Gaining Endurance

 


It has been awhile since our last update.  Here area a few highlights we'd like to share.

- Madalinn is 3 weeks into her 6 weeks of pulmonary cardiac rehab.  She goes on M/W for multiple kinds of therapies (Occupational, Recreational, Exercise, Nutrition, and massage). I have been SO impressed at her abilities to move her body and have endurance.  Her heart rate and oxygen are monitored while she works out and her stats have been very good.  She's done treadmill and stationary bike, weight training, circuit training, yoga, and other varieties of exercises and activities.  She is able to exercise for 2 hours (with short breaks throughout) like a champ!   To put this into perspective, before diagnosis she wasn't able to walk around the block without stopping because she felt like she was going to pass out.  It is obvious that the medications are making improvements.

- She saw ENT Dr. Willett, whom Josh's family goes to for HHT nosebleed treatment.  We were amazed because when Dr. Willett walked into the room he informed us that he had had an extensive conversation with her lung doctor the previous day.  (Dr. Willett doesn't even work at Children's Hospital, but they had been in a procedure together with another patient. Talk about God's timing!). He knew everything about Madalinn's health situation and we felt very known and cared for.  Speaking of nose bleeds, in the month of January, Madalinn has only had 3 minor nose bleeds...as compared to 6-7/week in November and December.  We think this improvement is also due to effectiveness of her medications.

- After a lot of back and forth and date changes, we went to Cincinnati on January 18 to see the hematologist who specializes in HHT.  It was more of a "get to know you" visit and to find out what longterm care of HHT looks like.  
- We got both boy's genetic results back and they BOTH also tested positive for the HHT gene.  Sometime this year Josh and both boys will go to Cincinnati for tests to determine how HHT affects their bodies.  Right now we do know that none of them have Pulmonary Hypertension like Madalinn.

- We'd like to share with you something that we've only shared with people in conversations.  Sometimes big news like this gets misread or misunderstood so please read carefully.  
When Madalinn was in the hospital (in early Nov.) we were told by our main doctor that if medications do not work then Madalinn will need the last resort...a lung transplant.  We were advised to begin the process of doing all of the testing and necessary steps to get her eligible for the transplant list.  As of this week, all of those boxes have been checked and her case will be submitted to the State of Ohio in the next few weeks and she will be put on the transplant list.  She will be on HOLD STATUS, meaning we are not looking for donations at this time.  However, if at any point the medications are no longer working or her body takes a dramatic turn, she will be ready to quickly be made active on the list.
In summary, currently her medications seem to be doing a great job!  However, if at any point down the road she needs a transplant she will be changed to active status.  Currently, she will be listed on hold status.
How are we doing with this?  Well, it's really big, and sometimes heavy, stuff.  We are focusing on how well she is currently doing and do not focus on the "what if's."  When the time comes the Lord will walk us through it.  We try to live in the present.  (By the way, I think my word of the year is Present)

- On a lighter note, one day Madalinn and I went out to Starbucks together for some one on one time.  I asked her what she feels like God has been teaching her.  Her response was, "Contentment."  She had been struggling through those hard, and completely normal, questions of "why me?"  "Why is God allowing this to happen?"  So when she responded with "Contentment" my heart swelled with joy.  God is working in her heart and it is obvious to those around her.



Ways to Pray:

- Praise God for the noticeable improvements in her.  Pray that he will continue to open up her pulmonary arteries to allow blood to flow easily.

- We meet with our PH Cardiologist this Thursday, Feb 3.  Madalinn will have a few tests done to see how her heart looks.  Pray that what is inside matches with the improvements we've seen on the outside.

- March 3rd we have a Telehealth apt with the PH doctor from Cincinnati who works with the HHT team.  We are curious of his thoughts about her treatment plan.

We are thankful for a great team.  Our doctor team and our support team (ie: YOU) have been so wonderful through this whole journey.  Thank you for continuing to care for us and pray for Madalinn.

Comments

Post a Comment

Popular posts from this blog

Tuesday, November 2

Image
Playing Skipbo with the Recreational Therapist   Over the past two days the doctors worked hard to push her meds to reach the goal amount.  This means that she dealt with side effects of nausea and headache most of the time.  I was amazed at her endurance and ability to withstand it.  She enjoyed time with the Physical Therapist, Occupational Therapist, and Recreational Therapist.  They always have fun things to do with her. This afternoon they repeated the echocardiogram to see how the medication is effecting her heart.  The discouraging news is that her heart still remains the same.  Tomorrow (Wednesday) morning at 8am she goes for a long MRI from her neck to her pelvis.  This MRI will last 2-4 hours.  Pray that she will not have side effects from the meds while trying to lay still in the machine.  Pray that time will pass quickly and that she can make it through the whole test.  This MRI will give the doctors the images...
Read more

July Update

Image
    We have officially been in our new house for 2 weeks!  Boy has it been a wild ride!  Our closing was delayed so our turning over possession and gaining possession were a bit off.  We ended up staying with Josh's parents for a few days.  The day after we unloaded our Uhaul Josh came down with a stomach bug that had him down for the better part of three days.  We painted over half of our house in preparation for new carpet that came this week!  Now we can finally get to unpacking most of our stuff.  I have to say that we are all looking forward to being settled.     The thing that Crosby loves most about living in Centerburg is getting to ride his bike around town by himself.  At our previous house that was not an option at all so he feels so much freedom and responsibility now.  He rides to the post office daily to get the mail from our P.O. Box.  Madalinn loves the country and is dreaming about being in 4H next ye...
Read more

the Beginning

Image
  Madalinn is a sweet, caring twelve year old girl.  She is a great friend, sister, and daughter.  She loves stories, painting, yoga, and making movies.   For as long as we can remember she has never enjoyed running and playing.  When asked to play tag with friends she always said no.  She'd say, "I don't like the way I feel when I run."  This year we noticed increased fatigue.  She no longer like to ride bikes and became anxious to go on family walks.  It was hard to decide if being slow and inactive was part of her personality or if there was something physically going on.   Wednesday, Oct. 27 We deiced to get her checked out when her period lasted for 4 months and the fatigue was getting worse.  We suspected she was anemic.  Our pediatrician listened carefully and was very thorough in ordering tests and giving referrals.  My mom arrived for her scheduled visit and was able to stay with the boys while I took Madalinn to ...
Read more