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
Thursday, December 28, 2017
Pre-Op
Henley was awake and visiting with everyone at the clinic most of the day. When we left, she fell asleep and has gifted me time to eat, check in to a different hotel, shower and now post this update! Wow - I guess that's what happens when you just have one little cat nap during the day.
Less than impressed with the hotel last night. So I checked out early and changed today. After 12 hours of travel yesterday I didn't have the energy to change rooms last night- bed was clean, so we made use of that and made the change this am.
Instead of "doing stuff" during what is Henley's usual morning nap, I decided to join her and got in 2 extra hours of rest. Which was awesome. I even got to load up the luggage cart before she woke up! It's amazing and kinda stupid how much STUFF you need when you travel with an infant.
If You See Someone Struggling - Help
Took the loaded cart and Henley (in her Tula) down to the lobby to check out and that's where the day started to feel lonely. As the elevator doors opened, I tried to navigate the cart out the doors and sure enough a couple things fell off the cart. I tried to catch the door, but wasn't fast enough. Hit the button on the elevator, but again wasn't fast enough and instead I watched the numbers climb as my stuff rode up to the 11th floor. When the elevator came back down my stuff was still in there. Upside down and laying on the floor. A guy looked at me, my loaded cart, my strapped on baby - smiled and walked out of the elevator. I went in and started trying to collect things and the other stranger kindly stepped in and asked if he could help me at all. He stacked the stuff back on the cart and helped me roll it towards the door.
Why a hotel? Mostly because I really needed quiet time with Henley. Time to just fully focus on her and not feel the need to interact with others. Time to rest.
We ice skated the car to the hospital for appointments today and arrived a couple hours early. Henley and I wrote prayers on paper notes and hung them in the chapel tree for one friend who is on hospice waiting for God to send his final call and another friend who is desperately looking for an HLA match. We watched the fake (electronic) fish aquarium, which Henley LOVED and then we met Elaine.
Elaine has been volunteering at the hospital since 2011. She is elderly and disabled and rides a metro transit vehicle from her door step to the hospital once a week to teach people how to knit. So, she did. She got me all set up with yarn and needles and taught me how to be a "picker." Several times during our visit I heard myself exclaim like a child "Look at me! I'm doing it!" And she would say, "Yes, I noticed!"
Our visit with the surgeon was less than impressive. I'm sure he's skilled with the blade - but he REALLY lacks people skills. We are comforted to know that we will be admitted under our hematologist's care at the hospital. We are very comfortable with her and trust she will guide us over the next few days as we transition to this new normal.
Several has asked if they can visit while we are in the hospital. My thought as of right now is to wait until we get into a room after surgery and they give you all an update.
I have a terrific friend who will sit with me at the hospital tomorrow while Henley is in surgery. She has a cool and clam personality like Kyle since he can't physically be there.
We've been told surgery will start at 7:30am and is expected to take at least an hour, plus add on more time for the bone marrow biopsy. We greatly appreciate all who will be participating in the prayer chain our church will activate when surgery begins. I will post an update as soon as I can.
Less than impressed with the hotel last night. So I checked out early and changed today. After 12 hours of travel yesterday I didn't have the energy to change rooms last night- bed was clean, so we made use of that and made the change this am.
Instead of "doing stuff" during what is Henley's usual morning nap, I decided to join her and got in 2 extra hours of rest. Which was awesome. I even got to load up the luggage cart before she woke up! It's amazing and kinda stupid how much STUFF you need when you travel with an infant.
If You See Someone Struggling - Help
Took the loaded cart and Henley (in her Tula) down to the lobby to check out and that's where the day started to feel lonely. As the elevator doors opened, I tried to navigate the cart out the doors and sure enough a couple things fell off the cart. I tried to catch the door, but wasn't fast enough. Hit the button on the elevator, but again wasn't fast enough and instead I watched the numbers climb as my stuff rode up to the 11th floor. When the elevator came back down my stuff was still in there. Upside down and laying on the floor. A guy looked at me, my loaded cart, my strapped on baby - smiled and walked out of the elevator. I went in and started trying to collect things and the other stranger kindly stepped in and asked if he could help me at all. He stacked the stuff back on the cart and helped me roll it towards the door.
Why a hotel? Mostly because I really needed quiet time with Henley. Time to just fully focus on her and not feel the need to interact with others. Time to rest.
We ice skated the car to the hospital for appointments today and arrived a couple hours early. Henley and I wrote prayers on paper notes and hung them in the chapel tree for one friend who is on hospice waiting for God to send his final call and another friend who is desperately looking for an HLA match. We watched the fake (electronic) fish aquarium, which Henley LOVED and then we met Elaine.
Elaine has been volunteering at the hospital since 2011. She is elderly and disabled and rides a metro transit vehicle from her door step to the hospital once a week to teach people how to knit. So, she did. She got me all set up with yarn and needles and taught me how to be a "picker." Several times during our visit I heard myself exclaim like a child "Look at me! I'm doing it!" And she would say, "Yes, I noticed!"
Our visit with the surgeon was less than impressive. I'm sure he's skilled with the blade - but he REALLY lacks people skills. We are comforted to know that we will be admitted under our hematologist's care at the hospital. We are very comfortable with her and trust she will guide us over the next few days as we transition to this new normal.
Several has asked if they can visit while we are in the hospital. My thought as of right now is to wait until we get into a room after surgery and they give you all an update.
I have a terrific friend who will sit with me at the hospital tomorrow while Henley is in surgery. She has a cool and clam personality like Kyle since he can't physically be there.
We've been told surgery will start at 7:30am and is expected to take at least an hour, plus add on more time for the bone marrow biopsy. We greatly appreciate all who will be participating in the prayer chain our church will activate when surgery begins. I will post an update as soon as I can.
Saturday, December 23, 2017
Surgery Scheduled for December 29
I prepared a pretty lengthy post to go on the blog about our last 72 hours of travel (1404 miles total) and doctor visits but have decided not to post it at the moment. Maybe it was just therapeutic for me to write it and that all it was meant to be.
Here’s the black and white of it, next week Henley will have a surgery to place a gtube that will assist in maximizing her nutrition. We have resisted this for sometime but one thing we have learned to do on this journey is make the best decisions we can for Henley on a day to day basis. Her condition is changing constantly and what’s right for her today is different than what was right for her a month ago. To avoid being under anesthesia twice in one week we canceled her bone marrow biopsy that was scheduled for today and it will be done at the same time as the tube.
There are risks with this surgery due to her decreased blood counts on all three lines. Our church will activate a prayer chain when surgery begins Friday morning, the 29th, at 7:30am. We’d greatly appreciate your thoughts and prayers during that time as well. She will stay in the hospital for several days.
We are wishing you all a very Merry Christmas and are so grateful for your prayers and love as we have been going through this challenging time.
Friday, December 15, 2017
Preparing for our December Trip
We've been trying to find the right dosing for Henley and her GCSF shots since we were in Minneapolis a month ago. This has meant lab work three times a week to check counts. It's been exhausting. Sadly, we haven't perfected it yet. Today's latest counts are still low. I give her shots every other day now at home and we are still dipping into severely neutropenic ranges. This makes her extremely vulnerable to infection.
In addition to issues with her white cells (specifically neutrophils), her third line of blood is failing. I think I have explained before, but for those unfamiliar I will give you a little overview. Our bodies have three lines of blood: white cells, red cells and platelets. All are made by our bone marrow. Transplant is typically recommended when two lines of blood are failing. For Henley this has been the case since she was diagnosed with SDS. She has required blood transfusions for her red cells and shots of GCSF for her white cells. Consistently now for over a month her platelets have been below normal range. Normal is 150 to 400 and today Henley's platelets are 96. Platelets can also be transfused, but they will wait until her numbers are lower before doing that. On a bright note her body has been maintaining her red cells for nearly 10 weeks!
These changes in her blood encourage us to do another bone marrow biopsy as soon as possible. That will take place on Wednesday, December 20th at the University of MN Masonic Children's Hospital in Minneapolis.
Schwachman Diamond Syndrome is a bone marrow failure syndrome, meaning her marrow is unable to do the job it was built to do. You can't group all SDS patients into the same exact group, as the syndrome has a large spectrum. We knew Henley's marrow was failing from the beginning, we just didn't really expect her platelets to begin failing as well.
Henley and Jess will head out Sunday. We have appointments in Sioux Falls, SD to see a new GI, then onto Minneapolis for appointments Tuesday and Wednesday.
We thank God that Henley has not shown signs of infection during this last month of trying to perfect medication. We ask that He will continue to protect her and that we will have safe traveling weather for the upcoming week.
In addition to issues with her white cells (specifically neutrophils), her third line of blood is failing. I think I have explained before, but for those unfamiliar I will give you a little overview. Our bodies have three lines of blood: white cells, red cells and platelets. All are made by our bone marrow. Transplant is typically recommended when two lines of blood are failing. For Henley this has been the case since she was diagnosed with SDS. She has required blood transfusions for her red cells and shots of GCSF for her white cells. Consistently now for over a month her platelets have been below normal range. Normal is 150 to 400 and today Henley's platelets are 96. Platelets can also be transfused, but they will wait until her numbers are lower before doing that. On a bright note her body has been maintaining her red cells for nearly 10 weeks!
These changes in her blood encourage us to do another bone marrow biopsy as soon as possible. That will take place on Wednesday, December 20th at the University of MN Masonic Children's Hospital in Minneapolis.
Schwachman Diamond Syndrome is a bone marrow failure syndrome, meaning her marrow is unable to do the job it was built to do. You can't group all SDS patients into the same exact group, as the syndrome has a large spectrum. We knew Henley's marrow was failing from the beginning, we just didn't really expect her platelets to begin failing as well.
Henley and Jess will head out Sunday. We have appointments in Sioux Falls, SD to see a new GI, then onto Minneapolis for appointments Tuesday and Wednesday.
We thank God that Henley has not shown signs of infection during this last month of trying to perfect medication. We ask that He will continue to protect her and that we will have safe traveling weather for the upcoming week.
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