Day +161 – Swimming, Gymnastics

Life has been busy lately.  Coming home from the hospital at 5am on Saturday, we had plans that night after church to go out with some friends to celebrate Lauryn’s birthday with ice cream.  Not sure whether to cancel or not, we decided to wait and see how Naomi was doing that day.  Doing well, she went to Mass, and then we all went for ice cream.  It was a fun time.  4 adults and 11 children.

Monday, I called the dr’s office about her cultures.  I declined to take Naomi in for an office visit because she was not running a fever and seemed very normal.  The dr was fine with that and since she never called me back, Naomi must have had negative cultures.

Wednesday is our fun day around here.  I am off and we try to enjoy ourselves.  Since we took so much time off school while Naomi was hospitalized, we are homeschooling through the summer.  But Wednesdays are the one day that we totally skip classes and do whatever we like.  We started the day trying to set up a small pool in the backyard.  Not having any clue how to use the air compressor, I decided to skip that and we went to the local activity pool.  I caked Naomi’s face with sunscreen and made her wear a long sleeve shirt over her swimming suit.  Her skin is super sensitive from her transplant and if she gets sunburn, her chances of graft-versus-host disease increase.  That is enough of a threat to keep us in the house all summer….. except that it has been over 100 degrees each day and we have been craving a beach, the waves, or ANY water.  So, we did it.  I am VERY happy to report that she did not get any sunburn whatsoever!  We were there for a little over two hours.  I did require regular “sun breaks” in the shade.  The children had a blast and Naomi picked right up where she left off last year, swimming and going down the slide.

Then, on Wednesday evening, she had her first full-length gymnastics class.  In a non-competitive developmental class, they are reteaching her terminology and helping her regain strength and stamina.  She did extremely well and said that she felt like class was only 15 minutes (it was 75) and that she could have kept going.  So, I decided she could handle the second day each week and registered her for the second of that series of classes.

Her diet has been great and increasing.  She is doing better with liquid intake this week.  I have her drinking Shaklee Hydration drinks, sole water, and then iced water with lemon and stevia.  Our goal is 5 of her canteens each day.  That is 60 ounces.  The rule of thumb is half your body weight in ounces per day.  That would be 25 ounces per day for her, if she were not on meds.  I have her doing more than twice that due to her meds and the risks they pose to her liver and kidneys.

Having had an increase in  cyclosporine last week, we are having quite a bit more attitude to go along with that increase.  It is very difficult to explain to the other children how we have to be patient with her because of her meds, but yet tell her that we expect better behavior and more respect even though her meds may make her feel like being mean.  It is such a fine line to walk being the parent of a child on meds that makes them disrespectful, selfish, and aggressive.  Instead of counting up from the transplant, I think it is almost time to start counting down until she can wean off cyclosporine!  I hate how that med makes her act!  As long as her liver and kidneys continue doing well, that will happen at the 1 year mark, January 15, 2015.  That is 203 days away.  ImageImageImageImage


ER Visit

Not fun news today, sadly. Last night, we took Naomi to the ER due to a high temp. There were no other symptoms. She was a bit more lethargic, but we all are because it is so hot here. At the ER, blood draws found her nutrition levels and blood counts to be great. Her ANC was 5000, hemoglobin 10.7, platelets 180,000.
But her electrolytes were really off. She got a bag of sodium chloride and a precautionary bag of antibiotics. They also sent blood to be cultured. We came home after 3 hours with instructions to follow up with the dr on Monday for culture results.
In the meantime, we must be more diligent to get her drinking and stay balanced with electrolytes. It is SO SO SO hard to drink enough here. At 11am, we were over 100 degrees already.
After sleeping the morning away, she is eating and drinking and her temps are down. So, all we can do is wait. Thank you for your prayers.


Monday’s Appt. On Day 152, Medicine Delivery Issues, Insurance is Fun

Long Update….. a lot has been going on, most of which will interest few of you. This is the “fun” stuff that us parents need to deal with. As though the emotions of having a child going through this is not enough, we get to do all the legwork to get claims filed, meds delivered, appts scheduled, etc….. Sorry for the length!

Monday was Day 152. Naomi and I made a trip to COH for her monthly follow up. When we checked in at the registration desk, someone had made a mistake and scheduled her for the 19th instead of the 16th. Knowing that we are always there on Mondays, it was obviously an error on their part. After an email to the clinic and about 15 minutes waiting, we were sent right up to the clinic. Arriving there, we knew we would be sent back to the lab for blood work. Sure enough, once we told the clinic she did not have a catheter anymore, we were redirected to the lab, but not before they could call and squeeze us into the schedule.

Naomi was amazing during her blood draw. She had a conversation with the technician about her siblings and homeschooling and did not even flinch. Over in less than a minute, we were on our way back up to the clinic. After vitals, we were told to go get lunch and come back around 3pm….. In 3 hours!

So, not really hungry, we went to the Japanese Garden and enjoyed over an hour of watching fish and turtles in the pond. There were 5 adult turtles and 2 very, very small babies. The babies were smaller than the palm of my hand and were fascinating to watch. Naomi sat on a rock next to the pond and just stared at them. She would sing, and two of them kept coming closer to her as she sang. It was something really special to watch.

We grabbed lunch in the cafeteria and took our food to a quiet place in the park. Watching birds eat cracker crumbs that someone left for them, we enjoyed the peace and made new memories. The last time we had been in that park, our time came to an end and was ruined by Cait peeing and her diaper failing. I was soaked and had to run to the car for a change of clothes. So, we were thankful for the new memories and laughed about that time as we talked about it.

Her visit with the dr started with the dr walking in with her arms open to hug Naomi. Dr. P remarked at well she looked and how “really, really good” she is doing. We looked over her labs, which are all in normal range and no longer elevated due to illness. The dr also gave her the go-ahead to return to gymnastics. Slow at first and not strenuous. Naomi was very excited and did a cartwheel for the Dr to celebrate.

It was another very positive visit. We do not need to return for another month and will have labs done in two weeks at home, again.

On other news, we have had some difficulty getting meds again. The story is long, but for documentation purposes, I will write it out. Last Wednesday night, a shipment of the generic brand arrived. It was sitting on the front porch in 110 weather and the cold pack was not cold anymore. On Thursday, I called to return it and get the name brand GENGRAF, which the Dr specified. I also told them that future deliveries needed to be signed for so they did not sit in the Vegas sun!

I spent over an hour on the phone. Some times, on hold. Other times on a three way call getting the return process started, an override noted on her account so the name brand could be sent in the meantime without delay, and all this sorted. We had Aetna Home Delivery, Aetna Specialty Pharmacy and Aetna Insurance claims all dealing with it on three way calls. After the call was done, I was told that the return slips are on their way to me, the override was issued, Naomi is eligible for a 90 day supply due to be a transplant patient, and a new shipment would be sent on Friday morning.

A new shipment never arrived. So, Tuesday, I called to check in. I was in CA on Monday and not able to deal with it. It ended up that the delay was due to the override which was put through for a 30 day shipment and not a 90 day shipment. It would have taken another day or two to sort out a 90 day override, they said. So, I approved shipment of a 30 day supply.

Fortunately, the shipment did arrive on Wednesday via overnight delivery. It was signature required, too and did not sit in the sun at all. Just in time, too, because the last of her supply runs out Thursday. It is sad that getting meds on time is less a concern than insurance overrides. I cannot believe no one called me, and did not intend to after her override on Friday meant no delivery! I receive monthly calls from Naomi’s case manager at Aetna. I will be sure to tell her all about this situation. I am sure she dreads calling me each month. She gets to hear about all our insurance complaints……

We are trill trying to get the anesthesia from Naomi’s admittance on September 23, 2013 covered. There is some contract issue because the dr who did the anesthesia was not an anesthesiologist but was a pediatrician. He is contracted with the hospital to work as an anesthesiologist in pediatric outpatient procedures, which this was even though she was inpatient. The procedure was done in her room, not in the OR. But the insurance company will not recognize him as an anesthesiologist or pay him for that procedure. I have spent days of my life trying to get him his $650 from that bill so that the $1800 bill can be processed already.

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Day +149

Naomi and I were sitting beside each other at the table beading today.  She brushed against me and felt a bit warm.  I panicked and touched her forehead to check for a fever.  Of course, she was fine.  Do you have any idea how many times a week I put my hand on her forehead as she brushes past me?  

When I did that, she rolled her eyes a bit and made a face saying “here we go, again.”  So, I grabbed her and hugged her tight and gave her tickles and kisses.  I love being able to be silly and fun with her and not worry about an access line, hurting her, etc.

+150 tomorrow.  We are thankful for the miraculous recovery she has had so far.  Minimal illnesses and quick recoveries and soaring counts.  Her liver and kidneys are handling her cyclosporine just fine.  We are also on a 90 day mail order program now.  So I do not even need to go get her meds myself.  Today we are baking and cooking and crafting – all to avoid the 100+ degree temps outside.  Summer is definitely here in the desert.


Day +144

More gymnastics. She cannot wait until next Monday to ask see if she is allowed to return to the gym. Tonight we went to the park and the kids all played football. She would be flipping around on her hands when between plays. We could see her a bit winded, but otherwise, no one would ever guess she is recovering from a bone marrow transplant. A typical 6 year old in so many ways…. but she has an obvious zest for life and loves being active. There is no stopping her.


Day +143

And she ate 4.5 pieces of pizza and we reminisced about hospital life. It all seems like a lifetime ago. A nightmare. I can hardly believe that was our reality. Isolation. Masks and gowns. Gloves recommended. No sharing a bathroom with her due to the chemo on her toilet from it passing thru her body. Crazy stuff we have experienced. And then tonight, to see her running with friends and fighting with siblings and eating four and a half slices of pizza.


Local Appt

Monday was our first time back to Naomi’s pre-transplant dr. It was easier and less emotional than I thought. The waiting room had been redecorated and even the door moved and some remodeling. It was different enough to help us make a new start.

The best news is that her hemoglobin is normal for the first time! 11.4, thank you very much. I will take it!

Her wbc was a bit elevated. The normal range is 4.5 to 10.5. Hers is 12.9. That means she is likely fighting something. The great news is…. Her body is fighting whatever it is. The bad news is there is something there to fight. Her dr did not seem too concerned.

Some of her levels will not be back until today and later in the week. So we will wait for those results to trickle in. The dr will email me results as they come.

We discussed Naomi’s going back to gymnastics. This dr also has a daughter in Naomi’s pre-competitive level. So, I was curious as to the dr’s opinion on Naomi returning and the risks. She indicated that it was safer than a school and if Naomi were not homeschooled, she would have returned already. That decision will likely be made in 2 weeks when we go back to CA.

We are still trying to find a new normal. I am beginning to think I am looking for a normal that never existed!