A friend mentioned how stressed we must be and as I was jogging this morning I had a few minutes to organize my thoughts. Yes, we are stressed. First, I can't continue without mentioning that Brent and I were both in a tough spot. We were carrying heavy burdens and although we have been given much peace we were sinking into depression (PTSD is real but in the heart world it's TSD). I believe that the Lord can take these struggles away, but, he expects us to seek help just as we would if we had a broken bone. I had my first ever panic attack one night, it felt like someone was sitting on my chest. It wasn't at the moment of a major medical decision, it was the quiet hours of the night. Adrenaline had been carrying us but our endorphin reserve was depleted.
I knew we needed help but I kept hearing these horrible experiences with trying anti-anxiety meds and anti-depressants and the side effects were rough. Did you know it takes an average of 8 years to find the right medicine and dose of depression and anxiety. Well, I didn't have 8 years. We tried jogging, which we have always enjoyed but it wasn't enough.
My wonderful, energetic, amazing mom came to visit and brought some products she had been taking that had really helped her. I figured we couldn't get much lower so I started taking them (I frankly did not expect them to work). They are produced by a group called Amare Global. Their goal is mental wellness. My anxiety DISAPPEARED and that overwhelmed cloud dissipated (I literally cleaned out the car, completely cleaned out the garage and deep cleaned the whole house in the first few days). Brent saw the difference and also started taking their Mood+. This is how we handle the TSD.
Now, for the rest. We decided that if our healthy time with our Adelina is limited than we don't want to waste it (we expect the road to get rocky by the age of two but we also expect her to live). We made a list of all the things we wanted to do this year. Instead of doing one a month we are doing one to two a week. The list is simple. Let her have as many baths as she wants (within reason). Visit a bunch of different parks. Spend time outside. Some are easier to quantify. Visit the Brownsville zoo. Jog outside every possible day (she LOVES this). Finger paint. Put up window clings for each season. Ride the ferry. Go to the beach as often as we can. Play in the rain. Dance (she loves to dance). Take TONS of pictures and videos. The list goes on and on.
When the choice comes between getting the kids to bed on time on a Friday night or having family movie night, we have a family movie night. When the debate is between picking up the house or snuggling with the kids, we try to snuggle, even if it's just for a moment. Do we still discipline? You bet! Do we still clean and cook? Of course. Do we still tell Adelina "No?" Actually we don't, lol, when we use the word she bursts into tears. That doesn't stop us from telling her "no" in many other ways :).
Saturday, February 3, 2018
Thursday, February 1, 2018
More questions than answers
We saw our cardiologist yesterday. She showed me her chest x-ray from the day we were discharged... her right lung was collapsed! I'm still stunned that they chose to send her home with a collapsed lung.
Soooo, she did a new chest x-ray and Adelina's lungs are clear so she said I didn't need oxygen anymore, that the collapsed lung was really the main issue. We took the oxygen off and walked out into the hall to test her. Adelina was NOT happy and belly flopped on the floor with a sob(she knew and remember exactly what happened last time, she cried the second we walked in the door). She only desatted into the 60s which is expected so she told me to take her out and enjoy being oxygen free. I should have known better. She also mentioned that she didn't think the AVM's were as bad as originally thought and we couldn't really do anything about them right now. We plan to go back soon to have a heart cath and hopefully coil some collaterals (we're hoping that little conduits have formed from vein to vein because they can be fixed). If not, she may need her next Open heart surgery in as little as three months. If they have to do it early they have to do it inside the heart. Adelina's hear tis full of scar tissue and this would be very risky. If we were able to wait until she was three they would do it outside the heart. Also, if they do the open heart surgery this young they will have to do another one at age as she will have outgrown it.
The appointment was surprisingly short since we avoided being admitted so we took our kiddos to the Houston zoo. Addy LOVED the freedom and was pretty impressed with the baby elephant. If we picked her up she screamed bloody murder so we let her move. I think she was just so excited not to be tethered.
We drove home and discovered that Addy was breaking 5 teeth in (you know the molars that are part in part out... ouch!) so we gave her some tylenol and made it home without too many tears.
In the morning just for peace of mind I checked her oxygen saturations after she'd been doing VERY little, just walking around the dining room. Her O2 sats were at 58%! I was and am still sick over it.
We have gone now for weeks trying to keep her oxygen up and for the last two weeks trying to limit her exertion. I put our Addy in the tub tonight and she was so blue compared to her big sister. It's hard to know that we only know such a small amount when it comes to medicine and that so little research is done on congenital heart defects. I pray for advancements and am grateful that we have a loving Heavenly Father that is omnipotent.
Soooo, she did a new chest x-ray and Adelina's lungs are clear so she said I didn't need oxygen anymore, that the collapsed lung was really the main issue. We took the oxygen off and walked out into the hall to test her. Adelina was NOT happy and belly flopped on the floor with a sob(she knew and remember exactly what happened last time, she cried the second we walked in the door). She only desatted into the 60s which is expected so she told me to take her out and enjoy being oxygen free. I should have known better. She also mentioned that she didn't think the AVM's were as bad as originally thought and we couldn't really do anything about them right now. We plan to go back soon to have a heart cath and hopefully coil some collaterals (we're hoping that little conduits have formed from vein to vein because they can be fixed). If not, she may need her next Open heart surgery in as little as three months. If they have to do it early they have to do it inside the heart. Adelina's hear tis full of scar tissue and this would be very risky. If we were able to wait until she was three they would do it outside the heart. Also, if they do the open heart surgery this young they will have to do another one at age as she will have outgrown it.
The appointment was surprisingly short since we avoided being admitted so we took our kiddos to the Houston zoo. Addy LOVED the freedom and was pretty impressed with the baby elephant. If we picked her up she screamed bloody murder so we let her move. I think she was just so excited not to be tethered.
We drove home and discovered that Addy was breaking 5 teeth in (you know the molars that are part in part out... ouch!) so we gave her some tylenol and made it home without too many tears.
In the morning just for peace of mind I checked her oxygen saturations after she'd been doing VERY little, just walking around the dining room. Her O2 sats were at 58%! I was and am still sick over it.
We have gone now for weeks trying to keep her oxygen up and for the last two weeks trying to limit her exertion. I put our Addy in the tub tonight and she was so blue compared to her big sister. It's hard to know that we only know such a small amount when it comes to medicine and that so little research is done on congenital heart defects. I pray for advancements and am grateful that we have a loving Heavenly Father that is omnipotent.
Subscribe to:
Posts (Atom)