Eli was hospitalized Nov 30-Dec 1st. He was sent home assuming that he would get worse, but far better to be home then in patient around more germs.
By Sunday Eli was starting to struggle. By Monday he was running a temp, vitals a mess, lungs sounding yucky, and requiring O2. For sunday and monday eli only peed 3 times in 48 hrs. By Tuesday he was considerably worse and was needing quite a bit of O2 and alot of extra breathing treatments and such. Still minimal pee even with fluid increases. By Tuesday evening he was struggling hard and at this point we had been holding him upright for over 24hrs. They approved 24hr nursing and they stayed up with him all night.
Wednesday morning Eli was admitted to the PICU. His sats were low, his resps were 60-70 and his heartrate was super high. Temp 102.8 and he was requiring more pain meds and breathing treatments than we can even run at home.
We learned on Thursday that Eli has RSV and pneumonia. Both lungs were hazy. Alot of gunk settling into his lungs and alot of trouble moving it all. They started him on a pretty intense regimin of breathing treatments, CPT, and cough assist.
During his hospital stay alot happened.
His lovenox (blood thinner) levels aren't enough. He had a major bleed inpatient, as well as clotted off 2 needles. Strange combos.
He was switched to IV robinul as it was apparently clear that his body isn't aborbing the robinul thru his J tube.
We also learned that his seizure meds aren't being absorbed either and have had to increase them.
We've had to increase his IV fluids as they just aren't enough to keep him well hydrated.
He had a modified upper GI (barium placed into his G tube) and his fundo is in tact and isn't causing reflux. So we now know that for sure all of these choking spells are from secretions not refluxing.
Eli came home late Sunday. The hospital is full of RSV, Flu A and B, pertussis and rhino virus. Eli has had pertussis twice so the goal was to get him out of there and get him home where he can be better protected.
He's still struggling. Temps still, wacky vitals, alot of gunk in his lungs. Requiring a whole lot of suctioning. Still can't get him even weaned down on the O2, let alone off of it. Last night he started having trouble maintaining his body temp, which is normal for him usually, but this time it's the opposite. His extremities are constantly cold with a slightly delayed capillary refill. He's NEVER been too cold. Eli's body has always run super hot. So this has been a new strange challenge as it's not something we are used to doing, keeping Eli warm!
Yesterday he also had all of his kidney scans. There is some big improvements to his UPJ obstruction. His surgeon is really happy with what he saw on the scans and so are we!
In other household news....the world very clearly didn't stop.
Both bob's car AND my van broke down in the same day...Sunday. Bob's car is assumed dead. My van was towed to a shop. Come to find out while it was parked in the hospital parking garage for a week that it was attacked by a squirrel or mouse. They chewed thru my spark plugs, my O2 sensory and some other thing that I can't remember. Ended up costing $450 to repair!!! The mechanic saved all my parts and has suggested that we file a report with the hospitals parking garage.
Bob, Ben, Ari and Lauren are all sick. It appears to be the same thing that Eli has. Sadly for them it has to run it's course.
Last Wednesday Emily and Jace were both sent home with the stomach bug. Wednesday 70 kids were sent home with it, Thursday 85. The health dept ended up closing the school on Friday and they did a deep cleaning and de-sanitizing over the weekend.
Jace had his renal and testicular scans last week as well. Lauren was able to take him. His doctor (also Eli's primary doc) came to Eli's hospital room that evening. He informed me that he was sorry to be delivery more bad news. Both of Jace's kidneys are very small for his size but appear to be functioning well. The biggest issue is that both of Jace's testicles are in his abdomen stuck with hernias. He is putting in a referral and Jace will need to have surgery. It is unsure right now if they will be sterile or functional after being inside for 9 years.
We finally got the christmas tree decorated last night. Christmas is right around the corner and I'm so not ready.
I'm pretty much done with it all. I'm exhausted. My surgery is in 27 days. I feel as though the world is beating the fucking shit out of me. Everything that could go wrong is constantly go wrong. I don't know how much more I can physically, emotionally and mentally handle. I'm struggling right now to keep going thru each day.
I will get more updates up soon. I've got so much to get done today, and a sick Ben and Eli home!