Friday, July 27, 2012

Going home with Lilly for good.

All I can say is that God knows me so well and He truly will not give you more than you can handle. He will stretch you pretty far and farther than what you think you can go though! So we went through the 48 hour no episode at the hospital. I asked all the nurses and doctors if its possible for her to have any more after we are discharged. They said it is not impossible but it is highly highly unlikely. We knew that she was going to go home with a cough. Hello she does have whooping cough and I knew she would have little cough spats that we would have to suction out all of the junk she would cough up with the bulb syringe. We get te discharge orders and are soooo excited to go home. Gabby literally did a happy dance in every room of our house at 10 pm! ;) we finally go to sleep for the night and I hear Lilly cough so we sit her up like we have been doing all along and she cough cough coughs and all of a sudden she starts going into her deep cough where it sounds almost as if she is gulping her cough and Dave and I panic...I immediately flip on the light to see if there is color change and she stops breathing, around her mouth and eyes turn blue and all we have is this bulb syringe, where up until this point I thought that thing was only to get nasty boogers out of her nose. She finally gasps for air and does her little coughing spell and her most pitiful saddest heart wrenching little whine after and immediately falls asleep from exhaustion. I wanted to call 911 right then and there. We call the nurse line at CM and they said we need to bring her back immediately. So we rush to the ER yet again and start all over. I finally got back to our room around 3:30 am and talked with the nurses and doctor and they say we need to start the 48 hour count down again. She has another episode at 5 am. I slept in pretty late considering how late or how early I went to bed. I was so overwhelmed at really had no clue how to process everything that was going on. And then the doctor comes in and I know God sent her to me at that very moment. She comes in to talk with me about the 48 hour release. But then she tells me that her son had pertussis at 20 days old and has first hand experience with this disease. Her story was almost identical to mine where she begged for him to be tested and was denied up until the point where it was too late for antibiotics to help anything other than take away contagiousness. She then goes on to tell me they call it the 100 day cough for a reason, and that she will more than likely have coughing episodes where she has apnea (stops breathing) randomly this next month and possibly through September. But she gives us another option vs. staying in the hospital that long or coming back everytime this happens. She said they went home with an apnea monitor that alarms when heart rate and oxygen level are too low and oxygen. She makes the call for us to get this set up, and we are thrilled! Honestly Dave and I have seen this so many times now that we feel more comfortable doing everything than watching a nurse do it. Faith is an easy thing to talk about but the hardest thing to do when reality is literally slapping you in the face. The healing for her was always there and those two days we went with no episodes I believed it, received it, prayed for it. But when we got home and she started coughing I immediately panicked and doubted and wondered if she would stop breathing. It is so easy to have this unshaking faith for someone else that in reality if something actually happened to them they would think it was horrible in the moment, but it wouldn't effect them for the rest of their life. It is another thing to have faith for someone so close to you, that it would change the rest of your life. Dave and I talked about do we just have faith that God is going to completely heal our little girl? Or do we just keep her in the hospital just in case? Does that mean our faith is weak? And are we perfectly ok with Gods sovereignty that whether he heals her or the unthinkable happens? And I told Dave that I could not live with myself for the rest of my life if something happened- I would blame myself. And God met me where I was, and gave me a doctor who has worked here the whole time, who from the beginning I knew her name and she was just never assigned to Lilly. Who just happened to have the same story as me. I don't believe that was just coincidence. He saw my weakness and met me where I was. Is it embarrassing for me to admit that, absolutely. I wish I could have this amazing testimony that God miraculously healed my daughter wholely and completely. And I'm sure I would have that story if I had just believed him for it. But the funny thing is He still gets all the glory. He still gave me an answer and he still can heal her completely, but he gave me exactly what I needed in this moment. And in the end my faith to trust that He will provide exactly what I needed has grown and He still gets all the glory. I hope and pray we don't even have to use it at home, but how good is my God to give that to me so I can leave this hospital with confidence. He never fails. My faith and trust may fail, but He never does. I may be weak, but Your spirit's strong in me. My flesh may fail, but my God you never will.

Wednesday, July 11, 2012

Update on Lilly

So the past two weeks have been the most heartbreaking, frustrating, helpless two weeks I think I have ever lived. We have literally lived in Dr. offices, the ER, and the hospital for two weeks. I'm pretty sure everyone at college park knows me by my first name now. Where to begin?

Two weeks ago today Dave and I took the girls for Lilly's 8 week check up and Gabby's 2 year check up. Both had their shots- I don't think it ever gets easier watching your babies get shots. Gabby talks now, so when they gave her the shot she said, "Owwwww, that hurts!!!" and sobbed :( and of course any mother/father knows the devastation of watching your tiny 8 week old(or in my case chunky) get shots for the first time is mortifying. But life went on.

Thursday morning: Lilly wakes up with a cough. No big deal right? WRONG! What started out as a simple cough here cough there has manifested itself into these horrible coughing fits where my baby girl is struggling to breathe each fit. From the beginning my mom was convinced it was whooping cough. I actually thought she was crazy, but with 48 hours of 1000 phone calls from Nana asking how many times she had coughed, I decided to take her to urgent care Saturday morning to prove she did not have it. We take her in, the Dr. examines her and says she is perfectly fine. Mom insists on getting herself tested for pertussis (whooping cough) so they do and send us on our way. 

So Sunday, she is coughing more but nothing alarming. Monday morning, she woke up and coughed and made the tiniest little "whoop" sound. I thought wow, maybe she could have pertussis? So I call to schedule an appt. with her dr. and ended up seeing her nurse practitioner because she was available instead. They examine her, and say you would KNOW if she had pertussis. It wouldn't be "maybe we should take her to the Dr. It would be we need to get to the ER right now." So they denied to test her for pertussis. So that made me feel better. The only concern they had on monday was that her temp. was right at 100 and said if it got over 100.4 I should just take her to the ER. Well we get home, she is sleeping soundly in her car seat, I get her out to feed her and noticed she felt really warm. I took her temp and it was 101.3. So we loaded up to go to the ER. By the time we got to the ER her temp had spiked to 104! So immediately they start taking blood samples, put an iv in her hand, used a catheter to get a urine sample, stick all these wires on her chest to watch her on a monitor, and do xrays. All I can say is I heard new cries all day that day. The first Dr. comes in to talk to us and ask questions. I mention that the reason we even knew to check her temp today was because we took her in for her cough and they noticed her temp was a little higher than they'd like. We asked AGAIN if it could possibly be pertussis and the Dr. said there was NO way that it could be. Still not convinced 7 pm rolls around and we ask the new Dr. and she said the same thing. However they wanted to admit us to the hospital to observe her. 

Hospital dr. comes in to talk with me. He said that her white blood cell count was really high and that he thought we should do the spinal tap just to make sure that it is not a bacterial infection. I agreed even though everything in me did not want her to have to go through one more thing. They got the room ready and I can't describe the pain I felt watching my baby go through that. They had to curl her in a ball making her head almost touch her toes. and fill 4 vials of her spinal fluid which they had to stick her with needles at least 2 times in her back for each vial. My heart almost exploded after everything they had done to her. We get back to the room and they said it would take 48 hours before they would have the results. So we waited and waited and waited! Seriously it was like time stood still for two whole days. The night before we went home she had her first scary coughing fit. She was struggling to breathe. I called the nurse in and she told me it was most likely the fluids just making the cough sound worse than what it actually was. I talked with the Dr. the next morning about it, and she said the same thing. I asked her if we should test her for pertussis and she said no, not to worry about it. So later that afternoon we get the release papers. At this point she had still been having a few coughing fits where she would struggle to breathe a couple times and eventually catch her breath. Before we leave I asked the new dr. if we should test her just in case before we leave. She said no, because it was a viral infection a cough just comes with it, and with her being on all those fluids it is sounding worse than what it is. 

We leave. We get home. Thursday night was a nightmare. She had coughing fits all night. So I call the next morning to schedule her follow up appt. Her pediatrician was out of town, so I scheduled with who was available. Take her in, ask if she should be tested for pertussis, because her cough is only getting worse and she is struggling to breathe. They examine her, look at her hospital report, and say it will go away on its own. At this point I am done. I am done with taking her to the Dr.  and I am done with looking like I am a crazy person for still believing there is something seriously wrong with my daughter. 

The weekend she only gets worse. More coughing fits, longer struggles to breathe and now she turns bright red during her coughing spells. Sunday she had a pretty good day, and I think to myself maybe she is getting better! No, Sunday night was the worst of all-or what I thought until Monday evening/night. Monday had progressed to she would gasp for air to the point where her lips were turning blue. She even had two spells where she would simply gasp for air without even coughing. Mom said take her to the ER now. But considering everything we had been to, talking with 8 different doctors telling me all the same thing--I was tired of giving them thousands of dollars to tell me nothing was wrong with my baby girl. So Tuesday morning I called in and demanded to get in with her pediatrician. She is extremely difficult to get in to without scheduling an appointment months in advance. But I refused to talk with anyone but her at this point. I took her in yesterday morning and just explained how she has progressed. Her first response was she needs to be tested for pertussis and put on antibiotics immediately. SERIOUSLY?! I almost couldn't believe it. I guess it took me saying that I'm having to rehearse CPR in my head in case she stopped breathing and 911 didnt get there fast enough. 

I can't even begin to say how frustrated I am. For such a simple test that I wanted her to have all along, it has progressed so much to the point where antibiotics might not be enough for her. The test results take 3 days before they show if it is negative or positive and I am so anxious it's not even funny. All I can say is if she has to be hospitalized and put on oxygen, I know 8 doctors who are going to pay for every bit of it. When momma ain't happy, ain't nobody happy and momma bear inside might just have to come out. ;) 

All that to say please pray for her! Please pray for my irritable level as well that I don't take it out on my precious 2 year old or my hunk of a husband for that matter. I just feel so helpless. I would give anything to switch places with her so she doesn't have to suffer like that :( And if the results come back negative, I don't know what to do. There is something seriously wrong. She said she wants to try acid reflux medication if the results come back negative, but I really don't think it could be. She has never struggled eating (it is obvious by the rolls that just keep rolling on her legs, belly, arms..well everywhere.) I just want her to be better. I really don't care what it takes, how much it costs....there is nothing I wouldn't give for her to be better.