It has been a crazy ride. The last two days has felt like a week. Maddy was finally ex-tubated on June 23rd at around 1:00 in the afternoon. I had spent the entire night with her from the 22nd to the morning of the 23rd and was not able to sleep because of a group in the waiting room watching international soccer! I was able to be there in the morning when Dr. Rolf came by and discussed the plans for that day with Maddy. She was very insistent, through her pantomime, about getting the tube out that day. Dr. Rolf understood exactly what she wanted. He had her blow through her tube and watched the numbers on the vent screen. Told her everything looked good, her chest X-ray was clear and her numbers looked good. He wanted her to get her next plasma pheresis before lowering the ventilator one more notch and testing her again. If all went well she would have it out. She was very happy with that answer. So happy she gave him a hard time about nicking one of the IV lines she had in her neck the day before when he was putting the new lines in for the plasmapheresis. The line started leaking meds, not any blood, and freaked Maddy out for a little while the day before. he got all puffy and called BS about the whole thing. Then told the nurse never mind, leave her hooked up to that thing forever! LOL, Dr. Rolf is our kind of guy and has exactly the same sense of humor as we do. It was great seeing Maddy laughing over the vent. I went home after they started her plasmapheresis around 10AM and told Natalie to call if anything went wrong otherwise text and don’t expect an answer because I was going to be sleeping!
I got a text Around 1:00 with a picture of Maddy and Natalie, no vent tube and two thumbs up. However, as I mentioned in my last blog it seems like every time the girl gets to take a step forward she has to take two steps back. She and Natalie had a good day but apparently lurking underneath Maddy’s happiness about getting off the vent was a bunch of built up anxiety, about everything and nothing. By the time I got there at 8:45 that night Maddy was in a full panic attack. I got two calls from the nurse on duty and a call from Natalie as I was heading down to the hospital. Poor Maddy, all hopped up on narcotics for days on end and huge amounts of steroids had finally cracked. Let me say that I have not experienced a full panic attack and I hope I never have to endure one. I have been on a moderate course of steroids and I can say from that experience that they put your teeth on edge. Everything got on my nerves for no reason and anything could just set me off on a rampage. I have experience with people on prednisone so I expected these side effects. I warned everyone in the family and I hid in my room. A LOT. Poor Maddy had no where to go and literally hundreds of nagging little things going on to and around her. By the night of the 23rd she was so tired of it all and so worked up there was nothing to do but help her poor little body ride it out. I did not pretend to know what she was going through and neither did her nurse. Her nurse that evening kept trying to encourage Maddy and told her many times how strong she was and that she could not imagine going through what Maddy was going through. We had the nurse call the doctor and try to get Maddy some anxiety medicine. Dr. Rolf ordered her Xanax. That helped take the edge off just enough for Maddy to get about 30 minutes sleep.
In an attempt to shorten this long blog entry I will simply say that Maddy spent the next 36 hours in a full anxiety / panic attack. I stayed up with her all night from the 23rd to the 24th. Then Natalie took over around 10AM. Maddy had calmed down by then and was getting a little rest under the influence of benadryl while getting her plasmapheresis. Just before I left she told me that she thought the vibrating the plasmapheresis did had set off her anxiety the day before. I said I was glad she was taking it better that morning. I should have known better. I had to go to work and Natalie was up again that day, when I checked in she said that Maddy was still having high anxiety and panicky. She got the nurse to contact the Psychiatrist. Dr. Mendoza, who is in charge of all the transplant patients. He ordered a long acting anti-anxiety medication on top of the Xanax and promised Maddy that she was doing just fine and the feelings she had were normal. That didn’t help much. I thought for sure that by that evening, after pretty much being up for 24 hours that Maddy would relax and sleep. Melissa was up next for the night shift and I was wrong. Maddy was up all night again. Lots of anxiety and panic over nothing she could put her finger on. Everything bothered her and nothing felt right. I was back at the hospital again this morning at 8:30 and by then Maddy seemed to finally be calming down. As the day progressed Maddy was able to get more and more composure. As I sat with her all day I just prayed and prayed that the worst was past.
By the time I swapped with Natalie at 5PM this evening Maddy was back to her old self, mostly. I could still see that she was on the edge. She was definitely very tired. Yesterday through all her anxiety they continued her tests and removing tubes. She passed her swallow test and was allowed to get real food. She was able to get out of bed and to the potty chair so they removed the catheter. They also removed the feeding tube from her nose. With less tethers and a little more freedom of movement along with the meds and tiredness she was finally able to get past the anxiety. She and I had a very good day. I spent all day being her servant and making sure she had everything she needed. I read her favorite childhood story, Winnie The Pooh, and we had some great conversations. We talked a lot about the things that were bothering her and I think she was able to get most of it out. I’m pretty sure the perspective helped but could tell that she was still a little foggy with the side effects of all the medications coursing through her little body. I’m writing this at about 10:30. As of 9:30 Maddy told Natalie she could go home for the night and then she went to sleep. Natalie told Maddy she would stick around tonight just in case but that she would leave her alone to rest. Hopefully she will not be needed but I’m glad she will be available if Maddy wakes up and needs a hand to hold.
As far as Maddy’s lungs are concerned things are looking very good so far. Honestly I am still a little hesitant to say that everything is fine. Obviously from the above it is not. But her numbers are good. She is down to 2 liters of O2 an hour through her nose, Which is almost nothing. Her lungs are expanding and she is able to blow up to 500 on the inhalation spirometer. She is able to cough up little plugs of mucus, which I’m told is very impressive because nobody knows how to cough with new lungs right away, and they have turned from bright red to light brown streaks. That means that her lungs are not bleeding and are sloughing off the old material and blood so she can get rid of it. The doctors will continue to go in through bronchoscopes to clean that stuff out for a few months. Her O2 saturation was continually at 99 to 100% all day long. She didn’t even desaturate when she coughed or worked her inhalation spirometer. The only little thing of concern is that she still has a lot of fluid on her. Her hands, especially her left, and her feet and legs are still very puffy. The doctor said her x-ray is looking a little wet. He gave her more lasix today to help her pee it all off. But of course she is no longer catheterized so she has to get up to pee, but that is good for her. I am surprised how strong she is. With that said she is still VERY weak, being in bed for almost 20 days will do that to you. But she does all her physical therapy without complaint and even does stuff, like leg lifts, when they are not asking her too. She really wants to get well and get moving!
I think that’s all. The baby steps continue. We await the next hurdle in her recovery with great anticipation, even some anxiety (LOL). But know all the prayers for Maddy are pulling her through!
Peace...
Comment Transfer;
And Second, too!
;-)
God Bless,
Kevin (Tom & Flo's nephew)
Judy Jones (Kevin - K.C.'s Mom)
with love,
nancy
I miss you so much, and I love you more than anything in the world. You're so strong and I'm so proud of you and I can't wait until you're all better and out of there so I can see you and give you a hug and tell you that I love you and I promise once you're home things will be different and no matter how busy I am, I'm gonna make Maddie time a priority. Get better soon sweety, I'm rooting for you and praying for you <3
Love, Niki
Eileen
Xoxo
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