Day 42: Happy 6 Week Birthday!

Susanne is so over being tossed around like a yo-yo. Just as Susanne started to feel as though she was walking on air, she got punched in the stomach. She came to the hospital today feeling optimistic about Paxton's progress, but was quickly informed by the nurse that there had been some changes. Unfortunately, the doctor who told her the fecal occult blood test from yesterday was negative was mistaken. It actually came back positive. This morning one of the doctors decided to stop the breast milk all together and go back to giving strictly Nutramigen again due to their suspicion of a milk protein allergy. This was confusing since Paxton had shown up positive a couple of days ago, but at that time the doctor continued with just breast milk. Susanne was very frustrated and angry at the situation. She felt like she had been getting the run around about the plan. Each nurse and doctor seemed to have a different idea as to what it actually was supposed to be. Susanne decided to take matters into her own hands. She requested to speak to the doctor directly so she could try to get a better understanding of what was going on. Susanne reviewed Paxton's history in detail and asked the doctor to explain the reasoning behind some of the decisions that had been made. Overall, the doctors' main concern was the continued weight loss and the intermittent positive fecal occult blood tests. Further diagnostic tests would be necessary to evaluate the situation.

An abdominal x-ray was taken to assess Paxton's gastointestinal tract, which showed some signs of pneumatosis intestinalis. This is when air or gas accumulates between the lining of the intestines. Most often, this is seen with necrotizing enterocolitis (NEC) where portions of the intestines are undergoing necrosis. This was actually the suspected problem when Paxton had bloody stool in the NICU. The cause for this problem can be difficult to diagnose. There are three major differentials the doctors are considering. The first one on their list of concerns includes Paxton's inability to get enough oxygenated blood to his organs, including his intestines, due to his heart condition. The second concern is an infection of some sort. Finally, the third concern is a milk protein allergy.

Susanne was willing to switch to a dairy free diet to help rule out a milk protein allergy as a cause for the problem. She met with a nutritionist to discuss her new nutritional requirements. This will definitely be challenging, but well worth it if Paxton is able to go back on breast milk.

The doctor discontinued the tube feedings as well as any oral feedings for now. Usually, they continue withholding anything by mouth for at least 5 - 7 days before reintroducing anything into the gastrointestinal tract. For now, Paxton will be started on intravenous fluids and TPN again. The speech therapist stopped by today to inform Susanne that due to the recent changes, the attempts to bottle feed Paxton would also be postponed.

Two different cardiologists updated Susanne today with their assessments. They felt like Paxton was doing well overall from a cardiac stand point, but due to the recent x-ray results, they were going to continue to try to force more oxygenated blood to the body. This would be achieved by continuing to increase the antihypertensive medication until the oxygen saturation levels came down within the desired range.

One of the cardiologists mentioned the possibility of placing a PEG (percutaneous endoscopic gastrostomy) tube in Paxton once they start feeding again. This would be used as a means of providing nutrition rather than through the NG-tube. In his opinion, this would ensure that Paxton receives adequate nutrition and would increase his chances of gaining the appropriate amount of weight. There are side effects with this procedure, but luckily there is some time before the final decision has to be made.

Paxton had a consult with an infectious disease specialist. This doctor did a physical exam on Paxton and reviewed his history. He was interested in holding off on restarting antibiotics for right now especially since he had already been on multiple courses of treatment with some of the big gun antibiotics. He was concerned with antibiotic resistant bacteria becoming a problem. Susanne asked again about the use of probiotics, which this doctor was actually all for. He discussed some studies that had been done that proved that the use of probiotics were helpful in these types of situations. Susanne was relieved that someone finally was going to start him on this medication.

In addition to the x-rays, the doctor requested some bloodwork. This proved to be a more difficult task than everyone had expected. Three separate nurses tried to get a blood sample from Paxton. Each nurse stuck him two times with no success. Later this evening, they were going to have a doctor try to get an arterial blood sample so they could evaluate his complete blood count, C-reactive protein level, and a lactate level. Susanne held Paxton's hand during each attempt to get blood. He was such a brave boy despite being poked and prodded.

Between all of the visits with the various doctors and nurses, Susanne got to spend some quality time with her little man. He was wide awake for most of the evening, but Susanne was able to rock him to sleep. It made her feel good that he responded so well to her presence during all of his tests.

Overall, the lesson for today was to not get too comfortable. Susanne had convinced herself that Paxton could be going home within the next week because of what the nurses and doctors had recently told her. This made it that much harder to find out that this was not the reality due to the doctors' recent assessment of Paxton. Susanne thought three weeks of inconsolable crying while Paxton was in the NICU was enough. Unfortunately, today brought back all of those emotions. It is so important for her to dig deep right now because her head is barely above the water. It definitely helps that she has such an awesome husband.

Psalms 57:1 Be merciful to me, O God, be merciful to me! For my soul trusts in You; And in the shadow of Your wings I will make my refuge, until these calamities have passed by.