The twins are playing perfectly with our new in home helper and Henley is taking a nap. I started cleaning the entry way and mudroom and instead decided to take a rest, drink a cup of coffee and engage in some therapeutic writing instead. It might sound silly, but all these hours behind the wheel leave me lots of time to think, but not much time to unload those thoughts. So a lot of the time I just talk to God and ask for guidance and clarity, healing and rest! But sometimes I get 5 minutes to sit down...
Henley and I came home Saturday night, after being gone for a week again. She is not 100% but the worst of the RSV seems to be behind us. In addition to that her tube site FINALLY looks really good and that gives me more comfort being back home as well.
I came across this really need video that explains the function of neutrophils:
https://www.youtube.com/watch?v=FZxf1QDcEO0
We continue to boost Henley's neutrophils to an acceptable range with the GCSF shot she gets every other day. Then we do blood work twice a week to ensure the shot is working like it should. Without the shot she has ZERO.
Henley did have a shot a little over a month ago called Synagis. We credit another SDS family for sharing their story about fighting RSV for making us aware of this shot. Although Henley did still test positive for RSV, we believe that it probably lessened the symptoms. Being in Fargo and so close to the hospital (literally less than 5 minutes) made us so much more comfortable. She was also evaluated everyday from the day she first showed symptoms. There's no doubt that all the prayers you sent up for her helped keep her out of the hospital and gave her little body strength to fight through this awful illness. Now I'm just praying that her healing continues. She's still coughing and has a runny nose, but she's doing so much better.
We have learned so much about how his awful flu and RSV season is affecting so many families. I'm begging you, if you are sick, if you are coughing, if you are sneezing, if you have a tickle in your throat - please take measures to protect others around you. Use antibacterial gel, wash wash wash your hands. Wipe down surfaces. I think the flu and RSV are so strong this season that this is example of when sharing germs or thinking germs help build a healthy immune system is NOT the case. Although Henley did not end up being in the hospital inpatient - her and I did have to spend an entire week away from home again. I'm so happy to be home again with the twins and Kyle.
Monday, January 22, 2018
Two States in One Day
January 18
It was a busy day and a challenge to get out of the house on time. First stop was the new Sanford Hospital in Fargo to see a pediatric surgeon who looked at the gtube site. They agreed that the small boil that had formed above her tube likely needed to be drained. So some numbing cream and a scalpel later we had all sort of stuff coming out, including what appeared to be a couple stitches that had not dissolved as planned. They did collect some of the drainage to culture, so hoping to hear back on that soon.
From there I ran through (well actually I DROVE through) a drive through and hit the interstate to make it to Sioux Falls, SD in time for an afternoon appointment with Henley's GI dr. As much as an inconvenience as it is to travel that far, we really love Dr. Doubledee. We made some changes to her nutritional plan and hope that over the next 6 weeks they pay off. We'll stay in touch with him via email until then. He goes to a remote clinic in Aberdeen once a month, so we will save some miles and see him there the first week of March.
The most irritating part of my day was dealing with Sanford (specifically a nurse manager named Kristi) and trying to arrange for Henley to receive a shot she needs TOMORROW in Fargo instead of Dickinson. It took about 3 hours, multiple phone calls, then working with our insurance and our pediatrician before she finally agreed to do the shot. It was completely ridiculous. Henley is blessed to have an pediatrician that has made himself available to her whenever needed because he recognizes the complicated life we have signed up for. She's also blessed to have an advocate assigned to her at Blue Cross Blue Shield. Both hit the phone hard advocating to get this shot done. What's incredibly sad is that not every child is that fortunate and for truly NO LEGITIMATE reason Kristi was being difficult. So disappointing.
It was a busy day and a challenge to get out of the house on time. First stop was the new Sanford Hospital in Fargo to see a pediatric surgeon who looked at the gtube site. They agreed that the small boil that had formed above her tube likely needed to be drained. So some numbing cream and a scalpel later we had all sort of stuff coming out, including what appeared to be a couple stitches that had not dissolved as planned. They did collect some of the drainage to culture, so hoping to hear back on that soon.
From there I ran through (well actually I DROVE through) a drive through and hit the interstate to make it to Sioux Falls, SD in time for an afternoon appointment with Henley's GI dr. As much as an inconvenience as it is to travel that far, we really love Dr. Doubledee. We made some changes to her nutritional plan and hope that over the next 6 weeks they pay off. We'll stay in touch with him via email until then. He goes to a remote clinic in Aberdeen once a month, so we will save some miles and see him there the first week of March.
The most irritating part of my day was dealing with Sanford (specifically a nurse manager named Kristi) and trying to arrange for Henley to receive a shot she needs TOMORROW in Fargo instead of Dickinson. It took about 3 hours, multiple phone calls, then working with our insurance and our pediatrician before she finally agreed to do the shot. It was completely ridiculous. Henley is blessed to have an pediatrician that has made himself available to her whenever needed because he recognizes the complicated life we have signed up for. She's also blessed to have an advocate assigned to her at Blue Cross Blue Shield. Both hit the phone hard advocating to get this shot done. What's incredibly sad is that not every child is that fortunate and for truly NO LEGITIMATE reason Kristi was being difficult. So disappointing.
Wednesday, January 17, 2018
RSV and G-tube Infection
Our tiny warrior continues to show her strength.
First, we've been fighting some sort of minor infection of her g-tube site. We did 10 days of antibiotics, but didn't see an improvement so then we did a culture Friday and have been waiting for results.
While waiting for results Henley started showing signs of getting sick on Sunday with RSV, which ended us in the ER at Sanford in Fargo. They confirmed she was positive for RSV and there was a lot of debate about hospitalizing her, but since she didn't actually need O2 at the time we decided to watch her carefully at "home." ("home" is my friend Tammy's house in Fargo).
Tuesday morning the results from the culture came back positive for some strange pathogen which has some antibiotic resistance, so we were scheduled to see an Pediatric Infectious Disease doctor today (Wednesday). A decision was made to start her on a new antibiotic but that doctor also though the site should be checked by a surgeon. Since the surgeon that did this surgery is in Minneapolis (and I wasn't a huge fan of his) we were able to schedule her to see a pediatric surgeon in Fargo tomorrow (Thursday) morning. As soon as I am done with that appointment I will head to Sioux Falls to see her Gastroenterologist and look at making some adjustments to her Creon medication. Creon is what helps her absorb her food and grow.
It's been such a whirlwind. I miss the twins. I miss Kyle and I miss home. There are some positives to being in Fargo though. Ranch Nanny (Katelynd) is here and has been a huge help. I was able to sneak out of the house for 30 mins and get my hair trimmed and even visited Target for the first time since August. What a treat! lol
Henley really is doing good today considering all the stuff she has going on. Her little body continues to exceed our expectations and I believe God is making her strong through this battle thanks to all the prayers coming from people like YOU! Thank you.
First, we've been fighting some sort of minor infection of her g-tube site. We did 10 days of antibiotics, but didn't see an improvement so then we did a culture Friday and have been waiting for results.
While waiting for results Henley started showing signs of getting sick on Sunday with RSV, which ended us in the ER at Sanford in Fargo. They confirmed she was positive for RSV and there was a lot of debate about hospitalizing her, but since she didn't actually need O2 at the time we decided to watch her carefully at "home." ("home" is my friend Tammy's house in Fargo).
Tuesday morning the results from the culture came back positive for some strange pathogen which has some antibiotic resistance, so we were scheduled to see an Pediatric Infectious Disease doctor today (Wednesday). A decision was made to start her on a new antibiotic but that doctor also though the site should be checked by a surgeon. Since the surgeon that did this surgery is in Minneapolis (and I wasn't a huge fan of his) we were able to schedule her to see a pediatric surgeon in Fargo tomorrow (Thursday) morning. As soon as I am done with that appointment I will head to Sioux Falls to see her Gastroenterologist and look at making some adjustments to her Creon medication. Creon is what helps her absorb her food and grow.
It's been such a whirlwind. I miss the twins. I miss Kyle and I miss home. There are some positives to being in Fargo though. Ranch Nanny (Katelynd) is here and has been a huge help. I was able to sneak out of the house for 30 mins and get my hair trimmed and even visited Target for the first time since August. What a treat! lol
Henley really is doing good today considering all the stuff she has going on. Her little body continues to exceed our expectations and I believe God is making her strong through this battle thanks to all the prayers coming from people like YOU! Thank you.
Thursday, January 11, 2018
So Behind...
I am SO behind in properly updating this blog. I've managed to keep some posts going on her Facebook page but neglected our friends and family that don't use social media and instead depend on this blog of a phone call to get updates. I'll try to summarize and bring you up to speed.
G-tube and bone marrow biopsy took place on December 29. It was a long exhausting day as well as stay in the hospital. It was far more difficult that I anticipated it to be. Selfishly I missed my best half, Kyle, and celebrated our anniversary and New Year's at the hospital without him while he was at home caring for the twins. Henley experienced more pain that I thought and it took nearly three days to get a smile from our sweet girl. She required a blood transfusion the day after surgery, as her hemoglobin dropped below acceptable range and she was symptomatically anemic as well. The drive home took two days and was uneventful until Bismarck. While filling gas, Henley filled her pants - to the point where we had to get a new car seat in order to safely finish the trip.
Next week we will travel to Sioux Falls to see her gastroenterologist and revise her nutrition plan.
Here's a recent post from our Facebook page that gives some information about the tube.
G-tube and bone marrow biopsy took place on December 29. It was a long exhausting day as well as stay in the hospital. It was far more difficult that I anticipated it to be. Selfishly I missed my best half, Kyle, and celebrated our anniversary and New Year's at the hospital without him while he was at home caring for the twins. Henley experienced more pain that I thought and it took nearly three days to get a smile from our sweet girl. She required a blood transfusion the day after surgery, as her hemoglobin dropped below acceptable range and she was symptomatically anemic as well. The drive home took two days and was uneventful until Bismarck. While filling gas, Henley filled her pants - to the point where we had to get a new car seat in order to safely finish the trip.
Next week we will travel to Sioux Falls to see her gastroenterologist and revise her nutrition plan.
Here's a recent post from our Facebook page that gives some information about the tube.
Henley got a MINI ONE button. This picture shows its placement. You can also see tape over her belly button. They went in through there, laparoscopically- pulled her stomach to her abdominal wall (put in a couple stitches to hold it in place), then placed the tube. I’ll try to post a link showing how the tube stays in place.
Eventually Kyle and I will replace the tube ourselves.
Eventually Kyle and I will replace the tube ourselves.
The role it plays.... right now Henley is by no means dependent on her tube. We feed her by mouth first and then “top her off” or Bolus feed her a little extra (literally a LITTLE extra- 1.3 ounces of 24 calorie fortified breastmilk) and we don’t do this every feeding. Our methods will be re-evaluated as we follow her growth. One thing I’ve learned with Henley is that she feeds less as her hemaglobin drops and chows down like crazy when it’s high after transfusion. So this tube can be a great asset when she’s feeling more worn down.
What I wish I had known months ago:
* i wish doctors would have reassured us that we would use this tube as a tool in Henley’s nutrition. NOT as her sole nutrition.
* we have visited with numerous doctors and one group of doctors strongly discouraged us from ever considering a gtube. This really caused us to fight against it- but during the weeks that passed Henley’s condition nutritionally changed significantly as she began burning through so many calories with her increased crawling, standing and other developmental milestones. Her brain kept developing but she stopped growing in length and in weight. I’ve been a little OCD and weighing at home everyday and quickly identified that something had changed.
* I wish a doctor would have taken the time to explain to us that Henley’s body has to work harder than others because her bone marrow doesn’t do what it’s supposed to. Then we give her gcsf to force it to work even harder than that and push out more cells. She often times breathes faster too and all of this means she uses MORE calories.
Maybe that’s something that you’re just supposed to know - but my brain is so full and constantly spinning, some simple things have to be very clearly communicated to me sometimes.
* i wish doctors would have reassured us that we would use this tube as a tool in Henley’s nutrition. NOT as her sole nutrition.
* we have visited with numerous doctors and one group of doctors strongly discouraged us from ever considering a gtube. This really caused us to fight against it- but during the weeks that passed Henley’s condition nutritionally changed significantly as she began burning through so many calories with her increased crawling, standing and other developmental milestones. Her brain kept developing but she stopped growing in length and in weight. I’ve been a little OCD and weighing at home everyday and quickly identified that something had changed.
* I wish a doctor would have taken the time to explain to us that Henley’s body has to work harder than others because her bone marrow doesn’t do what it’s supposed to. Then we give her gcsf to force it to work even harder than that and push out more cells. She often times breathes faster too and all of this means she uses MORE calories.
Maybe that’s something that you’re just supposed to know - but my brain is so full and constantly spinning, some simple things have to be very clearly communicated to me sometimes.
We are still waiting for results from her bone marrow tests. We are still waiting for her cytogenetics report. This will give us clues about anticipated changes in her marrow that would lead to acute myeloid leukemia.
We know we have made the right decision for Henley because we have given her a tool that will help her fight. She’s already so strong, but she needed this to be stronger. #fightsds #curesds #healinghenley
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