is definitely not the news we wanted today just as she was starting to make improvements in other areas. However, this new development might be the reason Annie's heart rate has been so high. Blood clots can be pretty serious, so please continue to keep Annie in your prayers, that her clots might get resolved without any problems.
 |
| Swollen left arm with the blood clot vs. Normal right arm |
Tuesday, September 10, 2019
September 10th: Bouncing Back!
After such a horrible scare last night, Annie has seemed to bounce
back today just fine. She spent the entire afternoon up in her
wheelchair watching a movie and playing with her beads on her tray. Her
temperature seems to have stabilized and she was able to come out from
under the heating blankets and heat lamp around noon today.
Annie's heart rate is still elevated, which it has been for about a week or more. Her hemoglobin is down to 9.7 but they believe it's because she hasn't been getting her normal diet for a while and because they've been drawing so much blood every day for two weeks now.
Between the high heart rate, elevated CRP, and hypothermic episode last night, they suspect she still has an infection somewhere, but no one really knows. We are encouraged that her white blood count came down so much today, but it is still pretty high. They drew blood from two different locations on her today to culture. So we'll have to wait a couple days to get the results from those. If things make a turn for the worse, they will consider imaging her spine to look for infection.
Annie is now on feeds that are equivalent to her diet and fluid intake at home! They are going through her G-tube and she is doing great! The nurse partially clogged her J-tube this morning with meds, so we're going to start giving all meds through the G-tube now. I think Annie can tolerate that now anyway. Hopefully we'll be able to transition from the GJ tube back to the regular G-tube soon and then we won't have to worry about all these clogging issues!
So they are just watching Annie and waiting for blood culture results. If they are negative after just 24 hours, they will consider pulling out her PICC line, which could be a possible source of infection. Annie hasn't been using her PICC line for anything for a day or so, but they want to keep it in a while longer in case blood cultures show that she needs more IV antibiotics. Final culture results won't be in until Friday. We're praying for a calm and uneventful night tonight!
Annie's heart rate is still elevated, which it has been for about a week or more. Her hemoglobin is down to 9.7 but they believe it's because she hasn't been getting her normal diet for a while and because they've been drawing so much blood every day for two weeks now.
Between the high heart rate, elevated CRP, and hypothermic episode last night, they suspect she still has an infection somewhere, but no one really knows. We are encouraged that her white blood count came down so much today, but it is still pretty high. They drew blood from two different locations on her today to culture. So we'll have to wait a couple days to get the results from those. If things make a turn for the worse, they will consider imaging her spine to look for infection.
Annie is now on feeds that are equivalent to her diet and fluid intake at home! They are going through her G-tube and she is doing great! The nurse partially clogged her J-tube this morning with meds, so we're going to start giving all meds through the G-tube now. I think Annie can tolerate that now anyway. Hopefully we'll be able to transition from the GJ tube back to the regular G-tube soon and then we won't have to worry about all these clogging issues!
So they are just watching Annie and waiting for blood culture results. If they are negative after just 24 hours, they will consider pulling out her PICC line, which could be a possible source of infection. Annie hasn't been using her PICC line for anything for a day or so, but they want to keep it in a while longer in case blood cultures show that she needs more IV antibiotics. Final culture results won't be in until Friday. We're praying for a calm and uneventful night tonight!
Subscribe to:
Posts (Atom)
Posts
