A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

8:23 PM

Home at last!




I can't believe we are all back at home!
The 4 doctors consulting on his case all agreed that he was looking well, and since he had been off oxygen for 24hrs was okay to come home. The pulmonologist said he didn't want Sam catching anything else in the hospital, so after stocking up on nebulizers, steroids and antibiotics, he was finally released!

The nursing team of Children's Hospital's 7th floor is the best we've ever seen. They were courteous, caring, attentive and inciteful. They offered sound advice and frank feedback, even when it was hard to hear. We know that several of them were heaven-sent and arrived just when we needed them. They were indeed angels unaware.

We are so happy to be ending this hospital blog.

We can't do so without expressing our humble gratitude to all of you. To the house cleaners, the kid watchers, the caring phone callers, the soup/casserole/carrot cake makers, the care basket deliverers and the grocery shoppers. To Esther's family (who all about hopped on a plane Thrusday when they heard of the bad turn Sam had taken) and to the sister who did end up coming. To Steve's family who dropped their lives to be there for anything we needed. To all who sacrificed time with their own families to make sure we were comfortable. To those who took on shuttling and feeding and playing with our kids. To the shoulders we cried on, and those who cried with us, as well as those who listened and empathized. Especially for the prayers and positive thoughts sent our way. We were overwhelmed with phone calls and door bells and emails and foodstuffs (mostly General Mills!).

We are more than humbled by your sacrifice. We feel so very blessed and loved. For the burdens you truly lifted we are indebted to you. You have done more than take a bad experience and make it better, but you have taught our children what a great blessing family and friends can be, and that charity is the pure love of Christ.


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These pictures were all taken Saturday when Sammy was feeling better...


2:25 PM

Tuesday evening

The swallow study will now be done in clinic sometime next week. The pulmonologist really wants Sam out of the hospital before he catches something else.

Arrangements are being made for them to come home tonight!

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9:10 AM

Tuesday

Sam had a great night off of oxygen.  He looks great again today.
All the doctors have agreed that he should be able to return home today.
Steps are being taken in that direction as well! Yeah!!!
 
His swallow study is still pending, but if that comes back negative then we should be able to leave.
He will have several follow up visits in the next few weeks and will need to continue a nebulizer for the rest of virus season...
 
Thanks again for all your help, thoughts and prayers.  We couldn't have made it through this without you all.
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11:14 AM

Monday 2

Sam is still doing well off of oxygen.  He has had 3 doctors consulting about him this morning and I'm waiting to hear from pulmonary.
 
His swallow study is rescheduled for tomorrow morning, and I'm waiting to hear when we will go down for his chest x-ray today.
 
His coloring looks so good and he continues to be a very happy baby!

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10:23 AM

Monday 2

Sam is still doing well off of oxygen.  He has had 3 doctors consulting about him this morning and I'm waiting to hear from pulmonary.
 
His swallow study is reschedueled for tomorrow morning, and I'm waiting to hear when we will go down for his chest x-ray today.
 
His coloring looks so good and he continues to be a very happy baby!

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8:07 AM

Monday morning

Sam is looking even better this morning - the oxygen was disconnected this morning, and last I heard, he has been breathing air on his own for over an hour, maintaining safe blood-oxygen saturation levels. One cord down, two to go. Rumor has it we'll be able to get rid of the IV later today as well.

One of the doctors came in this morning and said he'd need to stay a few more days to finish the antibiotics (I'm sure HealthPartners would love that!), and Esther insisted we could finish that up at home. It's looking REALLY good for a Tuesday discharge.

On the docket for today: xray at 1:00, hoping for some signs of improvement there. Swallow study thereafter to look for any ingestive abnormalities.

More on test results later...
8:37 AM

Sunday update

Dr. Wheeler (pulmonary specialist) came in today and cautioned us about our surging optimism. He made a good point: the patient presents well and obviously feels better, but the xray and test results still indicate there is a problem. The xray he said is way outside the range of "normal" baby pneumonia. Since the test results are only ruling things out, we have no clear answer on what is going on.

The bronchoscopy is still very much on the table, if not while still hospitalized, maybe in the following weeks in the clinic if a cause is still not clear. He indicated they'll run at least 10 tests from the bronch samples. Also a possibility is a lung biopsy.

Long story short, something more complicated and less obvious is still going on.

They plan to do a swallow study before we're discharged to see if the food goes down the right path, and if there's any reflux.

We are not talking about discharge yet, and since he's still on oxygen (70%), we're still at least a couple of days away...
3:26 PM

Late Saturday Update

Well, according to this morning's xray there was little (if any) improvement since Thursday. But, as we've heard, the chart is less important than the patient. Sam the xray film is very sick, but Sam the baby is having a very good day.

Spirits are very high as he has really bounced back from a bad morning. He has been alert when he's awake, coughing less, needing less oxygen, and sleeping soundly. In fact, for the first time in over a week, Esther left the hospital for a couple of hours, and he took a bottle from dad! It's been a long time since he's done that.

We are cautiously optimistic at this point that he really is making strides in fighting this off. Whether it's clinically attributable to the Azithromycin or the steroid, I know that the prayers have lightened our load.
9:26 AM

48 hour holding pattern

Dr. Wheeler said the xray from this morning shows a very slight improvement, and feels more comfortable with continuing the steroid treatment than proceeding with a traumatic bronchoscopy. So, for now we are just holding tight, looking for signs if improvement. If he's better by monday, there's a good chance he'll go home early next week.

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7:28 AM

Saturday AM

He slept fairly well, and we got a good xray. Waiting on radiologist interpretation as well as consult from the pulmonologist as to whether to proceed with bronchoscopy. Our layman's interpretation of the film is no change.

Third round of azithromycin and second round of steroid given.

Still waiting on some test results.

No food since 4am, so he is grumpy.