Miracles Never Cease - Pt 4/4

Donavon LOVED all the cards that were sent through the facebook event "Get Well Soon, Donavon"  He had just under 80 (definitely a record). Thank you to all who sent cards and well wishes!

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Tuesday morning, August 16^th, Donavon was finally asleep after a long, difficult, and amazing night.  The residents came in just two hours later to check on Donavon.  I couldn’t believe how many students came with him!  There were at least 8 if not 10 students with the resident!  They all filed into our room as Donavon slept and I sat in the chair, groggy but trying to pay attention and ask my questions. 

They wanted to wait to see how Donavon would react to sitting up today to give him solids but they would give him liquid and soft food to start.  That meant popsicles, sherbet, juice, sprite, etc.  I think in two days, Donavon went through a 12 pack of sprite!  Donavon got up shortly after and wanted McDonalds.  (He knew about the McDonalds on the 1^st floor.)  He also wanted me to go to the gift shop and get his Curious George beanie baby.  I took the opportunity to go get breakfast and grab his beanie baby.  They did give him all of his medication so his mood was starting to even out and he wasn’t so fidgety. 





Donavon's first outing, Tuesday (still with tubes and wheel chair)

The hardest part of the day was getting him to stay in the bed.  Especially once they gave him the ok to get into a wheel Chair and go to the play room.  That didn’t last too long, though because he got tired and in pain quickly.  His body didn’t want to stay but his mind did.  J  He learned how to use the trigger for pain real quick.

By the end of the day he had gotten up twice!  At that point, they let him have a full meal!  He ordered a huge dinner!!!  We had a much better night which started with prayer and then more praise and worship music.  He slept great!  I was in prayer off and on, praying over Donavon, our family, and many other things including just being still and quiet.

Wednesday morning, our Residents come filing in, bright and early.  The young doctor looks at me and says, “Okay, let’s get him out of these tubes and see about getting you home today!”  “Really?  This soon?”  I was shocked.  We were prepared to stay until Thursday but so ready to go home!  Donavon was doing so well, walking and eating that they were ready to send him home!  From then on, it was a waiting game, trying to get out as early as possible so that we didn’t have to drive at night.  They wanted to see a few other things happen after they took out all the tubes. 





Donavon, with the AWESOME group from the Navy!

So, Donavon passed the time by painting, playing Wii, watching videos, visiting with the Navy visitors (COOL visit, by the way), and playing the games on the in-house TV channel for the kids.  He won twice and got a new pillow pet from the activities director! 

By 5:30pm we were headed home!  God was so good!  Most kids stay the full three days.  Donavon was ready to go after 1.5 days!!! 

He came home and was treated like royalty for 4 weeks!  He LOVED all the attention and especially loved having Daddy off for the rest of the week!  It was such a great time of healing and rest for our family. 

Donavon had his stints removed on September 14^th and is back to normal, running, playing, going to school and Royal Rangers (Christian scouts)!  Every time I look at him I see God’s hand on him!  He is a miracle!

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Donavon painting (his favorite art activity) in the play room.



Miracles Never Cease - pt 3

Photo:  Donavon at Riley Children's Hospital (with his pillow and blankets), Tuesday, August 16th at about 8am.  He was so tired from the rough night before.

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We got into our room and went through a bunch of questions once again (being admitted, they go through a lot of the same questions as when we checked into Surgery).  Our nurse was awesome, by the way.  You’ll see why but we absolutely loved her!!!

Donavon was beginning to feel the pain meds ware off.  Remember, he was off all of his medication so not only was the ‘epidural’ wearing off, he was also feeling the effects of not having his meds all day.  He was scared, anxious, in pain and nothing was soothing him.  I went between the nurse and Donavon for about three hours.  We prayed, I stroked his forehead and held his hand.  He would calm down but as soon as I started to back off, it would start all over again.  The tears, the writhing, the crying, the restlessness and indescribable agony continued.  They gave him a few different medications that didn’t seem to do anything but make him more agitated.  As I was praying again, I heard in my spirit “praise and worship music”.  I knew God was dropping wisdom into my spirit.  Donavon’s favorite praise and worship leader is Jason Upton. 
(*side note* - If you have a chance, look him up on Youtube and listen to him.  He is anointed!)
The nurse was on the phone, with the on-call resident for Dr. Cain, discussing options to help Donavon.  He ordered a “pain cocktail” which is a combination of medications to help kill pain, help him calm down, and help him sleep.  As she was on the phone, I was setting up my laptop on Donavon’s hospital table and put it next to the head of his bed so he could hear it.  As the first song began to play (Psalms 23), I anointed Donavon with oil and began praying and praising God quietly.  Donavon began to calm down.  He was lying quietly and began to fall asleep.  I stopped stroking his hair and sat back in the chair, praying.  He was still calm.  I could feel the sweet presence of the Holy Spirit falling in the room.  It permeated ever corner with peace!  The nurse walked in shortly after Psalm 23 ended and went on to the next song.  The first words out of her mouth were, “Wow… It is so peaceful in here.”  She told me what the doctor ordered and that it we had to wait up to 20 minutes for the pharmacy to fill the order and send it up.  I told her that was fine.  She came back a few minutes later with another nurse and said, “See what I mean.  It’s so peaceful in here.”  One other nurse poked her head in and whispered, “Wow.”  (They could all hear Donavon screaming and crying just 20 minutes ago!)  This nurse asked me if I needed anything and I said “no”. 

About 25 minutes passed by and our nurse came in with the medication.  She asked me if I still wanted to give Donavon the meds.  I said “Yes.  That would be good to help him stay asleep for a while.”  At that point I was going on 24 hours (up at 5am the last morning and it was now about 4:15am!) 

The music was still playing as I laid down on my bed and fell asleep for a couple hours.  As I began to fall asleep, with the music still playing and the peace that passes all the nurses understanding hovering in the room, I couldn’t help but be amazed at God.  How great and awesome, mighty and loving, caring and more than any describing word could ever express is our God.  He who calms the storm and holds our peace in His hand loves us so much!  I worship Him because He is my God! 

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Photo Caption:
Excerpt from the song, Sometimes He Calms the Storm by Scott Krippayne.
(*Click on his name to hear the song on Youtube*)

Miracles Never Cease - pt 2

Donavon was a great navigator.  He loves maps now that he knows how to look at one!  He pointed out roads and landmarks.  He also pointed out all of the White Castles along the way.  (We don’t have one in Fort Wayne and on his very first trip to Riley, we stopped at one on the way home.  Joe and all three kids had their very first White Castle’s experience!!!  They loved it!!!)

When we got to Riley Children's Hospital, we were a bit early so we decided to take our time and walk around a bit.  We found the gift shop and we also found McDonalds right next to the Cafeteria.  Very cool!  Downstairs, in the lobby, there is a huge water fountain which, if you sit around it long enough, makes you have to pee.  J  Finally, we took the glass elevator up to the Main Stay Surgery department and checked in.  Apparently, we were the last ones for the evening.  They asked all the questions and had Donavon weighed and put into a gown.  Then we waited… and waited… and waited.  With Donavon’s anxiety, we talked about the surgery off and on and when he became too emotional, we would pray, me and then Donavon. 

They brought in some water for Donavon because they didn’t want him to get dehydrated, and then informed us that Dr. Cain was running behind.  At that point we were shooting for 7pm.  We weren’t upset by the change of plans.  By all means, we understood that there were complications or delays in the surgery prior to Donavon’s and that pushed back schedules. 

(Side Note:  TV doctors are NOT real.  Doctors going from patient to patient with no breaks are totally phony.  After being in surgery, they have to take a break.  They have little lives in their hands and I wanted our doctor well rested before he began working with my son!)

The tough part about waiting so long was that Donavon had not taken his afternoon meds so he was beginning to ‘rebound’.  For those who are not familiar with this term, it is the act of bouncing back from his medicated state.  When Donavon rebounds, he gets emotional, moody, anxious, and clingy among other things.  The staff in the surgical unit was great.  He ended up with about half the treasure chest… A new beanie bear, two painting windows, two coloring books, crayons, a car, and a bunch of stickers!  We also were told that all the TVs had DVD players so we brought 4 movies from home.  Thus began the 3 days of Super Hero Squad, the TV series.  In between distractions, we prayed and cuddled.

7:15pm and here comes the nurse with some medicine and a rolling bed!  The meds were to calm his nerves!  AMEN!  After about fifteen minutes, Donavon was on cloud nine.  Giggling, smiling and talking, a lot of talking.  He was still nervous and we prayed.

At about 10 till 8, the OR nurse came in with the anesthesiologist and they told us they were ready for Donavon.    We prayed and Donavon gave me a hug and a kiss.  Then they wheeled my baby away.  It had been a long day and now it was finally here.  He was now in God’s hands, and the surgeon’s. 

I sat for a second after they wheeled him off.  The nurse came in and startled me out of my daze.  She told me I needed to get my stuff and go eat and then head to the waiting room for the OR nurse to call me.  I had small suitcase with both of our clothes, my purse, his book bag, and a train case with toiletries.  That was a lot for just me to carry, and was awkward to lug around Riley at 8 o’clock at night.  I headed for a burger and a coke since I didn’t eat lunch out of respect for Donavon and his fasting.  I got the food to go and headed for the waiting area on the second floor.  It was above the waterfall.  The first thing I did was eat.  In between bites, I set up my computer so that I could inform Joe of Donavon’s progress.  I had been in touch with him off and on with the computer but reception was not great in the waiting area of Surgery.  Now I had a good reception.  I loved video chatting with him over the week.  It helped us feel close and helped Donavon with anxiety! 

At 9:30 I finally got the first call from the OR nurse.  She apologized for taking so long since they try to call every hour.  She first told me that Donavon was a trooper and wanted to hold her hand.  Before they put him to sleep, he looked up at her and asked her if she would pray with him because he was a little nervous.  When she said that, I quietly shed tears of pride and joy for my little man.  All on his own, he trusted God and thanked him for the nurses and doctors.  She said, when they put the mask over his face, he giggled and went to sleep.  At that point, they began the work of inserting IVs and giving Donavon a similar procedure as an Epidural, called a ‘coddle’ so that he would not feel anything.  All went smoothly and Dr. Cain was now working on Donavon.  I have to admit that I was floored by the way God kept him calm and that he was a witness, even on the OR table.

Off and on I chatted with Joe and my mother to pass the time.  I played on the internet and went down to get some coffee from McDonald’s.  I prayed and did everything I could think of to stay awake.  I got the second call at almost 11pm.  She apologized once again for calling late.  The report was as follows:

Dr. Cain had scoped out Donavon’s bladder and kidneys.  There were some complications.  (My heart sank.  The surgery was only supposed to be 2 hours total.  We were going on 4 hours.)  Donavon was okay but they had to change some plans and do some things differently.  At ll o’clock they were trying to finish up and Donavon would be in recovery as soon as they start to close up.  Dr. Cain would come out and talk to me in detail about what took place.

I held back tired emotion and prayed, thanking God for keeping his hand on Donavon and the surgical team.  Then there was more waiting.  About 11:30pm, Dr. Cain came out of the elevator and walked over to where I was sitting.  He shook my hand and sat down in front of me.

Donavon is doing fine and they should be calling me back to recovery area real soon.  He started the procedure with a scope of his kidneys and bladder to see exactly what they were working with.  The wall of a bladder is supposed to be smooth and slippery like the inside of your mouth.  Donavon’s was inflamed and scarred and looked like basket weave.  Because of that, he had to reinsert his ureters (tubes that carry urine from the kidneys to the bladder) behind the bladder where the bladder wall was not as scarred.  This took longer.  He inserted two stints as well and tightened the opening of the bladder.  He removed the fluid pouches and last but not least, opened up the entry of his penis so that he could urinate more smoothly. 

As soon as I shook Dr. Cain’s hand, I called Joe and relayed the message to him and then to my parents.  They did not finish with Donavon until after midnight (the resident closing him up and the anesthesiologist beginning to wake him up plus whatever else they have to do to finish up) and called me back into the recovery room.  Donavon was the only child in a large room that looked like an ER with beds and cribs and equipment set up at stations lining all four walls and a big nurse’s station in the middle.  The lights were mostly out except the entrance lights and the lights above the nurse’s station.  Donavon was groggy and not moving much but definitely awake and (as the nurse informed me) started talking to her as soon as he woke up. 

About 15 minutes later, they checked his stats for the last time and packed up his IV and monitors to take him to his room.  I was grateful to be able to get into the room that we would be in for the rest of our stay.  Off we went to the 9^th floor!

Miracles Never Cease - pt 1

Summer seems like a whirl, now that it’s over.  Donavon's Birthday was July 2nd.  On a completely different tangent, he had prayed for a long time for a new bike.  That was all he wanted for his birthday!  We could not afford more than a few coloring books or hotwheel cars so we were also praying that God would provide a bike.  God heard our prayers and so did some amazing people.  They went to Walmart.com and ordered a bike to be sent to the stor my husband, Joe, works at! 

However, July was also the start of some difficulty.  We had an issue getting to Indianapolis.  With a family of five, money is not something we have readily available.  After much prayer, God came through with enough to make it to our pre-surgery check-up.  This was a miracle unto itself because we thought we would have to cancel our trip due to lack of finances.   

The 30 day check-up was to make sure that Donavon had not gotten worse.  At this check-up, everything looked relatively good.  He had been utilizing the techniques that they taught him to urinate which were helping to stabilize his bladder and kidney function. 

They gave me a couple papers with listed phone numbers and the date of our surgery.  It also had instructions of what was going to happen.  Donavon’s surgery was scheduled for Monday, August 15^th.  However, it is their procedure to schedule the youngest child first.  Since they didn’t know who was youngest until the week before his surgery, we would not be informed of his surgery time until Friday before his surgery.  For me, as a ‘planner’ this was difficult to sit and wait to find out how to plan our trip.  Aside from the fact that my son was going to have major surgery, I didn’t know how I was going to pay for the expense of driving down, paying for food and possibly lodging, and parking.  On top of that, I was concerned about what was going to happen at home with my husband and 4 year old twins.

The week before surgery came and we were still stressing about the money.  However, God was working some things out in the background.  The church I practically grew up in, where my parents still attend was involved.  One of the financial directors was in touch with my mother and had called me and talked to me about the situation.  On Thursday, he called to tell me that there was an envelope for me which enclosed $50 in gas vouchers and $100 in Visa gift cards which could be used anywhere.  This would cover my drive there and my food for the week! 

Now that God had covered the trip to Riley, it was coming down to the scheduling of the surgery.  They called around 11am Friday.  Donavon was originally scheduled early.  After talking to his nurse, they were willing to push his time back to later in the day!  Donavon was scheduled at 5pm and we would have to be there about 3:45pm to check in.  This was exactly what we had prayed for because I did not want to have to drive at 5am to get to Riley Children’s Hospital by 7am. 

The day of surgery was here.  We were all anxious, even though we tried to stay calm.  Joe had the whole week off to take care of the twins while I was gone, and to help me when I got back.  That morning, we had a small breakfast, since Donavon couldn’t eat anything, and sat together on the sofa, cuddling and being close.  It was a nice time.  I didn’t want it to end.  We gave our hugs and said our goodbyes.  The van was loaded the night before so all we had to do was load up the last few things and get going.  It was hard to say good bye with so many insecurities, but trusting God to see us through, we went.

 

Photo 1 (top): Donavon, riding his new bike for the first time! It was hard to get him to sit still long enough to take pictures.
Photo 2 (middle): My Husband, Joe giving hugs to Donavon before we left for Riley Children's Hospital, August 15th, 2011. Maya, squeezing in to be included in the hug!
Photo 3 (right): Nathan, Donavon, and Maya. The twins love their brother and didn't want to say "good-bye". (Nathan and Maya turned 4 on July 17th. Donavon turned 9 on July 2nd.)

The Summer of Blessings

 

Just before the end of the 2010/2011 school year, not long before our conference to get him tested for learning disabilities, Donavon went through a few tests to look at his kidneys, bladder and urological functioning.  For those familiar with the testing, he had a VCUG and some ultrasounds.  Since Donavon was still having difficulty with UTIs (Urinary Tract Infections), Donavon’s pediatrician felt it was necessary to look deeper into the problem.  We are very grateful that he did.

He sent us to Riley Children’s Hospital (THE BEST children’s hospital in the world…BARR NONE!) to see a pediatric urologist there and be further tested.  Since we live about 2 hours away from Riley, we began to schedule the trips to Indianapolis, Indiana and make them all day events.  For the kids, it meant getting undivided attention for 2 hours up and 2 hours back.  Games, music, snacks and no distractions!  LoL… ROAD TRIP!!!

What they found on our first 7 hour visit, was that Donavon’s bladder was so full that there were fluid filled sacs on his bladder (kind of like overflow pouches) and that urine was traveling back up the ureters (tubes) into the kidneys.  This was causing infections and damage to the bladder, ureters, and kidneys.  He also had ballooning of his urethra and the opening of his penis was small.  What this all boils down to is Donavon would have to have surgery to correct this issue.  If it went uncorrected, Donavon may have had eventual kidney failure. 

So, in the midst of dealing with the school, we now had a very serious physical condition to bring our attentions to.  The last of the school year was difficult.  We had to “potty train” Donavon to sit a little bit longer and make sure his bladder was completely empty.  We had to make sure that he was going to the bathroom religiously, every two hours.  Plus, we had to make sure that his kidneys were being flushed out frequently.  So we made him drink 6 – 8 oz cups of water, every time he went to the restroom. 

In July, we began to gear up for more trips to Indy.  In the midst of it all, we were able to get Donavon tested, by the school district, to determine eligibility for an IEP or an Individualized Educational Plan/Program.  (I’ve heard it both ways.)  He did great and qualified for exactly what we knew he would.  He is not mentally retarded.  He is simply having difficulty grasping abstract concepts and new material.  At this point, they wanted to schedule his case conference for the week we were in Indianapolis for his surgery.  We politely told them that the date they chose would not be possible and put them on hold until after his surgery. 

**On a personal note, I felt like I was spinning at times.  The financial strain, having the twins with me at all times, and trying to juggle everything, was sometimes overwhelming (understatement of the year).  The ONLY thing that got me through this summer was God’s grace and mercy.  There were times that I seriously thought I was going insane!  I thought I would snap and lose it.  God always had someone there to support me, even if it was a simple encouragement message on Facebook.  Aside from what I have been writing about, there were personal issues, a church split, family issues, and financial issues lingering in the background that not many people were privy to.  BUT through it all, God has kept us, preserved us, and purified us.  We trust Him and know that, even though we’re still not finished, we will come out of it all as pure gold!  (Zechariah 13:9, NKJV)

August was finally upon us.  Registration for school and surgery scheduled for the week before school started.  The hardest part of enduring the summer was, knowing for two and a half months that this surgery was coming and having to just wait for it. 

TO BE CONTINUED…
(Next entry, THE MICACLES!!!)

Another Fresh Start

Donavon started 1^st Grade with an awesome teacher.  (Since I don’t have permission to use her name, I will refer to her as Mrs. F.)  His medications were well balanced and we were beginning to see some normalcy to his behavior. 

This is where we started to see issues with his learning ability.  Since Donavon had repeated Kindergarten, the material he was learning was familiar to him so learning deficiencies were undetected.  It also didn’t help that his assigned teacher was gone for most of the year on maternity leave so substitute after substitute was brought in.  Each one had to learn the students and, of course, changed the classroom to their teaching style.

Now things were steady and he settled down into a predictable routine.  We began to see inconsistencies with comprehension and math.  He was doing great with concrete ideas but anything that required abstract thought was difficult for him to understand.  For example, he could understand the concept of 12 + 5 = 17.  However if you ask him, “What happens if you have to put fruit in lunch bags and have 5 pears and 12 peaches.”  How many lunches can you serve?”  He gets confused with what you are trying to get him to compute. 

He struggled a little bit but second grade was the height of the struggle.  Indiana has a standardized test called the ‘ISTEP’ test.  This is the product of the ‘No Child Left Behind’ initiative.  Every teacher is now trying not only to teach the principles of reading, writing, math, science, and so on, they are also now trying to teach the students how to take an ‘ISTEP’ test.  Donavon would try his hardest and would come home, proud that he took his time and did his very best only to have his hard work rewarded with a ‘D’ or an ‘F’.  Most of the ‘ISTEP’ practice tests were reading comprehension and writing.  It broke his heart to study for up to 3 hours a night with homework and still bring home mediocre to low test scores.  All of us were frustrated. 

One of the few saving graces was having Mrs. F for first and second grade.  The consistency really helped with his behavior and securities!  During one of many conferences with Mrs. F, I asked her “What else can I do?  I feel like there is so much more that could be done.  I don’t know the system or even what questions to ask to find the answers I’m looking for.”  She went to the head of the Special Needs program and spoke to her about Donavon’s situation.  The information I received is one of the main pieces of information I pass on to any parent that is in the same boat I was.  I don’t remember, word-for-word what she said but the gist was this…
“You are Donavon’s strongest advocate.  The classroom teacher can only do so much and when she does, it takes a long time to verify suspicions and then run the course of getting the child the help he/she needs.  However, if the parent requests that the child be tested to see if he/she needs assistance or extra services, the school is required by law to do so.”  At that point, I took a deep breath and did something I have never done before.  I wrote a letter insisting Donavon be tested.  At that point I really didn’t know what “tested” meant but I knew it would tell us more about his needs.

Once the letter was written and sent, the ball was rolling and I felt like I was finally getting somewhere instead of just sitting there in the mud hoping it would stop raining.  A conference was scheduled with Mrs. F, the special needs teacher, the vice principal, and me.  I decided that I was going to go in completely loaded with more than enough reason to get him tested so this is what I brought.  First I compiled a complete medication list to show that he was on behavioral medication.  Second, I acquired an official diagnosis from his pediatrician as proof of ADHD and any other medical problems that Donavon had.  It was printed on our Pediatrician’s letterhead and had his contact information as well. 

With all of that information, as well as Mrs. F’s observations and the special needs teacher’s observations (she had worked with him on reading and math with a hand full of kids who needed a little extra help), the vice principal filled out the paperwork to have him tested.  This was April of last year.  The vice principal did tell us that since it was the end of the year, he may not be tested until summer or the beginning of the school year.  We prayed that it would be summer so that he could get assistance ASAP!

Remembering that I am not a professional, just a mom learning and experiencing as I go, the advice I would give anyone in that situation is as follows:

1)    Never be afraid to ask all the questions you have.  When you run out of questions, ask someone to give you more questions to ask.  What you don’t know can and will hurt you or your child!

2)   If you don’t know the system, find an educated guide.  A teacher is always a great place to start.  Especially one who has experience!  Remember, they are there to help your child, and you, succeed!

3)   Study, Research, and learn as much as you can about your school’s procedures, the district’s policies, and the state’s laws!

4)   Take a deep breath and take it all one step at a time.  It is a steep mountain to climb but Mt. Everest is never scaled in 1 day!

5)   Pray, Pray, Pray and when you’re done, pray some more.  Guidance, wisdom, strength, patience, and anything else you need, pray and ask God to be with you and your child.  Life is tough.  Without God, it’s even harder.  I have clung to him through all of our trials and He hasn’t let us down yet. 

Donavon’s story is only getting started and God has done so much!  He is a living testament to Jeremiah 29:11 which says “I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for.” (The Message)

TO BE CONTINUED…