Wednesday, October 17, 2007

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.

video

Monday, October 15, 2007

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!

Thursday, October 11, 2007

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!

Wednesday, October 10, 2007

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.

Monday, October 08, 2007


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...

Sunday, October 07, 2007

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...

Monday, October 01, 2007

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.