Ian sweats like crazy and makes huge wet rings on sheets and pillow cases, causing whomever is sharing the bed to roll into them and become equally disgusting! Sometimes, you even venture there and then notice it isn’t sweat..... your child has just peed through the diaper because of all the extra fluids..... even MORE disgusting. One hospital we visit has a pull out double bed for the parents, pergo laminate hardwood floors, two tvs (child and parent) and a gorgeous tiled bathroom. ALL hospital rooms should be like these. It is very “home-y” feeling.
Plus, when you spend over 30 nights (34 so far to be exact) in a hospital as a parent, you learn to realize what is truly important and what really doesn’t matter. Such as..... soft sheets and pillow----- important........ being able to change into *real* clothes and get dressed for the day----- not important....... having decent food available----- important....... (although you never get to eat it hot, so the correct temperature of food becomes totally irrelevant) having time to check your email for midnight because of bad wifi (which always happens)------ not important. Each experience is different, but over time, the good and the bad start to stand out.
Aside from people coming in every 20 minutes for something between 3am and 8am, the night was good. Medical staff really does need to get it together at these special times. Especially since Ian had blood drawn at 6:45A for steroid testing. However, when he woke up, he was as fresh as he would have been on any other day. He spent the morning smiling and giving kisses and high-fives. We colored and watched videos together. Grandpa was here again today, Tuesday, and was a great help to ME! Trying to accomplish *anything* while alone with a two year old in the hospital is impossible. You would think again, that being in a confined space would make it easier, but...... certainly not!
Ian is still in isolation because he is contagious. Meaning, none of us can venture out of the room except to leave and enter the hospital. ICK! It gets really claustrophobic in hospital rooms under isolation, especially with stagnant, dry, smelly hospital air. I’m painting quite a pretty picture huh? To be honest, being in the hospital has become one of the safest feelings for Tom and I. While being one of our least favorite feelings, knowing that you are somewhere that your child can be taken care of is very reassuring........ assuming you trust the doctors and the hospital........ been there, done that bad road too.
The pulmonologist and respiratory therapist were able to remove Ian’s oxygen this afternoon. Around 3P he was good to go and held his saturation levels up above 92 the whole afternoon. For those who might not know (since this is a general blog, support group, facebook update) that means that 92% of hemoglobin (oxygen transportation portion of the red blood cell) is oxygen. It gets much more technical, but that simplifies it quite a bit. Ideally, the saturation is 100%. Below 94% is unacceptable in most cases, and usually below 92% is a problem. When entering the hospital, Ian was between the upper 70s and mid 80s...... extremely unacceptable and depriving his brain of vital oxygen.
Overall, Ian had an AWESOME day! Big improvements and happy. He is so strong!
|Books with Grandpa|
This means when Ian’s blood saturations drop below an acceptable level, he alarms. Which..... we hear...... Ian sleeps. The flashing red box makes it easy to see the numbers in the middle of the night. There are different alarms for oxygen, heart rate, respirations, heart contractions, and more. As experienced parents, we know them all. I know enough to hear the respiration alarm at 2A and know that if I only hear it beep once or twice, the leed wasn’t in the right spot when Ian rolled over. However, I can tell you that no matter how many times it drops and comes back up..... a parent’s heart skips a beat when the blood saturation alarm goes off. Sometimes it’s one beep, sometimes for minutes..... but every time..... parents notice.
As Ian fell asleep tonight, his oxygen started as OFF. We knew the instant he fell asleep. His eyes closed, he took a few breaths, then slowed down. twenty seconds later, the number started dropping. Thirty seconds in, we knew he needed the oxygen. We gave it a few “rustles” of Ian to make sure it wasn’t positioning on a fluke. He is sitting at 1.5 liters right now as I type. being half of last night’s dose, that’s pretty darn good....... 3 days into an RSV diagnosis, especially a severe one with originally partially collapsed lungs. I have no idea how these little kids do this!!
Tomorrow will be another day..... hopefully another day with oxygen! If all continues to go well with his continued breathing treatments and downgraded oxygen levels around the clock, we may be abel to go home Thursday. I’m guessing Friday maybe... who knows. Ian needs to prove he can keep his saturations up both during the day and at night, and still accepting his breathing treatments well.
There were a lot of labs run this morning and last week. We have some results in, but it doesn’t make much sense to discuss them lab-by-lab. Once we get all the labs returned, we can get into that fun stuff. One shows a significant result, but most are within normal ranges.
Thank you everyone for always keeping Ian and Tom and I in your thoughts. He truly does soak-in all those prayers. He pulls strength from what seems like no-where. I know where it comes from....... everywhere! He has kept “reserves” too for times like these when he needs a little extra umph! I will keep everyone updated as the days pass. Thank you again!