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.