March 8th is the big day! We have a noon c-section scheduled for the arrival of baby boy Hakerem. We finally agreed on a name and can't wait to share it with the world...after he's born :) There are some finishing touches to be placed on the nursery, but we have diapers, wipes, clothes, and a crib. We're good to go and very excited for his arrival!
As many of you already know, Alli was admitted to the hospital (yes, again) yesterday afternoon. We have struggled during this cold/flu season to keep her healthy and breathing clearly. She has had repeated instances of pneumonia and she now also has evidence of pleural effusion, in addition to pneumonia in her right lung.
The doctors' current operating theory, since she is virus free, is that she is aspirating in to the right lung. The trachea is positioned closer to the right lung, therefore, when aspiration occurs, it goes to the right lung. What could she be aspirating? At this point, they think she is refluxing and then aspirating her own secretions (including what is refluxed from the stomach). The solution for this right now is to switch out her g-tube button with a gj button. The g-tube button currently deposits her feedings directly in to her stomach. A gj tube bypasses the stomach and deposits food directly in to the small intestine. It is still possible for there to be some degree of reflux from the small intestine in to the stomach, however, it is more difficult for those contents to reflux beyond the stomach in to the esophagus. Her button will be switched out on Monday (hopefully). In the meantime, she has an nj tube. The nj tube goes through her nose (similar to her ng tube) and passes through the stomach in to the intestine. We will have to put her blended food diet on hold until we get this under control, but have found a food based formula equivalent to hold us over until we can get back to the blended food diet. I have also considered juicing for her, since that would be 100% fluid with no particles to clog the j tube. We can not be as independent with the j-tube as we were with the g-tube. If it comes out, she needs to have it replaced in the GI office or at the hospital.
With regard to the pleural effusion, they think this is being caused by the residual defects from her original cardiac defects. She has a good degree of stenosis in her branch pulmonary arteries, which causes some regurgitation of blood out of her mitral and pulmonary valves. Once her pneumonia has cleared, they are planning to perform a heart cathaterization to more closely examine that regurgitation, as well as to open up what they can in the branch pulmonary arteries. They have been able to approximate the impact of both of these through a cardiac MRI and a lung perfusion exam, however, the catheterization will give them the full picture of her anatomy and the ability to implement some changes while they are in there.
All of this is supposed to happen over the course of the next two weeks. So, let's hope baby boy cooperates.
When we were last discharged from the hospital, in January, we underwent a number of changes at home. We started in-home nursing 8 hours per day with Alli and we beefed up our home medical equipment. We now are the proud renters of a suction machine and the vest airway clearance system. Alli's bedroom is starting to look more like a hospital system, but with the assistance of the nurses we are better equipped to manage more of her care at home.
As you can imagine, being full term with all of this going on, my usual 'tough as nails' (ha!) exterior has started to crack. I'm eager for the hormones to take a rest so I can go back to some semblence of a composed and capable human being. I cry on a dime. It is ridiculous. Then, of course, there are the helpful people, who I'm not even sure are well intentioned, who verbalize to me, "so, how exactly are you going to handle this when the new baby arrives?" I'm not a huge fan of this question. It is a fair one, but I'm not a planner. Our plan with Alli since the day she was born was to take things one day at a time. I think we'll stick with that plan and be thankful for the many extra hands we have to help us - family, friends, Alli's nurses, and Samantha's nanny, Megan. We've had to overcome our reluctance to ask for help and acknowledge that between the 2 of us, there are times when there are more things than Jason and I can handle and mostly for the sake of Samantha, we take people up on offers to help, especially where she is concerned.
Samantha continues to do well, thankfully. I feel like sometimes we are parenting her on auto-pilot. I can only hope that we have enough stability and consistency in place that she doesn't go broke on a psychiatrist when she hits her mid-quarter life crisis some day. I second guess all of our decisions with her, but just when I find myself wondering if I will look back and regret the decision to put her in school at such a young age, I find myself so thankful for the friends that she adores at school and the fact that she loves to be there. Every day she tells us she is excited to go back to school and carpool and the next day. It gets to the point that Jason and I feel bad for her when school is out. So, I'm happy that she has a happy place and somewhere to go that means she doesn't have to tag along to all of Alli's doctor and therapy appointments.
Thanks for your continued love, prayer, and support for our family. We keep all of you in our prayers, as well. More updates to come this week, as we find out more information.
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