Wes is still here in the hospital. Again I feel complete confidence in Wes care here at Children's Memorial. He a spinal meylogram Wed showed the success of his neurosurgery last month. NO leak!!!! Even with this information, Dr. Bowman has stayed very involved in Wes' care.
Unfortunately due to his prior C-diff infection, g-tube surgery was postponed until Friday. Wednesday and Thursday brought high fevers, which resulted in his surgery again being postponed. Yesterday his pediatrician here, Dr. Shah, told us that Wes has a very serious blood infection. At this point no specific name, only referred to as a gram negative bacteria. Initially Dr. Shah and Dr. Bowman felt there could have been contamination, b/c this is so serious and unusual. Yesterday afternoon was very scary as Wes began vomiting that was alarming to his nurse and doctors.
Today Wes has shown some signs of improvement, lower fevers and no vomiting. His second culture results today did confirm a gram negative bacteria. This morning because of the vomiting and gagging, Wes pulled his feeding tube up some. X-rays showed that it is still in his stomach, which is to his benefit. He has been taking very little by mouth for many days now. At this point we do not know when his g-tube surgery will be schedule. With this infection he will need at least 10 days of IV antibiotic treatment. Today Dr. Bowman told us how important it is for Wes to be here with this infection.
Due to me making reservations with the wrong Ronald McDonald House, Joey is homeless and floating between waiting room cots and the chair bed in Wes room, when his nurse allows two parents to stay in his room. At least we have been fortunate enough to be isolated in a private "suite". Wes' first few days, his nurses and doctors come in with the full yellow suits, which oddly enough Wes seemed to think was funny.
There is a point in the hospital when you really begin to break down with each issue weighing down heavier. Beginning so far away from our boys, family, and friends also adds to this difficult journey.
I know Wes webpage reaches many wonderful people. I would like to request that you all pray for Mr. Charles Creamer, and his family. His daughter Marie Lee is close friend of mine and their family is faced with some very difficult decisions after a very lengthy battle in the hospital with several lung infections.

Love to everyone!

Wes is such a busy little guy. He is all boy! After his surgery and returning home, he is back to full speed. He has dealt with some issues, but has not slowed down. His sleep apnea has come back full strength. Dr. Curry feels the best option at this point for Wes is a g-tube, which will help with food irritating his airway and help Wes gain some much needed weight before his palate surgery. (Here is link with pictures and explanation of g -tubes http://www.rileypediatricsurgery.com/Gastrostomy.htm)
He is scheduled for g-tube for Wed Sept 26th in Chicago. Yes, back to Chicago! Dr. Bowman wants Wes back for scans and where all doctors involved are aware of his neurosurgery and airway issues. His surgery site is actually visible through his palate.
The antibiotics he had post op in the hospital caused an intestinal infection, C-Diff. This has caused horrible diaper rash and put us on alert for side affects. It can also cause this surgery to be postponed. Dr. Bowman has arranged for Wes to have surgery with the head of the pediatric surgery department, Dr. Reynolds. She does require that Wes have a clear culture before proceeding with surgery. Last week this infection appeared to be resolving with Flagyl, but today this does not seem to be the case. Friday the local hospital sent out a culture that will not be back until Monday. Joey and I are suppose to fly out Tuesday. Wes will be in the hospital for a few days following surgery and in Chicago one week post op to learn how to care for and change the g-tube.

We are home! Wes was cleared to travel home Tuesday.
Wes had a myeologram last Tuesday, dye injected into spinal fluid, he is tipped upside down, and then a series of scans to look for a leak. There was one questionable area according to the radiologist. With this scan and the fact that Wes’ nose is dripping clear fluid and his eye is watery, Dr. Bowman feels his palate repair needs to wait until another myelogram study. This will clear him of any possibility of a leak. He should have another in 6 to 8 weeks from now. He will also have a MRI of his head and spine. All of scans have been focused in the front of his head, while there are some additional issues at the base of his head. For now we continue to watch him closely for any fevers, which he has been, fever free since we left the hospital.
He is recovering well! I don’t know who was more excited to be home! Amazing how much your kids grow when you are away.

Wes was released Thursday afternoon!! He has been enjoying time free from wires, nurses, doctors, and even momma and daddy. We have been letting him walk and play independently without a padded room. Does not mean we are far behind or that my heart does not race with every wobbly step. He is doing great!
His breathing had improved immediately post-op, but as the days have passed his nights and naps are again filled with gasps and difficulties breathing.
His appointment is Tuesday with Dr. Bowman and if he is cleared we hope to fly home Wednesday. The thought of home warms my heart and mind!

Sorry it has been so long since, I have updated. Wes’ fevers finally broke on Sunday. Dr. Bowman was still concerned with his drippy nose and decided to move his myelogram, dye inserted into his spinal fluid in addition to a series of x-rays and CT scans.
Yesterday began with Wes choking up his OG tube, then the afternoon was spent waiting for him to return from the myelogram. Dr. Bowman was pleased overall with the scans. She is aware of the radiologist concern with one area, but feels that this area is part of his nasal septum.
She has been very conservative with Wes case, handling each issue delicately and thoroughly. This morning she decided to forego any further testing and release Wes tomorrow if he is fever free without antibiotics for 24 hours. No fevers and then he can have his PICC line removed. He went through a very traumatic experience to get this line.

Fever is back! Not quite as high, yet high enough to need a rectal temp and another fever work-up today with blood test and urine, which means another catheter.
His swollen droopy eyes tell that he does not feel well, yet he still pushes through, rest, play, rest, play...
Loves to take a stroller ride. We did get to spend a little time in the family area on the 5th floor today. He was immediately back in the Flintstone cars. He kicks back and enjoys ride.
Hopefully tomorrow will bring answers and NO fever.

Somewhat feel I am updating blow by blow. Yesterday Dr Bowman came in to do Wes spinal tap. Once we discovered he would not be having any sedation, I was so relieved to see her face. Not the norm for her to do the spinal taps. She was very particular about how Wes’ puncture was done.
Poor little guy had absolutely nothing, but some numbing cream on his back and mom’s hand to squeeze. He felt so bad, just did not have much in him to put up a fight. The spinal fluid did appear very clear, which was a great sign.
Fever was still very high and he spent the night having hourly temp checks. Yes, the kind no one enjoys. This morning around 5 am, Wes’ fever broke. Around 8 am he started sitting up and seems to be feeling much better. Nsg team came by this morning and said his lumbar puncture came back clear. Not sure on all of the other test, but his antibiotics have been bumped up as a precaution. I missed this nsg stop as I was consumed after the nurse this morning left his diaper twisted.
Right now Wes is sitting up in bed next to me and playing with an amazing collection of toys he has acquired during his stay. Of course the hospital water pitcher is his favorite. He will need his own toy box before we leave.

Yesterday, Wes had a good day. Actually went to the 5th floor to see the Rainbow Dogs. He was not sure about those doggies, but enjoyed being pushed around in the little flintstone car and took away a mini dog that has been clutched in his little hand while he naps. The past two days he has had two wonderful nurses, Ingra and Tristen, that have been on top of everything.

Today Wes is feeling pretty bad. This morning he spiked a fever, 103.5. He had Tylenol, which did not bring it down at all. He has been having HOURLY rectal temp checks. So far he has had a battery of blood test, urine which he was catheterized for, chest x-ray, CT scan, been thoroughly checked physically by a ped, ears, eyes, stomach, chest...all checked fine, and seen by and physically evaluated again by the infectious disease team. Nsg nurse practitioner, Kathy, removed his bandage to check his incision. Yes, of course pulls at a mom's heartstrings to see, but it does look well. We are still awaiting blood test and ct results. Right now he is NPO, awaiting a lumbar puncture to check for meningitis.

Positive notes: Wes was sitting up in our lap playing. He loves seeing the boys and Taylor. The swelling also went down enough for him to be able to open his eyes.
Wes will have a CT scan next Thursday. Dr. Bowman will then determine if he can be released from the hospital and have feeding tube removed.
Wes will go in tomorrow morning to have a PICC line placed. After tonight, this is welcomed addition to his web of wires. The antibiotic and pain meds are rough on his little veins. This also saves him the repeated sticks for blood draws. He did come out of surgery with an arterial line, which saved him many sticks, but could not come to constant care with this line.
Tonight he blew an IV line and was in miserable pain. His little leg had swollen terribly. Of course this happened or was realized as the nurse was holding his pain medication. Instead of relief, he spent two hours screaming in pain, kicking heating packs away and anyone else who dared near him, and then he received a BIG ouchie for a new IV.
Hoping for a little more sleep tonight, this may be the case out of shear exhaustion from his experience this afternoon. Last night he wanted to be held all night. He would stick his little hand out of the crib wanting to hold my hand. Of course that was not enough and at 2am and no rest for either of us, we cuddled up in the chair. “Slept” sitting straight up!!! Nurse has me prepared tonight with a “comfortable” reclining type “chair”. Who makes this hospital furniture????

Wes was moved last night to a step down from the PICU. Constant care unit is basically six beds divided by curtains. All neuro patients, which is better for Wes. Last night they also removed his arterial line and catheter.
He is doing better since Dr. Bowman came into the ICU and laid down the law on his pain meds. Pain is still an issue, but better.
He is being fed with an oral gastric (OG) tube. He is finally getting some pediasure, but is not real happy with this tube and has tried to maneuver it out with his tongue. With his palate open there was just too much communication. This will remain for about two weeks.
His little eyes are swollen badly. Both have been swollen completely closed. His arms are in no-nos to keep him from pulling out the OG tube. This keeps his arms straight, but he still manages to let me know, he wants to be held. Reaches up and clinches his little fist. It is a difficult task with the swelling and wires, which have lessened in the past day. Even lying in my lap, he does not want to be touched or any type of movement. Want be long and he will be running from anyone in white coat or wearing those latex gloves!
Yesterday Dr. Bowman proudly showed me his CT scans. Both of his encephaloceles are covered with the bone graft from the top of his head, just a bit larger soft spot. His surgery was perfect!!!
Recovery will take time, but he is such a strong little fellow!

Wes is coming out of surgery!!!! They are still working with his breathing tube, but actual surgery is OVER. Dr. Bowman and Dr. Vicari came out to tell us everything went perfectly. He did indeed have two encephaloceles, which are repaired now.
He will have a g-tube for about two weeks, due to the communication of his open palate and the surgery site. Anesthesiologist is trying to remove his breathing tube. We will know soon, but will not be able to update for awhile. I will be with my baby!

My boy is such a strong little fellow!!

Latest update, it is 3:30pm and Wes is doing great. Estimated they will be finishing up in 1 1/2 hours.
Thank you all for lifting Wes up in prayer!

Wes is now in the guided hands of Dr. Bowman, Dr. Vicari, and Dr. Schroeder. Wish I could say his transition was smooth...The anesthesiologist gave him versed, which should calm him down. Instead he had an opposite reaction, startled eyes, shaking, and pushing everyone away. The positive aspect of this medicine is that he will not remember any of this traumatic experience. Everyone in the room reassured us of how closely they will be monitoring and caring for Wes.
Dr. Bowman came in this morning thoroughly explained the procedure and answered all of our questions. She did feel the need for Wes to have a feeding tube for about two weeks post op, as his palate is open and way too much communication/exposure. This did come as a shock, but also a reminder that she has a well thought out plan with Wes' best interest top priority. As she walked away to the OR, she held my hand and gently told me they would take care of Wes. I feel in my heart that they will with the guidance we have all prayed for...
First update, after over an hour in the OR, Dr. Bowman is now setting up to begin surgery. His broncoscopy and feeding tube were the first portion and so far everything is going smoothly.
Warning: my post for the next few days will be scattered, as this morning handing my little guy over was the most difficult thing I have ever faced.

Tonight at the Ronald McDonald House, tomorrow night Children's Memorial. His MRI and Stealth CT Scan are scheduled at 1:30pm, after which he will be admitted. Long day! Nothing to eat after midnight. Yeah, tell that to my little 6am breakfast man.
Enjoyed a day at Navy Pier today with all three boys and our friends here in Chicago. Chase and I rode the Feris Wheel and saw the beach on the lake! Beautiful blue water. Wes and Rebecca danced for a band on Navy Pier. Such little charmers, the ladies brought them each two leis, all eyes were on them. He loved the loud music. Care free and loving life. His positive energy is so lifting.

As Wes' surgery draws near, I ask you to surround him in love and lift him up in prayer. In your mind and heart wrap him in a blue blanket of love. He will find safety and strength in the warmth of the the love that surrounds him.

Flights have been scheduled and doctors have all given clearance for Wes' surgery. Joey, Wes, and I will fly out July 30th. Wes will be having a MRI, CT scan, and some other test before surgery. He will also be seeing yet another ophthalmologist for pre-surgical evaluation and post evaluations. I would absolutely love to get some answers about Wes vision, but not setting my hopes too high, three ophthalmologists later. It would be nice if this doctor has some experience with children with nystagmus and midline defects such as Wes.
Months ago when, I was making this decision, I felt as if my heart would literally stop. A friend emailed asking about living with the decision of Bowman vs any other neurosurgeon, regardless of the outcome. I knew that Bowman was the doctor for Wes. After wards there is no going back, wishing I would have done this, researched that, or gotten on that plane and taken my baby to Bowman.
Last night Wes breathing sounded very familiar. An unnerving familiar! Opened up his little mouth and there was this purplish tissue, protruding through his palate again. Heard this gurgled struggle before about two weeks ago only to find what Wes' ped and I feel is his encephalocele. Although it is not a significant amount visible, it is enough to make my heart stop, enough to make me grateful that the wait is coming to an end.
This journey has lead me to knowledge and strength I never imagined, yet it has also filled my heart and mind with fear. Knowing that Wes' neurosurgeon is making all of these detailed preparations and arrangements is so reassuring. She will get final scans just before he goes into the operating room. I have confidence in her skill and ability and find such peace in knowing that Dr. Bowman will be caring for Wes.

Wes' surgery was confirmed today for August 3rd by the ENT. When I called again last week for confirmation from the neurosurgeon, I discovered she and her nurse were out on vacation until July 16th. Wow, we have an entire two weeks to prepare. If you are interested in updates I added a feature to add your email address and get a notification when there is an update to his blog. Although I can not imagine there will be much time for updating, I will "TRY" to update his blog occasionally after surgery.
Tuesday was Wes' endocrinologist evaluation with Dr. Nancy Wright in Tallahassee. She again discussed the diagnosis of Septo Optic Dysplasia and the possibility of hormones deficiencies due to the involvement of his pituitary gland. His past two urines were very diluted, so he will be evaluated once again next week then there is a possibility of a water deprivation test. This will test for diabetes insipidus. NOT diabetes mellitus, or associated to blood sugars. Diabetes insipidus is when the pituitary gland does not release an anti diuretic hormone.
As of now Wes' hormones are all normal, with the possible exception of this anti diuretic hormone. He will need to be evaluated every six months, as it is possible that as he grows his pituitary gland will not be able keep up with his body. His pituitary gland did not develop correctly and there is also a cyst present in that area. His age has made it difficult to fully assess his pituitary gland through MRI’s, so the details we have are inconclusive.
The next two weeks are going to be full, preparing for Wes' surgery and lots of appointments. On an exciting note, Brandon's birthday is July 25th!!!

Nothing beats a good day at the beach (with Cheetos)!!!

Oh yeah, totally boy here!!! Wes has learned how to crawl and the higher the better. Like climbing on top of the table in not enough, he needs to stand completely up and reach for the sky. Mostly he is just crawling to places that let everyone know he is a big boy. His favorite place is the couch, just to sit by himself, like the big guys do. Well today the couch was a little bit bigger than he was and he took a bump to the head.
The moment I picked him up all I could see was a major EGG!!! A few seconds later he was all smiles, sporting a diaper and first of many adventurous discoveries.
Just in case you had any doubt about how tough this little guy is!

Did not expect to post so soon, but got a call today. Wes surgery is scheduled for August 3rd. Neurosurgeon is awaiting response from ENT before this is the confirmed date. We should know for sure next week and we can begin to make plans. Another month, definitely not as soon as we had hoped to put this behind Wes and our family.

This does give us a month of summer break to enjoy and take time with all three of the boys.

WAITING!!!!

Thought I would post and update on Wes surgery plans. His sleep study did show obstruction, but Chicago ENT feels that some of this obstruction will be alleviated with this surgery. Plastic surgeon will try to do some minor work to open his nostril during his encephalocele surgery. Both of these issues are contributing to his obstruction. He will also have a bronchoscopy before surgery.
Still waiting for a date. Feeling major frustration as each day passes without any idea of a date.
Wes is doing great! He has learned to climb up on the couch and chairs, but has not got a handle on the getting down part. He is so cute sitting up on the couch with this little smile letting me know he is a big boy. We are working on a few signs, more, drink, all done, and open. He is a bit stubborn and only likes to use the signs when he wants, but is so cute when he does. He has also learned to say uh-oh, which he uses constantly. Loves to say uh-oh and then drop(throw) something down to be picked up.
I would say that an update with a surgery date will follow soon, but for weeks now I have been saying tomorrow only for tomorrow to come and pass with many phone calls. Unfortunately the phone calls are asking for a date not giving a date. I will post a date as soon as I know one...

Leaving Chicago, babe!!

We have returned from Chicago! Wes' sleep study was not a pleasant experience. He did so well, even smiling, getting all hooked up with the leads on his head, chest, back, legs, and toe, but when he put the nose cannula and the ace bandages around his head and chin he started to really get nervous and anxious. (It did not help that the ENT did a scope down his nose earlier that same day.)
He did fall asleep fairly quickly. I even crawled out of the bed and thought I was going to get some rest. About 15 mins into the study, he woke up screaming and was not interested in going back to sleep or calming down. He did eventually go back to sleep, but the rest of the night was full of screaming and inconsolable wake-ups. I ended up staying in the bed with him and when he did sleep he was resting on my chest.
Finally somewhere between 3:30am and 4:00am he woke up and was not going back to sleep. His little body was literally shaking. I signed to end the study a little early.
Not sure if they were able to get any info from that study. I will truly be amazed!!! This was definitely not a typical night for him.
We also saw the two of the docs who will be in his encephalocele surgery with nsg, Dr. Bowman. The ENT is Dr. Schroder. He is very young, but seemed pretty knowledgable about ca children and encephalocele. The ps is Dr. Vicari. I absolutely loved him. He was wonderful, sitting down and discussing everything so thoroughly with us. He saw a picture of Wes at birth and commented that his encephalocele was apparent then. Although I did discuss the fact that we do not intend on continue Wes' cleft repairs in Chicago, he was willing to give his opinion for future repairs and how he would proceed, which was very informative. He feels there is a possibility that he may be able to do something with Wes collapsed nostril during his Encephalocele repair. Both doctors agree that his collapsed nostril the major contributing factor to his airway obstruction in addition to his encephalocele. Ultimately there is alot involved in Wes' case, which seemed to leave both docs in favor of a temporary trach, but ENT will make a final recommendation after reviewing his sleep study results. The results are suppose to be rushed and complete by the end of this week. It may be the first part of next week before we hear anything.
I am very anxious to get these results and the ENT recommendation. A trach has been a very difficult recommendation to completely accept, b/c his breathing has improved so much. The ps even mentioned that we may question the possibility of proceeding without the trach, but ended in saying he felt the safest route would be the trach.
Wow, when will my little guy get a break. As if he does not have enough issues that will affect his speech. It breaks my heart to think of my very sweet, active baby going through yet another set back, all in our effort to go forward. How can he continue to come out of all this with his precious little demeanor? We will continue to surrond him in love as he continues to amaze me daily with his beautiful smile that he shares with everyone.
No worries for him right now, except for finding the Nilla wafer that has fell on his shirt!!