We have some sad family news. My grandma Olga (Jack's great grandma) passed away Sunday, November 28th. We are relieved that she is no longer suffering but so sad because we miss her so much. She loved Jack (or as she called him "My Jackie") and loved to hold him and hear him 'talk' to her on the phone. The funeral will be this Friday. Jack is doing very well -- there's so much to be PROUD of! He's eating anything and everything in sight. He LOVES food and wants to eat whatever mommy and daddy are eating. He ate lots of Grandma Linda's Thanksgiving Dinner (and most of the leftovers too) as well as a second Thanksgiving Dinner at Grandpa Bob's....he loved Grammie Tina's sweet potato casserole too! We have been taking Jack out as usual. After letting him recover for a week or so and with his pediatrician's encouragement we feel comfortable shopping and eating out with our very social Jack! Jack is crawling and getting into trouble and he's becoming more steady on his feet and is daring to cruise along the couch and coffee table. Sometimes his excitement gets ahead of his feet and he crashes to the floor -- usually he just laughs and tries again. We are working very hard to strengthen his legs and trunk muscles to make standing and cruising easier for him. We also must practice taking steps with two hands held...he does well when you hold him under his arms or at his elbows but it gets harder for him with less support. Although he is making progress!! He's also 'talking' much more as well...although NEVER around the speech therapist!! I don't think he's made a peep around her yet! Too funny!! I've added new pictures -- check out the November 2004 album! We are remodeling our kitchen and slowly and surly we're making some progress. To check out our photoblog copy and paste the following web address. www.wilhelmfamily.photosite.com

Jack is feeling better and better each day. Today he was actually interested in crawling around and playing with his toys He still has runny diapers but they are getting less and less and he's getting plenty of fluids and is eating some so hopefully he'll be back in full action soon. Thank you all so much for your thoughts during this horrible ordeal.

Usually we have such great service at that facility (although we've never been to that ER before) -- I am upset that this happened.

I am also so freaked out about Jack getting sick again. I thought we were sort of 'in the clear' because he remained totally healthy from the time he was discharged from the NICU. Now 20 months later he's in the hospital. Did we just get lucky for those 20 months? Is Jack not as healthy or able to fight off bugs as well as we thought? Would this virus have put any child in the hospital? Part of me wants to go into deep seclusion like we did last year (under doctor's orders), but I don't know what to do. We have a follow up with his pediatrician on the 22nd and I plan on talking to her about my fears. For now I have no problems with staying in and being super diligent about making sure we avoid anyone with a cold or bug. As always hand washing is a rule when you walk in our door so that hasn't changed. I wish I had a scrub sink on my front porch -- HA HA! I know I had someone tell me that they'll never get used to this whole handwashing thing and they even wondered if they'll have to wash their hands till Jack's 18 -- well...maybe!!

Jack had been sick for several days. It all started Tuesday night around 11:00. I had fallen asleep on the couch while Angie was rocking Jack to sleep. I was awoken by the sound of vomiting upstairs and Angie’s cries for help. “Jack is burning up!”

The fever was barely controllable even with a combination of Motrin and Tylenol. On Thursday, when it became apparent to us that the sickness was not subsiding, Jack was brought the pediatrician’s office. After blood work and a urine cath showed no obvious signs of a bacterial infection, the ped felt the illness was viral and the best thing to do was to keep Jack well hydrated.

Jack took in small amounts throughout the day, but was very miserable...even lethargic, and was slowing becoming dehydrated. Later in the evening Jack was becoming increasingly irritable and would wince in horrible pain if he wasn’t lying flat. The pain combined with unrelenting fever resulted in our decision to take Jack into our local ER around 11:30 Thursday night.

We were seen relatively quickly by the ER doctor. He was an older gentleman who did not show any obvious signs of fatigue, but he was by no means energetic. He was very kind, but we felt that his examination of Jack should have been a bit more thorough. In fact, I had to point out that Jack was dehydrated and also that his lymph nodes were swollen. In addition to the examination, Jack also had blood taken and a throat culture. Some time passed and the blood work came back as being normal, besides some resolved confusion that it was high in sugar, which was due dextrose and saline IV fluid.

Some time passed and the doctor proposed to us that he perform a spinal tap on Jack to see if his spinal fluid or shunt showed any signs of infection. We nervously declined and asked to be transferred the Medical Center ER. Jack has a long history with specific departments and doctors at the Medical Center, and if anybody was going to stick a needle in Jack’s spine, it was going to be his neurosurgeons. Jack’s neurosurgeon was on call thankfully and the ER doctor explained Jack’s situation to him. The Medical Center ER then accepted Jack as a patient under his neurosurgeon.

More time passed, and then around 4:30 AM Jack was transferred to the Medical Center by ambulance. Angie rode with him and I follow in the car.

Jack was immediately examined by three people and his vitals were taken. We felt that Jack was finally in good hands. We were informed that Neurosurgery was notified or our arrival and everybody left the room.

Hours passed. While we had a nurse assigned to us, we felt completely alone and not taken care of at all. We asked three times for Tylenol for Jack and got none. It took multiple requests for diapers that we finally got some. Jack had a fever and we were unsuccessful in getting his temperature taken. Although we had informed the examiners at the beginning of the Medical Center ordeal that he was on IV being treated for dehydration, no fluids were given to him.

Finally after not being told when to expect neurosurgery, one of Jack’s neurosurgeons visited us a full 3 hours after our arrival. She thought that there was no shunt infection or shunt malfunction and even decided that a head CT was not necessary in order avoid Jack’s sedation. We were very pleased at this news...especially since there was no need for any spinal tap. In fact, Jack’s neurosurgeon thought it was a very good choice not to let a sleepy, yawning ER doctor perform such a delicate procedure.

We had expressed our urgency in getting Jack’s other medical issues attended to (i.e. IV fluids, Tylenol). We were then told by our absolutely worthless nurse that she can not do anything because the ER doctors refuse to see Jack. Still in the room, the neurosurgeon asked the nurse if she could write the order. The nurse said yes.

We were appalled. It was FIVE HOURS since our arrival and Jack was not being treated for anything. Jack was on his third day of no food or drink I expressed my anger and demanded that we speak to someone who had the power to fix the situation.

A few minutes later, a person with the official title of “Patient Representative” arrived and apologized profusely for the inactions of the hospital. He immediately had Pediatrics exam Jack. From the point on, we felt very taken care of.

Later in the evening, still in the ER (we did have a private room), Jack’s main Neurosurgeon visit us mainly to apologize for what happened earlier in day. Through this apology, we learned that we were caught in the middle of a department feud that has caused this same situation before. The ER doctors refused to see Jack because he was admitted under Neurosurgery.

Even though Jack could have had a life threatening situation, we could not get medical attention for FIVE HOURS in a hospital because of bureaucratic breakdown and intra-department quarrels. All of this meant nothing to us as Jack’s parents. We didn’t’ care who could write the orders as long as SOMEONE was caring for our very sick child.

They ordered so many tests – chest x-rays, abdominal x-rays, a shunt x-ray series, more blood work, another urine catheter, were done. His white blood cell count was low but for the most part the tests came back within normal range. The final diagnosis was probable viral infection. Poor Jack was poked a prodded so many times and he was feeling so miserable our hearts broke for him.

We went without sleep for two days – and spent the entire time in ‘ER Limbo.’ We were promised a room on the pediatric floor which never happened. Although by Saturday we told them to not bother transferring us. We had a hard time getting anyone to look in on Jack – in fact, a lot of our calls using the call button were not answered. Countless times one of us had to go find someone to get Jack what he needed. We did end up with a very nice nurse who really did her best to check in on Jack and really listen to our concerns.

This whole ordeal was frightening enough and the added stress of not getting immediate care was horrible. Although once all the red tape was worked through we did see excellent doctors that listened and cared very well for Jack.

Jack was discharged Saturday to come home. We were so happy! Sunday he ate and drank well, but has had diarrhea each time. We were told he could dehydrate again very easily but we’ve managed to keep a lot of fluids in him. This morning (Monday) he had breakfast and seems to be back to his very cute little self!

We are taking it easy this week – we canceled all of his therapies and appointments this week to avoid over working him and to give him lots of rest and time to recuperate. Plus his white cell count is still a little low and we don’t want to expose him to too many germs or bugs.

Thank you all for your thoughts during this time. We really appreciate all the well wishes and help from our friends and families.

The pediatrician said her gut tells her it's a viral infection, but she did a urine cath and sent us for a blood culture to rule out anything bacterial that would require antibiotics. His ears were clear as well as his lungs. She called and the preliminary results show no growth -- so her thoughts are it's a virus. Jack also broke out in a small rash (a sure sign of viral infections). Jack is dehydrated and she told us to avoid getting ourselves admitted to the hospital we need to pump 2-4 ounces of pedialyte into him EVERY HOUR. She told us to give it with an oral syringe if needed. My poor baby is really not well -- I pray it passes soon. Also, to treat the fever she told us we can use one teaspoon of children's motrin every 6 hours. I am tired and spent from worry. I will keep you posted.

I was SO freaked out last night! Jack went to bed early (before 8:00 PM) and Jason was away...right when he got home Jack woke up so he went and got him and rocked him while we all watched TV. Well right when we were getting ready for bed (around 11:30 PM) Jack woke up with such a pitiful cry and cough...I ran over to his room and scooped him out of his crib. He was burning up and sweaty and all of a sudden he vomited several times. I took Jack's temp and it read 102.5!! Even though I am an 'ex-reflux mommy' I was so scared -- this was his first high fever and his first ever 'sick vomit' he was teary-eyed, sweaty and every shade of green/gray imaginable. I went through my mental check list for a shunt malfunction and decided not to panic unless the vomiting continued. About 15 minutes later I was able to give him Tylenol and he kept it down. He was still green and pathetic looking so we all set up camp down in the living room. I held him until 2:00 AM and finally put him in his pack and play. He didn't wake up or get sick since last night. This morning he's acting a little better, his fever is down to 101.5, and he held down 4 oz of pedialyte and some dry toast. I think he's feeling icky but I am not as freaked out as I was last night. I know this is normal kid stuff but man is it scary the first time it happens! I am calling the doctor this morning -- but really dread going there if this is just a bug. He's napping right now after a dose of Infant's Motrin -- let's hope that fever stays down. Please keep our little man in your thoughts.