i promise there is!
I haven’t updated in forever beca use I have been feeling so under the weather myself – and found out on wednesday when we went in for kendall’s checkup that apparently I have pneumonia as well. oh joyous day!
So I took Kendall in just because it didn’t seem like she was really making this big leap forward with her breathing in spite of five days on the antibiotics, as we had all hoped would happen. Tuesday afternoon she went to sleep at 4 and was literally just CONKED out. By 10 that nite I knew I had to wake her up to get her ready for bed, run a bolus feed into her, give her her meds and breathing treatments, etc. When i got her downstairs she was just a little too “listless” for my liking, although I realized that she had been sleeping pretty hard. She also felt burning up on her major joints, but the rest of her skin was freezing cold (she had been wearing two layers of clothes from head to toe). So I took her temp rectally (she is next to impossible to get any other kind of accurate temp on) – and she was 93.7. NINETY THREE DEGREES!!!!! For the record that is FIVE degrees below normal. Technically hypothermic. But I am trying to not panic too badly so I hook her up to vent and out pours 2 ounces of nasty bile – almost double what we get during her bad tummy times. Basically it just meant that her intestines had gone to sleep for a while too, and were backing up bile into her tummy. If she could throw up, I bet she would have. As it was, it had leaked up and around her tube in her tummy and made a nice little rash where it had touched. So i tried wrapping her up and rubbing her to warm her up a little bit, and took her temp again. I got a 94.3 that time, which is still a crappy temp, but figured that maybe we were headed in the right direction. I tried to check her blood sugars just because so many other weird things were going on with her – but after poking her in three different places, i STILL couldn’t get enough blood out to check, and i was done poking her. I cannot describe the miniscule amount of blood you need to run an accucheck – and she just wasn’t bleeding. Again – a sign that things just weren’t going right. Add to all of this that she was still breathing like Chewbacca on a bender and I was just about to collapse with frustration. So we settled in on the couch for a nice co-nebulizer treatment for both of us, and I bundled her back up for bed. She woke up Wednesday morning with a temp of 95.2, but it was 9:30 by then, and i had to go WAKE her up for therapy. She had diarrhea pretty bad, and we weighed her and discovered that she has not gained any weight in the past month. Now overall, this isn’t worrisome. Her average weight still works out to being a pretty good gain, and its not like she fell back off the charts at all or anything. But to me, knowing how crappy of a month she has had, it was one more sign that her body is working VERY hard to fight this thing off, using up every single calorie I put into her.
So all of this combined to make for an interesting morning. I really thought I would have to enact Plan B, which involved Kendall being admitted at the very least for a bag of fluids, possibly overnite for admission. i just about had a little meltdown because I can NOT for the life of me figure out WHY her body does so many weird things, and I am so tired of being the only one who pays attention to them, and feeling like I have no tools in place to know WHAT to do about them. Overwhelmed is a good word to describe it. Overwhelmed by a baby who does not follow the textbook on how to act and what to do at what time. overwhelmed by a baby who quite often overwhelms even her doctors, and having that burden put back onto ME to try to deal with and make sense of. And I was just totally DONE with that by Wednesday afternoon.
Dr. A comes in to the room and is blown away by how great Kendall looks, but after listening to her and reviewing her x-rays, agrees that we should definitely be seeing a lot more improvement by this point. He hears me coughing during this and makes me hop up on the table. I try to tell him that its just my asthma cough in the winter from the cold air, but he has none of it. I can’t even take the deep breaths he wants me to take as he is listening to my lungs it hurts so bad. So he sits down on his stool and folds his hands in his lap and looks at me and says “ My dear, I am going to be honest with you – I have NO idea how you are still alive. you are moving zero percent air right now, and are hardly breathing. If you didn’t have two kids with you, I’d probably send you for x-rays and admit you to the floor, but since I don’t want to make you crazy, i am going to give you one chance to fix this at home. You will start antibiotics TODAY, and you will go home and lay down, TODAY, and if you are not better in 48 hours, you WILL call me and we will assess what needs to happen at that point.” Trust me, when that man speaks, you listen.
And truthfully, having it acknowledged that I am not getting enough oxygen made SO much about the past few weeks make sense! My head always hurts, I have absolutely NO energy, I get short of breath walking up the stairs and forget hauling the laundry basket with me, unloading the dishwasher feels like I have run a marathon… and I just feel like i am drowning every hour of every day. And I know some of you will say – “why didn’t you go to the doctor earlier if you felt this bad?!?!?!” But honestly – I get sick every winter with asthma related illness. It usually starts a little later in the winter, but I just thought maybe with 4 kids it was going to hit earlier this year. I have been so very focused on keeping Kendall well that I haven’t really had time to analyze how badly I felt, or to think about doing anything about it.
So we upped Kendall’s antibiotic from ten days to 14 days, added in steroids, added in a preventative steroid to try to help boost up her lung strength, and started me on antibiotics also. The steroids seem to be really helping Kendall’s breathing become less labored, and she seems overall happier. Her temp came up that nite back into the 99 range, which means that her body had enough energy to try to mount its own defense against the bugs in her lungs –so that made me very happy and relieved that maybe we will finally turn the corner with her.
On the other hand, I had a relatively good morning yesterday, but have gone back downhill since that point, and am back to feeling pretty much like death slightly warmed over. The big girls are also now complaining of chest pains, tummy aches, and sore throats, as is Ben, and Kaylen continues to be her typical hurricane-ish self – so there is no rest for the weary around here. I really truly have no time to be as ill as I feel and wish there was just some magic pill I could take that would make me all better within two hours. Everything hurts and I just want to lay down and sleep for about 12 hours, but no one else is around to ensure that Kaylen doesn’t burn the house down, so I just gotta pull up the big girl panties and move forward. I know this is a very whiney post – sorry about that. I can’t even muster the energy right now to FAKE like I am not whining.
I cannot thank you enough for those of you who have been and continue to pray for us. I know that Kendall is in a pretty good place right now, and I pray that she continues to move onward and upward with fighting this.
i do have a lot more catch up posts waiting to be posted. Well, ok, some of them still need to be written, but who is counting?
Ok i have to go try to shut my eyes for five minutes to make the room stop spinning…
hopefully next update is full of good healthy news!