Friday, April 27, 2007

Long night

Well, as I thought, it was a long night. He had several vomitting episodes and was really hard to put to sleep. We finally got him down at around 11:30pm, he was up again at 3am and again at 6am. He is still having the diaherria. I have stopped offering him formula and only giving him pedilyte (I hope that it works!) I am going out on a limb here, but my guess is that we will be back in the hospital for fluids soon.

Thursday, April 26, 2007

New Bug

Hi Everyone-
I had to take Will back to the ER this evening because he has been having really bad diaherria and vomitting. They did an x-ray to make sure that there was no obstruction (there wasn't) and they did blood work to check for any abnormalities (there wasn't). There was nothing wrong with his insicion, it all looked good. So, their conclusion was....drum role please....he caught something during his stay at the hospital!! GREAT!!
They took a stool sample (because he so graciously pooped on me while in the waiting room!) and see what that says, they are looking for some type of virus.
Since we have been home (8pm) he has thrown up three times and pooped three times. He only slept for 7 hours last night and took no naps today, he is so tired but is still fighting sleep!
We have an appointment to see Dr. Barlow (GI doctor) on Monday. We will see what happens. I hope that tonight goes well...

Tuesday, April 24, 2007

We are home!!!!

Yippie! Will was released from the hospital this evening and we are all glad to be home. He is eating pretty good and having some monster poops!! He has welts and blisters on his arms and hands from the tape from the IVs. He has such sensitive skin and they are really irradiated. I can handle a little skin irradiation.
Thank you all for your thoughts and prayers! My little buddy will be happy to sleep in his own bed without any tubes or cords attached to him!

Monday, April 23, 2007

On the Mend...

Happy Monday! William is doing fabulous. He is feeling much better today, he gave me a "cheeky" smile. I love that smile! Anyway, I think that he is feeling alot better today, not so swollen either. He got to eat his first bottle since last Thursday today! I have never heard him get excited about his formula before, but he was grunting and bouncing up down in anticipation! They haven't said anything about a going home day yet, but hopefully if he is able to keep his food down and keep the pain manageable I think they will let him go home.
He has made friends will all of the nurses, they all love all over him. He loves it! What a lady's man! One nurse was working a different floor and came up to see him before she left for the day! I tell you what, 8 months old and already working that smile of his!
I will let you all know when we are able to come home. Thank you all for your thoughts and prayers! Much love...

Saturday, April 21, 2007

Doing well...

Good evening everyone! William is doing good. Last night his heart rate was going pretty low so they did an EKG and everything looked normal. They think that the moriphine was causing the rate to drop. He is also really swollen, they say that it is normal for babies to swell after surgery. Today his eyelids, legs and feet were really swollen. Hopefully, within a few days the swelling will go down. They are keep a close eye on him but he seems to be doing really well. I held him to day and he wanted to jump in my lap! He also gave a few smiles today so I think that he will be back to his old self real soon. They haven't mentioned when we maybe able to come home but I think it will still be a few days. Aunt Andrea and Uncle Ryan came for a visit today. The picture is Andrea holding Will, showing him his new dog! I will keep you all posted...

Friday, April 20, 2007

Surgery went well...

Just wanted to give you all a quick update. Will had surgery this morning at about 9:30am and very thing went very well. They didn't have to remove any of his interestine, they just untwisted them. They also removed his appendex because they are not in the right place, if he were to ever have appedicitis it would be hard to diagnose because the pain would be in the wrong spot. Anyway, he doesn't need it so they took it out. He was in surgery until noon and has been asleep since. He is on moraphine for the pain but seems to be quite comfortable. I am at the hospital right now, so I can't be on here long, just wanted to let everyone know that he is doing good. Thank you everyone for your thoughts and prayers. Josh and I are celebrating our five year anniversary at the hospital today!

Wednesday, April 18, 2007

Eventful Night...

Well, lets just say that Will and I had an eventful night. At around 7:30pm he threw up and there were some dark spots in the vomit. I loaded him up and took him to the ER at Cardinal Glennon. We were in the ER from 8pm to 3:00am! They did a repeat upper GI that showed nothing different then the GI done on the 5th. They kept him over night on IV fluids and to watch him because during the GI he vomitted ALL over the place and it was really dark. So, Will has only had about 5 hours of sleep (they kept waking him up to get vitals and to do repeat x-rays to track the barium going through his intestines). I have only had a couple hours of sleep. Josh came to the hospital this morning so I am at home and going to get a shower and maybe a cat nap. They are not sure if we will be able to keep our appointments in clinic or not today. I still haven't been able to talk with a doctor this morning. So I don't know the game plan for today. I will keep everyone posted...

Tuesday, April 17, 2007

Dad down with the flu

Hi Everyone, hope that you all had a good Tuesday! We are preparing for our long day at the hospital tomorrow. Josh came home from work today with the flu, yippie! So Mandy has so graciously agreed to go with me to Will's doctor appointments. Josh is still hoping to go, so Mandy is on "standby". We will see how he feels in the morning. Right now, he is not allowed to leave the bedroom! That is all I need the kids with the flu (the husband is bad enough!!)
I will let everyone know how it goes tomorrow!

It's Fixed!

Good Morning Everyone! Well, the CT machine is FIXED!!! Yippie! So tomorrow we have a super long day scheduled. We have the renial ultrasound at 1pm. Then Meylo Clinic, then CT scan at 4pm. I don't expect to be home before 11pm. The little buddy is going to be so tired but I felt like we had to get it done ASAP. So today, Caroline is going with Aunt Teresa to Grammy and Papa Pillers' house to stay the night. Then I have a meeting with all of Will's early intervention therapists and case worker to set up new goals and re-evaluate his progress. (sigh) We are going to be super busy the next few days. Please keep the little guy in your prayers (and Mommy and Daddy too!) I will keep you updated when I know something!
Much love to everyone!! ((HUGS))

Monday, April 16, 2007

CT scan cancelled

The CT Scan is cancelled. The hospital is flying a GE Technician in from Milwaukee to fix the machine. So they didn't want him to be without food if they are not for sure that we can even have it done today. So we are holding off scheduling anything until the machine is definitely fixed. AAAHHHH!!!

Still waiting...

Will had a pretty good day today. Caroline and Will had fun playing with cousin Mikkah today. We all had a good time.
Still no word on the CT machine, I hope that we can get that scan done sometime this week but I am not sure. We have appointments on Wed. all day. He is going to have a kidney ultrasound and then Meylo Clinic (for his sacral dimple, tethered spinal cord surgery that we had in Nov). Anyway, during that clinic we see several doctors, orthopedics, neurosurgery, physical therapist, urologist. So that will take several hours. So that day is shot. I guess we will maybe get to done on Thursday or Friday.

Sunday, April 15, 2007

Happy Sunday!

Will did really well again last night, thank goodness! We are scheduled for the CT scan tomorrow, but I just called to make sure the machine is fix and it is not. The nurse said to wait until tonight at about 6pm to call back and check again. If it isn't fixed we will have to be rescheduled again. I will keep you all posted...

Saturday, April 14, 2007

Hopefully a CT scan?

Good morning! We made it through the night without vomitting or a trip to the ER. So I am very grateful for that. I hope that the weekend goes well but if anything happens I will be taking him to the ER.
They did call yesterday and scheduled William for his CT scan. He is "hopefully" going to have it done on Monday at 4pm. That means no formula after 8am, clear liquids until 2pm, and nothing after 2pm. We have to be at the hospital at 3pm. I hope that it goes well and he does okay with the sedation. I will keep you all posted if there are any events this weekend. If not I will let you know how the CT scan goes on Monday.
Have a great weekend!!

Friday, April 13, 2007

What I know...

all right, here is what I know now. I talked to Dr. Barlow (GI doctor) and told her about last night. She told me to give him Milk of Mag. and if he vomits tonight to take him to the ER to have an x-ray because there might be a blockage in his GI track. So again, we will wait and see. Pray for no vomitting tonight...

all clear this morning

Ok, well, Will did sleep through the night once we got him to sleep. It was well after 11pm with nonstop crying until he finally cried himself to sleep. I have called Dr. Barlow's office this morning to let her know that he was vomitting and crying in pain last night. So I am anxious to hear what she has to say. She probably thinks that I am a complete crazy woman because I think that I have called her everyday this week.
He seems to be okay this morning, no crying or vomitting. But we will see how the day goes. Hopefully Dr. Barlow calls back soon. I will keep you posted...

Thursday, April 12, 2007

Feeding Issues...

Will just threw up absolutly everything that he could have ever ate in his lifetime. I am so upset, I have tried to feed him all day and then, right before bed he throws everything up. This is not good because he must keep everything down in order to gain weight and Dr. Barlow (GI doctor) asked when I talked to her today if he was vomitting, I said "no". But that has now changed!
Oh, I also talked to Dr. Rahman today (peditrician) and was telling him about what Dr. Barlow had said regarding the CT scan. He asked me if "Willy" (that is what he lovingly calls him, lol) had passed the barium that he swallowed during the upper GI last Thursday. I was like, what do you mean, would I know? He said that his poo would be white and chalky. I was like no, he has only gone once since last Thursday. Dr. Rahman said "Are you kidding me??" He said that he couldn't believe that he hasn't passed it yet. That sort of has me worried. But I guess since Dr. Rahman didn't say anything more about it, then I shouldn't be totally freaked out.
Will is now screaming his head off and Josh and I are not sure if we should feed him again, since the throwing up thing or not. AAAHHHH! This is so aggravating.

Talked to the Doctor

Okay, talked to Dr. Barlow (GI doctor) and she seemed to think that it would be okay to wait until next week to have the CT scan, so I guess that is what we will do. Dr. Barlow did seem to think that he will have to have surgery but the pedi surgeon wants to have a clearer picture of what is going on in there, therefore the CT scan. I had another RTS Mommy e-mail me (Bridget) and she told me that kiddos with RTS have a really high pain threshold so even if he isn't acting like he is in pain he very well may be. I just want this to all be over as I am sure Will does too. I will let you all know what happens next.

Still Waiting...

Good morning, today we are still waiting on the GI doctor (Dr. Barlow) to call us back and let us know what she wants us to do, wait on the CT machine to be fixed or go to another hospital and have it done. I have also called Dr. Rahman (peditrician) to ask his opinion on the situation. I would like to know what he thinks we should do. No one has ever said if this surgery is something that he will need asap or if it is okay to wait a few weeks. The weekend is fast approaching and I would like to know some answers before then. I will let you all know what I find out today, if anything...

Wednesday, April 11, 2007


Got a call at 1pm saying the CT machine is broken again. They are going to have to order a part so it will not be up and running until next week sometime. They are going to call me when they can get us in. I have called Dr. Barlow (GI doctor) to see if she thinks that the test is ergent enough to have it done somewhere else. I am waiting on a call back from her. I will let everyone know when I find something out. I am very frustrated right now. Will is still arching his back really bad (almost doing a backbend in my arms) and I can't help but think that he is in pain. You can't tell by looking at him, he continues to be a smiling happy little guy. I just wish that we could get this test done so that we can get some answers and get him on the path to recovery. I will keep everyone updated as soon as I find out something, until then...Backbends!!

One Long Day

Well, today is going to be a long day for Will. They called last night to schedule him for his CT scan. He will be having it done at 6pm tonight. He has to stop drinking formula at noon, no clear liquids after 3pm and we have to be at the hospital at 5pm. They are going to have an anethesialogist there, so that makes me feel better. But I am still worried about him being sedated, kiddos with RTS have problems with sedations. So there is extra worry for us with this CT scan. I hope that we get home at a reasonable hour tonight, but when he had his MRI done at 4pm we didn't get home until 10:30pm. So I would be surprised if we don't get home before midnight. I will get the site updated as soon as I can. Pray for the little guy today!

Tuesday, April 10, 2007

Waste of Time

Well, today was a complete waste of time for the most part. We were seen by Genetics and that went really well. We like going to see Dr. Swidler, Deb and Katherine, they are wonderful. Dr. Swidler talked to us about the possible abdominal surgery and she seems to think that it will be needed. We also asked her opinion on the g-tube, whether or not William would benefit from it. She seemed to think that he would benefit and it would be a good thing for him to have.
Then we went to have the CT scan done. Will could not eat after 11am (our appointment was at 2pm). They took us back about 1:20pm to get the IV and all that stuff done. (This is the same staff of nurses and doctor that did Will's MRI and they remembered us!! I wasn't very happy to see them either!!) The CT machine broke! So we had to be rescheduled. So Josh is going to have to take another day of work. They also wanted to have the anesthesialogist there when they sedate Will because of the complications that could happen with anesthesia (airway collapse) because of the RTS. So they are going to schedule a CT scan when the anesthesialogist can be there as well as the sedation nurses. We are waiting for them to figure out their schedules and call us back when they get it worked out. I am hoping that we can have it done this week still, but I am not sure.
So that is what we know now, nothing yet!!

Monday, April 9, 2007

A Man on the Move

Will is crawling everywhere! As I am typing this he is getting into his sister's toys. She isn't too happy about it, but she is dealing okay with it. It is so funny because most of the toys are bigger than he is. I have a feeling that I am going to have my hands full, if they weren't before! Ha!

Tomorrow's Happenings

Tommorow Will is having a CT scan to check out this belly. While we were having an upper GI the doctors noticed that his intestines are not in the right places, so to get more information we are going to have the CT scan done. There is one place in his small intestine that is enlarged and rotated, they are most concerned about that.
We also see Dr. Swidler tomorrow (genetics). That should be an easy appointment, no poking or rough tests. Dr. Swidler sort of oversees all of the tests and/or appointments that William has. She has scheduled him for all of he precautionary test (EEG, kidney ultrasound, opthamologist, etc). We like to go see Dr. Swidler, she is a wonderful doctor.
Today we are just going to prepare for tomorrow's CT scan and pray that it all goes well.

Sunday, April 8, 2007

Happy Easter

Easter Sunday, William has had a long day. With all of the visiting today he didn't want to eat. He doesn't do well with eating while in a crowd. So he has only had about 10 ounces today. I am worried that he may loose some weight, but maybe the higher calorie formula will help him out. He had fun visiting at Grammy and Papa's house and then to Grammy Abell's house. Everyone was happy to see him smiling and looking healthy. It is great having supportive family members!
Last night we dyed Easter eggs. Caroline LOVES to dye eggs, there is never enough. She had fun.