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Cook Hospital Day 1 - Update

Thursday, November 12, 2009

Well, we are settled in our regular hospital room at Cook Children's Hospital.  No NICU, no PICU.  Just a regular room.  This is great for a variety of reasons but mainly because the private room has both a couch that makes down into a bed and an adjoining bathroom we can use. (If we had gone to the PICU, we would not have a separate room.)

"Today" really started around midnight last night when we made the decision to go to the ER.  Bennett's behavior the last 4 days at home has not been normal.  Yesterday, we concluded there are really only two things Bennett does: sleep and scream in pain. We kept rationalizing why Bennett might be so lethargic and why he was hurting, but nothing we did seemed to help either one of the symptoms.

We called the doctor last night and were advised to go to the ER because Bennett could be dealing with a serious infection called sepsis.  However, we hated to go to the local ER and risk being admitted.  We knew if we were admitted, even just for observation, we would miss our CF Clinic appointment at 9:30am Thursday.  So, we decided to get in the car immediately and drive up to the ER at Cook Children's.

By 2am, we were in the emergency room explaining our concerns.  A hour later, after an abdominal x-ray and bloodwork, the ER doc concluded that Bennett was not septic but he was glad we had our appointment that morning.  Since he didn't feel like Bennett needed to be admitted for sepsis symptoms, he offered for us to just stay in the ER room we were in until the early morning.

We considered going to a hotel but by the time we would have been able to check in and get settled, it would have been time to check out.  So, we negotiated a way so that each of us had one half of the ER stretcher with our little Bennett burrito in the middle. 

Around the time of our CF appointment, we checked out of the ER and walked across the street to the CF Clinic.  Fortunately, the nurses didn't turn us away despite the fact we had not had a shower and could hardly keep our eyes open. 

Adrenaline finally kicked in and we were able to keep it all together for the next few hours as we met with Bennett's CF team, one by one.

We met with the medical assistant to get Bennett's vitals...then, the charge nurse to establish her role in helping us after we leave the clinic...next, the social worker, who spoke to us about insurance and finances...then, the nurse coordinator, who is sorta our "go to" person at all times...later, the nutritionist...and finally Dr. Dambro, the pulmonologist and main doctor in charge of the team.

Dr. Dambro seemed to really hear our concerns about Bennett's behavior and his lack of gaining weight.  She examined Bennett and felt overall that he's doing really well.  She agreed that Bennett was not septic butshe did see him as being "weak." 

She suggested that we go ahead and admit Bennett in the hospital for observation and to establish his care.  Basically, Dr. Dambro wanted to adjust Bennett's CF medical care regimine and also arrange for some other experts at the hospital to examine him.

Within 3 hours of being at the CF Clinic, a room had been secured and we were admitted to the hospital.  Fortunately, we had anticipated that he might be admitted so we had packed the car with enough clothes and toiletries for one night.

It wasn't but a few minutes of being in Bennett's hospital room before the experts started rolling in again.  First, the Pediatric Surgeon came to look at Bennett.  Then, the Child Life Specialist stopped by to let us know how she could help.  The nurse coordinator from the CF Clinic came by to make sure we were all set up.  After she left, the gastroenterologist did her thing.

The docs have changed quite a few things regarding Bennett's care.  And we've been warned that by the time we leave, things may have completely changed again.  But, at this point, Bennett no longer has to use a nebulizer or albuterol (unless he gets an infection).  He will get Chest Physical Therapy (CPT) only twice a day (instead of 4 times a day).  Bennett's formula is going to be tweaked to increase his calories and help with acid reflux (probably the reason he screams out in pain).  And Bennett will now get Prevacid twice daily instead of once.

The Pediatric Surgeon here will be taking over Bennett surgery care.  Right now, he would like to wait another 6 weeks before he puts Bennett under for his "Humpty Dumpty" surgery.  However, there are a few other things we are waiting on (such as Bennett's Hirshsprung biopsy results and a contrast enema test to be done tomorrow.)

On deck for tomorrow (not including his contrast test) is that Bennett is getting a gastric button put in (hooray!) and is being circumcised (big hooray!!...Bennett's health was too critical to have him circumcised after he was born).  Outside of tomorrow's procedures, we will meet with the doctors again to monitor how things are going.  

Today has been long but it has been good.  We are finally getting satisfactory answers to our questions and feel like Bennett is getting excellent care he can get.  How fortunate we are to be able to have the best of care for our sick little boy!

While we are very disappointed to have to be in the hospital again, we are feeling hopeful that this small setback of sorts is temporary and will ultimately help Bennett stay out of the hospital in the future.

God is so good.

One Response to “Cook Hospital Day 1 - Update”

  1. He is good! And so happy to hear that Bennett is in such good hands (medically speaking). I'm sure it means so much to have finally met the people who will be helping him long-term. Kiss that sleeping babe for me!

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