The next 16 months were some of the most difficult I have ever encountered. There is no guidebook that shows you what to do if your child suddenly becomes ill. There is no one holding your hand telling you which way to turn when nothing makes sense anymore. I think at the beginning my husband and I went strictly on addrenaline. I mean our baby was alive, and the outcome could have been so much different. If Kev had been even one more minute later checking in on her, we would not have our dream baby. The first hospital stay was so scary, because you have all these doctors coming in telling you differtent things. Alexa was constantly getting poked and prodded, while I would hold her down. She would look at me with her soulfull eyes, begging me to help her... and all I could do was hold her there. Knowing that by doing so I was helping her. How do you explain that to an infant? While in the hospital that first time Alexa seemed off. I mean she was breathing, but she was sleeping all the time. Also I started noticing that she wasnt eating very much. At first I thought she was just tired from the trauma of her ALTE (apparent life threatening event) but she didnt start waking up and she wasnt really eating. I kept telling the doctors that something wasnt right. They would just tell me that she was getting enough, and that she was probably getting even more than I realized as I was breastfeeding. I knew something wasnt right though, I was always so full. You have to realize that this baby before this event couldnt get enough food. After a week of telling the docs she wasnt getting enough I took matters into my own hands. I decided to pump and bottle feed her so I could keep track of her intake myself. In 24 hours she only took in 7 ounces. The docs said that it was only one day, to see how she did for the next couple of days. In 3 days or 72 hours she took in a total of 22 ounces. At this time the doctors realized she was not getting enough and put an NG tube in. The important thing I realized here was that I was my daughters best advocate, and would have to push hard to get what she needed to survive. During this hospital stay Alexa had more tests and procedures done than most peoples entire families will get in a lifetime. Everything kept coming back normal.
We eventually left the hospital with no diagnosis, but a plethora of doctors and specialists. They told us that she was probably just waking up from the ALTE that it just hit her hard and she would need time to recooperate. She left the hospital with an NG tube (tube that goes into your nose to the stomach) and an apnea monitor to monitor respirations and heart rate. We were seeing a pulmonologist for her respiratory needs, a GI doctor for her dietary needs, her cardiologist, and the neurologist, because she still was sleeping almost 23 hours a day. We also got Alexa enrolled into early interventions, to help her keep up with her developmental milestones. Things did not get any better.
Alexa's first GI doctor was terrible. If you ever have any uncertainties about a doctor follow your gut. Your families health could depend on it. When Alexa was 3 months old my husband and I knew we needed to get some second oppinions. Her GI doc had hospitalized her for a week taking out her NG tube to see if she would start eating on her own. We just watched her dwindling away. Until I put my foot down and demanded they put her NG tube back.
A wonderful friend who had gone through something similiar with her daughter recommended some great doctors, that would eventually save Alexa's life. We made appointments, but was put on waiting lists to see the docs.
Meanwhile something happened that would change everything. This is such a difficult thing for me to write about because it brings back such strong emotions, but needs to be said. When Alexa was a little over 3 months old she fell asleep in my arms, and instead of dragging her to her porta crib with her apnea monitor and feeding tube/IV pole (which would have surely woken her up)I laid her down on our chair and a half. She has this green blankie that she doesnt go anywhere without, and she would pull it over her head when she slept (I think to block out any stimuli). Anyway Kev and Kaylie were out of the house so I took this time to get some things done, such as cleaning. I put some music on low, and went to put some DVD's away behind the chair Alexa was on, forgetting for an instant that she was there. I knelt down right on her chest. As soon as I felt her I remembered, and felt terrible. She was screaming... I immediately checked her over feeling for any firmness (internal bleed) or difficulty breathing and didnt see anything. I called Kevin frantically and when we were able to talk she had quieted down. When he got home she appeared perfectly fine, and we made the decision not to bring her in. You have to understand that at this time we were seeing about 3 doctors a week, and we felt this was the right decision. This all happened on a Friday.
The following Wednesday while giving Alexa a bath I noticed she was having chest retractions. I called her pulmonologist and went to the ER. They did chest x-rays, and evrything seemed ok. The following Sunday (which just so happened to be Easter) we were visiting family and Alexa had about 15-20 episodes of apnea, getting worse and needing more stimulation everytime. Again we rushed to the ER, this time to Childrens hospital Boston .
This would be one of the most difficult hospital stays ever. While in the ER they took some chest Xrays and noticed that she had 5 rib fractures. I couldnt imagine what would have caused that, until I remembered the incident spoken of earlier. I told the doctor what happened and he agreed that that was what had probably happened as the fractures lined up perfectly with how I described her lying, my knee, and were of a crushing nature. But because she had a broken bone they needed to have the child protection team and social workers examine our case. The guilt I was already feeling about the accident and causing Lexa more pain was overwhelming. My God did they actually think I would harm my child? The child I was fighting so desperately for? Alexa was admitted to the ICU where the doctors and social worker there believed us. They didnt see why it would need to go any further... I completely get why they need to investigate things, I've seen enough to know there are some very bad people out there. So I was cooperating fully. However the tests that all the doctors had completed kept coming back normal, and now we come in and our baby has rib fractures. The child protection doctor started questioning whether or not we could have munchausen syndrome (where we could be causing our baby to be sick). At this time we were transferred to another floor with an entire new team of doctors. They didnt know us, didnt know the situation, but saw the rib fractures in the chart and called DCF. We had been in the hospital for a week at this time. One of the tests they completed showed that Alexa was aspirating (things go into your lungs when you swallow) everything. They immediately had her NPO (nothing by mouth), and scheduled her for a gtube (tube going directly into her tummy) to be placed. So this ruled out munchausen syndrome.
I remember finding out that DCF was being called, and what a blow that was. It was so embarassing holding my head up, as I felt as though everyone was looking at me like I was a horrible abusive mother. When DCF came they treated us (me especially) like we were common criminals. Threatening to go wake our 5 yr old daughter in the middle of the night at her grandparents house so they could question her. I immediately refused this as it would only terrify her in an already confusing situation. Also I didnt see the big rush as we had already been in the hospital a week, what was one more day? Apparently this was the wrong thing to do. They seperated us and qusetioned me very aggressively, basically accusing me of hurting one or both of our children intentionally. I had to leave the room... I was so upset, and angry. I had just found out that my baby was not getting better and would not be eating anytime soon. The life we imagined for her was all up in the air, and now I was being accused of hurting her. She is my world. During this time I have never left her side. Never wanted too, I know she needed me, the reassurance of my touch, or voice as she was surrounded by the unknown. Needless to say I was very emotional, maybe overly so, but they were questioning my very existence. I know my love for my children is the best thing about me, they are why my life makes sense, why I'm here. Showing emotion was probably the wrog thing to do as they decided to take our children away from us. They were going to let the hospital have custody of Alexa and my parents have custody of Kaylie. They were setting it all up, when my wonderful husband stepped in and calmed the situation down. They decided they might be acting to rash and that they would investigate further. I was charged with neglect, and had a family study done for 3 months where the case worker thought we were an examplary family. They had doctors notes, and personal references along with the case worker agreeing with us, but decided to keep the charge of neglect. This basically means that anytime we go to the hospital with our children my name is flagged and social workers come talk with us, I'm also on some registry where they put the worst of the worst. We are now in the process of fighting this in court.
Meanwhile everything we did was monitored with different eyes. I was no longer a good mother staying by my child's bedside, but someone who abuses her child. I felt as though I lost my right to be Alexa's advocate, but I never stopped being her mother. I now know that I am still her best advocate, and that I still make her medical decisions. The way this situation was handled was wrong. There has got to be a better way to go about things without ruining a good family. I have suffered so much from this situation, many sleepless nights, anxiety and depression. The decision they made couldnt be further from the truth as I am a good mother. I have saved my daughters life many times with my vigilant watch over her. I know I can hold my head high, but every once in a while a new doctor will question what happened and I feel that horrible feeling all over again.
Anyway I regress... During this month long hospital stay we were still no closer to finding out what was wrong with Alexa. I just wanted answers, but Alexa continued to be a medical mystery. They have these things called family meetings where you get together with all the doctors/specialists at once, and go over the patients care. I remember one of the doctors was sure that aspirating was the cause of Alexa's apneic episodes. She went so far to say that Alexa didnt need her apnea monitor anymore. Thank goodness none of the other doctors agreed or Alexa wouldnt be here. I remember asking a few times if they though that her issues could be caused by something genetic. They assured me it wasnt, that she didnt "look" like she had a genetic disorder.
Alexa had started vomitting everything that went into her stomach, not being able to keep anything down. This was especially dangerous for Alexa because she aspirates and her aspirating vomit would be very dangerous for her. So at this time we realized she had a motility problem as well. Her gtube was switched over to a G-Jtube which bypasses the stomach going directly into the jujenum. She is also on some medication that helps with motility, between the 2 things seemed to be ok in that department for a while. She now sees the world leading motility specialist. We love him...
Alexa is also seeing a great neuromuscular doctor, as she wasnt developing properly and meeting her developmental milestones. She also started having difficulty holding her head up. She had many more hospital stays and tests done but still no answers. So at one of the family meetings while in hospital I insisted she see a genetecist as we were still getting no where. The genetecist looked her over quite thoroughly, and decided to run a few tests. One for something called Noonan syndrome, and guess what, it came back positive the PTNP11 gene is affected. Finally some answers, but does it answer all our questions?
Noonan syndrome is a genetic disorder that causes abnormal development of multiple parts of the body
Things that could be affected vary widely. For Alexa we know that she has the pulmonic stenosis, and aortic valve thickening, also that she has ptosis (droopy eyes), hearing loss (dont know to what extent yet although it is a progressive hearing loss), short stature, swollen feet and hands, failure to thrive, vomitting, swallowing difficulties, digestive difficulties, speech and language delays, hypotonia (low muscle tone), and scoliosis. There are many other things that could be affected but either havent affected Alexa yet or never will. She is at an increased risk for forming childhood leukemia. So everytime I see any bruises I tend to freak out a little bit. However even with all this it still does not answer all of our questions.
The continuation to come soon.
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