Home from the hospital

Billy Boy is home from the hospital!! Smiled the whole way, it was amazing! That being said, now the real work starts. Wow, what a mess of supplies we have to go through, sort out, figure out, tag, and use. The new nursing agency was here amidst the chaos, trying to set up all their stuff and get all their necessary information. It's been very overwhelming, to say the least.

Billy Boy did really good on his last night at the hospital, but our machines don't have the same settings. It is something I will have to play with to figure out what settings will work for him, which means sleepless nights for me. Tomorrow Billy and I need to buy more shelves for his room so we can start sorting out this mess of supplies that were delivered. It's hard to believe, but we are still missing some items.

Tomorrow is another busy day. Monet has a dentist appointment & Regional is coming for a quaterly visit. Hopefully I can get some rest somewhere along the way. If only BillyBoy would fall asleep for a little while.

Winter Camp

Monet arrived at Camp Ronald McDonald for Goodtimes safely. I was a little worried since it was pouring and she sat on the very front row seat of the bus. They've gotten about six inches of snow so far, and I'm told she is having a fabulous time! There is no phone or internet contact with the kids, but I have my special ways of finding out. Lol! She'll be back tomorrow.

Billy Boy is waiting for ENT to come and remove his sutures and do the first trach change, so we can have our first training tomorrow. Praying it all works out so we can see Monet as she gets off the bus. Hopefully ENT doesn't screw it up by not doing it today or tomorrow morning. (It was supposed to be done today, but then they came up Friday and told us Saturday. That didn't happen, so now they called and said either today or tomorrow.)

Trach

Billy Boy got his trach yesterday!!! He did really well and had a really good first night. His life (and ours) should improve now. Drs. have assured us that this will make things a lot easier for him, and we know he can breath while he sleeps again.

We'll be at the hospital one more week as he recuperates from the surgery and we get trained on how to care for the trach.

BiPap

Billy Boy failed his second attempt with a BiPap. Hopefully that is enough proof for the ENT's (and insurance) to warrant a trach. Trying to move forward and onward to better things!!

Extubated

BillyBoy was extubated last night! Everything went well, soon after he was started on BiPap. Unfortunately it meant a sleepless night for me (and him.) As soon as he fell asleep the BiPap machine started shutting off and alarms were going off. The RT was in the room with me trying to figure out what was wrong, so she asked the lead RT to come in and check the machine. Right away he said it's him, his airway is obstructed. When he falls asleep, his jaw drops back, and his tongue blocks the airway. His CO2 levels started raising again, so they ordered a c-collar and a nasal trumpet (which leaves an open airway for the BiPap to work.) That should be enough proof that he needs a trach. We still don't know if the ENT's will need a sleep study done or not, so we are waiting to hear from them. Eventually, it looks like a trach will be in his near future.

Better morning

Resident came in this morning, he told Billy that their first main concern is that Billy Boy breathe on his own. He is doing that by breathing above the vent. Yesterday, when they did the trial, they turn down the vent and put it in CPAP (the CPAP opens up all the airways), if he has secretions, the oxygen can't be absorbed. That is why they decided to wait a few more days, give him a chance to get better before doing a trial again.

Dr. Abd-Allah had said midweek, Billy Boy is just listening to those orders.. Lol! Hopefully by tomorrow, all will be well. Then we can address the second concern, his apnea.

One step back

Ugh!!! Unfortunately, Billy Boy wasn't able to be extubated. His oxygen saturation levels kept dropping so they are holding it off till tomorrow or the next day. He is still having a lot of secretions, so I'm hoping that has something to do with it. I want this to go smoothly, but when it is the right time, I don't want to rush into it. Please pray that he doesn't need a vent or that God doesn't put me in a situation where I have to make a desicion I don't want to make!!!

Improvement

Billy Boy is doing much better today. He is going to the bathroom, taking a few breaths here and there, and coughing on his own again. He is off Morphine so he is more alert. I think tomorrow they will remove the breathing tube. The plan is to have a sleep study before we leave to determine if he will need a BiPAP machine or a trach, either way his quality of life will improve and we are happy about that! Thank you for the prayers, love and support!!!

Hospitalized

We went to the ER on Tuesday, Billy Boy was having a hard time breathing. He was finally admited Wednesday evening. The hospital is full and had to find space in PICU. Billy Boy

was not doing to well; fevers, Co2 levels were too high, shortness of breath. They did a slew of tests to see what is wrong with his lungs; infection/bacteria/virus. Those take a few days to weeks and we don't know the results yet. They have him on two different antibiotics. They also had to intubate him yesterday and his CO2 levels have finally dropped. They tried a CPAP and BiPAP machine, but apperantly his jaw is small and drops while he sleeps forcing his tongue to close his airway. He will probably require a trach before he leaves the hospital.

Right now, they are trying to get him better, then they will figure out if surgery is needed. Prayers are needed and appreciated!!!