Deyki's Make-A-Wish - 12/15 - Maybe not

[Corrine 1973]

We are getting closer to answers. At least we have some very solid theories and a plan to test them out. I am very tired from the past two days, so I will just state what we have learned. Don't count on any decent writing skills for this update - I am just too tired!

Deyki's appointment to day was excellent. I shared my frustrations about last night with his doctor and felt listened to. She is going to give some thought to a solution. We have what could be a big clue to the puzzle - Deyki tested positive for salmonella when he was in the hospital in May. The positive test results came back after he was discharged and no one called me to let me know. Now we at least know what caused that very high lingering fever and sepsis. Deyki was so very sick in May. Fast forward to the present - salmonella can gather and grow in the gallbladder. It could well be the reason for Deyki's pain. He could also have gallstones related to sickle cell. If either one of these theories proves to be the answer, Deyki will need surgery to remove his gallbladder soon. They are scheduling an ultrasound and an appointment with the surgeon.

His doctor also wants to have a brain MRI/MRA in September to monitor Deyki's moyamoya and Chiari. He will need to be admitted for a blood transfusion a couple days before the MRI.

I am not too stressed about anything I heard today because I am too sleepy and operating on auto-pilot. After some sleep I think the reality of the threat of a nother surgery and all we need to follow-up on will hit me. For now I just wanted to update all of you who are so kind to check in on Deyki before I head upstairrs and get some much needed sleep. Thanks for your support and prayers!

I am sorry that Deyki will possibly need another surgery. Hope you are getting a good nights sleep and your still in our thoughts and prayers.

 

[jenb1023]

I am so sorry to hear about everything you and Deyki have been going through! You let that Mama bear in you roar!

On a positive note, the ADR's sound great!

Sending prayers to all of you!

 

[myasma]

I am so sorry about what is happening with Deyki. I have had similar situations with one doctor caring for Mya. She sent Mya home twice prematurely without listening to my concerns. The first time Mya wasn't eating or drinking and we were admitted the day after we were discharged because Mya lost three pounds in a week. The second time she sent Mya home with a low grade fever and less than 24 hours later was readmitted for febrile neutropenia. There not much I can do about having her but if things really concern me I just talk with her primary onco and he makes the final call. Have you tried calling his primary? Sometimes docs will listen to thier colleauges before parents.

 

[MomTo4+more]

I am so sorry about what is happening with Deyki. I have had similar situations with one doctor caring for Mya. She sent Mya home twice prematurely without listening to my concerns. The first time Mya wasn't eating or drinking and we were admitted the day after we were discharged because Mya lost three pounds in a month. The second time she sent Mya home with a low grade fever and less than 24 hours later was readmitted for febrile neutropenia. There not much I can do about having her but if things really concern me I just talk with her primary onco and he makes the final call. Have you tried calling his primary? Sometimes docs will listen to thier colleauges before parents.

I guess there are doctors like that everywhere! It's very frustrating. Deyki's doctor is wonderful about listening to me. The trouble is, I can't get her pages in the middle of the night because the page operator won't put me through to her. They will connect me with the resident or fellow on call. Sometimes they even connect me with another hematologist, but HIS DOCTOR is the one who knows him and makes the right call. If it is during the daytime there is no trouble reaching her. I did just that last time, and I think that is what angered the sttending so much that he ignored us this time.



Last night we had some drama with Michelle - the baby I am caring for. We were at dinner with friends when she started shaking and her eyes rolled back. then she went glassy eyed and had a hard time holding her head up. She quickly fell asleep. I left the restaurant and took her to the nearest children's ER. It turns out she had a febrile seizure. Her temp had leaped to 104.1! She has a throat infection. Today she looks okay - much more playful and drinking her soy milk. (I accidentally typed in spy milk - now that would be interesting!)

I am truly hoping for a peaceful weekend!

 

[Corrine 1973]

I guess there are doctors like that everywhere! It's very frustrating. Deyki's doctor is wonderful about listening to me. The trouble is, I can't get her pages in the middle of the night because the page operator won't put me through to her. They will connect me with the resident or fellow on call. Sometimes they even connect me with another hematologist, but HIS DOCTOR is the one who knows him and makes the right call. If it is during the daytime there is no trouble reaching her. I did just that last time, and I think that is what angered the sttending so much that he ignored us this time.



Last night we had some drama with Michelle - the baby I am caring for. We were at dinner with friends when she started shaking and her eyes rolled back. then she went glassy eyed and had a hard time holding her head up. She quickly fell asleep. I left the restaurant and took her to the nearest children's ER. It turns out she had a febrile seizure. Her temp had leaped to 104.1! She has a throat infection. Today she looks okay - much more playful and drinking her soy milk. (I accidentally typed in spy milk - now that would be interesting!)

I am truly hoping for a peaceful weekend!

Oh My Goodness!!

I have heard about this happening with other babies when their temps would spike high real quick. One of those babies was me. When I was young my mom said that my eyes rolled back and I turned blue. It turned out that I had the croup.

I am hoping that your weekend is very peaceful.

 

[myasma]

I guess there are doctors like that everywhere! It's very frustrating. Deyki's doctor is wonderful about listening to me. The trouble is, I can't get her pages in the middle of the night because the page operator won't put me through to her. They will connect me with the resident or fellow on call. Sometimes they even connect me with another hematologist, but HIS DOCTOR is the one who knows him and makes the right call. If it is during the daytime there is no trouble reaching her. I did just that last time, and I think that is what angered the sttending so much that he ignored us this time.



Last night we had some drama with Michelle - the baby I am caring for. We were at dinner with friends when she started shaking and her eyes rolled back. then she went glassy eyed and had a hard time holding her head up. She quickly fell asleep. I left the restaurant and took her to the nearest children's ER. It turns out she had a febrile seizure. Her temp had leaped to 104.1! She has a throat infection. Today she looks okay - much more playful and drinking her soy milk. (I accidentally typed in spy milk - now that would be interesting!)

I am truly hoping for a peaceful weekend!

I am sorry about Michelle but it was a good thing you acted quick to get her help. As for the doctor, have you tried writing a letter or email to patient relations? You should not have to be subjected to such childish behavior. We moms have enough to worry about when it comes to our children's health. Adding the ego of a grown professional to the mix is just ridiculous.

 

[MomTo4+more]

We have our last ADR scheduled! Friday, November 6th - our last park day - we will be at Ohana for breakfast with Lilo and Stitch at 9:20!

I will be doing more trip planning with day by day plans as soon as I complete my lesson plans. We start school Monday! I have completed Deyki's lesson plans. The girl's plans are nearly finished for the first semester - I just need to add in Latin and geography. Disney planning is more fun than lesson plans, but soon I will be done!

 

[MomTo4+more]

We had a great start to the school year today! Deyki is officially a kindergartener. It was busy, but we got almost everything finished. Art is the only subject we didn't get to. That will be fun to catch up on over the weekend though!

Today was big day getting medical tests scheduled -

Tomorrow we are heading to the hospital for an ultrasound of Deyki's gallbladder. I have been hoping over and over again that no surgery is necessary. I want his pain to stop, but I want a simpler answer than surgery. Tomorrow should give us lots of information.

September 7th Deyki will be admitted for a blood transfusion.

September 9th he has a brain MRI/MRA.

They still need to schedule a consultation with the surgeon, unless tomorrow's ultrasound is beautiful. I am hoping for a beautiful one!!

I need to get to sleep, so I can get everyone up and out by 6 in the morning!

Hopefully we will have answers soon.

 

[Matt1026]

I am glad you have had a great start to school. We start tommorrow. I wish you the best on his test. Ihope all goes well.

 

[jenb1023]

Hope all goes well today!

 

[Sandy321]

hugs and prayers for Deyki and you!!

 

[MomTo4+more]

The official read isn't in yet, but so far things look good. Even I could tell his gallbladder is clear. The ultrasound tech agreeed with my "reading" of it. There is still a chance it is harboring salmonella, but it isn't appearing damaged. Now the waiting begins. I don't expect to hear from his doctor until Thursday because they are busy in clinic today and tomorrow.

It feels good to have this over with. With school off to a strong start, I want to take time to work on Disney things tonight. I have a frame to paint to get autographs at CRT and display the picture in. Maybe I will start that project tonight.

 

[Matt1026]

I hope everything goes well with the doc. reports.

Our school starts tomorrow so I am hoping to get life back into some kind of order. I told my DH last night that time is slipping through our fingers and we better start finishing our Disney Plans. At first I was thinking it will never get here and it is coming at us fast. Good Luck in getting your frame painted.

 

[MomTo4+more]

So, I didn't get the frame painted or anymore planning done. I was too tired! Teaching all three of the children around the baby;s therapy schedule is something I will need to get used to. By yesterday it was going much more smoothly as we started to fall into a routine. Deyki started the morning saying, "It's a school day, again? Don't we ever get a break?" Ugh! Only 4 days into kindergarten!

I posted a message on the family boards about our near disaster with Deyki and a silver dollar. I will recap it briefly here. He had the coin because of a treasure hunt I did with him to introduce map skills. I never thought he would put it in his mouth. (You can see where this is going?) He started gagging and coughing right after breakfast. At first I thought it was an allergic reaction to something he ate and called for the girls to get his epipens and call 911. He stopped coughing and couldn't move air at all! I was getting very scared and about to push the final button on the phone - when he gagged, and out popped the silver dollar! I can't tell you how relieved I felt!

I held him close for several miinutes afterwards. I couldn't help thinking we have come through so much medically and then a stupid coin puts him in so much danger. He won't be holding his own money without very close supervision anymore.

We have a big homeschool picnic tomorrow. Maybe I will find time to get some more planning done around it!

What do you pack for a trip the first week in November?

 

[kdzbear]

I just wanted to let you know that I have been following Deyki's adventures over the past few weeks while we moved. I am so glad that the medical stuff is going well. I am also glad that he coughed up the coin. My brother swallowed a much smaller quarter once and we had to wait for it to pass. It came out purple! I can't wait to hear more of your trip plans. I also have the same question about weather in Orlando in November! I can't wait to read more!

 

[Terry718]

"It's a school day, again? Don't we ever get a break?" Ugh! Only 4 days into kindergarten!

I actually spit my coffee reading that!! Too funny!

I remember when Katie swallowed a coin and it got stuck. The look on her face when she couldn't breathe will haunt me forever. Thankfully, I did the heimlich (sp?) which no parent should ever have to do on their own child, and she coughed it up - the force actually made the coin fly across the room. Afterwards, I did the same thing you did - just held her. Then I went in the other room and had myself a good cry! Oh the memories....

 

[MomTo4+more]

She's walking!! Baby Michelle started walking today. She had taken a step here and there, but today she started walking ten feet at a time. She is getting up from the middle of the room and walking! She is 18 months old today and celebrating by walking!

Unfortunately, our little walker won't be joining us in Disneyworld. You see, she isn't technically mine. I have temporary guardianship of her, but her parents are still involved. They still want to have her back with them one day. I don't make all the decisions concerning her, and it was decided she should stay back. Ultimately, that's probably what she will enjoy more anyway. She scared of characters. The worst place in the world for her is a stroller. She will stay back with a friend who is happy to care from her. She will be lavished with attention!

Had to share the fun news of a new walker in the house! There's nothing stopping her now!

 

[myasma]

She's walking!! Baby Michelle started walking today. She had taken a step here and there, but today she started walking ten feet at a time. She is getting up from the middle of the room and walking! She is 18 months old today and celebrating by walking!

Unfortunately, our little walker won't be joining us in Disneyworld. You see, she isn't technically mine. I have temporary guardianship of her, but her parents are still involved. They still want to have her back with them one day. I don't make all the decisions concerning her, and it was decided she should stay back. Ultimately, that's probably what she will enjoy more anyway. She scared of characters. The worst place in the world for her is a stroller. She will stay back with a friend who is happy to care from her. She will be lavished with attention!

Had to share the fun news of a new walker in the house! There's nothing stopping her now!

Congratulations!!!!!!!!!!!! We wait months for this mile stone to happen then spend the next 18 years chasing them around. Happy Chasing!!!!!!!!

 

[Sandy321]

How's the packing list?

I'm sure there are lists and lists - have you checked out mouseforless.com? I know that's where I get the journal pages printed - and then take it to Kikos to bind it - every day there is stuff for them to "do" learn... some are "Fill in the blank" some are more detailed - but they are really cute - also I think they have a packing list too!!

Yep - found it! : http://www.mouseforless.com/downloads.shtml#trip
For Your Trip

Cast Member Appreciation Certificates
Character List - Walt Disney World
Disney Luggage Tags
Freebies to collect on your trip
Gratuity Envelopes
MFL Community Information Card
MFL Pocket Guides
Mousekeeping Envelopes
Pin Pixies
Planning Kit - Walt Disney World
Stroller Tags
Travel Journal - Adult
(A travel journal made just for kids can be found in the For The Kids section)
Trivia Questions - Walt Disney World
Trivia Questions - Disneyland
Ultimate Packing List
Ultimate Packing List for Cruises
Word Search Puzzles

and then for the kids (look on the left side of the page for the downloads!!)
For The Kids

Disney Homework Pages
School Excuse Letter
Kids Travel ID
Chainlink Countdown
Kids Travel Journal
Word Search Puzzles
Trivia Questions
Walt Disney World Character Find List
Autograph Pages
Autograph Book


Have Fun!!

Congrats on the new walker in the family!!

 

[Matt1026]

How wonderful is that. Those milestones are so special. I agree with the others I could not wait for that first step and now I wish they would slow down so I catch up. Enjoy!