I realized that I was posting everything to Facebook and nothing on here. So, just for my benefit I am going to make one big post with all my FB status updates ...
Day 3 - Friday, February 21
Update for Friday morning: Torah is stable. Ventilator is down to 15% oxygen. Still doing treatments every 6hrs to help break up all the mucus and junk in her lungs. Currently on two IV meds and one med that she gets every 8hrs to keep her blood pressure from dropping. She is more active today, but they have plans to take her to IR to have the GJ tube put in to start her feeds and then there will also be the Lumbar puncture at sometime today as well to check her CSF and make sure the staff infection did not get into her brain after CPR was given on Wednesday (during both of these procedures, she will get some meds to sedate her). Still in the PICU rm 3103. Thanks again (can not say it enough) for all the prayers for her!!!
Friday evening: PICU waiting room ... Home away from Torah's room. Just waiting while they do the lumbar puncture.
Dr came by today and said that it looks like everything traces back to Strep A. So it was not really ever a staff infection. She said that Torah probably is a carrier for Strep A and when her immune system was weekend the Strep A took over and it is a very aggressive bacteria. Dr also said that recent cultures look clear and the antibiotics have been doing their job. The LP is just to make sure that the bacteria did not get into Torah's spinal fluid (which can happen after CPR on a child is given).
Day 4 - Saturday, February 22
I had a dream that I woke up and her vent tube was out ... but no such luck this morning. She was very alert this morning though and I think she even tried to smile when the Housekeeping gal came in to put clean trash bags in (if you know Torah, you know that shaking a trash bag will make her giggle). All that did was cause her secretions to bubble up and she had to be suction'd out.
Lumbar Puncture went well last night and so far the doctor said it looks good, but they need a full 24-36 hours to make sure.
Still on blood pressure meds, but they are slowly decreasing them. Swelling looks like it has gone down too (at least in her face).
If things go "as planned" ... she might (I said might!!) get of the vent tonight or tomorrow morning. Prayers are working, so keep them coming!!
Day 5 - Sunday, February 23
Not much has change in the last 24 hours (not worse, but not better either). They have done several trials to see if Torah is ready to be taken off the vent, but seems she is just not ready yet. So the tubes get to stay in to help her breathe.
When she is awake, she seems to be alert. Most of the day she sleeps (which is good so that she is not fighting the vent too much). Still on blood pressure meds, along with antibiotics and a few other meds. Still swollen, but her face dose look better. Sounds like they might be weighing her soon to see how much fluid weight she has put on. Her feeds seem to be going good with the GJ tube and found out that she had a large explosive poop last night too (glad I missed that one).
Everything is starting to run together for me, so if something doesn't make since or you have a question, let me know. Thank you again for all the prayers!!
Day 6 - Monday, February 24
So, cross your fingers and toes ... Doing one more trial to see if Torah is ready to have the vent tubes pulled. She was all smiles this morning!!
She is off blood pressure meds and has found her feet. Just hope that we can get out of the PICU before the day is over!! Prayers are working!!!
Update 2:
Torah is officially off the ventilator and tubes are out (minus a front tooth too!). She is now on BiPAP (hating the mask). Has had one of her IV's taken out (still has two left). I have seen more loose stools come out of this lil girl than I thought possible (currently off her feeds also, so who knows where it all is coming from).
She has found her legs and feet and they have been going everywhere. Sadly she can not have her hands yet, so she is making up for that with her legs and feet!!
Probably all the excitement we can take today!
Want to thank her class at school for all the cards that will be waiting for her when we get home (she misses everyone and I am sure she is ready to get out of here soon!) and for the e-mail'd notes that have been delivered her to her room!
Thanks to some friends for exposing me to Panera Bread on Saturday, which is right across the street! I am thinking it might be supper tonight since it is 60 degrees outside.
Day 9 - Thursday, February 27
Sounds like Bob is coming this way to get me and bring me home so I can get my van!!
Torah had a good night, but maybe not so restful. The plan for today is to get her off the bipap machine so she can get out of the PICU and to a med floor (which is one step closer to coming home... will see how she dose when they take her mask off.
Day 13 - Monday, March 3
Small progress made. Switched her BiPAP mask to just a nose mask. Heart rate and respiratory rate have come down a little. She did have some muscle spasms this afternoon, but those subsided after her seizure meds were given.
Talked to her surgeon today about her hiatal hernia. He is all for fixing the hernia if it is causing distress on her lung or any other problems, but will see what all the doctors say tomorrow. Hoping for a uneventful night (even with all the suctioning they will have to do).
Oh, and she is officially missing her top two front teeth now thanks to all the suctioning and scrubbing of her teeth.
Day 14 - Tuesday, March 4
Struggled breathing with her left lung early this morning. Fever is back at 102, so she is back on the cooling pad. Surgery is scheduled for 1pm on Thursday to fix her Hiatal Hernia - hope this helps the lung recover faster. Her secretions are so thick that it is really hard to suction her and it sounds awful.
I'm doing good, eating my food and taking care of myself. Sleep is hard no matter when or where, but I am sleeping. God is in control!!
Day 15 - Wednesday, March 5
Nothing new and no changes really from yesterday. Her vitals are still doing good. Respiratory is still shaking and suctioning every 4 hours. Surgery is still a go for tomorrow at 1 to fix her hernia (not sure yet if it is the cause of her left lung issues or not). She has been sleeping a lot the past few days but I caught her with her eyes open and even got a small smile (hard to see with the mask).
Day 16 - Thursday, March 6
Should be going down for surgery soon. Starts at 1:00, and will be 2+ hours long. She has had a great morning. Will update after we are back in her room. (surgery was postponed till 4:00 and lasted 5hrs)
Surgery is finally done! She did great and everything is fixed and back where it goes. Just waiting for her to get back up to her room. I've been kicked out till they get her settled 😡 but whatever. She will stay intibated till tomorrow so they can do the MRI in the morning. Will probably be here into the first of next week, but will have to see how she does once the tubes are out. Thanks again for all the prayers!
Day 17 - Friday, March 7
Surgery started late and lasted 5hrs instead of 3. So about 10 last night she was finally settled back into her room to recover. She was awake and moving her arms and feet, looked like she was handling things well. The hole in her diaphragm was about the size of an orange and was repaired with a patch. She is getting her MRI of her brain done now. The plan is to keep the tubes in for another 48+ hours to let her stomach heal before going back to the BiPAP. They will not start her back on g-tube feeds till Monday. Doctors say her lungs sound really good and her vitals look great. Still on an antibiotic to fight whatever is causing her fevers.
At this rate I would like to say we might be home on Wednesday ... but will hopefully know more Monday when they re-evaluate. Thank you again for all the prayers!!!
Day 18 - Saturday, March 8 ... I think??
So yesterday was kind of crazy between getting her MRI done (which showed nothing new) and then having her pic line moved from her right arm to her left arm (this little girl has very small and complex veins). Both of those procedure/test were two separate trips to radiology.
Today our awesome nurse Jamie and myself have been getting smiles ... even though they had to start another iv because the one in her foot went bad (about every 2-3 days they have to start a new iv - see comment above about veins).
A pressure support trial was done to see how she would do without the tubes, but she failed. Sounds like they will do another one tonight. The hope was to take the tubes out Sunday, but she also needs to be ready. Putting her back on the BiPAP on high settings would not be good on her hernia repair. No fever last night or today (knock on wood).
Day 19 - Sunday, March 9
Sorry this is so late, just realized I have not updated yet (days and hours are really starting to run together).
Still on the vent but she has passed two out of two of her 2 hr pressure support trials ... So maybe the tubes can come out tomorrow ... Maybe! She has a ton of secretions in her left lung and her X-Ray did not look so great this morning, but she sounds good now.
She is down to just her pic line for her meds and iv fluids/tpn. An iv that was started yesterday already went bad (each iv she has had only last 24 to 72 hours ... so she has been poked everywhere). Poked so much they pretty much have nowhere to start another iv. Her right arm/hand and left foot/leg are swollen due to previous iv's.
Got out for a bit today and was surprised by the 70 degree weather, but no complaints!!
Day 22 - Wednesday, March 12
So far today she has passed both of her 2hr pressure support trials, one more scheduled for tonight and then hopefully the tubes will finally be out in the morning. She will probably go back on BiPAP for support, and they still are suctioning her out about every hour.
We moved rooms to 3130 (which is only 4 doors down from where we were), thinking it is more of a 1:1 room with her nurse. Hopefully less commotion outside our door too!
Torah and I both have our days and nights mixed up, but I'm working on fixing mine (trying anyway).
Day 23 - Thursday, March 13
Torah is on her 4hr trial right now to see if we can take the tubes out this morning. Pray!!! Her heart rate and respiratory rate go up and she just looks exhausted. Not sure the exact time, maybe noonish if she dose pass.
Been told it is Friday ... Day 24 - March 14
Made progress yesterday by getting the tubes taken out. This morning the nurse/doctor both said that she sounds like she is moving air well with the BiPAP ... but, her respiratory rate has jumped up to 40 & 50s again and she visually looks like she is working really hard to breathe. Still suctioning every hour with breathing treatments every 4hrs. Re-intibating her is not out of the picture if she needs it, but for now they just want to watch her. Mama is tired and not sleeping great (not sure I ever did). Missing my boys ... yes, all 3!! Hoping for a HOT shower and maybe a nap.
Day 25 - Saturday, March 15
Tubes are going back in. 😢
She is working so hard to breathe. They did a blood gas to check her CO2 levels and for once they were high. She has so much secretions that it is starting to affect the right lung now too. Heart rate is high and she is breathing so fast that she is not syncing with her machine.
Will try to update later on with how she is doing.
Day 26 - Sunday, March 16
Evidently Torah kept last nights nurse on her toes. Nurse said she woke up and was just pissed off (I'm thinking she was being her ornery self), so they gave her one of the PRN meds to calm her down. Blood pressure has been low for the last 36 hours and is not going back up yet, so they have been giving fluids to try and help along with some medications (so far nothing has worked). Also she has not been peeing, so they put a catheter back in. Spiked a fever last night too ... Back on antibiotics she goes. Sounds like the doctors have no clue (she always keeps them guessing).
Day 27 - Monday, March 17
Torah was pretty active this morning, which would normally be a good thing if she didn't have a tube in her mouth to help her breathe and a catheter to help her pee. Still on dopamine to help keep her blood pressure up. They think she has some kind of infection or sepsis, but just not sure where or what kind. Just praying for answers and healing.
On the plus side, I was able to spend the day with my boys at the zoo ... Thanks to two very amazing women!! Thanks again Katrina & Sara!!
Day 28 - Tuesday, March 18
Overall was a good day. She is off her Dopamine and antibiotics. They took the catheter out because of a lot of blood (hoping it is just due to irritation from the cath), should know by tomorrow. Her cortisone levels and thyroid are both low and she is receiving supplements for them. She went through 3 iv's in 36 hours, so they put in a longer iv with the help of ultrasound (even that took a couple of try's). I did talk to her current PICU doctor about the port and she said it was not an unreasonable request and would look into it for Torah. Pulmonary wants to do trials over the next few days where they make Torah do most of the work breathing to hopefully strengthen her lungs. Not looking at taking her off the vent anytime soon, they do not want to have to reintibate again.
