INR check 10/24

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.

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. :)

Nap time!

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. :)

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.

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.

Movin and groovin

Aunt Kate left today after an entire month away from home.

Muriel enjoyed the park today!

Hospital Visit

Muriel had a fantastic trip to the hospital!!! She has not lost too much weight and NP Carrie said it was to be expected seeing as she is on all the diuretics and the fat free diet. We were hoping to get rid of one of the diuretics, diuril, and only have lasix, but only one dose of diurul was removed from her medicinal regime. She had blood drawn from a fantastic phlebotomist, one needle stick was all it took. From the blood work, we learned her kidneys showed she was dehydrated (expected) and Muriel's potassium was low. Carrie spoke with Dr. Sajan and considered adding another supplement for her, but instead upped the aldactone and suggested bananas and kiwi. Muriel isn't loving bananas as of late, which is a bummer since she used to eat 2 for breakfast every morning. We bought kiwis and gave her a bite; she actually liked it! Then I thought, "Hmm, better check those for vitamin K" (interferes with her Coumadin blood thinner). Of course, kiwi has vitamin K in it, so those are out. My new solution for sodium and potassium: Gatorade. No more water, only Gatorade! It's got both, so hopefully this helps. Her chest xray showed no fluid build up and Carrie was as relieved as we were. After I called Monday to report her low saturation levels, Carrie said she expected to see fluid, but no! We see Dr. VanBergen next Thursday and hopefully he will give us more good news.

 

I'm sorry for not posting sooner. I have been spending 2-3 hours a day on the phone with the insurance company trying to get them to approve medications and equipment. We have had to pay out of pocket for the Viagra, which is a very costly drug! On several occasions, we have joked that Jeff should go to the doctor and get a prescription! We have had wonderful support from Dr. Ilbawi's nurse practitioners Jane and Carrie. Dr. Imran has joined the fight and himself called the insurance company. This irks me because those people have far better things to do, like saving childrens' lives!!!

 

On Wednesday, we went for a walk with our O2 to go and Muriel feel asleep. We took a pic of her without her oxygen when we replaced the tegaderm and duaderm and nasal cannula. Muriel continues to get stronger every day. She has started to use a baby walker to get around and occasionally takes a few steps on her own. It has been a joy to hear her laugh again. She celebrated her 18 month birthday on Sept. 29th. Time flies!

Challenges

It is certainly a great deal easier to post the trips outside and smiles than some of the other challenges.

Muriel has a home health nurse that comes three times a week. She was here last Thursday and Friday. When she came today, Muriel had lost weight. It is a challenge to get her to gain back those lbs when she is on a strict 0 fat, no vitamin K, and egg free diet. She is not interested in eating too much and likes water more than juice or skim milk. She is drinking a bit more and almost meeting her fluid restriction of 730 ml a day on some days.

More concerning was her oxygen saturation today. The goal is 85 and when the nurse came today, she was in the low 70's. I turned up the oxygen to 2 liters from one and she came around to the low 80's after about 20 minutes. I kept her at 2 liters all day. Around 3:00 I checked again and she was in the 70's again. I turned her O2 up to 3.5 liters and she hovered around 80. I called the hospital and talked to Jane, a nurse practitioner. She was concerned but asked how she looked. I told her she looked fine. Not blue and playing. She's not eating, has low sats, can't walk, and vomits some meds, but she looks good! Jane called Dr. Sajan and he said he's still concerned about another plural effusion, but if she looks okay, we can wait until tomorrow to see her. We see Jane at 12:45 tomorrow, so lots of positve thoughts and prayers, please.