Day 10...and counting

We hope you all are having a great Sunday.

Elijah has had a difficult few days but we are so fortunate to have found the source of his pain. Lab results revealed a bacterial infection in his blood which causes, among other things, a slow down in bowel activity. Gas & bowel was building with no way of escape. While they determine the strain of bacteria, he was started on vancomycin, an antibiotic that eradicates all strains. About 8 hours after the first dose, he began to feel better. Unfortunately his pain was still not under control Friday evening and he missed his 15 seconds of fame when 2 of the Nashville Predators dressed as Tigger & Pooh, and the local News came to his room to 'trick or treat' on halloween.

After 9 days, he & I finally felt the warmth of the sun! We went on a little field trip to the beautiful coy pond. Here he is on Saturday with Daddy, eating more of the crackers than he fed to the fish.

Today he was feeling well enough to go to the Play room. His legs are still a bit wobbly but he played hard enough to take a 3 hour nap afterwards. He then woke to a visitor-one of his favorite friends Alison who sang, danced and fed him corn pops! Her mommy and I will be having a little chit-chat about the corn pops later :)

Although we struggle to keep his temperature under 102, we do expect to go home in the next day or 2. Due to the infection, surgery for the port-o-cath and chemotherapy treatments will be pushed back at least 2 weeks.

As always-your concern for Elijah is treasured and your thoughts and prayers are appreciated.

8 Days Post-Op

Good Morning Family & Friends,

We are still in the hospital. After undergoing a series of tests (ultrasound, xray, urine, blood) we are still unsure of what is causing Elijah's pain. We do know that b/c of his immobility, gas remains trapped in his little body and because of the morphine, he continues to be constipated. The results from the tests for infection should be back later this afternoon. Postoperative testing of the liver, kidneys, and lungs are good.

This morning they have once again discontinued the Morphine, increased the Oxycodone, and added gas relief and enema. Our hope before days end is to at least get him sitting upright with minimal pain and to sleep more than 10 minutes without a pain spasm.

Please pray for Elijah's pain relief so he can move forward with the healing process and prepare his body for chemo therapy. Also pray for patience as we continue to rely on the surgical teams' assumptions - trained to rule on the side of medicine and disregard maternal instinct.

I am gathering all of your emails and blog posts in a scrap book for Elijah so please continue your wonderful and thoughtful messages.

All of my love and sincere appreciation,
Dawn

Still in the Hospital-Quick Update

Elijah was not able to be discharged from the hospital today. We found that the great physical strides he made yesterday were due to the increase in pain management medications from the previous day. Although his oral meds were increased in dose and frequency, he was taken off all intravenous medications to prepare him for home - this caused a dramatic increase in pain which in turn decreased his appetite and ability to be physically active. This change in drug type and administration has set his recovery back quite a bit.

We hope to be home tomorrow or Friday.

A Good Day!

Our Dear Family & Friends,

The measurement of a good and bad day during Elijah's hospital stay is simple-was he in pain or was he able to rest. Not only was he able to rest, he was able to walk (first time since last Thurs.), sing (we got about 3 encores of row row row your boat), & poop! (which is a major requirement for release).

We will be going home tomorrow-even though his IV has been reconnected due to a lack of fluids.

Here is an explanation of the histology findings. I will be updating the blog daily/weekly as we continue on this journey:
Approx 90% of the cells in & around the tumors were fetal histology-meaning "good cancer cell". This type of cell usually does not regenerate, does not need additional therapy and just needs to be monitored through blood tests. Unfortunately, the 10% of embryonal histology found ("bad cancer") means there is a possibility of regeneration and chemo therapy is the only method of reducing that risk.
Elijah will be going in for surgery to insert a port-o-cath in the next week to 2 weeks. He will then begin chemo-therapy consisting of a 3 day hospital stay and a 4 treatment per week regimen. This "cycle" will occur every 3 weeks for approx. 3 months.

Our prayer for the coming months is that God surrounds Elijah with an impermeable wall of protection where the very high incidence of hearing loss, renal/kidney issues, and neurological problems that result from chemo therapy in his age group - do not affect him. That he remain untouched by the other side effects such as vomiting, nausea, hair loss, loss of appetite/weight loss, etc...and that we remember - whatever he does endure is for a short time and a sacrifice that must be made in order to live a long and healthy life.

Thank you for the hospital visits, the messages, the emails, and voicemails. Your prayers are necessary and appreciated. THANK YOU!

A New Day!

Dear Loved ones,

Your prayers prevail again!
Elijah's pain has been somewhat suppressed with an aggressive regimen. The pain management team here is great - they've found the right combination to make Elijah much more comfortable.

As my son continues to expand his vocabulary, I find myself asking him things - "who is mama's big boy?" "Where's Daddy?" "Where do we play basketball?" Not one day had gone by that I didn't hear his beautiful little voice. Today was the first day I heard it since Thursday morning. "Mama, Daa-dee, Nana, cookie, and tank-chu". Some people have favorite numbers, favorite days of the week-I now have favorite words...

There were quite a few other accomplishments today-He was able to stand in his bed today! Although he was quite wobbly, he stood, holding on to Nana for a good 15 minutes before falling asleep (see pic). He also had his first meal. It's a good thing he's been sedated b/c had he known he hadn't eaten since Wednesday afternoon, we would all be begging for an "aggressive regimen of pain management"! :)

The only "unfortunate event" of the day was the IV incident. Apparently his IV came out of his ankle which would not have been cause for concern except his pain meds are being administered through a demand pump-through the IV. So once again he had to have a visit with the "IV Therapy Specialist". Elijah found absolutely nothing "special" about the specialist.

We should be home by Wednesday. Our sincere gratitude and love to you all.

Pray for Pain Relief

I've added a few albums of Pics of Elijah: http://photobucket.com/ElijahWilliams

After more than 6 hours of shear agony, Elijah is finally resting. The epidural has eased its way out and what was once a numb area with no indication of trauma other than a large surgical scar, now is a source of concern for all and intense pain with every deep breath for Elijah. Over the course of several hours he has received Morphine, Toradol, and Lortab. What finally gave him relief? An intravenous dose of Benadryl! Although he's been asleep for less than 30 minutes, I'm now hopeful his pain will subside with each passing hour.

Anesthesia has been called for a new consult in the morning to assess the source of the pain (the intensity and location may indicate more than the obvious).

As always you are appreciated and cherished. Please continue sending out your love and prayers.

OUT OF ICU!!!

Quick Update: We have now moved out of ICU to the 8th floor! HALLELUJAH! Here is a pic of Elijah with his Grandma Annie. Please keep in mind we do appreciate the flowers, plants, and gifts but would prefer you donate to The March of Dimes in Elijah's name (Elijah Ezekiel Williams). https://www.marchofdimes.com/howtohelp/donation_in_honor.asp
Elijah is doing a great job sitting up in his bed trying to come out of his medicine induced stupor. He's taken a fews sips of water and should be on solid foods by Monday or so.

I will continue updating as more info becomes available. Check back often as I try to figure out how to post pictures :op

Break me out of this joint!

Hello Family & Friends.

Our hearts are a little lighter this morning as Elijah has made great progress. The Vent was discontinued yesterday, this morning his nasal cannula was removed and they've just taken out his catheter and NG tube. His lungs are clearing and the swelling around his eyes and cheeks continue to go down.
Elijah continues to let us know that he is not at all too happy about being in the hospital. His Nana was standing next to his bed chatting with him and in less than 5 seconds he was awake and getting on his hands & knees!
Luckily, we are now able to give him his "PaPee" (Pacifier) so all is right in the world once again :)
We will be moving to the 8th floor OUT OF ICU by 1pm today! His surgeon came in today to check on him and other than a slight problem with his heart-rate, he is recovering remarkably well and should be home by Wednesday.
Unfortunately ,the surgeon informed us that an unofficial pathology report determined both tumors were in fact Hepatoblastomas. A final report will be given prior to his discharge home. His case will once again go to "Grand Rounds" as the best possible approach to future treatment will be discussed.

You are all cherished and loved.

1st Night Post-Op.

Hello Family & Friends. I know this message will find you happy & healthy.

Elijah slept well last night-although he had assistance from a few different pain & sedation meds. He spiked fevers and BP readings over the course of the evening and morning into this afternoon but that is to be expected after such a major surgery.

Thankfully the ventilator was removed today. He has been breathing on his own for awhile and as the previous days pain meds are being flushed through his system, he's slowly coming out of the medicine induced sleep. Unfortunately, he is experiencing some pain but we are able to "push" medication through his epidural to provide some relief.
He's opened his eyes several times, at times he opens them mid-cry, as if he's making certain the voices he's hearing are mommy, daddy, grandma Annie or Nana. I've been able to read his favorite books to him and sing his favorite nursery rhymes, although his neighbors may not be enjoying it all that much. :)

We know you've been diligent with your prayers for Elijah. The voices of his angels are loud and clear as it is apparent in his recovery. We should be moving from ICU tomorrow and can have more visitors at that time.

Thank you for continuing to lift us up.

Message to Our Loved Ones-Post Surgery

Hello friends & family!

Here is an update about Elijah:
(I will also be posting a blog about our journey and his recovery updates at http://www.elijahewilliams.blogspot.com/. It should be up by tomorrow evening. )

Elijah went into surgery at about 7:30 this morning. He was heading to recovery at about 3:45 this afternoon. The larger tumor was removed and the smaller one was found to be the same type so the entire right side of the liver was removed successfully - he had a bit of blood loss so he was transfused. Unfortunately he has now been moved to ICU due to his bronchopulminary dysplasia (immature lungs). He is having trouble coming out of anesthesia, his oxygen levels dropped a bit too low, and his lungs aren't functioning at full capacity. He is back on a ventilator and will spend at least a few nights in ICU. We should have the pathology report by Monday morning.

We ask that only family visit while he's in ICU but we should be back in post-op recovering by the weekend and will be able to have more visitors at that time.

Thanks so much for the prayers, messages, and calls. We have been so blessed with many loving and caring people in our lives. We are truly thankful.

In lieu of flowers/gifts please donate in his name (Elijah Ezekiel Williams) to the March of Dimes. https://www.marchofdimes.com/howtohelp/donation_in_honor.asp