Mom's Birthday Wishes
The pulse ox trial (not checking paul’s oxygen saturations) lasted about 5 day and then I fell off the wagon. I started checking Paul again and noted numbers in the low 70s- A LOT. Like a lot more than what is normal and should be there. If I am being honest his sats have been a lot lower ever since the unexplained coughing began in mid-August. If I am being more honest, the pulse ox trial was a little bit about knowing the numbers were getting lower and knowing there is not much we really do about that right this minute and not wanting to deal with it. Since mid-August we have upped reflux medicine and started treatment for presumed asthma. We are giving Paul an inhaled steroid twice a day and albuterol treatments as needed. I am not sure if it is helping. He has episodes of windedness and heavy breathing but it does not stop him- he keeps going and going and going and going and…you get the picture. He is REALLY active. The cough comes and goes. He looks blue but not terrible. He is happy and he laughs and runs ALL DAY long. He is eating better- we had to increase his tube feedings a bit when all this started because he was losing weight and not eating great but not because he is sick just because he was acting out not wanting to eat. We got allergy tests done- nothing came back positive. So, what does all this mean- heart moms here’s my head- collaterals? AVMs? Early Fontan? Real asthma? Increased pulmonary pressures? Just having a Glenn? Ugh.
So, here’s the plan. I started to get pushy and after a few tough nights of heavy breathing (still smiling and playing) and really low sats I wrote to cardiology with a proposal that sort of went like this:
Dear the most amazing and patient nurse in the world,
I know I have called you weekly plus for the last 6 weeks and you said not to worry but I am still worried. Please make Dr. Parra see Paul next week. Something is up I think. If I am wrong you can have my pulse ox. I’ll need it back after the Fontan. Here’s a video of his crazy breathing….
Colleen (perhaps the most insane heart mom on the planet)
She wrote back:
Dear Colleen (at least you admit your crazy),
We will see him next week. Your not bothering me. I will take your pulse ox, though.
A little exaggeration to get you laughing but pretty much how it went down. I wrote a similar email to our team at CHOP who had a similar response and are willing to see Paul ASAP if need be. So, what does this mean? Well, it could mean nothing and it could mean a lot. The results can range from scary go to the cath lab and early Fontan or ok manage asthma and allergies better and maybe go to cath to really 100% ok- you are crazy we will take that machine from you now. We are also scheduled to see a pulmonologist on the same day…. So, on my birthday Sept. 25th we will go to Vanderbilt to see Dr. Parra and the pulmonary docs to get an idea of what’s going on. For my 34th birthday I wish for the following-
1) Miraculous recovery from HLHS
2) If not 1) then-that Paul is totally fine and going to be fine
no need for cath or intervention
no scary findings
no weird xrays
no strange blood work
awesome heart function
No valve leakage
No strange liver stuff
Good growth (back on the chart)
Nothing new to worry about
Anything old to have resolved
3) My husband’s cooking
4) A pedicure
Please say a prayer for all good reports. I feel very confident that whatever is going on he is ok right now and not in imminent danger of any kind. We appreciate your support and prayers.