Bless Madalinn's Heart

Being home has felt rather uneventful so I haven't felt the urgency to blog about it.  However, I know some of you are faithfully checking for updates.  We are thankful for you and your prayers!   Once home, we quickly got into a rhythm with Madalinn's medications.  Her pills are all very easy and can all be taken in the morning.  The Remodulin pump has to be changed daily (though someday the concentration will change and we will only have to change it every 3 days) so we are getting really comfortable with it.   For those curious for more information about her pump...the site in the back of her upper arm.  The site only changes when her body starts rejecting the site.  So far it's been in the same spot for over two weeks.  We hope it will last at least 4...hopefully more!  Maybe you're wondering, "What does change her pump daily mean?"  It means we fill a syringe cartridge with meds, place it into the pump (think old school pager s...

  Thursday started with Madalinn and us walking from her room to the Blue Jackets room (a hospitality place for families in the hospital) for a CPR class.  Madalinn was excited to take CPR because she hopes to be able to start babysitting in a few years.  She was also excited to be able to walk so far without a nurse escort! Then Lori from CVS specialty pharmacy came to teach us how to administer Madalinn's Remodulin.  This training was 4 hours long.  Our minds were swimming with so much new information. Thursday night Madalinn started going through some preliminary testing for a procedure that she might need in the future if medications don't end up working for her.   Friday was full of excitement and a long to do list so we could go home.  Madalinn went to three tests while Josh and I had a meeting with the pharmacist to go over all of her other medications.  Then Lori came back to finish our Remodulin training and watch us change over Madalinn ...

  The past two days have been eventful and full of good changes, mostly. Tuesday:  Got an iron infusion to spur her body on to making it's own red blood cells Got her pic line removed! Moved to a new room!   Good Bye ICU (We miss our docs and nurses from over there though) Right arm swelled and was very painful because of the medication coming into her body through her Remodelin pump.  This is totally normal and expected. Wednesday: 8am six minute walk test.  This was a repeat of the same test she had 19 days ago.  This time she was able to walk 150 ft farther, did not need oxygen, and maintained an O2 saturation of 90+.  This was much improvement! Got to remove all monitors from her body...no more heart monitors, pulse ox...complete freedom! Right arm pain was still around but less than yesterday.  She was able to move her arm around better. Got her first shower and hair wash.  Running water beats sponge baths!  She felt so great after ...

 Last night Madalinn had her first bloody nose since that super long one Thursday night.  This time it lasted about an hour and then the ENT doc came up and packed her nose.  This morning she woke up annoyed because her nose was all stuffed up and she wasn't allowed to sniff.  She was also feeling annoyed that her arm hurts from the medications going in.   Despite feeling annoyed, she complied with the nurses and doctors and was a fairly pleasant patient.  This morning they gave her a transfusion of one unit of blood (her second one) and did an Echocardiogram.  The Echo results were steady and have remained unchanged.  Our doctor said that it's what they expected and that it's okay.  After the blood transfusion, which took about two hours, she was sleepy.  The massage therapist came in and rubbed her back as she dozed off into a two hour nap.  (Sometimes this place is like a spa...massage therapists and heated blankets!)  Meanw...

  Madalinn received this painting from a few of her friends. Today at church I chatted with many people (which was so lovely) and their questions made me realize I need to post a general over all update. Here is a bit of an outline from the beginning.   - Thursday, Oct. 28 we were admitted the the cardiac ICU at Nationwide Children's after abnormal EKG and Echocardiogram.  Madalinn was diagnosed with severe Pulmonary Hypertension and a dysfunctional right ventricle in her heart.  She was in heart failure. - Friday, Oct. 29 CT scan showed that Madalinn has a pulmonary vein that does not return to her heart but drains into her Inferior Vena Cava (The vein that brings all the blood back to your heart from your body).  They thought this was a primary cause of the Pulmonary hypertension (PH) and would require open heart surgery.  She also had some spots in her lungs of malformed veins (from HHT) they could also be playing a role in her PH  - Tuesday ...

Thursday was a frustrating day with a few long bloody noses.  The one in the morning caused her to miss out on a few therapy sessions.  However, one bright spot was in the height of her frustration the music therapist came in and quietly played and sang some Lauren Daigle songs.  That was such a blessing and brought some needed calm. In the evening she had a bloody nose that lasted from 5pm - 4am.  For some of that time it was gushing, but most of it was just runny.  Unfortunately she swallowed a lot of blood which made her sick.  Since Josh has lots of experience with bloody noses he stayed the night with her.   On Friday she spent the morning sleeping to make up for the loss of sleep that night.  It was a pretty quiet day, not many therapy people came in.  And, praise the Lord, no more bloody noses!! A big milestone for today was getting the site for her Remodulin pump put in.  (the picture of the white disk on her skin). Today th...

In the past two days Madalinn has been getting up and about more regularly.  She can often be found sitting on the couch or in the recliner rather than in bed.  The physical and occupational therapists have been taking her on walks around the unit and both days she has been able to do one full lap without oxygen!  This has felt like a huge success to her.  She is also using the bathroom to do her hygiene routines.   They continue to increase one of her medications (currently through IV, changing over to sub-Q pump this weekend).  Today they decided to make increases at bedtime rather than in the mornings to help not feel the side effects as much. Madalinn's appetite is very low and I feel like we are talking about eating all day.  Yesterday and today she ended up throwing up after a meal.  The hope is we can change these by upping her meds in the night instead of the mornings. She continues to be encouraged by cards and packages.  Our family ...

  Today was a happy day!  Another HUGE stack of cards from people all over and large canister of popcorn from her favorite popcorn place Al's Delicious Popcorn!  She got to play games with therapists, play an interactive game that her cousins made, and her Mamaw came to visit. In my last post I explained the hard realities of Pulmonary Hypertension and our disappointment that medications seem not to be making a difference.  Over the weekend I joined a Facebook group for parents of kids with PH and it was so helpful!  I learned that everyone's experience is that changes from medication are slow.  They can take three or more months!  So, according to our PH team today they will continue with medications (a triple therapy) while also educating us on other options if we ever need them.   We learned today that they are planning to change her main medication from IV to Sub-Q (exactly like an insulin pump).  They will train us to be able to use the ...

Yesterday (Saturday) started with Madalinn repeating "I want to go home."  When I told the docs during morning rounds they made it their goal to get her out of her room.  Her nurse took her in a ride through the hospital to see the fish tank.  It brought great joy to Madalinn.  When she got back to the room she said, "I want to do that again tomorrow!"  She also got to have a girls night with Mamaw sleeping over. Yesterday she also got off of her nasal air tube.  They decided that the Nitric-oxide was not working in her body and since she had numerous nose bleeds yesterday morning they said it was no longer needed.  This was a bit bitter sweet...Sweet because she has less tubes and more freedom.  Bitter because the medication is not working which makes me sad. Tonight (Sunday) or tomorrow they will start increasing her meds again with hopes that they will start working.  PRAY for this.  If medications don't work our other options are dif...

 Thank you everyone for your prayers today for her Heart Cath.  It was very intense. The anesthesiologist came in to talk to her before going down for the procedure and Madalinn realized how high risk she was.  We had a half hour of crying together, praying and quoting scripture.  By the time she left her room she felt at peace (probably a small dose of meds helped too).   I was able to stay with her until she dozed off.  She was only sedated, not under general anesthesia.  Josh's parents and one of his brothers & his wife were able to sit with us as we waited.  It was much quicker than we had anticipated and it went very well.  None of the bad things they had been prepared for happened.  We credit that to the many prayers being offered up for her and God's power.  The results.  The pressures in her pulmonary arteries, lungs and heart were much more than the doctors had hoped given the fact that she's been on medication for...

  First of all, we feel so blessed by all of the texts, messages, cards, meals, gift cards and gifts that have been showered upon our family.  The support and love is so big.  We know many families around us are not so blessed to have abundance in the resource of support systems.  We do not take it all for granted.  We are realizing a bit more each day how long this stay is really going to be.  It is going to be a long journey.  We had thought at first it was going to be a few days (because we were naive), then we thought a few weeks, but in reality it will be much longer.  We have no idea how long.  Your prayers and acts of service are used by the Lord to sustain us.  Thank you. Update:  Yesterday's MRI was very successful and shorter than anticipated!  Thank you for praying.  Things we learned from the MRI...She has no hemorrhaging risks in her brain or liver.  Her liver actually looked better in the MRI than it did...

She did great during the MRI.  Thank you everyone for the prayers.  We will get the results and plan for what's next after the pictures are read. We will keep you posted. Continue to pray that her heart will be strong enough for future procedures.

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...

 *For now I'm skipping over Friday and the weekend so I can post daily updates...I'll go back to that later.  Today is a low key day, no tests or procedures. Every 12 hours, or so, the doctors up her Romodulin (heart med).  They started her on a very low dose and increase it by 5 (units, mL, I don't know) once or twice a day.  She has been experiencing headache and nausea as side effects.  They are trying to manage the side effects to keep her comfortable.  When she's feeling good she is normal happy Madalinn.  She told Josh yesterday that she is not scared of surgery. She has already been able to feel a difference in her breathing and how she feels since being here.  She said, "I can take deep breaths!  I've never been able to take deep breaths before!"  She is realizing that what she has always thought was normal was actually not normal.  Surgery is what will help her actually feel normal, eventually, and she is looking forward to...