As I type it is going onto 2:00 a.m., Thursday, July 29th. It has been an extremely difficult evening. Everything had been fine today, with pop-pop & gramma here I was able to get back to the camp & get a rest. I had no idea how important that rest would be, in preparing me for the evening. It was when Andrea & I returned at 4:00 when I could barely arouse Alyee. After 3 hours, I started to get concerned. It was 7:00 at that time, but with every check Alyee answered all the most frequently asked questions and simply complained of pressure in her head, pain in her lower back & neck (pretty much what she has been experiencing). The pain level she indicated was anywhere between a 7 and 9, pretty much the usual lately. The nurse did come in and adjust the drainage, and Alyee was feeling less pressure in her head. By 9:30 it was time for her to take that dreaded saline. She burst into tears & said, "Mommy, I just can't, it's making me sick. Just the smell is making me nauseous." Well, you know me...ever the pusher, I told her this is what she would need to do to get that sodium level up, so she could 'go home'. So...she proceeded, struggling with every mouthful. I feel guilty...like she was taking that to 'please me'. By 10:00, I knew something was wrong, she kept having this little 'cough', I could hear her wheezing, then she said, "it hurts in my back". I got the nurse in immediately. Because of Alyee was becoming more responsive the nurse felt secure in administering morphine at that time. (She was reluctant to administer it earlier, because Alyee was so lethargic) I am so glad she 'woke up' enough to have that morphine, because I believe that is what sustained her through the next 2 hours. The first action taken, was to put her on the oxygen tubes in the nostrils. Her rapid breathing began to come down with the oxygen & use of breathing techniques she's been practicing. However, the respiratory therapist wasn't too convinced, so they offered her the full mask, which Alyson readily grabbed. During these few minutes, Alyee's little 'cough' seems more aggravated. The respiratory therapist decided it was likely the dry air, so she added some humidity to the oxygen mask. Alyee was unable to breathe on her back, still breathing shallow & almost gasping as she rolled to her side.
It was agreed that an X-ray was necessary to see about that fluid. She could hardly breathe laying on her back for the 30 seconds it took to get the X-ray. The X-ray showed Pulmonary Edema (again, so rare for her age/non smoker etc. The Alveoli in her lungs were not opening fully, due to the amount of fluid/pressure). The critical care team came into action (that is a group of about 7-8 specialists). They did an ABG = arterial blood gas (to check the blood oxygen & a multitude of other things within the blood). She was then put on a CPAP = Continuous Positive Airway Pressure). The CPAP is like an oxygen mask, but it is more 'sealed' around the nose, cheek & chin area and it gives added pressure to help open the alveoli.(Alyee will be on the CPAP through this evening and until the oxygen in the blood goes up and she can maintain oxygen saturation in the blood.)
Next, our buddy 'Anthony' put in the dreaded A-line (that she had been free of for a few days). Her blood will need to be tested every 2 hours, so the A-Line will allow that to happen without having to be poked every time.
In addition a NG (Naso Gastro Tube) was put in place. The NG is a tube that goes up nose, down throat to the belly. (The nurse said Alyee took that better than anyone she'd ever seen!) This tube was placed under the CPAP & just removing the CPAP for those few moments caused great difficulty in Alyee's breathing. She was wheezing, coughing & gasping. That was SO DIFFICULT to watch, but I held her & continued to support the slow breathing techniques she'd learned so quickly a few days ago. (I never thought I'd need that Lamaz breathing after my babies grew up!! I had to breathe right along with her to keep calm & to keep her focused.)
This NG tube provides a means to administer meds without having to remove the CPAP. It was as if she welcomed the NG tube that would now keep her from having to 'taste' any of the saline -or any other medication at this point. Now with the NG in place "Lasix" (a medication) was administered to help Alyee rid the excess fluids building up in her system - not just the fluid in her lungs, but the air building in her abdominal cavity. This Lasix would further increase the amount of urine she would eliminate Watch out, if this Lasix is going to relieve additional bladder pressure...she will no longer be "peeing like a race horse" (as she always says) - it will be more like a 'fire hose'! If they were emptying the cathidar every 2 hours before, they will be in every 1/2 hour now!
When the 2nd set of blood work came back it looked a bit better. (For those of you needing details, her PO2 was 86. For those of you who didn't need the details, that is the oxygen in her blood). While that number was OK - it really wasn't great, because that was with the oxygen mask and then the CPAP. She will have to maintain that level when the CPAP is removed.
That was from Pauline and you can see how stressful that was for her.
This morning Pauline said that after she e-mailed that at 2:00am, Alyson rested well, and with little pain.
At 8:00am they took her to do a cat scat on her lungs. The results were that she does not have Pulminary Embelism. That is great news.
She has had some breakfast this morning, and is feeling a little better.
So as of this morning she now has 4 IV's going back into her.
They have put the A-line back into her artery to monitor her blood pressure and to take blood samples.
She has the tube up her nose, and she has the oxygen mask on.
She is still in pain in her lower back, but not the severe pain she was experiencing last night.
They had started to reduce the amount of fluid being drained from her head, but they have increased that again to keep the pressure down in her head. It is still looking like fruit punch.
Alyson has had a bit of a set back here, but nothing that can't be dealt with. Pauline is sounding positive this morning, comfortable with the situtation the way it is now. Andrea is there to help as well.
To end this morning note with something that may put a smile on your face. For those of you that really know Alyee, she loves dogs. All dogs. After we had been at the hospital for a couple of days we found out that they have therapy dogs that come to the hospital to visit patients. Well Pauline signed up for that as soon as she heard about it. Yesterday morning two Golden Retrievers came into her room to visit her. Their names are Bud and Wiser. As you can imagine her face lit up. Lets hope she gets that same smile back on her face real soon.
Thanks for all your thoughts and prayers.
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