Today is day 16 with Annie in the hospital. It's been a roller-coaster here with her. We don't know what happened in the night, but Justin was woken at 3:00am to our nurse, the charge nurse, the resident, and the hospitalist in the room. Apparently during the night our nurse noticed that Annie had gone very pale and had become non-responsive. Her temperature had dropped to 92 degrees!
They got heating blankets and a heat lamp on her as well as monitors to more closely watch her heart rate, respirations, and oxygen saturations. They also drew blood for labs to see what was going on. Annie's temperature slowly came up to 97 eventually, but she remained non-responsive until about 9:00 this morning.
Surprisingly, all of Annie's labs look pretty good. Her electrolytes are all fairly balanced, and her white blood count has even come down by 6,000 to 26,000! We suspect that the sulfasalzine was to blame for her increasing white count since it made a dramatic drop 24 hours after stopping that medication! So that was great news! But Annie's platelets are still elevated, as well as her CRP which is an inflammation marker in the blood. Annie's sodium was just slightly on the low end of normal, so they are now mixing her formula powder in pedialyte instead of plain water.
We don't know what happened last night to cause such problems, but now this morning she has become more alert and responsive. She is still under the heat lamp and heated blankets, and her heart rate is high, in the 130s, with elevated respirations in the 30s. Morning meds partially clogged her J-tube, but it's not a total blockage like yesterday. We're using more Coke to try to clear it.
Annie is tolerating quarter-strength formula fantastically through her g-tube at a full rate of 60cc/hr. I think the plan today is to get her to 60% strength formula at a rate
of 60cc/hr. That strength and rate is comparable to her at-home diet, so once she reaches that, she will have met her dietary and fluid intake goals!
We are very encouraged by Annie's WBC dropping so much in the last 24 hours. That is a huge relief, but we are not out of the woods yet. We are so grateful for everyone who continues to pray for Annie and our family.
Tuesday, September 10, 2019
Monday, September 9, 2019
September 9th Update
It was another exciting day at the hospital. A nurse accidentally clogged Annie's J-tube with her morning meds. Since the J-tube is threaded down through Annie's intestines about a foot, we can't just take it out to clear the blockage like we would a G-tube. So we let it sit for a couple hours to see if it might dissolve over some time, but didn't have any luck with that. A nurse suggested trying Coke in her line to break up the clog, so over about two hours we kept her line pressurized with Coke, adding more every 10-15 minutes. Thankfully, after about 2 hours of that, the blockage cleared! Whew! Who knew the power of Coke!
While we were waiting for the Coke to work, we needed to still get Annie's meds in her somehow, so we decided to use the syringe pump to slowly infuse her morning meds through her G-tube. Since she hasn't had anything in her stomach for two weeks, we decided to go really slowly. We thought she was tolerating it great, until I discovered that the nurse connected the J-tube extension set into the G-tube port, which isn't compatible, so the fluid just leaked all over and Annie's tummy was covered in yucky meds running down her waist. So no meds got in her stomach. It was a frustrating morning to say the least. We finally just gave Annie her seizure medication and didn't bother with re-dosing the rest.
Because Annie still needed fluids and we didn't know if we'd ever be able to unclog the J-tube, we decided to try some pedialyte through her G-tube into her stomach. She was doing well with it, and we want her to ultimately transition to the G-tube anyway, so even after we got the J-tube unclogged, we decided to keep going with the G-tube pedialyte since Annie was tolerating it well. Tonight she has worked up to 60cc/hr of pedialyte through the G-tube! So overnight tonight or maybe tomorrow, we'll move to quarter-strength formula through the G-tube and just use the J-tube for meds right now. So that's great news and gets Annie just that much closer to being able to going home.
The bad news is that Annie's white blood count went up yet again today to 32,000--the highest it's been during this hospitalization. It continues to increase each day by about 4,000-5,000. Her CRP also went up quite a bit, which is an indicator of inflammation. So that is concerning as well. We suspect that Annie might possibly have an infection somewhere that her bactrim has been masking and preventing it from really flaring up but hasn't been able to treat. Annie had her last dose of bactrim today for her UTI, so only time will tell if there is another infection somewhere.
The Hematology/Oncology team believes that her high WBC might be due to a new medication we started Annie on for ulcerative colitis last week since her regular UC med can't go through her J-tube. So we have decided to stop that medication to see if it may be the culprit. So hopefully tomorrow or the next day we'll start seeing her WBC come down a little. If her WBC and CRP continue to trend upwards, they will do more imaging of Annie's spine to see if her spinal rods may be infected.
The next few days will be really telling, hopefully, now that Annie is off the new UC med and the bactrim. So we're praying that Annie's WBC and CRP come down instead of a new infection popping up.
Annie had a happy day today and was alert and awake. She ended up sleeping yesterday for 6 hours straight without stirring, and then had a bad seizure requiring Diastat. It was probably because we tried to wake her up. So it was great to see her happy and alert today after a super sleepy day yesterday that had us concerned. We're hoping for at least some answers this week, and hopefully some good progress too!
While we were waiting for the Coke to work, we needed to still get Annie's meds in her somehow, so we decided to use the syringe pump to slowly infuse her morning meds through her G-tube. Since she hasn't had anything in her stomach for two weeks, we decided to go really slowly. We thought she was tolerating it great, until I discovered that the nurse connected the J-tube extension set into the G-tube port, which isn't compatible, so the fluid just leaked all over and Annie's tummy was covered in yucky meds running down her waist. So no meds got in her stomach. It was a frustrating morning to say the least. We finally just gave Annie her seizure medication and didn't bother with re-dosing the rest.
Because Annie still needed fluids and we didn't know if we'd ever be able to unclog the J-tube, we decided to try some pedialyte through her G-tube into her stomach. She was doing well with it, and we want her to ultimately transition to the G-tube anyway, so even after we got the J-tube unclogged, we decided to keep going with the G-tube pedialyte since Annie was tolerating it well. Tonight she has worked up to 60cc/hr of pedialyte through the G-tube! So overnight tonight or maybe tomorrow, we'll move to quarter-strength formula through the G-tube and just use the J-tube for meds right now. So that's great news and gets Annie just that much closer to being able to going home.
The bad news is that Annie's white blood count went up yet again today to 32,000--the highest it's been during this hospitalization. It continues to increase each day by about 4,000-5,000. Her CRP also went up quite a bit, which is an indicator of inflammation. So that is concerning as well. We suspect that Annie might possibly have an infection somewhere that her bactrim has been masking and preventing it from really flaring up but hasn't been able to treat. Annie had her last dose of bactrim today for her UTI, so only time will tell if there is another infection somewhere.
The Hematology/Oncology team believes that her high WBC might be due to a new medication we started Annie on for ulcerative colitis last week since her regular UC med can't go through her J-tube. So we have decided to stop that medication to see if it may be the culprit. So hopefully tomorrow or the next day we'll start seeing her WBC come down a little. If her WBC and CRP continue to trend upwards, they will do more imaging of Annie's spine to see if her spinal rods may be infected.
The next few days will be really telling, hopefully, now that Annie is off the new UC med and the bactrim. So we're praying that Annie's WBC and CRP come down instead of a new infection popping up.
Annie had a happy day today and was alert and awake. She ended up sleeping yesterday for 6 hours straight without stirring, and then had a bad seizure requiring Diastat. It was probably because we tried to wake her up. So it was great to see her happy and alert today after a super sleepy day yesterday that had us concerned. We're hoping for at least some answers this week, and hopefully some good progress too!
Sunday, September 8, 2019
September 8th Update
Last night was a little rough. Annie started having some pain but we found that tylenol and a movie helped. The problem with that was that Annie was wide awake the rest of the night. She was generally happy, and just making her talking sounds through the night. She had a bit of a cough as well that kept both of us up, and she got fussy a couple times requiring some position changes in the night as well.
So at 10:45 this morning Annie finally fell asleep and has been sleeping for more than 4 1/2 hours! At 3:15 now, she's still sound asleep! While she's been snoozing, the Hemotology/Oncology doctors came in to visit. They had thoroughly analyzed her lab values as well as her blood samples under the microscope to figure out what might be going on.
They had a ton to say about what each blood component level meant. But they basically agreed with the infectious disease team--that Annie's values don't indicate that there is any infectious disease process going on. They said her increase in white blood cells (which went up again today to 28,000!) is most likely due to a new medication we started Annie on or possibly just the stress she's had to her body over the past two weeks and being on TPN. They said there's also a chance that she's just picked up some kind of virus, although she shows no other symptoms.
Hematology agreed that the best thing would be to get Annie on her regular feeds and get her home and see if her WBC improves. If it continues to increase into the 50, 60 or 70 thousands, they would want to see her and figure out other possible problems, possibly related to her bone marrow. There is also a chance that Annie has something wrong with her spleen, which would affect her blood counts. The CT scan showed her spleen was decreased in size from previous scans, but it's hard to know because her previous scans were done when Annie had terrible infections, meaning her spleen may have just been enlarged at those times and now it's just back to its normal size. So they will continue to monitor her labs.
Annie started on half-strength formula today at 60cc/hr through her J-tube. I've been running the numbers on what they want her to tolerate before going home, (full-strength at 60cc/hr) but that actually puts her over the daily amount that she would normally get at home. If we convert her typical feedings into a true continuous 24 hr feed, it equates only to 3/4-strength formula running at 53cc/hr. So maybe Annie is closer to her home feeds than we thought! She's been tolerating feeds well so far, so we continue to pray that she'll keep doing well and get the green light to go home in a few days.
We'll still have to monitor her closely at home because of her lab values being so concerning, but we should be able to see doctors in their clinics for that, and don't need to be inpatient, unless something bigger is finally found to be the problem. Today is day 11 of the IV bactrim which they think may be a sufficiently long course, but the hospitalist will consult with the ID team to get their opinion before stopping it. Annie's GI tract is still not completely up and running, so that's another thing we're watching.
So at 10:45 this morning Annie finally fell asleep and has been sleeping for more than 4 1/2 hours! At 3:15 now, she's still sound asleep! While she's been snoozing, the Hemotology/Oncology doctors came in to visit. They had thoroughly analyzed her lab values as well as her blood samples under the microscope to figure out what might be going on.
They had a ton to say about what each blood component level meant. But they basically agreed with the infectious disease team--that Annie's values don't indicate that there is any infectious disease process going on. They said her increase in white blood cells (which went up again today to 28,000!) is most likely due to a new medication we started Annie on or possibly just the stress she's had to her body over the past two weeks and being on TPN. They said there's also a chance that she's just picked up some kind of virus, although she shows no other symptoms.
Hematology agreed that the best thing would be to get Annie on her regular feeds and get her home and see if her WBC improves. If it continues to increase into the 50, 60 or 70 thousands, they would want to see her and figure out other possible problems, possibly related to her bone marrow. There is also a chance that Annie has something wrong with her spleen, which would affect her blood counts. The CT scan showed her spleen was decreased in size from previous scans, but it's hard to know because her previous scans were done when Annie had terrible infections, meaning her spleen may have just been enlarged at those times and now it's just back to its normal size. So they will continue to monitor her labs.
Annie started on half-strength formula today at 60cc/hr through her J-tube. I've been running the numbers on what they want her to tolerate before going home, (full-strength at 60cc/hr) but that actually puts her over the daily amount that she would normally get at home. If we convert her typical feedings into a true continuous 24 hr feed, it equates only to 3/4-strength formula running at 53cc/hr. So maybe Annie is closer to her home feeds than we thought! She's been tolerating feeds well so far, so we continue to pray that she'll keep doing well and get the green light to go home in a few days.
We'll still have to monitor her closely at home because of her lab values being so concerning, but we should be able to see doctors in their clinics for that, and don't need to be inpatient, unless something bigger is finally found to be the problem. Today is day 11 of the IV bactrim which they think may be a sufficiently long course, but the hospitalist will consult with the ID team to get their opinion before stopping it. Annie's GI tract is still not completely up and running, so that's another thing we're watching.
Saturday, September 7, 2019
September 7th Update
Annie's white blood count has risen again, now to 25,000! That's an increase of about 5,000 in just 24 hours. Her last spike was only 3,000 over 48 hours. Her hemoglobin has dropped again but not quite as significantly. They checked her urine again and everything looked great there, so that infection has cleared up nicely. So everyone is still stumped as to what could be causing such a high white blood count. Annie's heart rate has been coming down and is lower than it used to be, but still not back to normal.
With the dramatic increase in white blood cells, and no clues as to the cause, the infectious disease team was brought in today. They said that based on the different types of white blood cells that are all elevated, they don't suspect that she has any kind of infectious disease process going on. And based on past lab results, they don't believe she even had pyelonephritis--which is in line with what the urologist and radiologist said as well.
The ID team believes that Annie needs to get back onto her regular feeds and once her GI tract is working normally again, they suspect her white blood count to return to normal. They weren't sure how to explain her sudden and dramatic drop in hemoglobin, so they are referring us to the Hematology/Oncology team, which will hopefully be in to see us tomorrow and get us some answers.
So for now, we are continuing to wean Annie onto her feedings. She is at the full required rate of 60cc/hr, but is only on quarter-strength formula. Tomorrow we will transition to half-strength formula, and maybe by Monday, try full-strength if all goes well between now and then. Everything is still running through the J-tube, so then once Annie is up to 60cc/hr of full-strength formula, we can work to transition back to the G-tube depending on her tolerance. She is still on TPN through her PICC line at a decreased rate, but that will be discontinued tonight. We'll keep the PICC line in place though, until Annie is back to her regular feeds, just in case she takes a step backwards and ends up needing it again.
Tonight we all joined Annie in the hospital for a pizza dinner together--the first meal we've had together as a family in two weeks! Lexie played some video games for Annie and we all had a pretty good time together. Annie has been in good spirits with no more bouts of pain--They suspect her pain from the last couple days has been cramping or gas from her GI tract getting up and running again. Annie had a good night last night and has been pretty happy today watching some fun movies.
With the dramatic increase in white blood cells, and no clues as to the cause, the infectious disease team was brought in today. They said that based on the different types of white blood cells that are all elevated, they don't suspect that she has any kind of infectious disease process going on. And based on past lab results, they don't believe she even had pyelonephritis--which is in line with what the urologist and radiologist said as well.
The ID team believes that Annie needs to get back onto her regular feeds and once her GI tract is working normally again, they suspect her white blood count to return to normal. They weren't sure how to explain her sudden and dramatic drop in hemoglobin, so they are referring us to the Hematology/Oncology team, which will hopefully be in to see us tomorrow and get us some answers.
So for now, we are continuing to wean Annie onto her feedings. She is at the full required rate of 60cc/hr, but is only on quarter-strength formula. Tomorrow we will transition to half-strength formula, and maybe by Monday, try full-strength if all goes well between now and then. Everything is still running through the J-tube, so then once Annie is up to 60cc/hr of full-strength formula, we can work to transition back to the G-tube depending on her tolerance. She is still on TPN through her PICC line at a decreased rate, but that will be discontinued tonight. We'll keep the PICC line in place though, until Annie is back to her regular feeds, just in case she takes a step backwards and ends up needing it again.
Tonight we all joined Annie in the hospital for a pizza dinner together--the first meal we've had together as a family in two weeks! Lexie played some video games for Annie and we all had a pretty good time together. Annie has been in good spirits with no more bouts of pain--They suspect her pain from the last couple days has been cramping or gas from her GI tract getting up and running again. Annie had a good night last night and has been pretty happy today watching some fun movies.
Friday, September 6, 2019
Evening Update, September 6th
Annie had an abdominal CT scan today. We were sure that they would find something wrong with her appendix or an abscess somewhere or some other explanation for the increase of white blood cells. We even thought she must have some kind of internal bleeding due to her hemoglobin dropping so suddenly. However, yet again, no issues were found. We are stunned and baffled.
We spoke with our GI doctor about the results and decided on a new plan. Our goal now is to focus on getting Annie back onto her regular feedings so she can just come home. She's still receiving TPN nutrition through her PICC line which isn't really great for her, and the PICC line can become a source of infection after a while. Her PICC line is starting to fail again anyway and we don't want to put her through another surgery to replace it. So our goal is to stop the TPN, get the PICC line out, and get Annie home.
In preparation for her CT scan today, Annie had to get 480cc of liquid contrast through her J-tube in two hours! I was super nervous to push that much fluid--a rate of 240cc/hr--when all she's worked up to so far is 25cc/hr of pedialyte! But she did pretty well, only vomiting a small amount twice. So we have high hopes that we can start pushing her feeds and getting her transitioned to her formula by the end of next week. Tonight she is still on quarter-strength formula at a rate of 30cc/hr. Tomorrow we hope to get her to 60cc/hr and possibly even introduce half-strength formula. We'll continue to increase her rate and formula concentration until she is back to her regular feeds through the J-tube and then we will work to transition back to her G-tube.
Once Annie is tolerating her normal feeds, we'll remove the PICC line and get her home. Once she's home, we feel like she will be able to recover a little better. She has experienced a lot these past two weeks with going under general anesthesia twice, having multiple scopes, radiology testing, lab draws, straight caths, etc. That's a lot for her body to experience, so we hope that once we get her home, her body will calm down and her concerning lab values will improve, because we can find no other clinical explanation for those values.
Once we are home, we will follow up with doctors in their clinics to get blood drawn and check lab values, monitor pain, seizures, etc. We really don't know what direction Annie will go once she's home, but there are just no more tests to run at the hospital and no one knows what to do anymore. So we've decided that getting her home might just be the best medicine that she needs.
This has been one of the most exhausting hospitalizations we have ever had, physically and emotionally. Today, Annie was up in her chair so Justin just couldn't help borrowing her bed for a while. We are definitely looking forward to all being under one roof again.
We spoke with our GI doctor about the results and decided on a new plan. Our goal now is to focus on getting Annie back onto her regular feedings so she can just come home. She's still receiving TPN nutrition through her PICC line which isn't really great for her, and the PICC line can become a source of infection after a while. Her PICC line is starting to fail again anyway and we don't want to put her through another surgery to replace it. So our goal is to stop the TPN, get the PICC line out, and get Annie home.
In preparation for her CT scan today, Annie had to get 480cc of liquid contrast through her J-tube in two hours! I was super nervous to push that much fluid--a rate of 240cc/hr--when all she's worked up to so far is 25cc/hr of pedialyte! But she did pretty well, only vomiting a small amount twice. So we have high hopes that we can start pushing her feeds and getting her transitioned to her formula by the end of next week. Tonight she is still on quarter-strength formula at a rate of 30cc/hr. Tomorrow we hope to get her to 60cc/hr and possibly even introduce half-strength formula. We'll continue to increase her rate and formula concentration until she is back to her regular feeds through the J-tube and then we will work to transition back to her G-tube.
Once Annie is tolerating her normal feeds, we'll remove the PICC line and get her home. Once she's home, we feel like she will be able to recover a little better. She has experienced a lot these past two weeks with going under general anesthesia twice, having multiple scopes, radiology testing, lab draws, straight caths, etc. That's a lot for her body to experience, so we hope that once we get her home, her body will calm down and her concerning lab values will improve, because we can find no other clinical explanation for those values.
Once we are home, we will follow up with doctors in their clinics to get blood drawn and check lab values, monitor pain, seizures, etc. We really don't know what direction Annie will go once she's home, but there are just no more tests to run at the hospital and no one knows what to do anymore. So we've decided that getting her home might just be the best medicine that she needs.
This has been one of the most exhausting hospitalizations we have ever had, physically and emotionally. Today, Annie was up in her chair so Justin just couldn't help borrowing her bed for a while. We are definitely looking forward to all being under one roof again.
Morning Update, September 6th
It's been an incredibly frustrating morning. Last night was really rough. Annie was screaming and writhing in pain for two hours. She received tylenol but I don't think it did anything. She eventually threw up and fell asleep. She did the same thing the night before. Annie woke up again at 4:30 this morning with agitation. It didn't escalate into quite what is was last night, but she's clearly having some intense pain. We just don't know the cause.
We've suspected all along that Annie has something else going on other than the UTI and pyelonephritis. Even her urologist wrote in his report that her symptoms are atypical for pyelonephritis, and the radiologist told me her imaging shows only a slight possible pyelonephritis. And today Annie's lab values are further indicating that. Her white blood count has gone up yet again, to over 20,000, and her hematocrit and hemoglobin have dropped significantly, indicating that she has a possible bleed somewhere. Her heart rate is also still very elevated, further indicating that there is a problem her body is reacting to. She is on day 9 of IV antibiotics for the pyelonephritis, so she should not be having any symptoms from that anymore.We know the bacteria from the urine culture are susceptible to the antibiotic she is on, so that should be resolved.
We are getting a bit frustrated to say the least, but hopefully today we can get some more testing done and finally get a real diagnosis. This has been the most difficult hospital stay in regards to advocating for our child. Continued prayers are very much appreciated! I hope to be able to finally share a definitive diagnosis with you later today!
On a more positive note, the adjustment to Annie's PICC line yesterday seems to have been successful! We were able to draw labs beautifully this morning! What a relief!
We've suspected all along that Annie has something else going on other than the UTI and pyelonephritis. Even her urologist wrote in his report that her symptoms are atypical for pyelonephritis, and the radiologist told me her imaging shows only a slight possible pyelonephritis. And today Annie's lab values are further indicating that. Her white blood count has gone up yet again, to over 20,000, and her hematocrit and hemoglobin have dropped significantly, indicating that she has a possible bleed somewhere. Her heart rate is also still very elevated, further indicating that there is a problem her body is reacting to. She is on day 9 of IV antibiotics for the pyelonephritis, so she should not be having any symptoms from that anymore.We know the bacteria from the urine culture are susceptible to the antibiotic she is on, so that should be resolved.
We are getting a bit frustrated to say the least, but hopefully today we can get some more testing done and finally get a real diagnosis. This has been the most difficult hospital stay in regards to advocating for our child. Continued prayers are very much appreciated! I hope to be able to finally share a definitive diagnosis with you later today!
On a more positive note, the adjustment to Annie's PICC line yesterday seems to have been successful! We were able to draw labs beautifully this morning! What a relief!
Thursday, September 5, 2019
September 5th Update
Today was a pretty good day. Annie's PICC line is failing to draw blood again, so our goal today was to get it working. Annie had a full chest x-ray so the vascular access team could see where the end of the line was in her body. From that, they determined how far they needed to adjust it. They ended up pulling it out 3cm, so the end of it is now near her arm pit inside her body. Once the line was secured in place, we tested it and it drew blood beautifully!
However, in order to prevent the PICC from clotting off again, Annie has to stop her TPN. The TPN she's been on the last week or so has contained all her complete nutrients and calories that she needs, going directly into her blood. However, since her line is clotting from it, they are switching her TPN to a less complete nutritional formulation that has a lower risk of clotting her line.
Because Annie's nutritional needs can no longer be met through IV access, we have had to start trying to feed her formula through her J tube a little sooner than we were planning. So today Annie started getting quarter-strength formula through the J tube directly into her intestines. We started really slowly at 10cc/hr but tonight she is up to 20cc/hr and doing really well with it. We only ever ran the pedialyte at 25cc/hr, so we'll soon be testing new limits as we increase her formula rate. Once we see she can tolerate a larger volume, we'll begin to increase the concentration of her formula until, hopefully, she can get back to her normal feeds of full-strength formula at a rate of 85cc/hr. Even if that's just through the J tube, she can go home on that, and then once home, we can try to transition her back to the G tube.
Because they had to take a chest x-ray to locate the tip of her PICC line, they were also able to look at Annie's lungs. We've been concerned about her aspiration on Monday night and feared that pneumonia might settle in, especially with her breathing troubles that developed afterwards. But thankfully, Annie's lungs look clear with no signs of pneumonia!
Today is day 8 of the IV bactrim for her pyelonephritis (day 11 in the hospital). They haven't decided yet if that will need to be a 10 day course or 14 day course. They will do another urine culture at day 10 to check and possibly extend to 14 days just to be safe.
Annie has been up in her wheelchair for longer periods of time yesterday and today and seems to enjoy it. I think she's really wanting to get back to school and experience her senior year! We're not out of the woods yet, but I'd say Annie has finally turned a corner!
We've had fun watching the construction workers build the outer walls on the new hospital extension outside our window today. But all their progress more clearly marks how long our stay here is becoming! Today Annie enjoyed watching Lexie play more video games and a visit from Grandma and Grandpa. We're so grateful for the extra help!
However, in order to prevent the PICC from clotting off again, Annie has to stop her TPN. The TPN she's been on the last week or so has contained all her complete nutrients and calories that she needs, going directly into her blood. However, since her line is clotting from it, they are switching her TPN to a less complete nutritional formulation that has a lower risk of clotting her line.
Because Annie's nutritional needs can no longer be met through IV access, we have had to start trying to feed her formula through her J tube a little sooner than we were planning. So today Annie started getting quarter-strength formula through the J tube directly into her intestines. We started really slowly at 10cc/hr but tonight she is up to 20cc/hr and doing really well with it. We only ever ran the pedialyte at 25cc/hr, so we'll soon be testing new limits as we increase her formula rate. Once we see she can tolerate a larger volume, we'll begin to increase the concentration of her formula until, hopefully, she can get back to her normal feeds of full-strength formula at a rate of 85cc/hr. Even if that's just through the J tube, she can go home on that, and then once home, we can try to transition her back to the G tube.
Because they had to take a chest x-ray to locate the tip of her PICC line, they were also able to look at Annie's lungs. We've been concerned about her aspiration on Monday night and feared that pneumonia might settle in, especially with her breathing troubles that developed afterwards. But thankfully, Annie's lungs look clear with no signs of pneumonia!
Today is day 8 of the IV bactrim for her pyelonephritis (day 11 in the hospital). They haven't decided yet if that will need to be a 10 day course or 14 day course. They will do another urine culture at day 10 to check and possibly extend to 14 days just to be safe.
Annie has been up in her wheelchair for longer periods of time yesterday and today and seems to enjoy it. I think she's really wanting to get back to school and experience her senior year! We're not out of the woods yet, but I'd say Annie has finally turned a corner!
We've had fun watching the construction workers build the outer walls on the new hospital extension outside our window today. But all their progress more clearly marks how long our stay here is becoming! Today Annie enjoyed watching Lexie play more video games and a visit from Grandma and Grandpa. We're so grateful for the extra help!
Wednesday, September 4, 2019
September 4th Update: A Better Day
Annie has had a much better day today. She is not struggling so much to breathe and has actually been off of oxygen all day! Her heart rate is still really high, around 130, reaching the mid 140s at times.
Annie's PICC line clotted so we didn't get her daily lab results back before the rounding doctors came today. But I've pulled up the results and things look pretty good except for a slight increase in her white blood count. I suspect that indicates that she probably did aspirate the other day and could possibly have pneumonia settling in. She spent most of the day yesterday bringing up a lot of phlegm and seems to be doing better in that regard today. Her temperature went up to 100.2 once today, but now is back down closer to normal. So we're not quite sure if a true pneumonia is going to settle in or not. Only time will tell.
We increased Annie's pedialyte rate to 25cc/hr, with a goal of 40-50cc/hr over the next few days. Annie has vomited just twice in the last 24 hours, which is more than the day before. Both times were after she received her new medication to keep her ulcerative colitis in remission. It is known to cause stomach upset, so we'll have to watch and see if that could be the culprit or if it's just coincidental.
Otherwise it's been a pretty quiet day. We tried out a "shower cap" hair-washing. It worked ok, but was really no match for Annie's thick, curly hair. But now she's looking a bit nicer.
Annie's PICC line clotted so we didn't get her daily lab results back before the rounding doctors came today. But I've pulled up the results and things look pretty good except for a slight increase in her white blood count. I suspect that indicates that she probably did aspirate the other day and could possibly have pneumonia settling in. She spent most of the day yesterday bringing up a lot of phlegm and seems to be doing better in that regard today. Her temperature went up to 100.2 once today, but now is back down closer to normal. So we're not quite sure if a true pneumonia is going to settle in or not. Only time will tell.
We increased Annie's pedialyte rate to 25cc/hr, with a goal of 40-50cc/hr over the next few days. Annie has vomited just twice in the last 24 hours, which is more than the day before. Both times were after she received her new medication to keep her ulcerative colitis in remission. It is known to cause stomach upset, so we'll have to watch and see if that could be the culprit or if it's just coincidental.
Otherwise it's been a pretty quiet day. We tried out a "shower cap" hair-washing. It worked ok, but was really no match for Annie's thick, curly hair. But now she's looking a bit nicer.
Tuesday, September 3, 2019
Tuesday Update: A Step Backwards
Annie had a rough night last night. Some of her evening meds were given through her G-tube port. Because she hasn't had anything in her stomach for such a long time, she didn't tolerate the meds very well. She vomited all of them up and we suspect that she has aspirated. Annie's oxygen saturations wouldn't come out of the 80s and her breathing was very labored. She received some deep suctioning from the respiratory therapist, but that didn't seem to help her O2 levels. So Annie was started on oxygen last night and has been on it most of the day. Her breathing has been labored with a fair amount of chest retraction with each breath--working so hard to breathe. Along with that, her heart rate is pretty high--around 130 or higher even when she's asleep.
Annie had a chest x-ray at noon today and it didn't show any signs of pneumonia, but we will continue to monitor her for pneumonia symptoms which could still show up in a day or two. We'll just have to wait and repeat the x-ray once more has developed.
In other news, they are increasing the rate of her pedialyte through her J-tube just a little. If tolerated well, in a few days we'll start her on quarter-strength formula at a super slow rate through the J-tube and slowly work towards her tolerating her normal feeds through the J-tube. That is her feeding requirement in order to be discharged. Then once we're home and doing well, it will be up to us to try to transition her back to just her G-tube again. We are able to give all her normal daily meds through her J-tube except for the one that keeps her ulcerative colitis in remission. And it can't go through the new G-tube port either. The GI has switched her UC med to a liquid one that can go through the J-tube, but it's not a great long-term option, so we really hope to get Annie well and back to her regular G-tube.
Annie is still receiving her bactrim for the pyelonephritis via IV. Her lab values are still not quite right, so they are still making adjustments to her TPN. We'll check her white blood count again tomorrow too. If it's gone up, that would be another indicator of pneumonia.
This has been a rather discouraging day, especially since Annie seemed to be doing so well yesterday. This afternoon she was up in her wheelchair and was able to come off oxygen for a little while, but this evening now she's back to requiring it. Her heart rate got up to the 150s but now seems to be in the 120s again. Still not great, but better than it was. We really appreciate continued prayers for Annie.
Today we have a nurse with OCD like me! She got Annie a new IV pole that keeps all her pumps nice and tidy. It's the little things...
Don't let the smile fool you... I took this picture while Annie was having a gelastic seizure last night--also known as laughing seizures. They're fun to watch until you realize they are actually seizures, but we'll take our smiles however we can get them!
It's been interesting to watch the hospital construction right outside our window, and watch this guy work today. I'm glad I don't have his job!
Annie had a chest x-ray at noon today and it didn't show any signs of pneumonia, but we will continue to monitor her for pneumonia symptoms which could still show up in a day or two. We'll just have to wait and repeat the x-ray once more has developed.
In other news, they are increasing the rate of her pedialyte through her J-tube just a little. If tolerated well, in a few days we'll start her on quarter-strength formula at a super slow rate through the J-tube and slowly work towards her tolerating her normal feeds through the J-tube. That is her feeding requirement in order to be discharged. Then once we're home and doing well, it will be up to us to try to transition her back to just her G-tube again. We are able to give all her normal daily meds through her J-tube except for the one that keeps her ulcerative colitis in remission. And it can't go through the new G-tube port either. The GI has switched her UC med to a liquid one that can go through the J-tube, but it's not a great long-term option, so we really hope to get Annie well and back to her regular G-tube.
Annie is still receiving her bactrim for the pyelonephritis via IV. Her lab values are still not quite right, so they are still making adjustments to her TPN. We'll check her white blood count again tomorrow too. If it's gone up, that would be another indicator of pneumonia.
This has been a rather discouraging day, especially since Annie seemed to be doing so well yesterday. This afternoon she was up in her wheelchair and was able to come off oxygen for a little while, but this evening now she's back to requiring it. Her heart rate got up to the 150s but now seems to be in the 120s again. Still not great, but better than it was. We really appreciate continued prayers for Annie.
Today we have a nurse with OCD like me! She got Annie a new IV pole that keeps all her pumps nice and tidy. It's the little things...
Don't let the smile fool you... I took this picture while Annie was having a gelastic seizure last night--also known as laughing seizures. They're fun to watch until you realize they are actually seizures, but we'll take our smiles however we can get them!
It's been interesting to watch the hospital construction right outside our window, and watch this guy work today. I'm glad I don't have his job!
Monday, September 2, 2019
Monday Update: A Calmer Day!
Today has been pretty quiet! Annie had a pretty uneventful night. Her oxygen saturations dropped a couple times into the 50s, so she got oxygen for a short while. But she is doing pretty great today. Annie's white blood count has come down to 17, so we're finally starting to move in the right direction.
Annie's seizures have been less frequent, which is great. But her electrolytes and other lab values are not where they should be quite yet, so she'll get her TPN adjusted again tonight. We hope that her labs will improve once she's able to get back on her regular formula feedings and supplements. This morning we resumed most of her regular daily meds, giving them through her J-tube, so hopefully some of those supplements will help some of her lab values improve.
Annie is getting pedialyte now at 10cc/hr through the J-tube and seems to be tolerating it well. That rate will gradually be increased and then we'll need to decide how to progress. We might try formula through the J-tube slowly first, or we'll start trying to give her pedialyte through the G-tube at a really slow rate and work up eventually to formula. We really hope to have her not dependent on the J-tube, but it might take some time to make that transition.
This is how Annie spent most of her Labor Day today.... Lexie is so kind to keep her entertained!
It's amazing what a good hair-brushing can do!
Annie's seizures have been less frequent, which is great. But her electrolytes and other lab values are not where they should be quite yet, so she'll get her TPN adjusted again tonight. We hope that her labs will improve once she's able to get back on her regular formula feedings and supplements. This morning we resumed most of her regular daily meds, giving them through her J-tube, so hopefully some of those supplements will help some of her lab values improve.
Annie is getting pedialyte now at 10cc/hr through the J-tube and seems to be tolerating it well. That rate will gradually be increased and then we'll need to decide how to progress. We might try formula through the J-tube slowly first, or we'll start trying to give her pedialyte through the G-tube at a really slow rate and work up eventually to formula. We really hope to have her not dependent on the J-tube, but it might take some time to make that transition.
This is how Annie spent most of her Labor Day today.... Lexie is so kind to keep her entertained!
It's amazing what a good hair-brushing can do!
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