Quick Update

Many of you have asked how Caleb's doing since surgery on Tuesday.  We've been able to space his pain medicine from every 4 hours to every 6 hours & decrease the dose from 12 mL to 8 mL.  He's still having some incision pain on his abdomen & his head.

Caleb is walking with assistance for a short distance.  He can move his right leg and arm, but prefers not to move them at all.

He still can't seem to get comfortable in any position for longer than 30 minutes. We spend most of the day and night moving him from one position to another.

We're praying we will start seeing more improvement in his mobility very soon.

And.... We're Outta Here!

We've just had our morning meeting with the neurosurgery team. We're going home today!!! Caleb is doing well from surgery. Still in some pain from the abdominal incision (I can TOTALLY relate to that one), but feeling better.  He's more alert this morning as well. He's still working his breakfast of chicken nuggets, mac & cheese, grapes & strawberries. He's just finished taking 8 syringes full of medicine and cooperated the entire time!!!!! Not what I'd consider dessert, but if it works.

Yesterday before Caleb came out of sedation, we had them put him in a diaper because we knew he wouldn't be able to get up to go to the restroom. Caleb can't stand diapers. He automatically assumes he is a "baby" because he's wearing a diaper. We kept telling him that they were special post-surgery pants & he only had to wear them until he could walk to the bathroom himself (with help, of course). We even told him that sometimes even grown-ups have to wear diapers too, but he didn't believe us & kept calling us liars. "Diapers are only for babies" was his statement.

This morning, he says, "I think I like wearing these diapers." That's when we decided it was time for him to get up and walk! As long as he didn't like them, we were okay with him wearing them because we knew he wanted out of them. Once he decided he liked them, we wanted him out because we don't want him used to them.

I hope everyone has a wonderful day today. We believe ours will be!  Continued prayers for quick recovery, less pain, and more cooperation taking meds.

Sleeping (kinda)

Caleb's up in the room and trying to rest. However, he's in a lot of pain right now. Partially from the tubing that runs from his head to his abdomen, partially from the incision in his abdomen. We're trying to keep the pain under control, but he spit out half of his pain medicine when he first got back to the room and it's 4 hours between doses.  Please pray for quick pain relief for him and that he cooperates when it's time to take meds again.  It's hard to keep the pain under control if he doesn't take ALL the medicine.

His friend, Sydney, from radiation treatment is also in-patient this week with chemo treatments. She's come by to see him already. That gorgeous little 4-yr old sure knows how to ride an IV pole down the hall! Forget walking, she's riding in STYLE!!! ;)  We are excited that her last MRI came back cancer-free!  I am so glad we've had the chance to become friends with Sydney, her mom, Erin, and her grandparents.  Please keep them in your prayers as well as they continue the remainder of her treatments to make sure it stays gone. To learn more about this amazing little girl, check out her blog at:  http://www.caringbridge.org/visit/sydneymayrell

Super HUGE thanks to Beckie & Brandon for continuing to let Caden stay with them. It's comforting not having to wonder if he's doing okay in the midst of all that's going on with Caleb.

Again, we love all of you and thank you for your continued prayers.

Angel

Caleb's Out of Surgery

Caleb's surgery is complete and he is in the recovery area now. Richard is there with him. Dr. Swift said the surgery went well with no complications.  Caleb has 3 small incisions on his right side: 1 near the top of his head, 1 around the bottom of his head near the neck area & 1 on his abdomen.

Thanks so much to everyone for praying for us. I know we keep saying this, but we sincerely appreciate everything that has been done for us. We have been blessed with wonderful family & friends who support us every step of the way.  May God richly bless each and every one of you.

Down in prep area for surgery

We're downstairs in the pre-surgery area getting ready for Caleb's surgery. The surgery is scheduled from 11:30 to 3:30 then recovery before going back upstairs. The nurse down here asked him if he wants a build-a-bear. Caleb says, "make it something other than a bear because I already have enough bears." Now there's a boy who thinks ahead!! He's already got his post-surgery meal picked out: cheeseburger, pop tarts, macaroni & cheese, grapes, sugar cookie, and a water.

Please continue praying. We ask for wisdom and skill for the surgical team. We ask for strength and peace for us as we wait to see how successful surgery is. We ask for minimal pain & quick recovery for Caleb.

Admitted Again, Sugery to Follow

 Well... we came to the hospital this morning for Caleb's MRI. He had an appointment at 10 am with the neurosurgeon.  The neurosurgeon reviewed the MRI & said that the cyst did appear to be getting smaller, but the ventricles were still getting larger. Caleb's been showing significant increase in drooling & right side weakness. He's having difficulty keeping his eyes open because of the pressure in his head. He is also having great trouble expressing himself. It's like he knows what to say, but can't get it to come out. The neurosurgeon advised that they should go ahead with the shunt placement.  So, we've been admitted again.  Caleb is not happy about having another surgery and neither are we, but we do what we must to help him.

So, surgery is scheduled for Tuesday morning. We're still not certain of the time but it should be during the morning hours.  We've been told that he should be released within 2 - 3 days after surgery if all goes well.

He's looking forward to going home and playing with his Zsu Zsu pets. He hasn't even asked to play with anything for a couple weeks so I'm excited about that.

We want to extend a HUGE thank-you to Beckie & Lisa for helping with Caden while we're here. And another HUGE thank-you to Nell for watching out for our pets.


Please keep praying for us. We've got a long road ahead of us still.

We're Home!!

We got discharged this afternoon and are now resting at home. It's good to have all of us together under our own roof again.  Docs were able to drain a little out of the cyst before they hit a blood clot. We're home for the weekend and will go back on Monday for another (quick) MRI to see how things look. As long as Caleb's not vomiting or complaining of stronger headaches, we should be okay. If he starts either of those items, we have to call the neurology clinic for instructions. That could potentially mean another stay in the hospital with surgery.

So, we're praying for improvement with no headaches or vomiting.

Thanks so much everyone! We love and appreciate each and every one of you for praying for us through this time.

Angel

No Surgery At This Time!!

The meeting with the neurosurgeon was very productive this morning.  He feels comfortable with not putting in a shunt. Instead, we will drain the cyst again.

So, they've already placed the numbing cream on his reservoir site & should be doing the procedure within the next hour or so.  This can be done here in the room & then we can go home as soon as we're ready!

Woo Hoooooo!  Thanks so much for all your prayers. Our God is AWESOME!!

Possibly More Surgery

Well, I got to the hospital today just after the oncology team and the P.A. for neurosurgery got to the room to go over the MRI results.  There is definitely still blood in the tumor. The ventricles have not gotten any smaller, but have gotten bigger instead. They are not certain if there is pressure there as well or not, but, based solely on Caleb's symptoms, they believe there is some pressure as well.  At this time, the next medication we were supposed to start is no longer an option because of the potential for causing additional bleeding in his brain.

We are supposed to meet with the neurosurgeon again Thursday morning around 10 or so to see what his thoughts are for next steps to relieve the potential pressure and the associated pain, if possible.  Based on our conversation with the neurosurgery P.A., we think he is probably going to suggest an additional surgery to place a shunt to drain the spinal fluid build-up.  This could happen as early as Friday, but is not a definite yet.

We have Caleb on pain meds every 4 hours again to help relieve pain. He's having marked decrease in motor functions, vision & thought processes right now. He told us tonight that, "My eyes won't do what I want them to do."  When we asked him to explain, he said that he wanted to keep them open to watch something, but he couldn't get them to stay open and he wasn't really tired. However, he has been asleep for most of the past 3 days and nights.

He's met with PT & OT while there.  PT was going to get him a walker to see how he could do with it, but since he's not able to grasp with his right hand, he's not steady enough to be able to use a walker right now.

Too tired to type now (and the cat won't get off my arms). Going to bed. More tomorrow, hopefully.

Please keep praying.

MRI Rescheduled to Today (1/19)

Caleb started feeling nauseous again last night around 8:30 or so, so they decided to reschedule the MRI to Tuesday morning.  Docs want to take a look to see what's going on. Caleb has just left the room to head downstairs for the MRI.

Please pray that we find the answer to why there is bleeding, how to stop it & that Caleb starts feeling better.

MRI Scheduled for Jan. 20th

Right now we are in a "wait & see" mode. They have an MRI scheduled for Thursday and want to keep him here until then so they can continue to monitor his condition.  He was vomiting a bit this morning & they said if it continues that they will do the MRI sooner.  There has been talk of possibly having to put in a shunt, but timeframe &/or necessity is still under consideration.  Bloodwork results show his potassium level is low at 3.1 & his platelet function assay is at 103 (not sure what this means). 

He met with PT & OT this morning. They are going to work on getting him a walker to see how he functions with it.  Otherwise, he's holding his own. His appetite is back, no fever & he's sleeping.

More news when we get it.

Angel

Admitted Again

Caleb was admitted last night. He was showing evidence of a fever on his left side but not on his right. I've never heard of such a thing.  They ran some bloodwork & did another head CT. The CT showed signs of some bleeding.  Please understand that I really can't give a lot of details, because I don't know them. I'm at home with Caden. All information I'm getting right now is from Richard, who is with Caleb at the hospital.

My understanding is that Caleb is stable.  Platelets are normal, but may not be functioning correctly. Doing more bloodwork now.

Will probably be in for a couple days at least.

I'll update again when I have more information.
Angel

Back to the ER AGAIN!

Caleb had been doing better over the weekend. He'd gotten up to 8 hours between pain medication doses and was walking from the kitchen to the living room almost totally by himself.

This morning, he seemed a bit more sleepy than usual, but I figured he was just tired. He was not eating as much, but I chalked it up to the reduction in steroids and his appetite leveling off again.  Around 2 pm, he mentioned that he was breathing fast again. Since he'd just eaten, I figured he ate too much again. About 4:45 pm, I woke him up to get ready for dinner. He said his breathing was still fast. I went to check him and he seemed unusually hot. Temp checked at 101.7 F.  Called the clinic & waited. While waiting, we tried to get him to eat dinner -- jambalaya, which is one of his favorites.  He didn't want to eat anything.  An hour later, temp checked again at 101.8 F. Called clinic back since we hadn't heard from them yet, which is very unusual in itself.

Our doctor called back, we told her what was going on, she said bring him to the ER. They'll check his bloodwork & do another CT to check the status of any swelling.  Richard took him & I'm at home with Caden.

On the bright side, he hasn't complained of his head hurting all day & hasn't had any strong pain meds since 3 am. He had Tylenol at 7:30 am, but nothing since.

Guess I'll go pack a bag, just in case.

Recovering Nicely

Caleb is doing very well recovering from his surgery on Tuesday.  He's able to go almost 6 hours between pain med doses. He's walking again instead of being carried everywhere, although most of the time he's still holding onto our hands for balance. He's even taken several steps totally by himself several times today!!!!!  He's still sleeping quite a bit, but doing well otherwise.

Our biggest obstacle today was washing his hair. I have to gently scrape any scabs from his incisions so it will heal better.  He kept begging me to stop because it hurt so bad. We were both crying and I was so glad when it was over. I am NOT looking forward to doing that again tomorrow. I'll be so thankful when these incisions heal and I don't have to worry about them any longer.  Seeing him in pain and knowing there's nothing I can do about it is one thing. See him in pain and knowing I'm the one causing the pain is totally different.

On a side note, Caden & Samson came home today! Caleb has been asking for them for days, but he was already asleep when they got here so he hasn't seen them yet.  And... Caden got moved to a toddler bed tonight!

Thanks again to everyone who has been praying for Caleb and the rest of us. It makes it all a bit easier knowing that people care enough to take time out of their day to think & pray for us.

We're Going Home!!!!!

After a relatively good night, we've gotten approval from the docs to go home!! We should be outta here by noon & home by 1pm. It will be so good to get us all settled back at home.

After meeting with the oncologist yesterday, the plan is now to wait about 2 - 3 weeks before starting the next phase of treatment to give his incisions time to heal.

Thanks so much for all the prayers. We'll continue to keep everyone updated with Caleb's progress.

CT Scan Results

The CT scan showed good reduction in the size of the cyst, that the catheter is in the correct spot, and the ventricular tube swelling has reduced enough that the spinal fluid build-up is already draining some. The neurosurgeon says Caleb is responding well enough to be discharged when we feel comfortable doing so.  We have chosen to spend at least one more night here. Caleb has been asleep for the majority of the day so far & has not eaten very much at all (4 pop tarts & 3 powdered donuts since 2am). He's also not drinking much at all.

The docs are adding a muscle relaxer because Caleb is complaining of a very stiff neck (incision & staples there) and not being able to turn his head to the left. We're switching him off the pain medication, which was being given every 4 hours because of pain from the surgery itself, to Tylenol to see how he manages the pain.  The steroid dose has been cut in half!! We're also weaning him off the IV fluids to try to get him drinking more. We're hoping these actions will help with the edema situation.  Last night, his right hand began swelling more than his left, so we've had it elevated all night.

This morning he woke up screaming, "Mommy, look at my hand!"  His left hand was covered in blood, as was his chest & his face.  His nose was bleeding pretty significantly. We immediately called the nurse & started trying to get him cleaned up. We got him all cleaned up & the nurse said it was probably because of the dry air here & that his nose had just gotten irritated, but they'd keep an eye on it in case it was something more. About 5 minutes after she left, he admitted that just before it happened, he'd been sticking his finger up his nose because it itched. (I really thought we were past the "picking the nose" phase with him!) So, I told him that if his nose starts itching again to let me know & we'd put some saline spray in his nose to help moisten it. It seems to be working for now.


We're still waiting to speak with the oncology team about next steps & will update again when we have more information.

Time for CT Scan

Caleb's on his way downstairs for his CT scan.  He actually woke up about 5 minutes before they got here because he had to potty.  We were just getting him settled back in the bed when they arrived. I hope Caleb is there with his good mood and not his temporary alter ego, "Steroid Boy."  That is one mean alter ego!

Caleb still does not like to be in a horizontal position. But he is down about 20 degrees more than he has been. With the CT, he has to lay totally flat & the head positioner is not "funky comfy" (Caleb's new term for being really comfortable).

Finally Eating Solid Food

We got the orders released around 2:00 & immediately ordered Caleb a cheeseburger with mac & cheese.  By the time it came up, Caleb was sound asleep. He woke up around 3:30pm & asked to eat. He wanted me to cut his cheeseburger into small pieces. By the time I got it cut, he was almost asleep again. I asked if he wanted to eat or sleep & he chose sleep! I can't blame him at all.

When he was down in recovery, we were telling the anesthesiologist how much Caleb likes "sleepy medicine." Caleb says, "I don't like this sleepy medicine. It makes me too sleepy."  That was because they had to use more pain medications than anesthesia because of the heart issue.  The morphine is what's making him so sleepy right now.

So... He just woke up again & is ready to eat. So far he's had 1/2 a cheeseburger, mac & cheese, 4 powdered donuts & some water.  He's ordered: chicken nuggets, tater tots, carrots, a banana, 2 bottles of water, brownies, sugar cookies & pop tarts for his next meal. It should be arriving any minute.  Looks like he's got his appetite back!

Surgery Over & Resting Quietly

Caleb's surgery is over and he's back in the room resting quietly.  The doctors said he did really well through the surgery. They were able to pull about 8 cc of fluid from the cyst. A CT scan is scheduled for tomorrow to check the progress. He has an incision at the base of his skull where the catheter was inserted. There is a tube running under the scalp midway up his head to a incision about 3 inches long where the reservoir was placed.

He's already had 3 popsicles and is ready for his chicken nuggets, mac & cheese, & a cheeseburger. As soon as the orders from the docs are released, I can place his order. We're going to let him sleep until then.

Thanks so much to everyone for all of your prayers. We so appreciate it.

About to begin surgery

We are down in the pre-op area waiting for the docs to come in. I am so ready for this to be over. We're about 15 minutes from start time now.

Please pray that all goes smoothly. Lord, please guide the hands of the surgeons and everyone else involved in this surgery. Let them successfully accomplish their goal and more. give us strength and peace through the waiting time. Keep Caleb strong and let there be no complications. We ask these things in the mighty name of Jesus, amen.

New Development

As I mentioned in the last post, Caleb's been having some adverse reactions to the increase in steroids. They've already decreased the steroids to 8 ml per day.  Today, we met with the cardiologist about his heart. They did another echo-cardiogram and it's showing some of the same problems as back in November. They are fairly confident now that the issues with his heart are a result of the steroids since it only seems to appear with an increase in steroids.  They are discussing this development with the neurosurgeon & the oncologist to determine how to proceed.  The cardiologist does not believe that this will impact the actual surgery itself, but they may need to take some additional precautions before, during & after surgery.

Meanwhile, today we've been experiencing issues with his oxygen saturation levels dropping into the low 80's. So, they've put him on oxygen for a bit. It's currently back in the mid 90's.  We've temporarily turned the oxygen off to see if it continues to stay in the mid to upper 90's.

Thanks again for all your prayers. We so appreciate it.

Still in Pain

Doctors increased the steroids yesterday from 3mg per day to 12mg per day because even the pain medicine wasn't decreasing Caleb's headaches at all. However, he's having some adverse reactions to the increase. Today, his breathing & heart rate have been erratic all day. Doctors did a chest x-ray to make sure his heart & lungs were still working properly. All showed clear except for the excess fluid building up everywhere. My sweet boy is still in so much pain right now. Every part of his body hurts right now and he's so swollen he can't even cross his little fingers. He hurts to walk. He hurts lying down. He hurts to be touched. We added a foam mattress topper to his bed to help with the pain a little. We've increased his pain medication so that he takes it every 4 hours if awake. If he's asleep, we let him sleep & give it as soon as he wakes up.

Docs have decided that he isn't handling the increase in steroids well & decreased it to 8mg per day. His surgery is scheduled for 7:30 a.m. CST on Tuesday morning.  It is supposed to last at least 2 hours.

He's resting for the moment, and has said that the bed does feel a little better now. I'm still concerned about his heart rate, blood pressure, and respiration -- all of which are high right now.

I know that the surgery is very risky, but I will be so glad when it is over and Caleb (hopefully) finally has some relief from the pain. It's so difficult seeing him in so much pain and knowing that I can't do anything to make it better. I'd gladly take his pain if it would make him feel better.

Please continue to pray for us. We need strength, peace, relief from pain & quality sleep most of all.

Thanks!

Caleb and his friend, Stacy, enjoying popsicles.

Staying Inpatient Until After Surgery

We met with the docs this morning and they've decided they want to keep Caleb inpatient until after his surgery. They're still a bit concerned about the blurred/double vision problem he's been having. They want to keep him here so they can address any potential problems that may arise. So, we'll be here until at least Wednesday.

Thank you for your continued prayers. They are very much appreciated.

Another Night in the Hospital

Well.... We were supposed to be discharged today after Caleb's 2nd MRI of the week. However, he's started having some more severe pain in his left eye. He says it feels like someone's trying to poke his eye out and it feels watery all the time.  He's also begun having blurry/double vision problems. So, the docs want us to stay another night just to be on the safe side. Believe it or not, Caleb is glad he gets to stay longer. He did not want to go home yet. He wanted to get some more "sleepy medicine" (anesthesia).  That child is a bit strange sometimes.

As of now, surgery is scheduled for Tuesday. Please keep the prayers coming. We're not out of the woods yet.

Surgery Definitely Being Scheduled

We've made a decision on Caleb's surgery. We will definitely be having surgery. It will be either Monday or Tuesday of next week.

We were presented with four surgery options. Two of the options address the problem with the cyst, while the other two only address the fluid build-up which is just a symptom of the problem. We believe that the best course of action is to address the actual problem and not just a symptom.  Both of the options addressing the cyst involve going into the brain stem & into the tumor to get to the cyst, which is extremely risky. Of those two options, one stands a better chance of successfully draining the cyst than the other. This procedure is not a normal procedure, but is specific for Caleb's situation.

Because the operation is very delicate, we have to have another MRI done on Friday. This MRI will have very detailed mapping done to make sure they are accurate with incisions. Caleb will have several "spots" placed on shaved portions of his scalp to help guide the MRI mapping. Those will have to stay on all weekend. Because we didn't make the decision until we had a second discussion with the neurosurgeon (Dr. Swift) this morning, there were no MRI spots available for today.

After the MRI is completed, the neurosurgery team will review it and decide whether Monday or Tuesday is going to be best for surgery. They are also in contact with Caleb's cardiologist to make sure everything goes as smoothly as possible. 

We are expected to be released from the hospital Friday after the detailed MRI mapping is completed and readmitted the day of surgery. Our understanding at this time is that Caleb will go directly to ICU after surgery because he will be able to have one-on-one nursing care for the first 24 hours. If all goes well, he will be transferred to a regular room after that for a day or two. The surgery is pretty risky, but recovery time is fairly quick (2 - 3 days for best case scenario).

This was not an easy decision to make. We have prayed about it and are confident that we're making the right one. Please join us in prayer that all goes smoothly and no neurological issues arise as a result of going into the brainstem.

Admitted to the Hospital

Tuesday morning Caleb awoke with a headache. We checked him for fever (none) and gave him some Tylenol.  An hour later, we headed to PT. While bending over during one of his exercises, he said that his head still hurt.  I didn't have any medicine with me so figured I'd give it to him as soon as we got home. When we got home, he said his head still hurt. I gave him some hydrocodone with lunch.  An hour later, he said his head was still hurting just as bad, so I called the clinic. We got a call back right as dinner was finished cooking. When we told Dr. Leger what was going on, she sent us back to the ER for a CT scan.  We finally got the scan done and were told that Caleb has apparently developed a cyst near the tumor that is blocking the ventricles in his brain. The cyst is causing hydrocephalus (water on the brain).

The ER docs consulted with oncology & neurosurgery & all agreed to admit him for treatment. The plan is to go ahead with the MRI to be able to determine the next step. It will more than likely involve surgery. We're just not sure when at this point.

Right now, Caleb has gone down for his MRI, so we're in the waiting phase now. When he gets back, he still can't have anything to eat or drink until we speak to the neurosurgeon because there is a chance they may do the surgery today.

I'll try to post again when we know more.

Thank you for continuing to pray for us through this time.

1st Physical Therapy Appt.

Today was Caleb's 1st physical therapy appointment. He balked a little at the beginning but by the end, he wanted to stay.  He rode a modified bike that had straps on the feet & around his waist to keep him balanced. His therapist, Phoebe, said that we could order one of the bikes for use at home. When I asked her how much it would cost, she said they are donated by the company that makes them! How awesome is that?! He had a really good time riding the bike & is ready to go again next week.

He also "went fishing"  by squatting to retrieve weighted "fish" from the floor & throw them to"shore."  He then used frogs to play tic-tac-toe with his right arm only. He loved it and did very well with it.

Oh! Quick side note. When we were on the way home from the ER on Monday morning, Richard & I were talking together. Caleb started talking about something and we didn't pay attention. So he says really loud, "Fine! Since no one is listening to me, YOU'RE FIRED!"

Gotta love a kid with a sense of humor!

ER Visit -- Jan. 2/3

This is a copy of an email we sent to Caleb's oncologist yesterday morning:
===================

We have not really noticed an improvement with Caleb's Balance or walking. He actually seems to be getting slightly worse. He seems to not be able to walk a few feet without needing someone to hold his hand or hold on to the wall for balance.

He has gained another 10 pounds totaling 65 lbs.  Also he appears to be having difficulty breath, especially after eating. We think this might be cause of the weight gain. We would like to talk to the dietitian during the next clinic visit if possible.

We are getting more concerned about his health.  Also we have dropped the steroid to 2 ml per day.

We will be calling clinic today for advisement but wanted to let you know.
====================

It was after 7pm before things calmed down enough around here for me to call the clinic's after-hours number.  I was pleasantly surprised when Caleb's oncologist was the one who called me back.  She had just had a chance to read the email we'd sent that morning & was quite concerned about Caleb. One of the things we mentioned by phone was that Caleb seems excessively thirsty & urinates much more than normal.  The previous two nights he had been up at least 7 times per night to go to the bathroom.

Dr. Leger advised us to go to the ER so we could have his heart, lungs, sugar levels, & kidney function checked out. She said that if one of those tests came back abnormal, we would probably be admitted & we'd work on moving his MRI up from the 11th. Otherwise, we'd be sent home & keep the original MRI date.  We packed an overnight bag "just in case."

We sent Caden to the neighbor's house (thanks Nell!) to spend the night since we had no idea how long we'd be. We finally got out of the house around 10pm to head to the ER.

This was our first trip to the ER since diagnosis, so we weren't sure what to expect since Dr. Leger had already called the ER with orders for us.  We were immediately sent to an isolation room to keep Caleb from being exposed to anyone else. All of the staff we saw worse masks to help prevent contamination as well.

Almost as soon as the first staff person arrived, Caleb asked for a popsicle. They wouldn't get one until the doctor had opportunity to check him out thoroughly. He was told that as long as his labs came back okay he could have one.  When asked how many popsicles he wanted, he replied, "As many as I eat."  Another "Random Burst of Brilliance" from my little man!

They accessed his port (first time since Nov. 29th) to draw blood & in preparation for potential admission. He was NOT happy about that. They took a chest x-ray, placed monitor leads everywhere & got two urine specimens. The first one we did as soon as we arrived because Caleb said he needed to potty. We weren't sure when he'd go again & didn't want to get held up waiting for him to urinate before we could leave. They didn't get it sent off in time & had to collect a second specimen after all.

His sugar level came back at 91, which was in the good range. All of the other tests they ran came back "normal" as well. The doctors are mystified that there are no abnormal reports. They could not find any reason why he was having those symptoms, so they dismissed us to come home. That was after 4:30am.

Believe it or not, this is the time that Caleb chose to have a major meltdown. He didn't want to be dismissed from the ER. He wanted to be admitted & kept screaming, "I don't want to leave."  We finally got him to tell us why. Apparently, the hospital has the "best popsicles" & he wanted to be able to eat as many as he wanted.  We finally managed to get him to leave with the promise of stopping at I-HOP on the way home for breakfast.  Wouldn't you know that the I-HOP we stopped at is not a 24/7 restaurant! It was 5:20am when we pulled into the parking lot & they didn't open til 6am. We didn't want to wait, so Caleb decided he wanted a cheeseburger from Whataburger instead.  We picked it up & went home. We finally got home around 5:45am. He ate his burger & some cereal then headed to bed. We finally got in bed after 6. Caleb was back up by 7:45am.

Richard & I are still trying to rest so we set Caleb up with a new DVD he just got (Transformers 25th Anniversary Seasons 3 & 4). About 9:15, we hear Caleb screaming. I rush out to find out what's wrong. I finally find out that the little darling had gotten a Cheerio lodged in his nose!!! Apparently, he's pretty determined to get those popsicles because I sure thought for a moment that we'd be heading back to the ER!  We did manage to dislodge it on our own & had another talk about where food goes & how it gets there.

And another "normal" day begins.

Thanks to everyone for praying for us last night when we left. We appreciate it so very much. The doctors may be mystified, but we aren't. Prayer works!  Let's keep praying & believing that his MRI comes back with the same response of "I can't explain this, but there is no tumor there any longer."

I'm going to take a nap now, while the boys are napping. Gotta get sleep when I can these days.

Angel