Mia's Memoirs
(Page 15 of 17: Viewing Diary Entry 141 to 150)
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Cardiology appt.January 22nd 2013 7:57 am[ Leave A Comment | 2 people already have ]
There hasn't been any improvement with the episodes so they worked Mia in this afternoon at 11:30. We will post more information once we come home.
Pulmonary HypertensionJanuary 22nd 2013 1:47 pm[ Leave A Comment | 8 people already have ]
After a neurology consult and several more cardiology tests they found out she also has pulmonary hypertension. They sent in a prescription for a vasodilator that will hopefully help reduce or eliminate the syncope episodes. We just have to wait a few days for it to arrive.
The new medication has arrived!January 24th 2013 12:19 pm[ Leave A Comment | 3 people already have ]
Wonderful news! The new medication has arrived and much faster than we had expected. She has already had her first dose and now we just have to hope it not only helps her lung function but also will result in helping to prevent the syncope episodes she has been experiencing. Overall she has been doing well so if this medication will work as we are hoping it will, she can continue to have a great quality of life. She is a really strong girl and we are doing what we can on our part to keep her that way.
Bad reaction to the new medicationJanuary 25th 2013 6:35 am[ Leave A Comment | 8 people already have ] Mia started to have a deep chested terrible cough just hours after receiving the vasodilator. I talked to her cardiologist first thing this morning. We have stopped the medication to see if it is truly a side effect or if she has gone back into CHF. I believe it is a side effect. I don't want to believe she is back in CHF. She is still alert and seems to be doing OK otherwise. I'm just very disappointed this medication doesn't seem like it will be the answer. The cardiologist wants her to take an extra dose of lasix this afternoon and we need to call the office again this afternoon to give an update.
Still no improvementJanuary 27th 2013 11:42 am[ Leave A Comment | 5 people already have ]
Mia has been off the vasodilator for a few days now and there is still no improvement with the coughing. She also had another syncope episode this afternoon. I'm not 100% convinced she is in CHF because the other times during the day she still seems to be doing fairly well. She hasn't been very active but she is still eating some and occasionally wanting to play. Perhaps the coughing had nothing to do with the new prescription. I'm not one to believe in coincidence but I would think being off the med would have at least shown some improvement if that had been the trigger. I just hate to believe there is yet another medical issue she has to deal with.
We're going back to the UJanuary 28th 2013 7:02 am[ Leave A Comment | 4 people already have ] They think there might be something else going on so Mia is going back to the U in a couple hours. We just seem to be fighting a losing battle and right now don't think we can handle any more bad news. I'm just hoping it isn't terrible. We love Mia so much but right now we're not sure we are being fair to her. Praying for a miracle
Newest update, back from the UJanuary 28th 2013 12:19 pm[ Leave A Comment | 5 people already have ]
No terrible news but no answer for the coughing either. They do no think it is contributed to taking the vasodilator for the pulmonary hypertension so they want us to start her back on that today to help prevent the syncope episodes. I'm honestly scared to death to give it to her again but they feel is isn't connected with the new cough. She is not back in CHF and the lungs are still clear but I didn't think she was simply because she is still eating and bright eyed.
Brrrrrrr it's cold and a pupdateJanuary 30th 2013 5:58 pm[ Leave A Comment | 6 people already have ]
Temps plummeted again today and put us back in the deep freeze. We will be lucky if we even reach zero degrees tomorrow. I am beyond ready for spring, I am not a winter kind of gal. Luckily it should be a short lived cold front.
Holding steadyFebruary 3rd 2013 7:10 am[ Leave A Comment | 6 people already have ]
I'm so glad it is February! January ended with me having 13 syncope episodes in just a short period of time but so far none this month! I know it is early in the month but I'll take it :)
It's a never ending roller coasterFebruary 9th 2013 10:10 am[ Leave A Comment | 7 people already have ]
Just when everything was going so well, we are now back sliding downward. Mia has been feeling pretty good the first week of February. Her cough had subsided and had gone from getting the medicine three times a day to just once in the evening. She also hadn't had a syncope episode since late January. We were certainly hoping things were on an upswing. Last night the cough started to increase again and in the evening she had her first syncope episode of the month. I don't know if we can ever really keep them away and perhaps this is just her norm now but it still continues to be such a heartbreaking experience. We upped her cough medication and will give an extra dose of the vasodilator today. With any luck we can help turn this back around before it gets any worse.
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