Sun 2/28 - follow-up chest x-ray - showed the pneumonia in his right lobe has slightly improved but he has infiltrates throughout his lungs (viral bronchitis); started an IV for antibiotic administration (still Rocephin). Discussed P's case history with pedi on call and she believes he's aspirating as well. She recommended a bronchoscopy for bronchiole washing to determine is he's micro aspirating. We may be here until Tuesday (slight chance of staying until Wednesday). 10lbs 6oz; Started running fever again around midnight, 101.4*
Please keep praying...
Sunday, February 28, 2010
Saturday, February 27, 2010
P is in the Hospital
P has been hospitalized - here's a quick rundown...
Th 2/18 - 2mo checkup - 9lbs 14oz; had abdominal ultrasound and swallow study --- no pyloric stenosis, malrotation of intestines, or esophageal stricture.
Sun 2/21 - ER visit for blue episode (usual choking after feeding, turned blue and limp, performed heimlich - RSV negative)
Mon 2/22 - visit with GI doc - videofluroscopic swallow study (w/speech pathologist) showed no aspiration; did show refluxing the entire time he eats; stomach appeared to be full after 1.5-2oz --- Cardiology appt - EKG and ECHO showed a structurally sound heart (no VSD) - II/VI (innocent) murmur --- GI doc upped his Nexium to 20mg BID, 1/2tsp milk of mag and thickened feeds (1tbsp oatmeal per 2oz of EleCare)
Tu 2/23 - follow-up with pedi - 10lbs 4oz - discussed pros/cons of apnea monitor; discussed GI and cardio findings
Wed 2/24 - respiratory therapist delivered apnea monitor
Fri 2/26 - monitor went off at 2:45am because his heart rate was over 220bpm with shallow, rapid breathing --- 10:45am temp of 101.6* --- pedi appt at 1:30pm - 10lbs 2oz - 101.5* - pedi heard wheezing; right ear infection;ordered chest x-ray, bloodwork (CBC, neonatal meningitis screen, blood cultures), RSV test, Influenza A and B tests and urinalysis.
Chest x-ray showed pneumonia in the upper lobe of his right lung. White blood cell (WBC) count is 21,000. RSV, Influenza A and B and meningitis came back negative. Blood culture takes 24-48hrs for a positive or negative and another 48-72hrs to identify the growth. No word on the urinalysis yet.
His highest temp was 102.3* - during this temp, his heart rate was hovering around the 200s and resp rate 80-100; he vomited his entire 9pm feeding. Finally the tylenol kicked in and his temp went back down (as well as his heart rate and resp rate).
Sat 2/27 - WBC 19,800; we'll definitely be here until Monday
If his O2 drops below 94 he'll go under an oxygen tent (at last check he was 94).
He is getting breathing treatments with Xopenex every 6hrs and daily intramuscular rocephin injections.
I spoke with his GI doctor about his pneumonia and the admit. He said if the blue episode was isolated, he would believe the VSS (swallow study with a speech pathologist) when it showed no aspirations. But in light of P having pneumonia in the right upper lobe (which is consistent with aspiration) he is highly suspicious that P is aspirating. On Mar 8, we'll undergo further testing. We'll have another VSS - if that doesn't prove aspiration, there are a few other tests (one including an NJ tube which I'm leaning towards because if we do that and his episodes go away its proof he's aspirating). If we find out he is aspirating P will have a nissen fundoplication (surgical procedure to permanently tighten the lower espohageal sphincter muscle) and a g-tube (feeding tube that enters the stomach from the outside abdomen) for an unspecified amount of time (poss 6-12 months) and his GI doctor will attempt to figure out why he's aspirating (via MRIs, bronchoscopy, etc).
Th 2/18 - 2mo checkup - 9lbs 14oz; had abdominal ultrasound and swallow study --- no pyloric stenosis, malrotation of intestines, or esophageal stricture.
Sun 2/21 - ER visit for blue episode (usual choking after feeding, turned blue and limp, performed heimlich - RSV negative)
Mon 2/22 - visit with GI doc - videofluroscopic swallow study (w/speech pathologist) showed no aspiration; did show refluxing the entire time he eats; stomach appeared to be full after 1.5-2oz --- Cardiology appt - EKG and ECHO showed a structurally sound heart (no VSD) - II/VI (innocent) murmur --- GI doc upped his Nexium to 20mg BID, 1/2tsp milk of mag and thickened feeds (1tbsp oatmeal per 2oz of EleCare)
Tu 2/23 - follow-up with pedi - 10lbs 4oz - discussed pros/cons of apnea monitor; discussed GI and cardio findings
Wed 2/24 - respiratory therapist delivered apnea monitor
Fri 2/26 - monitor went off at 2:45am because his heart rate was over 220bpm with shallow, rapid breathing --- 10:45am temp of 101.6* --- pedi appt at 1:30pm - 10lbs 2oz - 101.5* - pedi heard wheezing; right ear infection;ordered chest x-ray, bloodwork (CBC, neonatal meningitis screen, blood cultures), RSV test, Influenza A and B tests and urinalysis.
Chest x-ray showed pneumonia in the upper lobe of his right lung. White blood cell (WBC) count is 21,000. RSV, Influenza A and B and meningitis came back negative. Blood culture takes 24-48hrs for a positive or negative and another 48-72hrs to identify the growth. No word on the urinalysis yet.
His highest temp was 102.3* - during this temp, his heart rate was hovering around the 200s and resp rate 80-100; he vomited his entire 9pm feeding. Finally the tylenol kicked in and his temp went back down (as well as his heart rate and resp rate).
Sat 2/27 - WBC 19,800; we'll definitely be here until Monday
If his O2 drops below 94 he'll go under an oxygen tent (at last check he was 94).
He is getting breathing treatments with Xopenex every 6hrs and daily intramuscular rocephin injections.
I spoke with his GI doctor about his pneumonia and the admit. He said if the blue episode was isolated, he would believe the VSS (swallow study with a speech pathologist) when it showed no aspirations. But in light of P having pneumonia in the right upper lobe (which is consistent with aspiration) he is highly suspicious that P is aspirating. On Mar 8, we'll undergo further testing. We'll have another VSS - if that doesn't prove aspiration, there are a few other tests (one including an NJ tube which I'm leaning towards because if we do that and his episodes go away its proof he's aspirating). If we find out he is aspirating P will have a nissen fundoplication (surgical procedure to permanently tighten the lower espohageal sphincter muscle) and a g-tube (feeding tube that enters the stomach from the outside abdomen) for an unspecified amount of time (poss 6-12 months) and his GI doctor will attempt to figure out why he's aspirating (via MRIs, bronchoscopy, etc).
Wednesday, February 24, 2010
Tuesday, February 23, 2010
P [feeding issues, blue episode, ER, GI and cardio]
So the last few days have been realllly long!
Sunday - I was feeding P around 9:15pm. Afterward he had one of his usual coughing/choking episodes only this time it proved to be not so normal. He started choking harder than I've ever seen him and then he turned blue and went limp. I immediately flipped him over and started performing the Heimlich manuver. He vomited and went back to coughing/crying. I calmed him down and I called the pediatrician on call - she was pretty useless during our first conversation but she called me back 10 minutes later and advised me to take him into the ER to have him checked out (covering her self, you think?!)
We went to the local ER and it was PACKED. I explained to them what had happened and apparently a blue baby who had the Heimlich performed is just not that important. We waited and waited, were triaged (his stats were: HR - 171bpm; 99.2 F; O2 99%; Resp rate 44) and waited some more. Finally after 2 hours, I told the registration desk that we were leaving. She asked for his name and said "oh well he does have a low grade fever... let me see if we have an open room" {side note: I personally don't consider 99.2 to be low-grade, but hey no problem in letting it work in our favor this time!] --- within 5 minutes we were in a private room in the ER; 15 minutes later the doctor came in and examined P and spoke with us at length about the past 8 weeks of his life. He did an RSV test just to rule it out (we knew it would come back negative) and he told us to follow-up with our GI doctor (that appt was scheduled for the next morning).
Monday - We saw the GI doctor at 10am --- He weighed in at 10lbs 2oz (such a peanut at 9 weeks old --- I explained P's feeding issues and any other symptoms I could think of. We spoke about P's milk protein intolerance - he strongly advised us leaving him on EleCare because there is absolutely nothing for him to be allergic to in it. He asked me several other questions and then examined P. He said he could hear a II/VI murmur which he believed to be functional; he also stated that P could possibly have a tiny VSD (ventricular septial defect). He said that at times feeding issues are due to cardiac problems. His plan of attack was: (1) Videofluoroscopic Swallow Study (done with a radiologist and speech pathologist to assess for aspiration - food/liquid entering the trachea) (2) EKG; (3) Echocardigram; (4) thicken P's feedings - 1 tbsp of oatmeal per every 2oz; (5) increase Nexium to 20mg per day (10mg - am and 10mg - pm); and (6) 1/2 tsp milk of mag daily. If the speech pathologist saw serious aspirations we were going to be admitted into the hospital and P would get a G tube.
The VSS went well - no major aspirations noted; but we did notice a few other things. P refluxes the ENTIRE time he eats. After the first few swallows hit his belly it plays a constant up and down game with no real break. After approximately 1.5oz of liquid (thin and thickened barium/water mix) his stomach was full - we've been feeding him 3oz this entire time - we've never forced it on him and we only recently moved him up to 3oz. The speech pathologist recommended us taking him down to 2oz, thickened and feeding him more frequently. I walked back to the medical plaza and caught the GI doctor in the hallway. I explained to him the findings of the VSS and it said he was happy to hear that overall P protects his airway. He said to reduce his intake to 2-2.5oz thickened. He also explained that P may not eat more often and quite possibly less often because without oatmeal each oz is 20 calories and with oatmeal it's 25 calories.
We went to the cardiologist's office. His stats were: left leg BP 88/60; right arm BP 99/72; Resp Rate 40; and his HR jumped anywhere from 167-182 (primarily stayed from 172-177). They did his EKG and then the cardiologist came in. He said his EKG looked good and that we were going to have an echocardiogram next. I asked about P's higher than normal heart rate. He said on the EKG his electrical pathways appeared to be working normal and he had a feeling that the echo would support that as well. We walked across the hall for his echo - he was such an amazing baby during all of this testing! His echo showed that his heart is structurally sound, no VSD and no electrical problems. The doctor told me that his feedings issues are GI related only (whew... talk about a huge sigh of relief!)
So for now, here's where we stand: Nexium 20mg a day, 2-2.5oz thickened feedings and 1/2 tsp milk of mag per day. He told me that while he does not anticipate any more blue episodes if P were to have one, we are to contact him immediately and P will be hospitalized. If we don't see any major improvement with his coughing/choking episodes by our 2 week follow-up, we will most likely be hospitalized and P will get a G tube. He completely anticipates this new regimen to do the trick.
We remain hopeful.
Sunday - I was feeding P around 9:15pm. Afterward he had one of his usual coughing/choking episodes only this time it proved to be not so normal. He started choking harder than I've ever seen him and then he turned blue and went limp. I immediately flipped him over and started performing the Heimlich manuver. He vomited and went back to coughing/crying. I calmed him down and I called the pediatrician on call - she was pretty useless during our first conversation but she called me back 10 minutes later and advised me to take him into the ER to have him checked out (covering her self, you think?!)
We went to the local ER and it was PACKED. I explained to them what had happened and apparently a blue baby who had the Heimlich performed is just not that important. We waited and waited, were triaged (his stats were: HR - 171bpm; 99.2 F; O2 99%; Resp rate 44) and waited some more. Finally after 2 hours, I told the registration desk that we were leaving. She asked for his name and said "oh well he does have a low grade fever... let me see if we have an open room" {side note: I personally don't consider 99.2 to be low-grade, but hey no problem in letting it work in our favor this time!] --- within 5 minutes we were in a private room in the ER; 15 minutes later the doctor came in and examined P and spoke with us at length about the past 8 weeks of his life. He did an RSV test just to rule it out (we knew it would come back negative) and he told us to follow-up with our GI doctor (that appt was scheduled for the next morning).
Monday - We saw the GI doctor at 10am --- He weighed in at 10lbs 2oz (such a peanut at 9 weeks old --- I explained P's feeding issues and any other symptoms I could think of. We spoke about P's milk protein intolerance - he strongly advised us leaving him on EleCare because there is absolutely nothing for him to be allergic to in it. He asked me several other questions and then examined P. He said he could hear a II/VI murmur which he believed to be functional; he also stated that P could possibly have a tiny VSD (ventricular septial defect). He said that at times feeding issues are due to cardiac problems. His plan of attack was: (1) Videofluoroscopic Swallow Study (done with a radiologist and speech pathologist to assess for aspiration - food/liquid entering the trachea) (2) EKG; (3) Echocardigram; (4) thicken P's feedings - 1 tbsp of oatmeal per every 2oz; (5) increase Nexium to 20mg per day (10mg - am and 10mg - pm); and (6) 1/2 tsp milk of mag daily. If the speech pathologist saw serious aspirations we were going to be admitted into the hospital and P would get a G tube.
The VSS went well - no major aspirations noted; but we did notice a few other things. P refluxes the ENTIRE time he eats. After the first few swallows hit his belly it plays a constant up and down game with no real break. After approximately 1.5oz of liquid (thin and thickened barium/water mix) his stomach was full - we've been feeding him 3oz this entire time - we've never forced it on him and we only recently moved him up to 3oz. The speech pathologist recommended us taking him down to 2oz, thickened and feeding him more frequently. I walked back to the medical plaza and caught the GI doctor in the hallway. I explained to him the findings of the VSS and it said he was happy to hear that overall P protects his airway. He said to reduce his intake to 2-2.5oz thickened. He also explained that P may not eat more often and quite possibly less often because without oatmeal each oz is 20 calories and with oatmeal it's 25 calories.
We went to the cardiologist's office. His stats were: left leg BP 88/60; right arm BP 99/72; Resp Rate 40; and his HR jumped anywhere from 167-182 (primarily stayed from 172-177). They did his EKG and then the cardiologist came in. He said his EKG looked good and that we were going to have an echocardiogram next. I asked about P's higher than normal heart rate. He said on the EKG his electrical pathways appeared to be working normal and he had a feeling that the echo would support that as well. We walked across the hall for his echo - he was such an amazing baby during all of this testing! His echo showed that his heart is structurally sound, no VSD and no electrical problems. The doctor told me that his feedings issues are GI related only (whew... talk about a huge sigh of relief!)
So for now, here's where we stand: Nexium 20mg a day, 2-2.5oz thickened feedings and 1/2 tsp milk of mag per day. He told me that while he does not anticipate any more blue episodes if P were to have one, we are to contact him immediately and P will be hospitalized. If we don't see any major improvement with his coughing/choking episodes by our 2 week follow-up, we will most likely be hospitalized and P will get a G tube. He completely anticipates this new regimen to do the trick.
We remain hopeful.
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