Answers and a Plan

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In my post after our second visit to St Louis Children’s Hospital (SLCH) in February, I mentioned we had some possible answers to Reiss’s coughing, puking and coughing up blood issues.  One of the possibilities included engorged vessels that had ruptured.  But when the pulmonologist and ENT doctors went into her lungs during the bronchoscopy they did not find any evidence of bleeding. We left no real answers and were told that this coughing up blood was her new baseline; her new normal.

After Reiss coughed up blood 8-10 times and puked with blood 4 times on Sunday, we decided to go back to the ER at Mercy Hospital in Springfield and ask to be transferred to SLCH.  Upon arriving at SLCH, we were firm with our wishes to take a look into Reiss’s lungs and to also re-check the GI tract.  We arrived at SLCH at 6:00am on Monday and were scheduled for a bronchoscopy and an upper endoscopy that afternoon.

What They Found

The upper endoscopy came up clean.  They did biopsy some areas to test for an underlying disorder of some type (the doctor was not specific, but did mention that the coughing and puking could be a symptom of those).  We should have these results tomorrow,

The bronchoscopy did show evidence of bleeding.  The lungs have grown extra capillaries that reside near the surface of the tissue in the lungs.  To clarify:  These extra capillaries were the  “engorged vessels” that the prior pulmonary teams saw in previous bronchs. The prior teams thought that these vessels were the same vessels that a normal person (non-CHD person) would have in the tissue within the lung.  But since seeing these vessels on the bronch is unlikely, they thought these vessels must be engorged.  The team this week, however, does not think they are engorged, but are just additional capillaries that the normal person does not usually have.   They are not sure why these extra capillaries are there, but it could include:

  • the lungs are growing extra capillaries to increase oxygen rich blood flow (a side effect of her heart defect)
  • the lungs grow extra capillaries due to hormone deficiencies due to how the Glen reroutes blood flow, passing the filtering process of the liver.
  • this was just part of her anatomy from the start

The team this week found irritation and redness, as well as pools of blood, clotted blood and streaks of blood in both sides of her lungs – evidence that these capillaries had burst earlier in the week.  They believe that rough coughing and vomiting are major contributing factors in bursting these capillaries.

They also found infection in the lungs and her test for RSV came back positive.  This is the respiratory virus we have been taking synagis shots monthly to try to avoid. (double sad face.)  We did miss our monthly synagis shot for February since we have been in the hospital three times over the past 5 weeks, but then again, the synagis shot isn’t a 100% deterrent.  She might have got RSV any way.  RSV has increased Reiss’s coughing, which could very well burst another capillary. So far so good, on that front.  We continue to cringe each time she coughs. Since it is a virus, there isn’t a drug we can take to cure it.  With her underlying lung issues, though, they are giving her albuterol every 4 hours and that seems to help.  Hopefully the RSV subsides by the end of this week.  It seems that every time we leave the hospital with a plan to reduce coughing, we leave with an issue that increases coughing!

Fixing the Issue

How can we decrease the prevalence of these capillaries? We can’t.  At first, the doctors played with the idea of adding an oxygen treatment to Reiss’s daily regimen.  Since the answer to the capillary issue cannot be definitely determined to be because of the reduced pulse ox stats, they decided against this.

Instead, they are treating the chronic cough and puking.  The idea is that the chronic cough and daily puking causes stress on these vessels, causing them to burst.

How do we decreases her cough?

  • Changing her asthma medicine to a different prescription and changing it from an inhaler to a nebulizer – maybe the 15-20 minutes of a warm mist twice a day will help also.
  • Keeping a rescue inhaler– Albuterol in both a nebulizer and inhaler form
  • Adding allergy medicine – Zyrtec and also an allergy/asthma medicine – Cingulair
  • Sending her to a speech pathologist and dietitian.  There are times when Reiss gags and pukes after just one bite of some foods.  The speech pathologist will make sure she learns how to swallow properly without aspiration.  The dietitian will identify foods that may pose as a texture issue for Reiss, along with other dietary concerns.  If she is aspirating, this could be causing her cough also.

Additional Tests

We will hopefully be going home tomorrow (yeah!).  Before we leave we are going to have a swallowing study to check to see if Reiss is aspirating any fluids or food.  The last time we were here, a speech pathologist watched Reiss eat and determined she was a “skilled eater.”  However, Reiss was adamant at that point about not eating and the therapist literally only saw her take one drink of apple juice and three bites of her dinner.  We were not very convinced with that visual test, which is why we were glad that the pulmonologist ordered the swallowing study for tomorrow.  We will know the results of that test the same day.

We will also have a sweat test to test for cystic fibrosis. The doctors think this is highly unlikely, while not completely 100% unfathomable, given her reaction to the bronchoscopy and the RSV this week, but would still like to have the results to at least rule out CF.  This test is done only as an outpatient.  Once we have been discharged from 8 West, we will visit another area of the hospital for this test, which could last 1 to 1.5 hours.  We will know the results of this test by Thursday end of day at the latest.

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Many Thanks

Thank you for the prayers, notes and gifts for Reiss.  We are appreciative of all of our friends, family and followers and how they have lifted our spirits during this stressful time.  What a great support system you are!  We are happy with answers and plan; and also mildly hesitant knowing from experience that sometimes answers can be dis-proven later on.

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