Saturday (Day 5): Another quiet night and quiet morning for Kyleigh. It's the weekend which means we have a new team of doctors and nurses. This new team is just as good as the weekday team I'm sure but I have worked in a hospital and I know the resources are not the same no matter how good the staff is on duty. The attending physician is nice but we get the feeling he is a little lazy compared to the attending that has been taking care of Kyleigh. He actually said he didn't want to stir things up over the weekend. He covered himself by hiding behind Kyleigh's "history of a difficult airway" but we get the feeling he just doesn't want to deal with a risky extubation. If he is really not that confident...we don't want him to do it either. I don't mean to sound like I am talking poorly of the weekend staff because I am not. They are wonderful and are taking excellent care of Kyleigh. It's just obvious the consistency of care is off for the weekend and we need to be on our toes a little more.
Sunday (Day 6): It was probably too much to expect that we could go a full 3 days with no excitement. About 5:30 AM Kyleigh decided she had enough of this ventilator business and pulled out her breathing tube!! I guess Kyleigh wasn't going to let the weekend attending physician get by without doing some work! Fortunately, the staff was able to re-intubate her with no trouble. They didn't even bother calling us until just before we arrived at the hospital. Even then, the only reason they called is because they didn't want us to show up and hear about it by chance. The fact that she pulled the tube out is not good but it did teach us some things. We learned that Kyleigh's airway has improved greatly. An Anesthesiologist nor an Ear Nose and Throat doctor was needed to re-intubate her. This is a very good sign. On the other hand, it also showed us that her lungs are NOT ready to come off the ventilator. The are still too "wet", meaning she is still holding on to too much fluid. Kyleigh's trial run was very helpful for the doctors. They are now going to be very aggressive with the diuretics to dry her out and hopefully get her ready for extubation Monday or Tuesday.
Monday (Day 7): An uneventful morning, thank goodness. Today the plan is to stay aggressive with diuretics, start changing medications, and slowly decrease the ventilator settings in preparation for extubation tomorrow. Nothing exciting in terms of anything happening today so I will attempt to fill in all you medical jargon junkies on the details of the changes happening today. First the ventilator changes. I don't know enough about all the settings on the ventilator to even attempt to explain them. What I do know is the setting called SiMP is the number of breaths per minute the machine is taking for Kyleigh and the Respiratory Rate (RR) is the total number of breaths taken per minute. Kyleigh's SiMP was set at 16 with a RR between 36 and 45. This means that of the 36-45 breaths per minute she is taking 20-29 of them. This is very good but the machine is still helping with all of them. Eventually they can go down to a setting called CPAP where Kyleigh will be doing all the breathing on her own and the machine will only be helping with the efficiency of each breath. Now for the medications. This may get confusing so feel free to skip to the end if you don't really want to know the medications. Kyleigh has been on: Fentanyl for pain; Versed and Presidex for sedation; Milranone and Viagra for vasodialation to help with the pulmonary hypertension; Lasix and Diuril to decrease fluid retention; and budesonide to open up her lungs. Milranone, Viagra, Lasix, Diuril, and budesonide will stay the same. The Versed and Presidex will be decreased and eventually stopped and replaced with Ativan since it is easier to wean off Ativan. The Fentanyl will be replaced with Methadone so Kyleigh will still be getting pain medication but her respiratory function won't be suppressed. This should all happen over night and we are told to expect a slightly uncomfortable unhappy baby in the morning.
Tuesday (Day 8): Another uneventful night and I prepared myself to arrive to an unpleasant experience. Kyleigh was awake and there was nothing unpleasant about that at all!!! Something about seeing those beautiful eyes after being closed for so long just hits you hard!! It has been tough seeing her intubated each day but I took some comfort in the fact that she was not aware of what was happening. Seeing her awake was bittersweet. I was so happy to see my baby girl awake and looking back at me but my heart hurt to see her scared and looking at me to make it better and there was nothing I could do. When she first saw me she cried...silently. I will never forget the "sound" of that silent cry as long as I live. I held her hand and rubbed her head and told her everything would be OK. I realized it didn't matter what I said as long as she could here my voice so I kept talking. It worked a little but I wanted her to "feel" that everything would be OK so I just looked in her eyes. I looked at her and as crazy as it sounds I told her with my eyes that I was here and everything would be OK. Maybe I'm just delirious at this point but it worked. She stopped crying, held my finger, and settled down to sleep. . . .I guess it could have been the dose of pain medicine the nurse injected at that point too but doesn't my version sound sooo much nicer!! LOL. So during rounds with the team we learned everything looked great and we were all set for extubation!! Around 12:30 PM I watched them turn EVERYTHING off and intentionally let Kyleigh "struggle" to breath on her own. There could be no sedation or pain medicine because her lungs had to be able to function at their best. We were ready...OK they were ready...I didn't know what to think but I stayed and watched because I had to know right away that Kyleigh could breath on her own. Machine went off, lots of suctioning, they bagged her in between suctioning and then....pulled!! Kyleigh coughed and coughed and coughed and they suctioned and suctioned and suctioned. They were hurrying to get the high flow oxygen on her face (which is normal) but I watched her oxygen saturation dropping...80...75.....68.....65....59...WHY IS NO ONE ELSE PANICKING!?!?!? I'm pretty sure my oxygen saturation matched Kyleigh's at this point but they got the oxygen tube on her face and the numbers sky rocketed back to 100%. The team looked at me and took a deep breath and said..."OK all done"! As soon as I regained feeling in my body, I text Bridgette who was in the playroom with Kevin to say it was a success!! Her and my sister Kim came in the room and we were all happy. Then I think I realized how scared I was and how much I really did NOT like what I just witnessed and broke down a little. The rest of the day has been calm. I am staying at the hospital tonight because I want to be close by the first night off the ventilator.
I know so many of you have been asking about Kevin during all of this and we really appreciate all the concern and kindness from all of you. Since I am alone at the hospital and don't plan on sleeping much, I am going to write another blog with an update on Kyleigh's amazing big brother Kevin.
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