Homecoming!

She's home!

After 18 days in the hospital and 17 at Bloggett Heather is finally back on the farm! Praise our great and glorious God.
She came home Saturday afternoon and when I dropped off dinner that evening she was up and at em', looked great, was just excited to be back where she belongs.  And the rest of us are excited to have her there too.
Yesterday was her first outpatient plasmapheresis so she got to get going bright and early to be at Spectrum by 8 am. I am just guessing here but I think she will take that over being at the hospital any day even though she is not a morning person.
She was excited to report this evening that her hemoglobin is at 10.2 & platelets are at 311! Holy smokes we are getting into 'noraml' range! Wahoo! She goes back on Thursday for another round and is scheduled for Sunday as well but doc says if her numbers are good that will be pushed back to Monday and potentially she could be done by the end of next week! Yup, DONE by the end of NEXT week!! This is super exciting and she is so excited and ready.
This has not only been physically draining on Heather but also very emotionally as well. Getting home is only half the battle but getting back to 100% health is the ultimate goal. She had to say good night to her babes again tonight and watch them drive away to spend the night somewhere else and as all you parents know, this is heart breaking for her. Please pray for physical strength as well as emotional strength to get her through (what we hope will be only) the next few weeks.
Thanks for your continued prayers and support. Heather, Mark and the rest of their family & friends feel overwhelmed with gratitude.

Zebra with a Zebra disease

Heather's doctors have used the phrase, 'you are a zebra with a zebra disease'.

If you are anything like the rest of us and don't work around doctors you have no clue what this means. Well, let me enlighten you. Apparently this is something doctors use to describe 'rare' patients who heal quickly from rare 'diseases'. See, doctors expect we are all 'horses' and get 'horse' sicknesses. Meaning, common people with common issues. Sometimes 'horses' get rare or unexpected conditions, a 'zebra disease'. In these cases it is a long process of recovery because it is something that most 'horses' don't get. However, sometimes 'zebra diseases' affect 'zebras'. This is when a rare condition happens to someone who has a rare reaction to the condition in which their bodies heal quickly from this strange disease or what-have-you. This is why Heather is a zebra with a zebra disease. She has this HUS but has recovered very quickly (in terms of recovery for HUS). Now, as much as I love calling Heather a zebra...doctors can all it anything they like but I know, my family knows, and a whole lot of other people know, she's not a zebra at all but a believer in the One True God who touched her and healed her with His hand. 

 Eviction time is coming close everyone! We are so excited to see an end to this hospital stay but no one is more ready then Heather. 

She has some fluid built up around her lungs so they will be doing a thoracentesis tomorrow morning. This is procedure to remove the fluid. As I understand it it is not an overly complicated procedure but prayers for everything to go well would be appreciated.  

She will have her plasma transfer again tomorrow as well then hopefully a good day of rest on Friday, plasmapheresis again Saturday morning then HOME! 

Pray for things to stay stable over the next three days so there will be no concern about sending her home, there will be minimal anxiety fore Heather about going home and minimal stress for Mark for having her home.

 

The Middle One - 3

My Middle Man -

You are one of a kind. So expressive and so charismatic. You wear your emotions on your sleeve. There is never any guessing with you. You are so silly and you make me laugh. You dance and laugh daily. Everywhere we go people comment on your crazy, spiky without trying, bleach blond hair. You wear it so well and it matches your craziness inside.
Outside is your favorite place to be. Almost as soon as breakfast is gone you ask to go 'play outside'.  You cruise around in the gator picking up stuff to put in the back or just to drive Grant or Payton around. Mowing the lawn with daddy is also a huge hit. It often leads to tears when you have to give little brother or big sister a chance to ride....like I said, emotions on your sleeve.
Your imagination is spectacular. You and Payton can play all day. Right now your favorite thing to play is 'Lions'. We just recently got our hands on giant Simba, Nala, Pumba, etc. I just love seeing and hearing you to play together. Payton often begs for you to be able to stay up from your nap so you guys can continue to play...sometimes she wins. :)

To be continued...(just want this one dated with today's date:-)

We celebrated your day by going to Crazy Bounce with Louis and Kellan (& Griffin) then going home and relaxing and having a dinner of Mac n' cheese, bread and juice. We finished it off with some ice cream cake and small gifts. (your party is yet to come) :) 

 

Girl's Night: Bloggett Style

Yesterday was a no treatment day for Heather! She said it was a 'long' day. Haha. 

Mark was able to go up in the afternoon and in the evening the hospital was bombarded with 8 extra girls armed with good food and lots of laughter. If laughter is the best medicine she got a lot of it last night. Most of our girl's nights out to GR are to go see Kenny (Chesney) at the Van Andel so going to see Heather in the Hospital was close to the same thing. ;) But in all seriousness it was a great night.

As far as her numbers yesterday, her hemoglobin was 8.3 and her platelets were 223! She is peeing like crazy so her nephrlologist says she will probably never have to have dialysis again!! Amazing!

She has a lot of fluid build up however. Her internal med doctor said it is in her tissue and will just have to work itself out once her kidneys have 'caught up' and fully recovered. It is just making her uncomfortable and making it harder for her to get good deep breathes. 

On a better note she got a great nights sleep on Friday night...finally. They switched up her sleeping meds and she slept all night.

She had a great day today too. Once again no dialysis (they check her 'numbers' everyday so it can be an option). Hemoglobin was at 7.8, platelets 226 (great after not having plasmapheresis yesterday), Creatinine 2.56, LDH 276, BUN 26. Her hemoglobin did drop and I did ask if they had talked about another blood transfusion but she hadn't talked to the hematologist yet and I didn't think of it again when I was up there this evening. 

She again was 'out and about' today. Mark and all three girls were up visiting and they walked to the 'cafe' for some dinner. 

Pray for hemoglobin to rise.

That she might be able to come home Tuesday or Wednesday. :) 

That the transition home will be smooth and anxieties will be eased when she does come home. 

Continued restful sleep.

Heather Update: Day 10

We are astounded but not surprised at Heather's progress. It is crazy to think of where she was a week ago verses where she is today. Words can not describe how amazing our God is and what he has done for our family over the past week. 

My husband and I and my brother went up to see her tonight. over the past three days I feel I have had my sister back. We laughed, we cried and we reflected about how amazing and scary the week has been but mostly about how we have seen God's hand in all of it. 

Heather did not have dialysis today (praise God). We are hoping for no treatment at all tomorrow! Wow! A day without treatment, what will she do all day. :-) 

Her numbers were good again (clearly). Platelets are up to 176, hemoglobin at 8.0, creatine 2.94 and LDH 246. 

She had a great appetite today which means the 'metal' taste is gone and food sounds good once again. Urine output was at 900 ml as of 11 am ( that is from midnight).

She did not sleep well and nights continue to be an issue. Her body is just sore and she really wants her chiropractor! (Haha) Her headaches are gone...praise The Lord. Yet she is still having nightmares but they think this might be due to the sleeping meds she was on which should now be out of her system. Praying for a good nights rest tonight. We have a 'big' girls night planned tomorrow so she needs her rest. :-)

Continue to pray that She can stay off dialysis.

That she gets restful sleep,

She can come home early next week! 

That her hemoglobin jumps to 12 or above.

She is able to go without plasmapheresis. 

Give God all glory for the progress she has made. The week could have looked very different for our family and we are so thankful for God's presence and grace!

Our Cool God

^" Let all that I am praise the Lord;

    with my whole heart, I will praise his holy name.  

Let all that I am praise the Lord;
    may I never forget the good things he does for me.

He forgives all my sins
    and heals all my diseases.

He redeems me from death
    and crowns me with love and tender mercies.

He fills my life with good things.
    My youth is renewed like the eagle’s!"

Psalm 103: 1-5

"He alone is your God, the only one who is worthy of your praise, the one who has done these mighty miracles that you have seen with your own eyes."

Deuteronomy 10:21

God is giving us our miracle!

Praise be to our great God!

Heather is doing amazing. We braced ourselves for a roller coaster and thus far it has only been a steady climb up. 

First of all, I took Payton up to see her this afternoon (for those of you who don't know me well, P is my 5 year old daughter). We got outside her room, did the whole hand sanitizing thing and walked in to find Heather gone. Hummm. I knew she didn't have dialysis today so thought that was strange. I went to the nurses station and asked where she was. This is the response I got, 'I think she just left to go check out the gift shop.' NO JOKE! I laughed and thought, 'well, if you go to see the patient and find they have walked to the gift shop that is a good sign.' :) It was nice to see her 'out and about' and great for P to see her for the first time not in the hospital bed.

1,500 ml of urine yesterday!! Her nephrologist (who I am not sure has the 'joy, joy, joy, joy down in her heart'...at least she doesn't often have it on her face :) was smiling today and was shocked at the progresss. She said she has never seen kidneys recover so fast. Our God is so cool! A true miracle. Because of this, dialysis is on hold for tomorrow. They are going to check her numbers in the morning and from there determine if she will need it. 

As for her other numbers...Her hemoglobin was done again to 8.1 but above 8 they seem to not worry about too much. They still want it up, up, up but no transfusion above 8. 

Platelets are up to 167. Day two above 150. One more to go then down to every other day of plasmapheresis. 

I did not get an exact LDH number today but I know it was up very slightly. Nothing they are worried about. 

Other great news, they are talking about discharging her early next week if all continues to go so well. Yippy!!

We give all the glory to God and thank everyone for their prayers. 

Please continue to pray. She is not through this yet but she has come a long, long way in a very short amount of time.

Heather Update: Day 8

Ok, so this post is a day late. So sorry!

However day 8 is definitely worth posting about.

It was a GREAT day! Yup, great! 

I will just post numbers for the day because I will post day 9 in just a minute. :) 

Hemoglobin was at 8.8. Down slightly from yesterday but nothing major

Platelets at 158. Yippy!! We have reached the 150's.

LDH was down to 271 from 350.

This is the biggy...
 Urine output was at 800+ at noon! This means her kidneys are doing SOMETHING! Praise the LORD, Praise the LORD!

She did have a slightly sore neck but her doctors say this is from laying in bed for the past week.
She was also able to get outside. My parents took Ava to visit and they went for a walk to the courtyard. First time outside in over a week as well. Awesome!

Prayer is an amazing thing.
Keep it up!

Heather Update: Day 7

"This is the day the Lord has made.
    We will rejoice and be glad in it."  

Psalm 118:24

Today was a GOOD day - PRAISE THE LORD!!!!!

Our friend Sarah was up to visit Heather this morning and hit the doctor jackpot. We had so many questions about everything that is going on and we have been 'missing' doctors. So the fact that she was there when 2 of Heather's 3 doctors came in and when her care worker came it...cha ching! The information was very helpful and we feel like there is a light at the end of the tunnel! 

Heather's numbers today are good - her hemoglobin is up to 9.1. Whaa whoo! 

Her palettes are up to 128.

 LDH steady at 350 (up a few from yesterday but hematologist said this is normal)

Here is the good news!

Hematology said they anticipate her being in the 140s 150s for palettes tomorrow - she needs to stay in this range for 3 straight days (she will have the plasma transfer every day until they hit this 3 day mark) and then they will start a wean and do the plasma transfer every other day for at least 2 rounds and then they can talk discharge and outpatient plasmspherisis. After discharge she will go there every other day for a while and then continue to wean to 3 days a week for a bit - then 2 days a week and so on. So this is a long process and will probably continue for 6-8 weeks at least.

As for her Kidney function...we are hopeful!  Numbers are good but the nephrologists said that is because of dialysis and in between treatments they expect the number to go back up again. What will most determine when the kidneys "kick into gear" is how much urine output she has and now much fluid she is getting rid of. It was 180 ml yesterday and needs to be around 1,000 but today when I (Lisa) left it was already at 500! They believe that within 6 weeks they will know if this is going to turn into end stage kidney disease which would be indefinite dialysis or kidney transplant. (WE ARE CLAIMING THAT THIS WILL NOT BE THE CASE AND THE KIDNEYS WILL HEAL COMPLETELY!) For the time being we are planning on outpatient dialysis. The good news about this is they are working on getting her to be able to do this in Holland so that is really great.

Prayers that her hemoglobin keeps climbing and that tomorrows numbers come out strong!!

Thankful for THIS day - for the wonderful team of doctors that spent so much time with Heather & Sarah today and helped Heather feel so much peace.

** Italicized parts of this email was taken from an email I received from Sarah earlier today. Thank you Sarah for making my 'job' easy tonight. :) 

Heather & Ava yesterday 10/2/13

Also, to everyone reading this if you would please send up a prayer for my cousin's 5 year old daughter who was admitted to DeVos Children's Hospital yesterday with Steven Johnson Syndrome. She is in the ICU and in a lot of pain. Please pray for healing and comfort as well as peace for her mommy & daddy. Today is her 5th birthday. :(

Heather Update: Day 6

Last night was a rough one for Heather. Again she had a severe headache but this time it was accompanied by some very unpleasant dreams. :( The trend tends to be that nights and mornings are the worst time of day and lead to very little sleep at night. To all those 3rd shift prayer warriors, please pray extra for her during these times. We know the power of prayer! 

I don't have concrete numbers to share today. Heather was up on the 3rd floor having dialysis when I was there today so I didn't think to check the 'notebook' for exact numbers (we are trying to keep a log of information in Heather's room so everyone can stay up-to-date and not repeat questions). I did chat with Michelle & Sarah who were up to see her early this morning so I have some info.

Platelet count was up this morning. Yay! (I think Heather said 105...?) 

Hemoglobin was down so she did get another blood transfusion today along with her dialysis. 

Creatinine level was up today but only slightly so that is good. 

I was also told about her LDH level (Lactic acid dehydrogenase). This number should be 140 to 280. Heather's is at 330. We want this number to go down. I was told this was a very important number. 

Keep up the prayers! 

Pray specifically today for no nightmares!!

Her spirits to stay high.

Pray for 12, 150, 140-280 (Hemoglobin, platelets, LDH).

Increased kidney function

100% Healing!!

Heather Update: Day 5

It was spa and date night last night for Heather. :-) Mark and her were able to spend some time alone last night and after getting cleaned up and lotioned up, they had a nice hospital food dinner. Mark said Heather ate a decent meal which is really good. She said everything tastes funny so even when she has an appetite she doesn't feel much like eating. They then had a little movie time and watched some "Oceans 11". Also she has a headache pain was at a '1'. When she was on her feet she was much more agile and seemed to be less shaky. 

When I talked to her this morning she was not doing as well. She had an extremely sore throat and her headache was worse again. As far as medically she had a steady day. Not much improvement in any area but nothing was a bunch worse. However, urine output was up! 150cc's from 30. That is really good. 

She had another round of plasmapheresis this morning and if I am remembering correctly she will take a day off from this tomorrow but I am not100% sure of that. It takes 12 plasma donors for a single round of this plasma transfer process! These are not the donors who get paid (these donations are used mainly for research) but those to take time to go to places like Michigan Blood to donate. Thank you plasma donors!  (You can contact Michigan Blood for more info if you have interest in finding out how to donate). 

She had three of her good friends come today and with their help she was able to take a shower and wash her hair again. (Thanks ladies! She loves you so much and appreciates you so). 

I talked with my mom this evening and she said her and my dad found her in great spirits when they went up this afternoon. This may have been in part to the two little visitors she had today. Yup, Grace and Harper came to visit! 

Pray specifically for a big jump in platelets and hemoglobin. 

No more sore throat and headaches to be minimal at worse.