Yes, this is a very late post. Don't hold it against me, I got home and did not spend much time on the computer. I have spent my time enjoying my family and friends. (and in somewhat of a crash and burn)

We have a new puppy, Izzy. Wes loves Izzy, wants her to sit in his lap and love on him, but when the he has had enough he bites back. Yes, bites back!

Still a huge fan of Elmo. Loved being Elmo for Halloween and did not want to take off his fury little friend. He was not a big fan of Santa Claus. He loved all the gifts, especially his older brother's toys. Yes, the ones he is not suppose to mess with.
Wes is doing well. He still has a stubborn case of c-diff, which I hope is cleared with the dose of flagyl he just finished a few days ago. Dr. Curry will order another culture this month. Such a pleasure getting those cultures and then carrying it around. Unfortunately he required another dose of antibiotics a couple of weeks ago for a sinus infection, which has not cleared, heading back to Dr. Curry tomorrow. He will also be having blood work for a follow-up with endocrinologist later this month. Everything he has been through, those blood draw visit are very stressful on him. Thank God for Dr. Curry. She is a one time, quick stick, which is not the case everywhere for Wes. All of his 6 month follow-ups fall in Jan. The month is full of appointments, ophthalmologist, endocrinologist, general surgeon, and neurologist for an EEG. Of course hoping this visit with the ophthalmologist will bring more answers about his vision, but I know this is not realistic at this point. Ophthalmologist is planning on dilating his eyes and evaluating him further for glasses. No that this is not a fix or cure for his nystagmus. He does now have a vision teacher who visits from FIRE, this is his only therapy now. He was seeing a developmental nurse, who quit, occupational therapist seems to avoid me, physical therapist never followed up and speech will most likely be after his palate repair. Honestly he has been tossed around and tucked away with regards to these state services.

Wonderful news since g-tube, Wes is actually on the growth chart for the first time in his life. He is in the 7% for weight. He has adjusted well to the g-tube feedings. He does have some issue granulated tissue and was making trips to a general surgeon in Panama City every other week. Dr. Curry has now taken over those visits and cauterizes the tissue with silver nitrate every other week with the hope to get it under control and stop growing.
Will try to update later this month with good news from all of his follow-ups.

Dare I post this update...Yes, we are still here in Chicago, but scheduled to fly HOME tomorrow morning at 9:50. It could be a messy flight! Hope the seat beside us is open.

This has been a challenge for our entire family. My heart broke when I called to tell Chase and Brandon that we would need to stay for two more days. Explaining issues difficult even for most adults to wrap their minds around over a phone call filled with my babies tearful pleas was heart wrenching.
Wes just was not doing well enough to safely travel home Tuesday. He has gone 3, 4 and then really stretched it out to 5 entire feeds before vomiting. We have been told that vomiting may just be Wes normal. Wow, what kind of normal is this?

Today seems to be better. He has not stopped vomiting, but has stretched out for 5 feeds, which totals 17 1/2 oz, before losing about 4 or 5 of those. The hope is that Wes will go straight home and stay there, but Dr. Curry has agreed to have him admitted in Panama City, if it is necessary.
Right now he is peeping out the door..tomorrow he will step out that door on his way back home.

Just to let you know the hospital is not as fun as Wes makes it look in all the pictures. Everyone here has worked hard to make sure Wes can explore, grow, and have some fun. It is also in his nature to make the best out of any situation. Not going to let much hold him down for long.

Wes has learned some new words. Love to listen to that sweet little voice even when he is telling me no and move. His little way of telling the nurses, doctors, momma, and daddy what he wants. He is has also learned to say Elmo and pee pee. Past two days have been filled with Elmo music dvd. He wakes up, pointing to the tv saying "melmo". Does his little bounce dance in the bed.

Life can be so unpredictable...we move one step forward, yes only to take two back. Wes breathing has improved considerably with no desats. Today things seemed to be looking up! Wes will be discharged tomorrow and after a few frustrating calls and $475 fees per flight to get home, I finally found a friendly woman with Delta who was wiling to really listen to our situation. She waived the fee with contact of a medical case manager here.

The steps back, Wes is still vomiting and now having considerably less urine output. Only two wet diapers all day and Wes has gone through every little pink gown on the 6th floor. I worry leaving the hospital with him vomiting the way he has been. The doctors have all assured us that this too will pass with time and patience. Initially we were told this would be a simple surgery and Wes would bounce back quickly, which makes me question why this is not happening. There is no true explanation, which of course I hate. I need answers and resolutions, when it involves my baby. What can I do for him...hate to see him suffer through, yet another difficult time.

Spreading some of that universal charm...a smile and personality that grabs your heart!

Wes is doing well. The thought of this hole in my baby's little belly just seemed overwhelming, but like most things I have learned as a mommy, I can do it. He of course surprises me with how well he handles everything. He was back and forth with smiling and fussing today, but overall doing well.
Woke up at 6am for my first lesson. The nurse connected his mic-key button to an extension tube and started pedialyte feeding. This was after a LONGGGGGG night with a screaming baby next door. The extension has to be snapped in and then turned to lock. The pushing to get it snapped in was a little too much for me to try this morning. He is still pretty sore.
He was started on slow continuous feeds of pediasure this afternoon. Nurse came in a little while ago to give me a lesson on giving meds. I flushed the line, baby steps. LOL. Has two ports, one for feeds and one for meds. Positive point is there is no more fighting him with meds.
The pediatrician, Dr. Heckle, bought baby Einstein and Thomas videos for Wes. We have been searching the hospital for dvds for the bed side tv, to no avail. Today she walked in with brand new dvds and praises of Dr. Curry.
Bad news is that we will spend the weekend here. She talked with Dr. Curry and she wants Wes to be set before they send him home. She is concerned, because of our location and the resources in our area for little guys. Of course we want what is best for Wes and now looking forward to returning home first part of the week. Possibly Sunday, but most likely will be Monday. Can not wait to get my arms around my little fellows. Love you so much Chase and Brandon!

Wes has his button...
much relieved that he got the button right away. Often doctors use a different type of tube for the first 6-8 weeks, which is what we were told to be prepared for. He is out of surgery, sleeping now. Just been laying here with mommy and daddy, watching a little baby einstein and resting.
My heart was warmed and spirits lifted yesterday by some thoughtful posts, emails, phone calls, some wonderful visitors, lots of love from home, and my hubby walking into the door. Everyone's support has meant so much.
These hospital days have slowly broken me down. In a way, I felt as though I had failed Wes. Here he is a 18 months old, so much he has dealt with and now a g-tube. Worked so hard against this feeding tube, since the day he was born.
Honestly seeing him after surgery was such a release. Yes, always makes me weak in the knees to see the pain and fear in my baby's eyes, but it is over, the fight, the struggle, the surgery, and now seeing the light at the end of this hospital stay in just a few days. Still going to love on that little belly, just going to give him a few days to recuperate.

Life is a journey to be taken day by day...

Wes is also doing well on the 6th floor here. Of course you know how quickly he steals your heart.

Such a little flirt!

Day one on the 6th floor has been a difficult one for me. Being on the 3rd floor for two weeks in August and two weeks now, we knew everyone. Had a little hospital support system there. Something to be said for familiar faces. Now we are on the 6th floor, next to a baby who is apparently alone and not happy all through the night and all morning. I honestly feel I have reached my breaking point. It is so much more than the move, days isolated so far from home, awaiting another surgery for my little man. Woke up this morning, ready to leave. Wes finished his last dose of antibiotic last night and had a culture and some other blood work early this morning. Hate the idea of a g-tube. Love that sweet little belly, lots of kisses and tickles there. His surgery is scheduled for tomorrow, not sure a time. Tearing up as I type those words...I am just so emotionally exhausted.

We have made some new friends here in Chicago. Wes loves music therapy.

Ok, I think I am a pretty reserved person and often hold back when I feel like exploding. Today was one of those days, I held back just how angry I am that Wes had to be moved to the 6th floor. Emotional day for me, there is a lot to be said for familiar faces.
Being away from family and friends has to be the most difficult aspect of having Wes' care so far from home. It meant so much to look up and see my cousin, Chuck, standing in the door. Wonderful timing! All the places he could have been sent for work and he was sent to Chicago.

Joey is flying back tomorrow in time to be here for Wes surgery Wed, which will be great for Wes and I. Desperately hoping to return home Friday night. In time to see my boys play soccer Saturday! I am so looking forward to getting back home, to all of the things we often take for granted...

The view from Wes room is a breath taking look at the roof. Tuesday will be two weeks in Chicago and all I can tell you about is the green, blue, yellow, and purple color scheme of this hospital room, how a shower can somehow bring back a little of your human side, and almost every moment of 5 Baby Einstein videos. He loves those videos, grabs his attention. Must be a comedy, because he throws his little hand up laughing at the puppet lion.

Today as I was taking a shower Larissa, a student nurse watched Baby Einstein with him. When his nurse walked in, Larissa was talking to Wes in Russian. The video starts out in Russian, which made her think we spoke Russian, so she was trying to comfort him in Russian. Wes has been fortunate to have such wonderful people caring for him. Take care of your nurses, they truly are an integral part of your care in the hospital.

His g-tube surgery is scheduled for Wed, Oct 10, which I have woke up each morning dreading, questioning, and ready to run from. Antibiotics end on Tues, which leaves no time for anything else to arise.

There truly is a breaking point in a hospital and I have reached mine a few times now, which has opened my eyes to the value of a hospital Social worker and the volunteers. Wes is still in isolation and no hope of getting out. Our social worker, Audrey, has stopped by everyday to visit and check in on us, even called Saturday. She has been a great resource and a wonderful person to talk with.

Wes is really doing well, back to the little happy fellow and yes putting big smiles on his nurses faces. Such a little flirt! Stuck in a hospital room, yet not much slows him down, always smiling and ready to play. Just loving life...

Here are some photos to melt your heart.

Yes, my little man misses his big brothers!

Turns out that Wes has salmonella infection. This morning Dr. Heckle, peditricain, said that many people carry this bacteria in their intestines. Both the C-diff and salmonella bacteria have overtaken Wes' intestinal system after strong antibiotics have mess up the bacterial balance in his intestines. The salmonella bacteria has entered Wes blood, oddly enough though his stool cultures have been negative with any type of bacteria. Because Wes has had a recent surgery and more to come, he needs antiboitic treatment to fight this bacteria.
Today he is again isolated in this hospital room, but enjoying some Baby Einstein movies. The peditrician is switching him to bolus feeds, big feeds a few times a day, instead of continous, which requires him to be constantly connected to a feeding pump. After one week in his hospital bed with this nasty infection wearing him down and causing vomitting and diarrhea (over a month) he has gotten pretty weak. Yesterday he was not able to walk, very unsteady and wabbly. Today once they start bolus feeds he will be able explore this "big" hospital room and just get out of bed.

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!!