We went for our first finger stick INR test yesterday, 10/24/13. Her ideal range is between 1.8-2.2, or 2.0-2.5, depending on if you ask the surgeons or the cardiologist :). Thursday it was 4.3. Slightly alarming for me. Again, I emailed Angela who contacted Dr. VanBergen to formulate a plan: broccoli for dinner, no Coumadin Thursday or Friday night, half a dose Sat., etc, recheck INR Monday.
Friday, October 25, 2013
Thursday, October 24, 2013
Got the "blues" :(
Last night (10/23) at dinner Muriel was a bit blue. Her feet and nails were dusky. I checked her saturation, which has been around 85 at 1 liter of oxygen, and it was between 80-83. We raised her oxygen to 2, then 2.5 liters and eventually she turned pink and was having satutations as high as 92%! I emailed Dr. VanBergen's wonderful nurse Angela, and she said it is all okay as long as she returned to normal.
Home health nurse
Muriel has come to enjoy her thrice weekly visits from Cherry, our home healthcare nur. :)
Wednesday, October 16, 2013
Tuesday in the Hospital
I'm sorry I haven't posted but I have been slightly exhausted, both emotionally and physically since Friday. Friday night was very hard because once we did get the fever to 102 range, we were still worried. Of course it was a holiday weekend this past weekend, and of course Jeff went out of town for work on Sunday morning. Saturday Muriel was better, only having a 99.6 fever in the middle of the night, but all day she was fine. I should mention she has not been sleeping well at night, usually up at 11pm for medicine and then 1, 3, and 6am she's been waking up thirsty or vomiting or hot, and has alot of nasal drainage. Sunday morning Muriel woke up with a barking dry cough and again she was around 99. Jeff left and I took her to the pediatrician. He said it was probably a upper respiratory virus. So I relaxed and went about the rest of the day. Same routine for Monday, seemingly fine during the day, up at night with a low grade fever.
On Tuesday morning, I called our cardiologist, Dr. VanBergen's nurse Angela. Before I could finish telling her what has been going on, she said I needed to come in to the hospital for chest xray and blood work. Luckily, both girls were at preschool and my mom could pick them up at 11:30 and 2:00. It still took me forever to get out the door. Sunday on the way to church, our garage door broke (because Jeff is out of town). So the car with Muriel's rear facing car seat was trapped in the garage. I had to switch around car seats and put one in my mom's car. That sounds like a simple task. I loathe car seat installation, we all have talents and let's just say it is not my forte. That, plus getting oxygen tanks and packing a just-in-case overnight bag delayed departure considerably. We finally arrived at the hospital to the nurse awaiting or arrival. She sent us off to xray and labs. I saw Muriel's xray on the screen as soon as it was taken. I'm not a doctor, but it did not look "clean". I was immediately worried about another plural effusion. Muriel had blood drawn again-10ml!-for the third time in three weeks. Her little arms are bruised again. She had extra blood taken to see if any bacteria grow in a petri dish.
Angela met me in the lab and took us to the ECHO lab. She was wonderful and spent an hour talking with Muriel and I. Dr. Van Bergen looked at the xray and said it was good. I mentioned to Angela that I know I'm not a doctor, but it didn't look that clear to me. Angela said that was just the congestion, and the pediatrician was right, that it was just a virus. All her blood (white/red) were in normal range after just having surgeries. I asked her why when she had 103 fever was she having oxygen saturation all the way at 94, and Angela explained that the body's reaction when we have a fever is to have a higher cardiac output, thus more oxygen in her blood. Dr. VanBergen was in the PSHU yesterday, but he didn't come downstairs to see us, which made me happy, since he was helping truly sick kids! Dr. Ross did come to take a look at her and sent us on our way.
At any rate, the final consensus is Muriel is a-ok. Now we just need to get rid of the fever, which was 99.1 this morning. Too much tylenol does not help her liver congestion. I told Angela I'm not coming back to the hospital again until INR testing the 21st, and then the doctor on November 7th. :)
On Tuesday morning, I called our cardiologist, Dr. VanBergen's nurse Angela. Before I could finish telling her what has been going on, she said I needed to come in to the hospital for chest xray and blood work. Luckily, both girls were at preschool and my mom could pick them up at 11:30 and 2:00. It still took me forever to get out the door. Sunday on the way to church, our garage door broke (because Jeff is out of town). So the car with Muriel's rear facing car seat was trapped in the garage. I had to switch around car seats and put one in my mom's car. That sounds like a simple task. I loathe car seat installation, we all have talents and let's just say it is not my forte. That, plus getting oxygen tanks and packing a just-in-case overnight bag delayed departure considerably. We finally arrived at the hospital to the nurse awaiting or arrival. She sent us off to xray and labs. I saw Muriel's xray on the screen as soon as it was taken. I'm not a doctor, but it did not look "clean". I was immediately worried about another plural effusion. Muriel had blood drawn again-10ml!-for the third time in three weeks. Her little arms are bruised again. She had extra blood taken to see if any bacteria grow in a petri dish.
Angela met me in the lab and took us to the ECHO lab. She was wonderful and spent an hour talking with Muriel and I. Dr. Van Bergen looked at the xray and said it was good. I mentioned to Angela that I know I'm not a doctor, but it didn't look that clear to me. Angela said that was just the congestion, and the pediatrician was right, that it was just a virus. All her blood (white/red) were in normal range after just having surgeries. I asked her why when she had 103 fever was she having oxygen saturation all the way at 94, and Angela explained that the body's reaction when we have a fever is to have a higher cardiac output, thus more oxygen in her blood. Dr. VanBergen was in the PSHU yesterday, but he didn't come downstairs to see us, which made me happy, since he was helping truly sick kids! Dr. Ross did come to take a look at her and sent us on our way.
At any rate, the final consensus is Muriel is a-ok. Now we just need to get rid of the fever, which was 99.1 this morning. Too much tylenol does not help her liver congestion. I told Angela I'm not coming back to the hospital again until INR testing the 21st, and then the doctor on November 7th. :)
Tuesday, October 15, 2013
Worst. Night. Ever.
Thursday evening while I was tutoring Jeff fed the girls dinner and Muriel threw up her dinner and then twice more that evening. No fever. We looked at her records and it had been 3 days since her last BM. I blamed myself for not being more dilligent with giving het miralax. I think I thought of constipation as being a temporary problem, but with Muriel's diuretic regime, it seems to be an ongoing issue. Thurday night we thought she was constipated. Friday at 5am she had a low grade fever 99.6. We gave her Tylenol. Through the morning she didn't eat much, and we gave her more miralax and two supositories. By 1pm she again had a 99.9 temp. I gave more Tylenol. At 3:45 our home health nurse came and again she had a low grade temp. She advised we give Tylenol again at 4, and to call the doctors Saturday if she didn't kick the fever by then. I was hoping the fever was due to teething, since she's got a few coming in.
Of course Firiday I went out for dinner with my friend Kristi. Jeff texted me she had 102.5 fever. I rushed home. By 9:30 it was 103.5. We called the doctor and he told us to come in if we couldn't get the fever down within an hour. Well we did get it down, but it has been difficult to shake completely.
It is now Tuesday and I'm sitting with Muriel in the hospital waiting for a chest xray.
Thursday, October 10, 2013
Hospital Visit Today
We spent 4 hours at the hospital today for a clinic visit with Dr. VanBergen. We had blood drawn and a chest xray first. Her labs came back great! Her sodium was 139, an all time high. We are cutting back on one of the sodium suppliment doses as a result. Her potassium was 3.4, up from 2.5 last week. I attributed the rise in both electrolytes to her all Gatorade liquid intake. She may have cavities by 2, but the Gatorade has potassium and sodium! Her chest xray was beautiful.
Dr. Shetty and her nurse Janise brought their pacemaker gear to the party and she told us she is looking good and she will adjust her pacemaker in a month in order to save battery life and put off the next surgery for as long as possible. Muriel did well with that test thanks to nurse Angela blowing bubbles to distract!
By the time she was up for her EKG and Echo, Muriel was not happy. She cried her way through the echo and finally fell asleep at the end. Then the echo tech redid most of the shots since she was calm.
Dr.VanBergen said everything was good. She is not however getting rid of the lasix or diuril diuretics for another 3 months. Aditionally, we shouldn't expect to get rid of the oxygen for another 2-3 months. This news is more than slightly disappointing. I had thought she would be off oxygen in 2-3 weeks, not months. I suppose Muriel is healing at her own pace. We also learned she will have her fenestration closed in around 6 months. That will only be an overnight trip to the hospital. Our next appoinent isn't for a month, with one trio to check her INR level in two weeks.
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