We are less than 2 months away from surgery and everything is still running according to plan in the Delgado House. Of course with Juliana that can change. It's very strange to be getting this close to surgery after waiting for over 2 years. We are finally getting rid of the big liquid oxygen tank which has now become a coat rack for little Omar (it's the perfect height for him). I was a bit nervous about having it picked up but we are keeping a couple of cylinders in the house in case of an emergency. It's been 2 months since she has been completely off oxygen so I think its time.
Juliana is also getting ready for school which is scarier for me to think of than surgery (believe it or not). I just can't imagine Juliana with other kids that are probably going to be twice her size since she is not even on the growth charts. She only weighs a lil over 20 lbs and is still rear facing in her car seat. She's a tough girl though and I am sure her toughness will more than make up for her size! Along with getting ready for school comes the evaluation of her cognitive, social, fine and gross motor and communication skills. She is delayed in all areas except her social skills which is exactly what I had expected the test to say. She is moderately delayed in her cognitive and motor skills, but her communication is severely delayed which I believe has a lot to do with her hearing loss. She is able to communicate her needs to us in her own way, but others who may not know her as well are not able to understand her needs or wants. With time and lots of work she will certainly overcome this delay.
We did have one incident this month that landed us in the ER. Juliana thought it would be fun to twist the IV pole round and round and round til she pulled the end of her Broviac (semi permanent IV) right off. We woke up to find her giggling in her crib at what she had done. We of course did not find this funny at all. In my semi frantic state I was able to syringe some heparin into the line to prevent it from clotting up. This was a difficult task because unlike our previous line breaks she had completely removed the end which left a tiny little opening at the end that was barely big enough for us to get the needle point on the syringe into and do it as sterile as possible. We clamped it and sterlized the line and surrounding area and covered it with a large tegaderm dressing to keep the clamp in place and the line protocted. The good out of all of this was that after almost a full day spent in the ER we were able to get the chest xray we needed to check the placement of her line before going into surgery. It was on the list of things to get done but we had not anticipated having to do it this way.
Fortunately all is well and the line was repaired. As we were driving home from the hospital we did get a funny phone call from a pediatric surgeon's office letting us know that they scheduled Juliana for a pre-op appointment to replace her line. For those of you who are familar with CVL's and the limited places where these can be placed you know that pulling a line that is functioning is just not something you do without cause. Certainly having a line that has needed to be repaired a few times is not a justified reason to pull a line in a child who has very limited access and has waited over 2 years to have a major surgery due to her chronic lung disease. So we kindly objected to having Juliana intubated for an unnecessary procedure further adding to the risk of having a very necessary procedure postponed. Intubating is the process in which and tube is inserted into the lungs to assist in breathing which is often necessary in younger patients that are going under anesthesia. Intubating can also introduce unwelcome bacteria in the lungs which can cause bacterial pneumonia. We have gone through this for another procedure to repair her retina which didn't work and ultimately left us back in the ICU and extended our hospital stay by another month. After all that we have been through with Juliana we got a real good laugh at the thought of a doctor scheduling a procedure for a patient without even looking into her medical history or consulting her current doctors who are managing the care of her CVL. Any child or adult with a CVL obviously has some health issues and is should be under the care of a doctor or team of doctors.
This week is going to be exciting in that we finally are going to get a more recent picture of how Juliana's intestines are looking. She is going to get a barium study done on her upper and lower GI tract which hasn't been done in a couple of years. The upper GI is done with a Barium Swallow which consists of Juliana swallowing a barium sulfate that is visable to xrays. She will also get a Barium enema to help us see the lower GI at the end of the month. We are less than 2 months away from surgery and I couldn't be more excited, nervous, anxious, and scared! Juliana hasn't had a lengthy hospital stay in a long while so that is going to be a difficult thing to deal with now that she is a stubborn 2 year old. It's hard to believe that I may be able to feed Juliana more than just a teaspoon of baby food and 1/2 an ounce of milk after this surgery is done. It's going to be hard to be separated as a family again but well worth it if we can get rid of the ostomies and more importantly get her off TPN.
For now we just wait and pray that we can continue to keep everyone healthy until then.