Alice Returns to the Hospital

Yesterday (June 29th) I took Alice back to the hospital.  Her breathing was labored when she woke in the morning and I could see her ribs each time she inhaled.  I knew her oxygen saturation levels were lower than desired and that she would require oxygen.  Tyler and I weren't thrilled about going back to Salt Lake, so we took her to our local pediatrician in order to check her oxygen levels.  Being up and active she was at 87%.  The bone marrow team wanted her back for a night or two to monitor her lungs.  We came home from the pediatricians and packed our bags (or just grabbed our bags from the day before when we brought her home), it was great--we were already packed.

Last night they informed us that she has Rhinovirus.  The common cold...however, for Alice it's the uncommon cold.  This is the same virus she had before transplant.  We are relieved to know that it's something that can improve with time rather than something unknown and unpredictable.

Good news, her headaches have subsided.

The plan is for her to return home tomorrow (Sunday).  She will require oxygen while she sleeps until this virus passes.  Luckily sleeping with a nasal cannula is something we can manage at home.

She hasn't been as cooperative during the past few hospital stays as she was during transplant.  Maybe she is ready to be well.  We are thankful the times she was more willing and cooperative happened during transplant...what a blessing that was for Tyler and I--as well as Alice.

Thank you for your prayers and thoughts....it makes a big difference!

Lisy

 The A/C was out hospital wide and the rooms were getting very warm.  I thought it was perfect...I'm always cold, in fact I was considering putting socks on my feet.  However, Alice was hot and sweaty...or a sweatin' hottie.  That extra hair is so cute.

                        She played in the middle of this little farm town we built for at least two hours

                                                    Passing time putting stickers on the bed

                                    She wanted to feed her little mouse some of her hot dog

                                                   Her mouse is named "MOUSE"

                                                     Dad and Mom trading places

Alice comes home today - Headaches

On Tuesday the 26th, Alice went into clinic for a check-up because she wasn't feeling well...they told us to call if she became more ill.  At 2:00 am she ran a temperature and was extremely fussy.  Her head was hurting and her legs.  She was warm and thirsty.  We called the on-call doctor and they said to bring her in; so Tyler took her back to the hospital....we had been there already two different times that day, however, we didn't want to take any chances.

She only stayed until today...two nights total.  Last night she was so miserable (headaches and body pain)...didn't fall asleep until 3:45 a.m.  I rubbed her back and legs and scratched her head for hours.

We began to wonder if maybe the infusion of IVIG she received in clinic on Monday was a bad batch for Alice.  IVIG can cause headaches for several days following an infusion, not super common but happens.  She has been very uncomfortable.  They gave her some pain killers and it helped.

The fever she had which brought her in at 2:00 a.m. could have been from the Nulasta.  Her white count jumped up quickly therefore causing a combustion of cells, which can create fevers.  Nulasta can cause a lot of aches and pains in the bones.  Thus the leg pain.

Now----we are all home again!  And it's GREAT!

There is talk that Alice might be able to have her line removed in the next few weeks.  Natalie will need to drink better throughout the day before they remove her line.  That ought to be plenty of motivation for her to drink more.

Lisy

                           Getting ready to go home...but the baby has to stay, she's not ours.
 

                                             We keep the pink bucket close at all times.

                              And when that pink bucket walks away the garbage can will have to do.

Natalie is Home

This morning Tyler wrapped things up quickly at the hospital and came home with Natalie, just in time to turn around with Alice and take her to the hospital.  Alice woke this morning with a mild fever, and fussiness.  The doctors wanted to see Alice to ensure that she was okay.  They gave her a one time dose of antibiotic and checked her ears, nose and throat.  Some hours later Tyler returned with Alice.  Oh, how lovely it is to have everybody under one roof!  We hope to never take for granite the sweetness of being together.

Natalie felt terrible late afternoon, so I asked what she had eaten...she ate a pumpkin cookie and a string cheese.  She said that Matthew assured her that the cookie didn't have gluten in it.  I asked Matthew if he knew what gluten was and of course he had a limited understanding.  I suggested to Natalie not to take advice from the boys when it comes to her diet.  She agreed....and I can't blame her for listening to him, as Matthew is very informational and persuasive.  

Natalie wasn't able to eat anything the rest of the day because her tummy was in so much pain, until at one point she vomited and was then feeling better.  She had a plate full of watermelon before bed and was satisfied.

Her digestive system is very sensitive right now and needs a little break, so until she is stronger we will keep a close watch on her food intake.

Tyler and I were talking with the home care nurse this evening and she mentioned that Alice seemed more emotional than usual.  We have been thinking the same thing for the past couple weeks.  I thought about it for a moment then it dawned on me that she has been this way since she was taken off the steroid medication.  Of course, I should have known...after almost 7 years of having this medication be a large part of our life I should have recognized the pattern.  Hopefully in the next couple weeks her body will find the proper hormonal balance again.  Even with a careful tapper process from the steroid, the emotional roller coaster is still apparent.

Despite the challenges that each medication brings, we are thankful for the healing that our girls have accomplished.  The list of medications is minimal at this point--in fact Natalie will be finished with her anti-rejection medication in one week.  Big milestone!!  In the event that her body begins to reject, she will be placed back on the medication (cyclosporine).  We are hopeful she will do well.

Lisy

                                                                  It's great to be home!

Alice in Clinic & Natalie's Feeling Better

Today in Clinic Alice received an infusion of IVIG, which took most of the day.  She also received a nulasta shot.  Her ANC was only 200 so Dr. Pulsipher felt it would be a good idea to give her a boost.  Between the IVIG and the nulasta she will have more protection.

A few days ago she broke out with a mild rash on her face, but today when I saw her it looked much better.  She had been in the sun a bit the day it appeared, so we think it's from the sun...considering she hasn't been out much.

She was happy to see me when I met her and Tyler in clinic.  I stayed with Alice in Clinic and Tyler went back and forth between Natalie's room and us. 

As for Natalie, she is doing wonderfully.  Her high fever was a one time thing so far.  Maybe the antibiotics they gave her upon arrival Saturday night caught whatever it was quickly or the doctors suggested that she may have had a respiratory virus.  So far, all the cultures and tests have been negative.

They did a chest x-ray yesterday and the radiologist suggested to have another echo-cardiogram done because he suspected an pulmonary artery extension.  The bone marrow doctors didn't see the same concern as the radiologist; however, to be safe, on Sunday she received an echo-cardiogram.  It was good and healthy....phew!!!  AND...she cooperated very well for the technician--last time it was very difficult and the testing was a failure (she wasn't feeling well then, but managed to complete the test the second time in her room).  I was so proud of her.  Natalie you are SUPER GREAT!!!

Today she played games, ate yummy gluten free and dairy free food from the cafeteria.  I was impressed how well the cafeteria accommodates for individual needs.  They did a fine job making it tasty!!

During the past several months Tyler and I have experienced a lot of changing emotions, some challenging and difficult but mostly we have felt peace, hope, love and encouragement.  To sum everything into one feeling it would be that of gratitude.

I wish I could sit with each person who has helped our family.  I would share details of how amazing this journey has been for our family.  Amazing....because of the kindness and support we have received.  Tyler and I are just ordinary people, but truly extraordinary things are happening because of the selflessness of so many.  For example, when I come home from being at the hospital and I'm feeling exhausted, overwhelmed and basically spent...I discover upon arriving at home that something is waiting.  It's a note from someone, a package of fun, a warm meal, an uplifting message, a laundry basket full of clean folded clothes--what ever it may be it's sweet and received with a heart that wants to press forward and stand a little taller....and this is what is extraordinary--finding strength though the service and sacrifices of others.  To so many THANK YOU for coming to our rescue...we love you!!! 

Our warm meal tonight was sweet pork enchiladas.  It was wonderful and healthy, the children ate more than normal...I was even emotional watching them gobble it down, because of the gratitude I felt.  Blair said once he finished his meal that he would like to eat more brown pigs for another day.  I assume he called the pig brown because the pork wasn't pink like a pig it was brown.

Lisy

                                             Natalie in Cardiology for an echo-cardiogram

                                             She was given a stuffed frog for doing so well

                                          Alice loves to dress Evie up in all her princess clothes

Natalie Back to the Hospital & the Fish 5K & Rodeo Aftermath

We became concerned last night with Natalie when she said she was cold and felt "icky." She quickly found her place on the couch and rolled up underneath her blanket let out a groan. We thought perhaps it could have been something she ate that was causing the discomfort.  Usually if it is in fact something she ate, fevers do not accompany the pain. This time like many others Lisy and I dreaded the moment we would check her temperature and be forced by the number 100 to relinquish our hopes of avoiding another trip back to the hospital. Lisy made the call to Primary's and the inevitable answer to "bring her in as soon as you can" confirmed our family, again would not be spending the night together. Upon arrival Lisy said Natalie's temp had reached 104F. The doctors administered fever reducer so that she could get some rest, took blood samples and asked for patience as they work to determine the cause of the ailment. That is all we know so far. We should have more news on her throughout the day. This morning Lisy did say the fever had broke, but was still waiting on the blood results.
 


Oh how Lisy and I wish that we could adequately express how grateful we are to you all of you who continue to give encouragement to our little girls through this time in their lives. Thank you to everyone who had a part in the Fish 5K on Saturday morning. I was so happy to be back in Alpine and reconnect with old friends and converse with those who we would have never met if it hadn't been for our girls and communicating their story through this blog. I was so impressed how wonderfully the event was organized. We are so grateful to all of you . My favorite part was the route itself, because it took us through all the neighborhoods I had many adventures in while growing up in Alpine. It was really therapeutic for me....one big daydream of yesteryear. Thank you, Thank you

Tyler

Update on Matthew. The morning after his triumphant ride into the Strawberry Day's sunset; he said, "Dad my arm feels like it has a heart in it." I knew then we should probably get an x-ray of it. Sure enough the doctor confirmed that he fractured his humerus bone up near his shoulder. He came home wearing his sling with a big grin on his face. He's just as proud of his sling as he is his trophy at the moment. He's also happy that he got to go see the doctor for his own ailment. His point of view has always been: "Why does Natalie always get to see the doctors?" Well, he got his chance and he's getting as much mileage out of it as he can. We'll see how proud he is of that sling in a couple days.

Just wanted to show how happy Blair was to finally be able to ride a sheep.

Boys Night out to the Rodeo

The boys have been so patient these past few months helping us with the girls. We decided they needed a night out to themselves. They both have been hounding me the past few weeks about Mutton Bustin. We signed them up, and last night away we went to the Strawberry Day's rodeo. Natalie's school teach (Mrs. Bromley) was so good to come over and watch the girls while we spent a couple hours with the boys. They both performed much better than I had anticipated, and Matthew did well enough to take home first place. However, they sure did get an education on the difference between riding on Dad's back and then riding on something that wants nothing to do with you. I told Matthew to not let go, and that's exactly what he did. He brought the sheep down with him.....and then over him. His shoulder was a little jammed up, but its nothing a little dirt can 't heal. Congrats Matthew and Blair, you're real cowboys.

Tyler







This is right after.....the agony of victory

Clinic--celiac results are back

Busy day in clinic, the girls were very patient.  Counts are well enough--however, lower than they should be at this point.  They fluctuate up and down often.  It's hard for the bone marrow doctors to know how to measure the girls counts in reference to other transplant kids because they have never done transplant on a Leaky SCID patient before. 

Natalie's counts:  ANC is 700, Hemoglobin 9.9, Platelets 79, Chimerisms (whole body-pending, T-cells is 91%, B-cells is 100%)

Natalie's IgA test showed no antibodies for celiac disease.  Very interesting news...the blood testing indicates that she does not have celiac disease, however, they want her to stay on the gluten free diet, at least until her body recovers more.  Then they want us to slowly introduce gluten foods to see how she tolerates it.  I was surprised of the news.  I addressed the concern of the testing being inaccurate because she hadn't eaten gluten for three days before the blood test, however, they reassured me that the antibodies stay in the system for a while...much longer than three days.

Her tummy pain has improved so we will continue with a gluten free diet until otherwise indicated.

Alice's counts:  ANC 400, Hemoglobin 9.1, Platelets 184, Chimerisms (whole body 66%, T-cells 97%, B-cells unavailable)  Her B-cells will be non-existent for a while because she required Rituximab (chemo drug) weeks after the initial preparatory regimen for transplant.  Alice will need IVIG throughout the year regularly.

Both Natalie and Alice had slightly elevated liver enzymes...the doctors will keep an eye on it and check again next week in hopes that it will come down into the normal range.

The girls still require the assistance of the pink bucket each day.  We have them strategically placed in the cars and throughout the house.  The pink buckets have actually become a source of comfort for both Natalie and Alice...sometimes the nausea just goes away once they hold the bucket in front of them.  Alice has nicknamed it "my pink buck".

Lisy

                                    room #4 every week...the dolphin spin wheel never gets old

                                              somebody is standing in the way of her movie

                                                                          leaving clinic

Evie helping Mom clean the gluten free garden peas.  ;)  they made an excellent side dish to the fried chicken Natalie requested for dinner.

                                     

Thank You

Thank you for your comments and tips regarding gluten.  It has been extremely helpful.  Tyler and I appreciate the comments and can benefit from your experience and advice.  There are many great resources out there, thank you for sharing this information.

Lisy

Happy Father's Day

 The past couple days have blended together for me.  I find myself so focused on Natalie's gluten free diet that I get lost in time.  I have made many special trips to the store in search for different gluten free foods.  I decided to try and follow her diet myself so I could see how it feels.  I'm having a hard time not eating breads, crackers, and such.  I'm realizing how many foods have gluten in them.  However, there are many foods we like that are gluten free...such as rice, potatoes, meats, veggies and fruits.  I believe it will take Natalie some time before she doesn't feel the void of wheat and other grains in here diet.  We are wondering if she is struggling with dairy as well.

 Natalie's getting stronger each day, but still feels fatigue.  Today she took a bowl with her outside to the garden to pick peas and strawberries...Natalie, Alice, and Evie ate plenty of peas.  We feel lucky to have a garden, which was made possible by Kevin.  What a lovely thing it has been for the kids.  Natalie checks each day to see if there are more ripened strawberries.  Sometimes when the boys are playing outside they will stop for a snack out of the garden....maybe this is why Natalie waits for the strawberries...she needs to beat Blair to them.

We have not heard anything from the doctor regarding Natalie's confirmatory celiac test.  By Tuesday we anticipate more news.  

Lisy

p.s. my phone is having trouble so I have not been able to retrieve any messages or texts for a few days...if any of you have sent messages, I apologize for not responding.

Natalie's bin of gluten free foods.  I think it is so cute when I hear sounds of wrappers coming from the pantry and I see Natalie's little body leaning over her bin finding snacks.

 While Tyler was at church, the kids wanted to do something for Dad for Father's Day.  Blair came up with an idea of his own to make dad a special drink.  He mixed milk into Ruby Red Grapefruit Juice.  He covered it with a napkin so it would stay clean...in the meantime the milk was probably curdling in the acidic juice.  He sat on the driveway and watched for Tyler to arrive from church.  Blair could hardly wait.

Here it is and yes Tyler drank it all...it was definitely special.  Blair thinks it's so yummy. Tyler says it tastes like jet fuel.  Then again, Blair also prefers apple juice with his breakfast cereal rather than milk.

                                              A giant long Father's Day poster from the kids.

Clinic--Zumba Fest Postponed

The Zumba Fest has been postponed for a later date...more info to come.

Clinic was great today...only good news.  Counts are up, dropped two more meds from Natalie's list.  Dropped a med from Alice's too.  We love getting rid of a medication, it feels so good.

We should hear back within the week regarding Natalie's Celiac confirmatory test.  In the meantime she is eating plenty of non-gluten foods.

Natalie will no longer need TPN after tonight.  She will still receive magnesium fluid as usual, for another few weeks possibly.

Lisy

The girls enjoy walking through the little garden in front of the the hospital.  I had posted a movie a while ago of the girls making wishes in the west pond but it didn't work so we have added a new one today.

Finding a Rhythm

We love being home, and the kids are happy to be together.  Evie is probably the most happy.  She keeps tight tabs on me throughout the day and night.  This morning Evie woke early about 5:30 a.m.  I pulled her from her crib and we laid next to each other for a few minutes.  I asked Tyler to watch Evie from falling off the bed while I went to change Alice's IV pump.  The moment I pulled away from her she dove at me and clung to me.  In her mind, I may not be back for another week or two each time I leave.  It will only take a few days for that to wear off and she will be more at ease.

It's hard to be away from your baby...maybe harder for Mom than Baby.

Each hospital stay seems to set us back a little for a day or two.  It's always tricky finding a rhythm again after everyone has been apart and without any particular schedule.  However, being stationary in a hospital room for some time does create a fair amount of extra motivation on mine and Tyler's part.   It's a great way to get itching for productivity, of course not until after we have crashed for a day.  Matthew, Blair and Evie had plenty of fun while the girls were in the hospital.  It was good for the boys to be on the go and do things they aren't able to do when Natalie and Alice are home.  Thank you everyone who helped out with the kids.

Natalie is still very tired and weak.  She has eaten well and completely gluten free since Friday evening.  Just today she shared with us that her tummy didn't hurt.  She may feel a little better now, but if she truly has Celiac Disease it can take around four weeks for her small intestine to heal.  We are thankful for the IV nutrition she receives each night...it's making a big difference.  We are anxious to see what the next few weeks bring for Natalie.

Tomorrow is Clinic for Both Natalie and Alice.  We are planning to have a confirmatory Celiac blood test done on Natalie.

Both girls are tapering on their anti rejection medication.  I sometimes wonder if Natalie's stomach will feel better when medications are no longer a part of her diet.  It is SO SO SO exciting to imagine the girls medication free.  That won't happen for a while, but it's fun to think about.

Lisy

Both Girls Come Home--More News On Natalie

Today was very busy.  The day started out by Natalie having an ultrasound done on her spleen and liver, the doctors wanted to make sure she hadn't developed any hematomas after the scopes yesterday.  The ultrasound looked fine and presented no concerns.

Good news, Natalie does not have graft vs. host disease and she does not have a viral collection (CMV) in her GI tract.  Bad news, the GI doctor explained to us that some of the tissue from the scope biopsy looked liked celiac disease.  He said it's harder to determine considering that she just went through bone marrow transplant, because the tissue can be temporarily damaged.  The plan is to have a confirmatory blood test in clinic on Tuesday next week.  Also the doctor suggested to cut out all gluten from her diet to see if she begins to feel better.  I would not be surprised if this were true.  She complains of her tummy hurting frequently after eating.  Mostly she would complain after taking medications...celiac wasn't much of a consideration.  I believe we have checked for it in the past, so it's possible this may be a newer development.    

This is a big deal, because it can be an entire life-style change...as if we haven't made life-style changes already, maybe it won't seem so big after all.  I will say however, the low microbial diet they had to follow for the first 100 days is going to seem easy compared to a gluten free diet...at least until we adjust.   

Time will divulge more information that perhaps will be helpful.  I will take a week long course offered through the hospital for newly diagnosed celiac patients to better grasp the concept.

Whatever it is....if Natalie becomes healthier and  stronger = HAPPIER; it will all be worth it in the end.  We wish for her to have the proper energy she needs and the necessary nutrition.  I feel a little overwhelmed and intimidated by this news, although I hope as I learn more, those feelings will subside.


When the doctor came in to tell me that Natalie didn't have graft vs. host or CMV, she didn't know about the celiac development.  She took one look at Natalie and said, "this girl needs to go home...she is getting sad and her mental health is just as important."  I was so excited to hear that.  We anticipated her staying another couple days. 

What a relief, especially because yesterday when Natalie heard that Alice was going home the following day,  she sat by the window looking out and asked if she could go home too. 

We packed the girl's rooms in record time today...we were so excited to go home.  Upon turning the corner into the neighborhood, Alice said, "yeah, it's my house...I see my house".
I was so anxious to see the other children and hold sweet little Evie.  Once I held her I hardly set her down the entire night.  Natalie found her way to her favorite chair in the house and enjoyed being home.  Oh, how lovely it is to be together. 

This hospital stay felt much longer than 16 days; we contribute that to the stress of not having a solid diagnosis to explain Natalie's fevers, not having a PICC line most of the time, and Natalie having to do countless difficult things.

Sometimes I wonder if Alice got "sick" just to provide comfort to Natalie.  Had Alice not been there, Tyler and I would not have been together during this very difficult time and time of many decisions.  Natalie really needed both her parents this past week....maybe another tender mercy!!

Lisy

                                  Natalie in ultrasound...she did better this time than two weeks ago.

 On our way down to ultrasound, I took some pictures of the darling art on the walls in medical imaging (1st floor)...there are several! The girls love to look as we pass them...maybe having pictures of some fun things will provide good memories in the future.

                   Natalie's packed up and ready to go...just waiting on pharmacy to fill the medications.

                                                     Alice decided to nap while waiting.

                                   The wagon ride to the car...of course after three previous loads.

                                         I had to get a picture of their cute heads from behind.

                                The kids favorite decor of the hospital...the fish behind the elevators.

                                                                         Going Home!!

PICC line and Scopes

The past few days have been terribly long and difficult.

On Tuesday we had hoped to have Natalie's PICC line placed--due to scheduling it didn't work out.  She had been fasting most of Tuesday.  Then Wednesday she fasted for the PICC line placement, which went well.  In her mind she knew she could eat after the PICC line was finished...however, moments before she was going to eat the GI doctors Guthery and Varier stopped by to examine her.  Between Bone Marrow doctors, Infectious Disease and GI it was decided that she needed a colonoscopy and upper endoscopy to obtain biopsies of her esophagus, stomach, small intestine and large intestine.

She was devastated when she found out that she couldn't eat after waiting so long, in addition she would have to drink about three liters of a flavored laxative.  Sweet Dr. McManus came by shortly after and told us it would be alright if she wanted to eat some soup.  Natalie was so happy to eat something.

As we began the "go litely" drink (laxative), we could see that it was going to be nearly impossible to accomplish.  It was a fight every 10 minutes to get her to drink 1 ounce.  This had to happen all night in order to finish it all.  Tyler and I knew that we had no option except to place an NG tube (feeding tube).  This was terrible, she struggled with the placement.  She complained about the discomfort all night.  However, it was easier than forcing the fluid down non-stop.  By morning she heard mention that she didn't need the feeding tube anymore, so by the time the nurse came in to remove it, she had already done it herself.  Go Natalie!!!  I would have done the very same thing.

The rest of the morning was spent in the bathroom....she was ready for her scopes.

By this time she was getting more tired and hungry...by Noon (today) she was in the operating room.  Dr. Guthery took several pictures for us and said everything looked very good.  He was actually impressed to see such healthy looking insides for someone who just went through bone marrow transplant.  This made us feel so happy.  The biopsies will not be back until Monday possibly.  He feels like they won't be able to find anything.

Some things they are looking for with the biopsy are CMV and Graft vs. Host.

After she woke she was ready for her room and wanted nothing to do with the OR recovery room.  She slept for several hours upon arriving to her room.  It was so cute because once she felt well enough to eat, she ordered steak, soup, 2 bananas, popcorn, cheesecake, and ate most all of it.

She was so happy, and every time I talked to her she tried to hold back a giant smile.  It was so comforting to me to see her smiling and eating yummy food.

Natalie received more platelets today.

Phew.....

Alice is doing very well.  We think the reason she had to come back this past Monday was because a small source of infection in her diaper area, possibly due to a blocked gland or something.  The surgeon came to her bedside to lance it and drain it.  They gave Alice a bit of morphine and benadryl to ease the pain.  She managed very well---it was impressive, considering how much it must have hurt.  Since she has not had another fever.  Alice will go home soon on an antibiotic to clear any lingering bacteria.

Lisy

Alice likes the cream and stacks the cookie part...she calls them black cookies.

Inside this room is floroscopy where they place the PICC lines and such.  We have been in the Jazz locker room many times.  This past time I could hear her from outside the room calling, "I want my Mommy".  It was hard for me, even though I knew she couldn't feel anything and wouldn't remember anything, it was still hard.  She even called for her baby sister.

Natalie getting platelets.

Today she required a nasal canula, and was not happy about it.

The terribly uncomfortable feeding tube.

Arriving at Endoscopy.

Getting ready for the scopes.

Just falling asleep.

While Natalie was sleeping in the OR Dad was sleeping up stairs.

Yeah...Food!

Yummy!