Witney and I were discharged from the hospital on Friday October 8. We were so excited to both get to go home on the same day (as opposed to Will, who had to stay in the hospital 9 days after me when he was born). On Saturday I woke up to clinical signs of a urinary tract infection, which I have never had before. I called my OB/GYN office and spoke with the doctor on call about my symptoms. She called in a prescription for Bactrim and I took my first pill at noon. During the afternoon my symptoms got severely worse, and by 8 pm (8 hours after my first antibiotic dose was taken) and two more phone calls to my doctor, Bill and I headed to the ER. I was urinating blood and was in extreme pain. I was admitted into the hospital and eventually had a Foley urinary catheter placed; unfortunately it took 3 different catheters and significant pain to get one in place that did not get clogged by blood clots. I was admitted to the prenatal/ GYN floor, which is where Witney and I were discharged from less than 36 hours earlier.
After being admitted to the hospital early Sunday morning, it was discovered that my platelet count was significantly dropping. It dropped from 86, 000 to 26,000 to 22,000 to 13,000 to 6,000 by Monday afternoon. The doctors were very puzzled as to what was going on, and it appeared that I was a “medical mystery”. Based on my history and lack of other clinical signs, it was decided on Monday that I may have Bactrim Induced Thrombocytopenia. I ended up having 3 of the 6 doses of the antibiotic and the drug was discontinued on Sunday night. Monday night they started me on an IV infusion of immunoglobulins and I had a platelet transfusion. All of my blood work up until this point had been within normal limits, other than my severely low platelets. Overnight Monday my blood work started to look worse. Today, the doctors decided that my diagnosis may be something different that is more serious. Now they think I have Thrombotic Thrombocytopenia Purpura (T.T.P.) with Microangiopathic Hemolytic Anemia. This is a lot more serious condition and can be life threatening if left undiagnosed and untreated. The doctors are very confident that I was diagnosed super early in the course of the disease and that my body really doesn’t know that I am sick yet.
http://en.wikipedia.org/wiki/Thrombotic_thrombocytopenic_purpura
The treatment for T.T.P. is plasmapheresis treatments once a day and high doses of steroids. I had my first treatment this afternoon and it went pretty well. Tomorrow they are planning to place a central line, which will mean no more needle sticks for twice a day blood draws and no more needles for the plasmapheresis. The plan is do undergo five days of plasmapheresis treatments and high doses of steroids to see how my body responds.
I am going to be transferred from the prenatal/ GYN floor tomorrow to the general medicine floor where I will be under the care of the Hematology service. I will probably end up having a roommate and will no longer be able to have Will and Witney come and visit me. Hopefully we will be able make arrangements to have visits in one of the private rooms in the nursery 1-2 times a day so that I can still see my children. It sounds like I am still able to breastfeed with all that is going on. I am going to start pumping exclusively and feeding Witney with bottles, as I will probably have a central IV line placed near my neck and don’t need Witney to accidentally pull on it, etc.
This has been a very scary couple of days. It is definitely not the way we anticipated spending our first week together as a family of 4. I am trying to be very strong and optimistic, but am also super freaked out by all of this. We will keep everyone up to date as to what is going on. Please keep myself and my family in your thoughts and prayers as we continue with this battle for my health.
Thursday October 14, 2010
Thank you so much for all your love, support, thoughts, and prayers. This has been a super scary event and I am hoping we are starting to see a light at the end of the tunnel. First of all, it looks like I am not going to get moved to a different room. I guess there are 8 people on a waiting list in the ICU looking for a bed on the general medicine floor, so since I already have a bed on the maternity floor, the nurses are pulling to keep me here. This is huge news for me, as if I moved to the general medicine floors, I would probably have a room mate, and would not get to see my children, as I am not about to expose them to who knows what diseases are up there. We are keeping our fingers crossed that I do not have to move.
We received very exciting news last night. I had a central IV catheter line put in my right jugular vein/ inferior vena cava yesterday. Boy was that fun. Then I had my second plasmaphoresis treatment and from 8am-8pm my platelet count went from 10,000 to 64, 000!!! I could not believe it when the nurse came in and told us the great news. Our goal is to get over 100,000 and my nurse said she would not be surprised if we get there today. I am on high doses of steroids along with the plasmaphoresis. The doctors want me to get at least 5 days of treatment. If my numbers continue to improve and I continue to get stronger, I could even do the plasmaphoresis as an out- patient procedure. I just want to get home and enjoy being a family of 4. We are keeping our fingers crossed that that wish may come true by this weekend. I no longer have to get poked with any needles, as all my blood draws and treatments will be done through my central line. I am still pumping like crazy and we are feeding Witney with bottles for the immediate future, as I am pretty sore from my Central Line surgery, and we don't need her curious fingers touching my central line.
Thanks again for all your thoughts and prayers; it feels so wonderful to have amazing family and friends out there routing for me and the improvement of my health. My family and I are truly blessed!!!
Friday October 15, 2010
The good news keeps coming in! Yesterday I got to have my urinary catheter removed, I got to take a shower and brush my teeth, and now I actually feel somewhat human again. We found out last night that my platelet count is up to 112,000!! We are so elated to hear that news. I still have a long way to go with recovery but we will take whatever we can get. Today I go for my 4th plasmaphoresis treatment. It is such a blessing that they have been unable to transfer me to the general medicine floors; I am able to have Witney with me 24/7 as long as another person is in the room with us at all times. My son Will comes to visit once a day. And I think that is a huge part to my successful recovery. I just can not imagine what it would be like without getting to see my children; they bring such joy to my life and make me smile, and I need all the smiles I can get. Please keep the thoughts and prayers coming my way; they seem to be helping immensely!!
My Good Friend Renee And Her Daughter Emma
Saturday October 16, 2010
Yesterday ended up being the hardest day for me so far, and the most emotional. We were elated with the news that my platelets keep continuing to increase. By Friday night my platelet results were 144,000!! We are so happy that my platelet count keeps going up. Bill has developed a really bad cold, and I started to have a cough yesterday. Since I am on immunosuppressive doses of Prednisone I had to ask him not to come back to visit yesterday afternoon. That was devastating news to both of us, as he has been my rock and savior through all this. Thankfully I have so much love and support from family and friends that they will help both of us get through this difficult time.
I found out Friday morning that my hematocrit (percent of your blood that is red blood cells) is continuing to drop. It is currently 22 percent, with normal being around 30-35 percent. The doctors decided that I should have two units of red blood cells transfused last night. The first unit went very well and I got ¾ of the second unit before having what the doctors think is a mild reaction. I started to get a mild fever and my skin got red. They discontinued the blood transfusion, drew some blood work (which all came back normal), and gave me some Tylenol. It looks like whatever happened was very mild and there should be no long term effects. Tomorrow is another day and hopefully it will go better than today. I just need to keep thinking positive and about how far I have come during my last week in the hospital. Keep the thoughts and prayers coming our way.
I had a great day today (Saturday)! I had lots of friends come by to visit and had lots of laughs. It is amazing how much it can help with your recovery just to have friends stop by and spend some time with you. I am so blessed to have so many amazing friends, both near and far, in my life!!! I had my 5th plasmaphoresis treatment today. I get to take the day off from treatment tomorrow and we will see how my blood work looks without a treatment. My blood work tonight looks amazing! Platelets are up to 240,000 and my RBC and Potassium levels are within normal limits. If all goes well with my blood work over the next 48 hours, I may get to go home by Tuesday!!!
Playing Light Sabres With Grandpa Wallace
Monday Oct 18, 2010
Sunday was another great day! I felt full of energy and was so excited that I could actually take care of Witney for the first time since I have been in the hospital. I was always too nervous that I would drop her because I was so weak, etc. I had several friends come and visit which really brightened my day. I got to have the day off from plasmaphoresis, so we just relaxed in our room all day. The only thing missing from my day was seeing my husband, who was still home recovering from a really bad cold.
Sunday night was the worst night in the hospital. We could not get Witney to stop crying. She was inconsolable for 2 ½ hours and we almost ended up taking her to the Pediatric ER in the middle of the night. Finally my mom was able to get her to calm down and go to sleep. Needless to say I woke up with a pounding headache this morning. And we are still really struggling with my high blood pressure, so this morning was another really rough morning for me. They keep upping my blood pressure meds and adding more to the picture. They got my blood pressure down with medication and then I felt really light headed and nauseous. I slept through my whole plasmaphoresis treatment this morning, which was much needed.
Then all of a sudden, the mood of today completely shifted. I still felt crappy all day, but during my treatment this morning, I received the best news I could ask for. As long as everything goes well for the next 24-36 hours, I get to go home on Tuesday afternoon!!! That was music to my ears.
The plan is to get plasmaphoresis tomorrow morning and then get discharged tomorrow afternoon. I will come to the hospital Wed and Fri this week for plasmaphoresis treatments as an out- patient procedure. We will have a visiting nurse come to the house two times a day to teach us how to take care of my central IV catheter. I will get my blood drawn at home and will keep monitoring my blood pressure at home. I can not wait to get home to my family!!! It is still a long road to recovery, but I will be able to do it in the confines of my own house and with my husband, son, and newborn daughter with me every step of the way.
Witney ended up going to the pediatrician this morning. She weighed in at 9 lbs 1 oz!! She has passed her birth weight and is only 13 days old! The pediatrician told me to watch my dairy intake the next few days because she was very gassy, and see if we notice any difference. Her umbilical stump fell off today, so we don’t have to worry about that at all when we are home. I made the difficult decision of sending Witney home with my parents tonight so I can get a good night sleep. I miss her so much already; looking at her empty crib in the corner makes me want to cry. But I know it is only temporary and that I will get to see her precious little face when I get home tomorrow. It certainly is quiet in here tonight without any roommates; Witney is with my parents and Will is home with daddy.
This feels like dejavu. When Will was born he had to stay in the NICU/ nursery due to being born 6 weeks early. He was finally able to come home when he was 13 days old. Both Will and Witney were born on a Tuesday, and both Will and Witney got to go home on a Monday, when they were both 13 days old…
I can not even begin to describe how grateful we are to have such a loving support system of family and friends around us. We would have never made it through this experience without the thoughts and prayers from all of you. Thank you so much for all that you guys have done for us; we are so blessed to have you all in our lives! And all I can say is, TOMORROW, I’ M GOING HOME, TO THE PLACE WHERE I BELONG!!!
Playing Light Sabres With Grandma Wallace
Finally Going Home- 13 Days Old
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